tag:blogger.com,1999:blog-86794996966838432912024-03-05T05:22:25.561-08:00M.E. Myself & I Ask You!A blog about living with M.E.
A blog about living with me.
A blog about living.
A blog...
for when your spark plugs keep firing but your battery stays flat.Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.comBlogger121125tag:blogger.com,1999:blog-8679499696683843291.post-68957155620860163742012-08-30T04:18:00.000-07:002012-08-30T04:18:08.818-07:00What a Difference a Day Makes!<div class="separator" style="clear: both; text-align: center;">
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You know the old song "What a Diff'rence a Day Makes!" ? Well, with M.E., it certainly does, doesn't it?<br />
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My last post was talking about my new Insulin Pump and trying a little very gentle Pilates? Well, this is my day to go down to the local Nature Therapy Gardens for a gentle Pilates session. The one with the VERY gentle understanding instructor who has recovered from an M.E.-like illness? Since I started this last month I've managed to keep going each week, accompanied by my cousin. Not long, I know. Little goals, little successes (lots of recovery and mini-crashes, too, tbh!) Today I've had to text her to confess I'm just too poorly to walk down there, let alone do the session to any level at all.<br />
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What a difference a day makes. Today it was all I could do to get out of bed and dress myself, I was in so much pain, so weak and wobbly, glands swollen, head banging. Today I can hardly balance sitting down, let alone spreadeagled on an exercise mat! Not quite ready for a consistent performance in the Paralympics, yet, then!<br />
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My blood sugar was ticking along in the normal range with my pump doing its stuff most of the time this week. But like I said, it can't yet replace your pancreas completely! Or work miracles! Much as I'm fond of my little Humphrey Pump-hrey and his amazing 24/7 basal rates!<br />
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I was making a meal of blueberries, cottage cheese and pineapple last evening. Being one of those people who likes to do a bit of spontaneous juggling in the kitchen, I'd decided on the ingredients to hand, and the carbohydrates involved. I'd done the diabetic maths. Then half way through the process, having set my pump off to give me a multi-wave bolus gradually over 30 minutes, I suddenly decided to warm the blueberries up and add some gelatine I had in the back of the cupboard to make them into jelly.<br />
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No immediate problem, but I then realised I needed to cool them and wait a while before marrying them to the pineapple cottage cheese. So, inevitably, while concentrating on each part of this process, resting in between, getting brain-fog and having to check and redo things etc, I ended up very slightly hypo (low blood sugar) by the time I settled down to eat. That was soon corrected, but then comes the inevitable spike afterwards as my body later freaks out that "an error has occurred." My liver squirts out an inappropriate amount of glycogen to compensate (in spite of the fact I'd already dealt with that blip earlier).<br />
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As I'm already on a bad few days with M.E. symptoms, alternately feverish and shivering (had to snap myself out of putting the heating on yesterday - it's still August, for goodness' sake!), I'm now struggling to get my sugars back into range. Several correction boluses later, and now on an elevated TBR (temporary basal rate), I'm still in double figures. I'm starting to recognise this pattern after any inadvertent overdo!<br />
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It won't last. I'll be back to "normal" as soon as I possibly can. But the fact remains that in the uncertain world of autoimmune diseases like M.E. and Type 1 Diabetes, nothing can be taken for granted. There are no quick fixes or perfectly balanced equations. No matter what textbooks, quacks or know-it-alls will tell you! Anecdotal is just that. We're all our own quirky anecdotes! Nothing's guaranteed, just a lot of patient trial and error and learning your own limits and challenges, helps and solutions (oh - and some screaming and throwing things, if preferred!)<br />
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Today will mostly be a rest day. I have friends coming from a long distance to have lunch with me tomorrow, which I want to try and be at my best for, naturally, so we can all enjoy. Lunch will be out, no cooking or juggling. I need a clear head for a meeting at the weekend too.<br />
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Hope if you're reading this, you're being good to yourself. Not expecting too much or too little of yourself. Not beating yourself up about things you have no control over. Not thinking that frustrations today won't be useful learning experiences, or even a cause of laughs tomorrow! Not letting things lost keep you from looking forward to tomorrow, no matter how uncertain it seems through this end of the telescope!<br />
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What a difference a day makes! Shares can go up as well as down!<br />
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<br />Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-8259877620528747902012-08-28T13:09:00.000-07:002012-08-29T05:05:33.629-07:00Pumping, Pilates and Pffffffffffffffffffffffffffffffft!I am SO sorry for the long gap in bloggery since mid April. Some days earlier in the year, it was all I could do to read and retain the last few words in my brain-fogged brain, let alone write!<br />
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Thank you so much for sticking with me and continuing to follow.<br />
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I'm more touched and grateful than I can say for your interest and patience here.<br />
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As many of you know all too well, M.E. is a fluctuating illness.<br />
One day, coping. Next day, crashed.<br />
One day, doing to the point of overdo. Next day, unable to raise your head from the pillow.<br />
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Combined, in my case, with Type 1 diabetes, I find my blood sugar often acts as a thermometer of how M.E. is bamboozling my body. The past months have helped me put this in focus in several ways. Struggling, but learning every day, for which I'm profoundly thankful (when I'm not gritting my teeth and screaming hoarsely at the sheer frustration of functioning at less-than-optimal level so much of the time!)<br />
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My cardiac arrhythmia, uncovered at the end of last year, after several particularly severe hypoglycemic episodes, is now being tackled with a 2.5 mg daily dose of Bisoprolol. That doesn't mean it's been cured or fully controlled. I can go for longer symptom free at the moment, at least. Then other days, my heart is glugging and giggling through my ribs for no obvious reason. I'm learning to live with it, but don't enjoy the sensation! The cardiologist seemed quite open to the idea that this might be related to M.E./POTS/OI, but the GP seems now to be denying the ectopic beats the cardio clearly picked up and mentioned (but didn't write in my records, apparently!)<br />
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After 28 years of Type 1, my diabetes consultant asked if I had ever considered an insulin pump. Considered it? No way could I ever afford it, without the NHS. Only a tiny percentage of UK Type 1s are pumpers. Fewer than in the USA or mainland Europe. Having tried everything to achieve good control, my glucose levels still plummet to dangerous low levels or soar to ludicrous highs with no apparent provocation. Although I'd always been less than enamoured by the idea of being attached to a pump 24/7, I finally jumped at the chance to try it. I haven't regretted it for a second in this first two months of pumping. Nothing ventured, nothing gained, in my book.<br />
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<tr><td class="tr-caption" style="text-align: center;">Humphrey Pump-hrey - the new "man" in my life!</td></tr>
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The insulin pump has helped me to see exactly how things affect my sugar levels. The pump releases minute personalised amounts of basal insulin (as little as .1 unit divided into 20 doses every three minutes over an hour day and night) and exact bolus amounts to suit carbohydrate intake through the day. As I'm learning to tweak these amounts to suit my lifestyle, I've very quickly seen the truth. My control can be near perfect and exact, until I do something overtaxingly aerobic, or requiring lots of brainwork, or physical effort. Then, up to 12 hours or a day or so later, my blood glucose will rise as much as 9-10 mm/ol in a matter of a couple of hours. It can go from mid-range of normal (6) to dangerously hypoglycemic (16) with no carbohydrate consumed or other factors present. Equally it will sometimes stay impossibly low (1.9-2.8) without provocation and unresponsive to dextrose, sugar or jelly babies galore. M.E. raising it's ugly head.<br />
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<tr><td class="tr-caption" style="text-align: center;">...and introducing Rita the Glucometer Maid. Acts as insulin pump hand set, via bluetooth and as an inveterate nag when glucose low or high!</td></tr>
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Because of being able to keep an even closer eye on insulin effect, carbohydrate effects and glucose profiles, I can appreciate the real effect of exercise. My daily results show clearly the way physical and mental effort and subsequent exhaustion is expressed by my immune system etc pushing up my sugar levels (instead of dropping them, as exercise should in a normal body). Although this can be erratic, I hope bit by bit to be able to learn to tackle these effects in order to maintain better control than ever. Perhaps along the way, I can help professional health workers to understand more of the realities of M.E. and its effects on other conditions like Type 1 Diabetes. After all, Type 1 is another autoimmune disease, and autoimmune diseases often flock together like birds of a feather.<br />
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<tr><td class="tr-caption" style="text-align: center;">No - can't manage much but simple balancing & stretching yet!</td></tr>
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More recently, quite by accident, I heard about a very local, very gentle over-50s Pilates group led by a lass who has had an M.E.-like illness herself, and is currently in remission. I went to the first session purely to give moral support to my cousin who wanted to give it a whirl. Because the instructress is so aware of my limitations (and those of others in the class with conditions ranging from fibromyalgia, multiple chemical sensitivity, IBS, and arthritis to rheumatism) I have been able to continue with the classes on my better days.<br />
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Sometimes I try to push on beyond my limits. I push MYSELF that is. She doesn't push me! I pay for it, of course. The instructor gently reminds me that pushing myself is not the right thing to do. She often steps in subtly and discreetly to make things more achievable when she notices me, or anyone, struggling. She always encourages me to rest and do less, not more! Slowly, I'm learning to pace myself in this. There are many times in the year I would not even be well enough to get there, let alone participate at any level. But I am trying, in these warmer summer days, and I am glad of it. My blood sugars don't protest and they remain level when I keep within my own very strict limitations.<br />
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I've found that my diabetic control doesn't suffer so much with this controlled, non-aerobic exercise. But two minutes of gardening, concentrating to read, carrying shopping or even the short journey down to the class can have a far worse effect, catapulting me into ketone-high hyperglycemia territory and leaving me wrecked for days.<br />
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That sums up where I am at the moment, then: Pumping, Pilates and (very often) Pffffffffffffft! Totally zonked.<br />
But I'm just thankful to do what little I can, whenever I can, if I can, while I can.<br />
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If you have days when you feel you can do more, why not give yourself a big hug and allow yourself to feel thankful, exhilarated and proud of what you CAN achieve in spite of this flipping illness?<br />
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But when you have days, like I do, when nothing seems to be achieved, when it's one step forward and umpteen steps back, please don't beat yourself up. Don't be hard on yourself.<br />
IT'S NOT YOUR FAULT!<br />
My blood sugars show none of this is in my head. None of this is down to bad attitude, faulty illness beliefs, laziness, choice or weakness.<br />
It's not in your head either.<br />
Find what helps you to thrive and enjoy whatever part of it you can.<br />
Don't let the nay-sayers win by dragging you down.<br />
We have M.E. and often other disabling illnesses too trying to poop on our dreams. But M.E. can never have us. M.E. can never define us or limit who we are. Not now and not ever!<br />
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<br />Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-55623786213373953822012-04-18T10:20:00.000-07:002012-04-18T10:20:05.857-07:00Ignorance isn't bliss - it's toxic!Here we go again.<br />
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Sorry this blogpost may not be very thorough, spellchecked or rational.<br />
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Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":<br />
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<a href="http://www.express.co.uk/ourcomments/view/314886/Dr-Rosemary-Leonard">Q After a flu vaccination my 45-year-old son began suffering muscle weakness, fatigue and lethargy. Numerous blood tests and visits to his GP followed and he was told he was suffering symptoms of ME but no help was offered. </a><br />
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Can you guess the content and suggestions?<br />
Of course you can. No peeking.<br />
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1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.<br />
2) cognitive behaviour therapy (CBT), counselling and physiotherapy can be
helpful along with painkillers for muscle pains and also antidepressants
which can help boost mood.<br />
3) One of the most beneficial treatments is graded exercise where the
patient has a specific programme to slowly increase the amount of
activity they do each day.<br />
4) Reducing stress<br />
5) a healthy diet<br />
6) reducing alcohol<br />
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I'm not denying there will be nuggets of help there in among the old misguided anti-fatigue measures. But the lumping all diagnosed M.E./CFS cases under the same hallucinatory umbrella is getting us nowhere nearer to awareness of the severity of the disease in many cases. Nowhere nearer to a diagnostic test. Nowhere nearer to effective treatment. Nowhere nearer to a cure for any of the neuroimmune illnesses that fall under the influence of NICE's idea of M.E./CFS.<br />
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My own M.E. (yes, that's anecdotal, I know, I know!) symptoms, even before diagnosis and while still able, intermittently, to work, were ALWAYS worse after the annual flu jab (as a T1 Diabetic in the "at risk" group) and I always got a panoply of bad (non-flu?) viral infections both before and after the jab. It was the week following my jab in 2005 that I collapsed and became bedridden and housebound for the best part of a year and from which though improved, I have never fully recovered.<br />
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My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".<br />
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Even the OT admitted by the end of 6 months or so, that it wasn't helping me to be cured or really improved. Why? Because it was clear to her from the off that I wasn't depressed. Wasn't "frightened of doing too much". Wasn't "deconditioned". Didn't harbour those "false illness beliefs" so beloved by those who think the root causes of M.E. include psychological difficulties.<br />
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I couldn't even make the excruciating journey to the last GET feedback session because it was making me more ill. The OT could see I was motivated to return to work and my happy, successful, joyous fully functioning previous life. I had to be all but forced to take early retirement, for goodness sake. On what planet is that a "lifestyle choice"???<br />
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I had low dose amitriptyline (antidepressant) to help with relaxing painful muscles alongside painkillers like aspirin, ibuprofen and paracetamol. They did nothing for me but make staying awake even harder, weight gain, fuzzy headedness, etc even worse. So in the end they were discontinued. After all, my mood had never been low.<br />
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My mood had never been low, that is, until rationally I worked out the state of play with M.E. No, I, like so many others, did not choose this diagnosis and knew nobody with it until much later on! Then, seeing my career, my freedom, my credibility as a fully-functioning citizen, my very truthfulness questioned by society as a whole, my mood did dip at times, understandably, till I understood I wasn't alone with this variable but very characteristic set of suffering symptoms (of which "fatigue" is quite low down the list, thank you!!!)<br />
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I had been eating healthily for many years, most of my adult life, as an insulin-dependent diabetic. That's a "tick" for number 5.<br />
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Number 6? Well, after collapsing with M.E, one glass of wine had me so dizzy, sick and disoriented, my central nervous system obviously knew what it didn't tolerate any more without me voluntarily reducing intake. I could tolerate the occasional glass of wine, or lager, even once or twice a spirit like brandy or vodka at Christmas before M.E. raised its much maligned head. So 6) reducing alcohol is hardly an issue to aid recovery for some of us either.<br />
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4) Reduce stress? Don't make me laugh (I've actually been known throughout my life, and every illness and circumstance as having the best positive attitude and a wacky warm GSOH)<br />
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<br />
Tell 4) to doctors, nurses, specialists, consultants, the DWP, ATOS, utility companies, landlords, and every last well meaning delusional who will thrust this article in my face to "help me cope".<br />
<br />
I'm coping as I always have and always will. Was my diabetes down to "illness beliefs"? Was my shingles down to "illness beliefs"? Was my recently discovered tachycardia, ectopic beats & cardiac arrhythmia due to my "illness beliefs"? Was my bout of giardia in Bolivia, which may or may not have triggered my immune system's meltdown, my "illness belief"? Is the space in the teeth of my lower jaw (where I now know my great grandfather had an extra tooth) down to my defective "illness beliefs"? So what's the likelihood I've suddenly developed something that has no possible physical cause? <br />
<br />
I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.<br />
<br />
But when are you going to actually treat my cardiovascular, immune, autonomic, cognitive disease? When are you actually going to prove you're listening to 250,000 people in this country and so many more worldwide? When will children and young people with M.E. stop dying from something you say has no <a href="http://memyselfandiaskyou.blogspot.co.uk/2012/04/without-proper-robust-reason.html?spref=tw">Proper Robust Reason?</a><br />
<br />
When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill?<i> (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)</i><br />
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<br />Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com3tag:blogger.com,1999:blog-8679499696683843291.post-28489495270856257242012-04-17T15:13:00.001-07:002012-04-18T06:01:24.909-07:00Without A Proper Robust Reason<div class="separator" style="clear: both; text-align: center;">
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For a long time now, I've been planning to baptise the young granddaughter of some dear friends. So often, as a minister, I've had the joy of christening babes in arms, who their parents bring so we can celebrate the love that surrounds them in the presence of their wider church family, giving thanks for the gift of new life.<br />
<br />
Only on a couple of occasions have the children themselves asked for the baptism.<br />
<br />
This was the case with Tilly. Now 8 years old, she had been looking forward to being baptised at the church where she has been coming to Rainbow Club (Junior Church or Sunday School) all her life with her grandparents, supported by her mother and family members. She and the family wanted me to perform the service where her baptism took place. For one reason or another, not least my illness through M.E., this has taken more than a year to co-ordinate.<br />
<br />
Finally this Sunday, the sunny Sunday after Easter, dawned and Tilly, in her beautiful christening gown like a happy and blessed princess, came to church (the church where I was baptised myself) with her loved ones to be baptised and celebrate God's inclusive, playful, tender love and the rainbow of unique gifts he gives to each one of us.<br />
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I had rested up all week to try and be at my best for the demands of the weekend, the service in particular. I had travelled the day before, ten miles from where I live to my Mum's village where my home chapel is, so I could try to rest and recover from the harrowing ordeal of two bus journeys.<br />
<br />
Friends and stewards at church kindly and considerately did all they could to help. A lift to church. Notices read. Baptism candles and water for the font arranged. All things made as easy as possible so I could concentrate on taking the service at the heart of which the baptism was a jewel of joy.<br />
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<a href="http://www.setonparish.org/pictures/Baptism_Candle.bmp" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.setonparish.org/pictures/Baptism_Candle.bmp" /></a></div>
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Before we started, Tilly's lovely family asked me and my Mum if we'd join them for the celebration party afterwards, over lunchtime. I was delighted, and determined to be "normal" for that time. From setting off with my lift to church at ten, to the lift home from the little christening house party at 4.30pm was a mere 6 and a half hours.<br />
<br />
The whole day couldn't have gone better. People who didn't even come to church very often, and those who did, said how much the worship had touched them and included them in different ways and Tilly had the baptism she had dreamed of for a long time. So far, so very, very good.<br />
<br />
My voice was rusty and failing a little by home time, but that always happens, since M.E. first struck.<br />
<br />
I lay and slept back at my Mum's most of the evening. We watched the commemoration programmes about the sinking of the Titanic exactly 100 years before.<br />
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<br />
That night I slept, fitfully, but I slept. A contented sleep. A satisfied sleep. Better to do what you're called to do, taste joy and contribute to the world turning and catch up later with rest, than never really to live at all. That's always my motto.<br />
<br />
Monday dawned. Mum was to come back to my home with me and then return to hers later in the day.<br />
<br />
Half way back on the fifty minute bus journey, I was getting really ill. My heart kept feeling fluttery and as if it was stopping. I felt terribly sick, unsteady and nauseous. That's roughly the gap I often get between exertion and post-exertional neurological and autonomic symptoms or "payback".<br />
<br />
My head was thumping, my ears ringing. I felt spaced out and terribly ill. My limbs ached so much I couldn't find any way to hold or place them to make it better. My chest muscles and shoulders hurt so much. I had to close my eyes to block out the light. The motion of the bus over the roads of our valleys and hills felt like the Titanic's deck tilting and rearing for the final plunge under a heaving ocean.<br />
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I didn't want to worry my mum, but when I staggered off the bus, there was no disguising my ashen face, and I suggested I had to sit for a while. I'm not one to dwell on such things, but I did work out the quickest route to the NHS Walk-in Centre from the bus station in case I had to make the trip!<br />
<br />
The ground would not stay still. I was lurching from feverishly, burning hot to icy cold. My fingers were stiff and felt swollen though cold as stone. I had travelled back with my stick collapsed in a carrier bag to minimise my luggage. Now I got it out. I could not balance at all.<br />
<br />
I tested my blood sugar, praying it would be low so that would explain why I felt this way, why my heart was thumping and jerking in my chest. But my BG was 9. Nowhere near low or even dangerously high. This was not diabetes related. So there was nothing I could do.<br />
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<br />
After an hour slumped against my mother on seats in the interchange, I felt just about well enough to move on and get home on the next bus (a fifteen minute journey). Even this was almost too much, but I got home at last.<br />
<br />
One last random craziness happened when I found there were road works outside my house and the workmen had dug a deep trench along the pavement leaving no way for me to get across it into my house. Seeing us there, the young workman apologised, cleared the earth away as quickly as he could and then lay down in the trench like a modern day Yorkshire Sir Walter Raleigh for me to step across. Laughter always makes the most traumatic moments bearable, even joyful!<br />
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<br />
I haven't got right yet. My muscles are like lead, but so painful. My head feels as if my brain is a size too big or my skull a size too small from the one that fits. I can't keep warm. My blood sugar refuses to come down into single figures, whatever I inject or eat, since I've returned. Never tell me diabetic control is an exact science. I've had Type 1 diabetes for 30 years and know for a fact it isn't.<br />
<br />
I have slept unrefreshing sleep at night and my body's screamed for sleep in the day though my thoughts are whirling, though brain fog rules. My muscles are shaky, have been ever since the bus ride. My mum could apparently see my hands shaking when I was holding cuppas. My glands are enlarged and my eyes keep blurring and running.<br />
<br />
Thank goodness I don't have to repeat even an hour's effort reliably and regularly at the moment. Whatever the powers that be may want to think, or cynics assure themselves, for those of us with fluctuating diseases affecting the central nervous system, the cardiovascular, autonomic and immune systems and so much more, life is never predictable, pace-able or reliable.<br />
<br />
But this weekend, for 6 1/2 hours I lived life and gave my all, and was blessed and I could not,would not, change one moment!<br />
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<br />
Then today I read this online:<br />
<br />
<a href="http://www.thecomet.net/news/letchworth_20_year_old_s_sudden_death_caused_by_dysfunctional_immune_system_1_1351436">Letchworth 20-year-old’s sudden death caused by dysfunctional immune system</a><br />
<br />
In the 21st century, how long will M.E. and related illnesses, cause doctors, pathologists, coroners to say things like this?<br />
<br />
“<i>There is a history of being unwell for some time without a <b style="font-family: Georgia,"Times New Roman",serif;">proper robust reason</b></i>,” as a pathologist did about Tara Morgan, who died at 20 last September from: "<i> respiratory and cardiac arrest due to autonomic neuropathy.”</i><br />
<br />
A "proper robust reason"?<br />
<br />
How robust a reason does M.E. have to be before it's taken seriously, for pity's sake?<br />
<br />
The pathologist alludes to CFS (M.E.) as being most probably involved in Tara's cause of death:<br />
<br />
"<i>He added that Tara’s death could be related to chronic fatigue syndrome, a disorder defined by persistent fatigue.</i>" M.E., of course, is NOT <i>"defined by persistent fatigue</i>," but by a many of the symptoms and final causes of lung, heart and immune system failure from which Tara suffered, and ultimately died.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.thecomet.net/polopoly_fs/tara_morgan_1_1351435%21image/2033427024.jpg_gen/derivatives/landscape_225/2033427024.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="http://www.thecomet.net/polopoly_fs/tara_morgan_1_1351435%21image/2033427024.jpg_gen/derivatives/landscape_225/2033427024.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tara Morgan of Letchworth, UK</td></tr>
</tbody></table>
<br />
Yet with all these facts, there is still an implication of mystery and helplessness:<br />
<br />
“<i>It has affected the immune system but that had been dysfunctional for
quite some time. I’m at a loss other than this possibility to explain
what happened to your daughter.</i>”<br />
<br />
But in the way M.E. erodes the body's ability to cope with recurrent viral infections etc, we hear:<br />
<br />
“<i>This is a case of something in the body going wrong over quite some time.</i>"<br />
<br />
We hear: "<i>Tara, who was born with a learning disability, had a history of
headaches, muscle aches, joint pains and a bloating of the abdomen.</i>"<br />
<br />
A long "<i>history"</i> that sounds so much like M.E. (or CFS, if you insist) that the experts here themselves name it as a likely culprit without putting its cumbersome name on the certificate this time. <br />
<br />
The cases of young people dying from the complications of immune system dysfunction, illnesses like M.E. that medical authorities shrink from naming freely and openly seem to be getting more frequent in the press these last months and over the last few years. But always apologetically. Always with some proviso or get-out clause, it seems. Then the urgency for answers dissipates. Until the next tragic loss.<br />
<br />
We need biomedical research and we need it YESTERDAY!<br />
<br />
So glad to know all our combined efforts for <a href="http://blog.ldifme.org/">Let's Do It For M.E./Invest in M.E.</a> have currently raised £36,099 towards the £100,000 total for the biomedical research and treatment centre in Norwich.<br />
Together we can, and MUST do it for M.E.<br />
<br />
For Tara, Sophia, Lynn, Victoria, Lois in recent days and countless other unpublicised deaths from the complications of M.E. For all of them, and for the children of our future, we can never give up living hope within us and our communities.<br />
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<br />Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-24501154477360356632012-04-10T10:31:00.000-07:002012-04-10T10:31:42.851-07:00Emotional lability: watering our personal happiness flowers!<div class="separator" style="clear: both; text-align: center;"><a href="http://etc.usf.edu/clipart/44300/44390/44390_celtic_div_lg.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="56" src="http://etc.usf.edu/clipart/44300/44390/44390_celtic_div_lg.gif" width="400" /></a></div>Sorry I've not been up to much blogging much yet this month!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://freewareme.com/uploads/posts/2009-03/1237472773_easter_egg_clipart.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="273" src="http://freewareme.com/uploads/posts/2009-03/1237472773_easter_egg_clipart.jpg" width="320" /></a></div><br />
Easter came and went in a semi-horizontal haze of pain. Brain fog swamped me, nausea, sweats and shivers, aching legs, sore chest, ringing ears, emotional hours when all I could do was sob over the fate of the Titanic 100 years ago! I'm not often down, but last week, everything I read, combined with how hopelessly ill I was feeling, seemed to drag me under.<br />
<br />
Nothing made sense. Nothing seemed nourishingly joyful. Niggles on message boards and comments on statuses seemed negative and nitpicking. I found my normally buoyant mood deflated each time I came to the laptop. Sometimes I was too sick even to read, much less respond.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.clker.com/cliparts/L/k/X/q/x/U/smiley-glasses-sad-md.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.clker.com/cliparts/L/k/X/q/x/U/smiley-glasses-sad-md.png" /></a></div><br />
I'm known as a peacemaker and natural mediator. Suddenly I felt like I was in danger of drowning in other people's conflicts, as if I couldn't keep one foot on the bank to help pull them back from the flood without ending up sliding under the current of grief and rage myself.<br />
<br />
So much negativity! People fighting over and over the same few inches of ground we've been stuck on for decades with the sickening politics of M.E. People misunderstanding other people's motives when both were surely on the same side. I guess most of us feel those suffocating, helpless, tail-spinny feelings every so often.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.clipartoday.com/_thumbs/014/Conflict2_l_tnb.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="214" src="http://www.clipartoday.com/_thumbs/014/Conflict2_l_tnb.png" width="320" /></a></div><br />
With M.E. we put so much of our hope these days in "breakthroughs" and "research". Yet all the evidence seems to spell out that when breakthroughs come, as they do, when research shows the disease is physical, the powers that be simply won't let it get us anywhere. Heads appear over the parapet of M.E. research and awareness, only to be shot down again. Petitions and campaigns are built on people's honest, hard-won "spoons" only to be rejected by the government. They CAN hear. They DO hear. They just don't want to change. It doesn't pay. It doesn't suit.<br />
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Sometimes, even within the very supportive M.E. community spread across many social networks, groups and gatherings, we see different strong-minded, opinionated characters tearing one another apart online, forgetting we're all fighting the same, or similar battles. We don't have the time left, some of us, for the luxury of in-fighting. It fritters away what little strength we have. It wastes our focus and energy. We have precious little energy even at our best. We CAN do it together. But we are on a hiding to nothing if we pull ourselves apart!<br />
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Conflict, for me personally, leeches and sucks away everything that keeps me going. When I was so sick this last week or so, I just had to peel my eyes away or be submerged in despair. If I despair, I'm no use to any of my friends online and elsewhere who depend on me to stay positive, compassionate and empathetic so we can all move forward together and maybe make a difference for those who like us, are caught up in this illness, willy-nilly. (That's like the hokey-cokey but with the fun taken out!)<br />
<br />
I'm usually known for being resilient and hopeful. Last week these gifts almost deserted me, as the overwhelming <a href="https://www.google.com/search?source=ig&hl=en&rlz=1G1GGLQ_ENGB307&q=emotional+lability&oq=emotional+lability&aq=f&aqi=g10&aql=&gs_nf=1&gs_l=igoogle.3..0l10.384.4341.0.7959.16.16.0.3.3.1.196.1162.9j4.13.0.#hl=en&rlz=1G1GGLQ_ENGB307&q=emotional+lability&tbs=dfn:1&tbo=u&sa=X&ei=EmKET53dFcTF8gP00-DoBw&sqi=2&ved=0CCcQkQ4&bav=on.2,or.r_gc.r_pw.r_qf.,cf.osb&fp=16630ba7e7a9a678&biw=1138&bih=508">"emotional lability"</a> of M.E. (as in other neurological conditions) pinned me mercilessly to the mat and drained my personal inner Pollyanna of her lifeblood.<br />
<br />
So I drew back for a little, or my struggling sick body drew me away from it all for a while to try and recover my usual sunny equilibrium.<br />
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Sometimes we all need to make sure we're watering the roots of our own happiness flower! Doing what puts the smile back in our hearts when we're feeling down or crushed and ridden by our emotions. Maybe chopping down the weeds a bit. Maybe cutting down on spending time staying with situations that are drains not fountains for our spirit. Not focusing energy on people who bring us down. Not wading daily through dialogues that have no intention of going anywhere joyful, or thankful or gracious and humorous but rather seem to prefer to dwell on blame and shame. Life and spoons are too short. Mine certainly are, as I learnt again in this latest M.E. crash.<br />
<br />
I'm still not up to much blogging.<br />
Sense may still cease to be made at times! <br />
I may still blubber unashamedly over the Titanic.<br />
I may still feel steamrollered by people's personal battleplans. <br />
But I can still laugh and let the love flood in.<br />
I can still count my blessings.<br />
We all can. <br />
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First, here's a brand new video I saw today that's really worth a watch and a share: complied by friend and fellow sufferer Giles Meehan : <a href="http://www.youtube.com/watch?v=ZgAa-l-N1Eg&feature=youtu.be">This is M.E. (Myalgic Encephalomyelitis) - 34 people with M.E. tell it like it is!</a><br />
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Plus ten personal things that make me glad I'm alive that have made me smile these last few weeks:<br />
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<div style="font-family: "Trebuchet MS",sans-serif;">1. A friend's little boy making himself (and us!) laugh with his made-up (no, not obvious at all!) knock-knock jokes and spotting a Great Spotted Woodpecker through my telescope before any of us adults (Knock -knock! <i>Who's there?</i> Interrupted Sheep. <i>Interrupted Sh... </i>Baaaaaaaaaaaaaaaaaaah!)</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">2. A bunch of tulips and daffodils given to me by a visiting friend that turned into a smorgasbord of extra textures and colours when some of the expected golden trumpets turned out to be cream and lemon swirls of jonquil and narcissus too!</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">3. A Song Thrush visiting my patio day after day, eyeing up nearby bushes as a venue for his nest ready to bless us with sprinkles of echoed melodies and speckled young</div><div class="separator" style="clear: both; text-align: center;"><a href="http://www.seligorscastle.zoomshare.com/files/Little_Rhymes_Little_Rascals/thrush_SongThrush_1_.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="http://www.seligorscastle.zoomshare.com/files/Little_Rhymes_Little_Rascals/thrush_SongThrush_1_.jpg" width="265" /></a></div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">4. The weather cocking a snook at the weatherman who swore it would be rain, on a day when only sweet sunshine and flossy cathedrals of white cloud were on the agenda in reality</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">5. An electric heat mat given by a friend some years ago now, glowing its comforting warmth into the agonising crook of my back and aching gluteals as I lay in bed, unable to bear the light through the bedroom windows</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">6. The lovely Easter messages and greetings, emails, posts and tweets from friends to brighten and bless my days, even though my plans to go to some Easter services went awry this year through illness and exhaustion. God is good! He mystifies me daily with his grace to me!</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">7. Yorkshire Water sending me a cheque in compensation for low water pressure last month, and the dread as I opened my winter quarter gas and electric bills evaporating into hilarity when I found both were so much smaller than I'd estimated!</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">8. The Wren, that we hardly ever see, but daily hear singing with a loud trill that punches way above his tiny body weight, hopping just inches away from me through the glass of the back door.</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiVZH94hSTXgqe1g1sFhJkaBzRNVn9iprAj4WA8XGrGw6eKtL9EnySIMR2biLq0wwate6U69nNmUvt7ift9PHynR4IKAKwinc67smWNTEAjXmUoa04W2zKe4s1bQpuGS1H9Gr9V17fS20/s400/clipart+Nature+Study+House+wren.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhiVZH94hSTXgqe1g1sFhJkaBzRNVn9iprAj4WA8XGrGw6eKtL9EnySIMR2biLq0wwate6U69nNmUvt7ift9PHynR4IKAKwinc67smWNTEAjXmUoa04W2zKe4s1bQpuGS1H9Gr9V17fS20/s400/clipart+Nature+Study+House+wren.jpg" /></a></div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">9. Discovering quite by chance on a free podcast download, "The Occupant of the Room" by Algernon Blackwood, a short story I heard on Radio 4 when I was in my 20s, which I've been trying to trace for 30 years, not being able to recall author or title. Spinechilling!</div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">10. My diabetologist, after 30 years of unannounced hypos, Dawn Phenomenon, Somogyi's Effect and all the needles, whistles and bells of Type 1 Diabetes, finally saying those immortal, rare words: "Would you like to try an insulin pump?" when only around 3% of insulin dependent diabetics have one in the UK.</div><br />
I'll stop there, cos I did say ten things, not dozens! Cos my wrists ache like crazy by now.<br />
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Oh yes. I have such a lot to be grateful for. Nothing is going to rob me of my joy.<br />
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Please make quite sure that nothing and nobody sidles by to rob you of yours, either!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="http://etc.usf.edu/clipart/44300/44390/44390_celtic_div_lg.gif" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="55" src="http://etc.usf.edu/clipart/44300/44390/44390_celtic_div_lg.gif" width="400" /></a></div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com1tag:blogger.com,1999:blog-8679499696683843291.post-50901875282216147642012-03-13T05:17:00.004-07:002012-11-13T11:51:04.421-08:00Why not give your GP something worthwhile to watch?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVlztDOOa9YEL6f413NoUFEJ8FqksgDNYQCojg6Wk82pbXgwrnx0jOWnug6CwlpAOq-wseJGWEhJ5cr0RvpbNO5IviVccff0DDvVNbjHg-QC_IfV5Stcb4K44_ko5KaVhfAMKqas5jPY/s1600/DSC03774.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzVlztDOOa9YEL6f413NoUFEJ8FqksgDNYQCojg6Wk82pbXgwrnx0jOWnug6CwlpAOq-wseJGWEhJ5cr0RvpbNO5IviVccff0DDvVNbjHg-QC_IfV5Stcb4K44_ko5KaVhfAMKqas5jPY/s320/DSC03774.JPG" width="320" /></a></div>
Just got back from GP.<br />
<br />
Had my little list with me of things I needed to ask/say. Saves the usual pantomime of playing "Twenty Questions" when I forget every other word and name! Even medicines I've been taking for a decade! Didn't entirely work. Still managed to do a bit of "Errrrrrrm...." where she had to do an impromptu prompt. Mostly correct!<br />
<br />
First on my list: feedback on my follow-up at cardio a fortnight ago. The cardio said the various heart tests showed I had tachycardia, heart going like a steam hammer, with extra beats. Which would explain the glugs and giggles I can regularly feel there. He didn't say exactly what was causing it. But that combination sounded like A-Fib or A-flutter of some type. He put me on a low dose (2.5mg daily) of beta blocker bisoprolol. "See me in 6 months".<br />
<br />
Trouble is, GP hadn't had a letter to confirm this. So she was whistling in the dark. She doesn't think it'll be A-Fib, as that's irregular beats on irregular beats. (I could just see her picturing the med school diagrams in her head!). It would be ectopic beats, she said. I reminded her it was tachycardia, too, and mentioned how common P.O.T.S. (Post Orthostatic Tachycardia Syndrome) and OI (Orthostatic Intolerance) is in M.E. She actually took this suggestion on board, and seemed to think it might be a possibility. Not a diagnosis, of course. That would be asking too much, wouldn't it? Can't force them to do Tilt Table tests, can we?<br />
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By the time my month-long initial bisoprolol prescription runs out, she says, she should have the letter from cardio, and it will then be on my repeat script. We hope! Maybe I can make another appointment then to find out what's what. She mentioned what the cardio didn't, that beta blockers also tend to block diabetic hypo early warning signs like speeding heartrate. I'd read that online, but reminded her that one of my biggy problems is that I get no such helpful safe warning till my blood glucose suddenly plummets to 1.9. Shutting the stable door after the diabetic pony has bolted, as it were. So that shouldn't be any additional problem to someone who has to test as often as I do already! "To be continued," then!<br />
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Second on my list was painkillers. Mentioned that friends with M.E. had been taking Pregabalin (Lyrica) or its cheaper, sluttier sister Gabapentin. Asked also about commonly M.E.-prescribed Tramadol - but as I react very badly with sickening side-effects to anything opoid-like, this wasn't an option. She duly started me on Gabapentin. Slow build-up. 100mg tab today and tomorrow. Up to 200mg in two doses on Thursday and Friday. Then up to 300mg in 3 doses by the weekend. She did say some people take as many as 9 a day. Hope it won't come to that!<br />
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Very glad my surgery now has a fabulous, efficient chemist within the waiting room. No trailing into the shopping precinct to the Co-op Chemist. They never used to have half the stuff, even the meds you regularly ordered! So that used to mean two, even three return trips for meds you were "owed". Today, from this in-house chemist, I came home with Gabapentin in hand!<br />
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I glossed over item three on my list. The Jobcentre Plus adviser had handed me an application form for DLA (Disability Living Allowance) and told me to get help from my GP and from the M.E. Association. I hate claiming anything. I know so many friends with all sorts of life-crushing disabilities much more easily recognised than M.E. who have been turned down at the first hurdle, dropped to the lowest rates, or lost it after qualifying for years as the new Welfare Reform Act does its evil ATOS-infested devastation in lives already wrecked by illness.<br />
<br />
I muttered that I hate claiming anything if I can possibly manage. She already accepts that, having known me when I was still able to work, before my most recent relapse meant I was finally diagnosed and then forced to take reluctant early retirement from the ministry. GP says she would support my application by filling in her bit. But I still probably won't. Does she realise fully, even now, how badly I am affected when not inside her office for ten minutes every so often? Soon DLA will become the dreaded and much-criticised PIP (Personal Independence Payment) for which, it seems, only the semi-comatose, along with the odd corpse will qualify.<br />
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Last but not least on my list was the DVD of "Voices from the Shadows", the devastating documentary about paediatric M.E. and the ways in which the medical profession is currently failing people with neurological M.E. I simply passed one of my spare copies over to the doc, with a quick word about what it was and why she might find it interesting. She seemed intrigued and grateful. I can't be sure she will watch it, but I'm really hopeful she will. I'll be able to have a gentle check when I see her again. Maybe it's something more of us could try? Ingredients needed: DVD; GP with potential open mind. Stir. Leave to rise and mature! (Other bona fide M.E. information is available!)<br />
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<br />
I know, with me as her patient, and others over the years, she has come at least a little way towards greater understanding of M.E. She had a long way to go, let's be honest! In 2005-6, the only option she had, under NICE guidelines, was to bundle me off, as soon as I wasn't permanently bedridden and housebound, to the local CFS/ME "fatigue" clinic in the nearest town for a spot of CBT and GET after 6 months of tests to eliminate all other possibilities.<br />
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Today reminded me my own GP's not there yet! Still a way to go. She still chuckled rather dismissively when I mentioned some people had seen improvement with LDN (Low Dose Naltrexone):<br />
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"Oh yes! That's not licensed!" she laughed, "But I suppose people will try anything when they're desperate!"<br />
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We ARE those people. We ARE desperate. We need help and support and we need it NOW! We need biomedical research NOW! I pray that if she watches "Voices from the Shadows" and just once hears the haunting, heartbreaking sound of Sophia Mirza reasoning and pleading with police and psychologists who have broken down her door in the dead of the night, my GP will be changed forever. Maybe then she'll pass it on to other colleagues. Maybe they too will be changed. Maybe, just maybe, the long road towards the target of awareness of M.E. for all the medical profession and society will be lit up by one or more new lights. One day nearer to care and cure.<br />
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Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-71416243209399242872012-02-27T09:55:00.002-08:002012-02-28T06:54:47.492-08:00Another Voice from the Shadows; Another Candle in the Darkness<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw91NPXQgBm-EjFvboa_UIMVwaSrj-1VVy-1F61GaVkxYzd-dlCbzWUaCu9_rjaRaGYubiaVK4WQDeeYeRryLAzhmto9HNCoz0C2o7qRWmqRt5WjnhATDqO-FTpBTzWsGUppB8jhzEqcw/s1600/DSCN4164.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgw91NPXQgBm-EjFvboa_UIMVwaSrj-1VVy-1F61GaVkxYzd-dlCbzWUaCu9_rjaRaGYubiaVK4WQDeeYeRryLAzhmto9HNCoz0C2o7qRWmqRt5WjnhATDqO-FTpBTzWsGUppB8jhzEqcw/s400/DSCN4164.JPG" width="400" /> </a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div>So proud of my lovely mum yesterday.<br />
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I've been too sick to go anywhere but the sofa since last week. That was when I managed to take one of the occasional church services I do voluntarily around the circuit where I was a Methodist minister till my latest major M.E. relapse. Had a wonderful hour, leading worship, kids' time & holy communion with around 100 in the congregation. The stewards and folks who help with PowerPoint, etc were so helpful, bless em all. They carried me in little unseen ways that helped me achieve playing my part as I was called to do long ago. As you can guess, I'd had to rest up and prepare for weeks prior to this. I haven't been up to functioning much since then till the next big energy "ask".<br />
<br />
So I didn't get to my local church yesterday, but my mum did. She was staying the weekend to help me with shopping, tidying and even "strip washing" as I wait for my landlords and their contractors to get their act together to mend my boiler so I have hot water again after almost a month! I joke that unlike my last boiler fail, when the landlords/boiler contractors left me without heat for six weeks, this time I'm dreaming of having a shower before Easter! Wheeeeee!<br />
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After the service, a lady took my mum aside to tell her how she had read about a young lass in the paper who had been "cured" of chronic fatigue. My mum gave her the full lowdown on the realities of neurological myalgic encephalomyelitis. She explained how CFS has, since 1988, become the floppy expandable umbrella diagnosis for all diseases that entail some degree of fatigue. Mum explained in a straightforward way how many of these "cures" and "treatments" appear to work because they are actually applied to fatigue possibly caused by simpler things with a psychological root, or post viral states that self-correct over time. She really told it like it is. Told it plainly, but with all her usual courtesy and wisdom. She explained about my raising money for biomedical research through "<a href="http://www.investinme.org/index.htm">"Invest in M.E."</a> and the <a href="http://blog.ldifme.org/">"Let's Do it for M.E."</a> campaign. She challenged some of this lady's misconceptions. She even mentioned the heartbreaking video about severe M.E. "Voices from the Shadows" and even had this lady interested in seeing it. Minor result!<br />
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Drip by drip. Inch by inch. Hope against hope. We keep chipping away at neurological M.E. awareness and education. I've now bought an extra copy of <a href="http://voicesfromtheshadowsfilm.co.uk/">Voices from the Shadows</a> to give to my GP & practice nurse, who are open to learning, but tied by the system that bows to the anti-wisdom of CBT & GET alone. I may start carrying a spare copy in my handbag whenever I'm well enough to show my face outside, in case someone more influential comes across my path who may be able to spread the light into more dark and ignorant corners!<br />
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Today I was so sad to read via a link on the <a href="https://www.facebook.com/groups/116985236945/">Sheffield M.E. Sufferers/Support for M.E. Group on Facebook</a> about Lois Owen, yet another person to die from M.E.<br />
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Lois's tragic but ultimately inspiring story is told in This is Derbyshire: <a href="http://www.thisisderbyshire.co.uk/Tragic-tale-woman-chronic-fatigue-syndrome-tired/story-15332461-detail/story.html">Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat</a> Tragic because of the attitude of the medical profession to patients with an illness they seem incapable of handling, and unwilling to keep abreast of the most basic up-to-date knowledge of the needs of patients whose every bodily system is affected and wrecked by M.E. Inspiring, because of Lois herself and her compassionate creativity made available to others, and the way her whole attitude gives the lie to outmoded ideas of M.E. as "tiredness" or "malingering." <br />
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Lois died of M.E. aged 34, after a life filled with positivity, talent, enterprise and creativity. She was a university graduate who set up a charity called "Therapeutic Arts" offering free classes in drama, poetry, painting, music and sculpture. She even wrote a book, one of several she was planning, in a time of remission to help others who suffer chronic illness to make the most of what strength they have, as she did. What a legacy left by a young woman whose life was ended, though never defined by M.E., bringing help and hope to others! Her loving family made sure the book was published to reach others who live with M.E. and other chronic illnesses. Her book "Bed Without Boundaries" is available from the 25% M.E. Support Group <a href="http://www.25megroup.org/infobooks_bed_without-boundries.html">here.</a><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjompJbnq0fVllZFhfjZAfFtW_MFiLGdQM-Hx9hXHVqpCSGq595KDUt3FJ8h_lHhAk9W9ZWF8hF5iLSCYxcQ1nTvUWqXoNfGw0w8Ve61XS-5hLzzWRAPdLBsKBLic10AnURyt7S7f0nwxI/s1600/DSC02454.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjompJbnq0fVllZFhfjZAfFtW_MFiLGdQM-Hx9hXHVqpCSGq595KDUt3FJ8h_lHhAk9W9ZWF8hF5iLSCYxcQ1nTvUWqXoNfGw0w8Ve61XS-5hLzzWRAPdLBsKBLic10AnURyt7S7f0nwxI/s320/DSC02454.JPG" width="320" /></a></div><br />
Her immediate cause of death was a chest infection which her body could no longer fight off after Lois lost a great deal of weight from being too exhausted to eat. Many of us know that feeling only too well. Using all your strength to cook a simple meal, then having no energy left to eat it! All the more so when bedridden, too poorly to rise and do any such tasks. Or that pernicious exhausting toxic nausea that makes eating and appetite such a struggle. Overwhelmingly frustrating and painful to read how at her inquest, her problems seem to have been linked to anorexia.<br />
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Lois had, like other PWME such as Sophia Mirza, been statemented as mentally ill in the past. Yet every symptom she had, and the non-treatment by medical professionals who claim they felt "powerless," I and so many others can relate to entirely. The problem is compounded by the fact that since 1988 many illnesses which exhibit "fatigue" as a symptom have been lumped together as "chronic fatigue", whether or not they are also more specifically characterised by the neurological, autoimmune, cardiovascular, autonomic symptoms that are essential to the ICC definition of M.E., the multi-systemic toxic cocktail of disability that has floored us. As I commented in the Sheffield support group today:<br />
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<span class="commentBody" data-jsid="text"><i>"I can also say that almost all Lois's symptoms ring a bell with me. Often, even now, the feeling of debilitating nauseating exhaustion that accompanies my neurological symptoms makes eating a real challenge. If I can prepare something, many times that uses all my strength & there's little or none left for eating. At no stage have I had anorexia but at times I am too weak to eat. At one stage of my illness I put on weight through having to give up long walks and cycling everywhere as I had done previously. At another stage I lost 6 stone and could eat very little. None of this was down to any problem attitudes to food, but the effects of M.E. nausea & weakness in combination with type 1 diabetes where insulin has to balance with carb intake even on worst M.E. days! As for "voices" - when I was in an M.E. crash with glands so swollen & throat so sore I could barely swallow, plus feverish pain all over, neurological hypersensitivities etc I sometimes felt I was almost hallucinating and even listening to music, familiar vocal/instrumental tracks would seem to play slightly out of time with each other. After months of disturbed sleep & pain with no answers, even as an extremely positive person, I woke one morning seriously considering banging my head on the wall to try to block the pain, or throwing myself out of the window. I didn't. But only because I could not imagine even more distress and discomfort, & hadn't the co-ordination or strength to mount the sill.</i>"</span><br />
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Mental stress comes only as a result of the neurological damage and AFTER the illness has left our previously vigorous, joyful, busy, adventurous and forward-focused lives and dreams all but shattered.<br />
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I ask you: if Lois's doctors felt so "powerless" to treat her with the sensitivity and expertise necessary, why on earth did they not themselves, as caring GPs and "specialists" join the fight to press for biomedical research? Why did they not dig deep to ensure this would never happen to another of their patients in the future? If they refuse to change their mindsets, how long before someone in the same position as Lois's family, or Sophia's, or Lynn Gilderdale's, calls for a charge of "corporate manslaughter" against a medical, political hierarchy that stubbornly refuses to press for biomedical research and instead mutters "all in the mind" for their own vested interests and monetary ends?<br />
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<div class="separator" style="clear: both; text-align: center;"></div>But it's Lois's attitude of hope that's inspiring me today, to go on trying to be a cog in the wheel of progress in M.E. research and awareness, not a stumbling block on the way. We can all do together, bit by bit, what we could never achieve alone. Sometimes even when we can do nothing at all, we find others, like my mum, are doing their bit too, on our behalf, to enlighten those who are still singing from a different hymn sheet!<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTsPsPliwtRsmMUlTmwCZVIopaf632jNui6lT1rGhu6YvuKCZQdIbetFBEnQumoWukmUCQ99gIzY6r8moqY34n2CojTJ4RCetV3FSQSF3LAvv7_vujdDKEFFw2HLJYFWqkjZldJxjb3Yc/s1600/DSC02455.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="480" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiTsPsPliwtRsmMUlTmwCZVIopaf632jNui6lT1rGhu6YvuKCZQdIbetFBEnQumoWukmUCQ99gIzY6r8moqY34n2CojTJ4RCetV3FSQSF3LAvv7_vujdDKEFFw2HLJYFWqkjZldJxjb3Yc/s640/DSC02455.JPG" width="640" /></a></div><div class="separator" style="clear: both; text-align: center;"></div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-2953793304263959222012-02-13T10:47:00.000-08:002012-02-13T10:47:22.143-08:00JOBCENTRE WRAG-TIME a poem<div class="separator" style="clear: both; text-align: center;"><a href="http://www.cvjobstore.com/images/pic_jcp_image.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://www.cvjobstore.com/images/pic_jcp_image.jpg" width="320" /></a></div><br />
<div style="text-align: center;"><span style="font-size: large;">I went to the local Jobcentre</span></div><div style="text-align: center;"><span style="font-size: large;">With painkillers, stick and bag</span></div><div style="text-align: center;"><span style="font-size: large;">I had to go, fearing sanctions</span></div><div style="text-align: center;"><span style="font-size: large;">Cos I've gone and been put in the "WRAG."</span></div><div style="text-align: center;"><span style="font-size: large;">It makes me feel poorly on buses</span></div><div style="text-align: center;"><span style="font-size: large;">But with hypos I mustn't drive,</span></div><div style="text-align: center;"><span style="font-size: large;">So I stumbled in all of a-tremble,</span></div><div style="text-align: center;"><span style="font-size: large;">And barely a quarter alive.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">It took me all my precious "spoons"</span></div><div style="text-align: center;"><span style="font-size: large;">To balance and to breathe,</span></div><div style="text-align: center;"><span style="font-size: large;">I had to watch the pavement</span></div><div style="text-align: center;"><span style="font-size: large;">As it starts to shift and seethe.</span></div><div style="text-align: center;"><span style="font-size: large;">My 80 year old mother came</span></div><div style="text-align: center;"><span style="font-size: large;">To help me open doors</span></div><div style="text-align: center;"><span style="font-size: large;">Which invariably seem to stick</span></div><div style="text-align: center;"><span style="font-size: large;">Defying gravity's laws.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">My appointment was half past eleven,</span></div><div style="text-align: center;"><span style="font-size: large;">Though I hadn't slept night after night.</span></div><div style="text-align: center;"><span style="font-size: large;">My legs felt as wobbly as rubber</span></div><div style="text-align: center;"><span style="font-size: large;">I was sickened by motion and light.</span></div><div style="text-align: center;"><span style="font-size: large;">But the Jobcentre seemed rather quiet</span></div><div style="text-align: center;"><span style="font-size: large;">With everyone there in their place,</span></div><div style="text-align: center;"><span style="font-size: large;">No loud noises were blorting to hurt me</span></div><div style="text-align: center;"><span style="font-size: large;">Which was abso-bloomin-lutely ace.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">A lass who was wearing a label</span></div><div style="text-align: center;"><span style="font-size: large;">Which I guess spelled out her name</span></div><div style="text-align: center;"><span style="font-size: large;">Started asking me what was my business</span></div><div style="text-align: center;"><span style="font-size: large;">And the reason that I came?</span></div><div style="text-align: center;"><span style="font-size: large;">I explained I'm in the “WRAG” group</span></div><div style="text-align: center;"><span style="font-size: large;">And I had to meet the girl</span></div><div style="text-align: center;"><span style="font-size: large;">Who's my “Personal Adviser”</span></div><div style="text-align: center;"><span style="font-size: large;">Who I'll call, for rhyme's sake, “Shirl.”</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
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</span> </div><div style="text-align: center;"><span style="font-size: large;">She looked me up, she looked me down,</span></div><div style="text-align: center;"><span style="font-size: large;">She showed me to a chair,</span></div><div style="text-align: center;"><span style="font-size: large;">Where in pain I tried to balance</span></div><div style="text-align: center;"><span style="font-size: large;">Near to others who were there.</span></div><div style="text-align: center;"><span style="font-size: large;">Some were reading adverts,</span></div><div style="text-align: center;"><span style="font-size: large;">While others filled in forms,</span></div><div style="text-align: center;"><span style="font-size: large;">Some jiggled kids in pushchairs</span></div><div style="text-align: center;"><span style="font-size: large;">While others stifled yawns.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">But everyone seemed friendly,</span></div><div style="text-align: center;"><span style="font-size: large;">Efficient, polite and calm,</span></div><div style="text-align: center;"><span style="font-size: large;">And as I got my breath back</span></div><div style="text-align: center;"><span style="font-size: large;">One young woman touched my arm.</span></div><div style="text-align: center;"><span style="font-size: large;">She said my name and greeted me</span></div><div style="text-align: center;"><span style="font-size: large;">And helped me cross the carpet,</span></div><div style="text-align: center;"><span style="font-size: large;">Pulled out a chair to help me</span></div><div style="text-align: center;"><span style="font-size: large;">Cos by now my “spoons” had scarpered!</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">She reassured me from the off</span></div><div style="text-align: center;"><span style="font-size: large;">She wasn't there to press me,</span></div><div style="text-align: center;"><span style="font-size: large;">ATOS had done what ATOS do,</span></div><div style="text-align: center;"><span style="font-size: large;">Here no one would undress me</span></div><div style="text-align: center;"><span style="font-size: large;">Or frown and say “M.E.? What's that?”</span></div><div style="text-align: center;"><span style="font-size: large;">You look fit as a fiddle!”</span></div><div style="text-align: center;"><span style="font-size: large;">She listened and she understood</span></div><div style="text-align: center;"><span style="font-size: large;">(Not influenced by Rod Liddle!)</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">I didn't wear my dog-collar,</span></div><div style="text-align: center;"><span style="font-size: large;">So I was a bit astounded,</span></div><div style="text-align: center;"><span style="font-size: large;">She knew the kind of help I'd need,</span></div><div style="text-align: center;"><span style="font-size: large;">Advice was wise and grounded.</span></div><div style="text-align: center;"><span style="font-size: large;">She tapped on her computer screen</span></div><div style="text-align: center;"><span style="font-size: large;">To calculate & compare,</span></div><div style="text-align: center;"><span style="font-size: large;">If work from home might pay at all</span></div><div style="text-align: center;"><span style="font-size: large;">What hours, what skills to share.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
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</span> </div><div style="text-align: center;"><span style="font-size: large;">She knew from my work history</span></div><div style="text-align: center;"><span style="font-size: large;">I wasn't one for shirking,</span></div><div style="text-align: center;"><span style="font-size: large;">She knew that were I well enough</span></div><div style="text-align: center;"><span style="font-size: large;">I'd much rather be working.</span></div><div style="text-align: center;"><span style="font-size: large;">She totted up the hours</span></div><div style="text-align: center;"><span style="font-size: large;">I could work or volunteer,</span></div><div style="text-align: center;"><span style="font-size: large;">On top of what I manage now,</span></div><div style="text-align: center;"><span style="font-size: large;">If better health were here.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">She built on what my skills are</span></div><div style="text-align: center;"><span style="font-size: large;">To make helpful suggestions,</span></div><div style="text-align: center;"><span style="font-size: large;">She let me pace things as we talked</span></div><div style="text-align: center;"><span style="font-size: large;">And answered all my questions</span></div><div style="text-align: center;"><span style="font-size: large;">She learned about my brainfog</span></div><div style="text-align: center;"><span style="font-size: large;">And saw it one-to-one,</span></div><div style="text-align: center;"><span style="font-size: large;">She's the face among the faceless,</span></div><div style="text-align: center;"><span style="font-size: large;">I was really glad I'd gone!</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">I asked if I had to see her</span></div><div style="text-align: center;"><span style="font-size: large;">Every month from here on in,</span></div><div style="text-align: center;"><span style="font-size: large;">She said it would not be needed,</span></div><div style="text-align: center;"><span style="font-size: large;">(My knees must've met my chin!)</span></div><div style="text-align: center;"><span style="font-size: large;">I could call her number any time</span></div><div style="text-align: center;"><span style="font-size: large;">For any advice at all,</span></div><div style="text-align: center;"><span style="font-size: large;">It should be another year or more</span></div><div style="text-align: center;"><span style="font-size: large;">Till my next medical call.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">She was honest about W.R.B.</span></div><div style="text-align: center;"><span style="font-size: large;">And all the uncertain changes,</span></div><div style="text-align: center;"><span style="font-size: large;">She well understood her clients' fears</span></div><div style="text-align: center;"><span style="font-size: large;">And the future's scary dangers,</span></div><div style="text-align: center;"><span style="font-size: large;">So clued up and supportive,</span></div><div style="text-align: center;"><span style="font-size: large;">She went out of her way</span></div><div style="text-align: center;"><span style="font-size: large;">To fetch me a pack to make a claim</span></div><div style="text-align: center;"><span style="font-size: large;">If needed, for DLA.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">Since then I've heard two other friends</span></div><div style="text-align: center;"><span style="font-size: large;">At different JCPs,</span></div><div style="text-align: center;"><span style="font-size: large;">Have also had this kind of help</span></div><div style="text-align: center;"><span style="font-size: large;">In different degrees.</span></div><div style="text-align: center;"><span style="font-size: large;">Although it took days to recover,</span></div><div style="text-align: center;"><span style="font-size: large;">From this trip to the “bowels of hell”,</span></div><div style="text-align: center;"><span style="font-size: large;">I consider myself very fortunate</span></div><div style="text-align: center;"><span style="font-size: large;">I've a positive tale to tell.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">Before you say, “yes but, no but,</span></div><div style="text-align: center;"><span style="font-size: large;">ESA's just for a year.”</span></div><div style="text-align: center;"><span style="font-size: large;">I must meet that bridge when I come to it,</span></div><div style="text-align: center;"><span style="font-size: large;">I'm thankful for now and here.</span></div><div style="text-align: center;"><span style="font-size: large;">For now, I was saved an unequal fight</span></div><div style="text-align: center;"><span style="font-size: large;">To be put in the group for “support”,</span></div><div style="text-align: center;"><span style="font-size: large;">Not terminal ill, not yet a corpse,</span></div><div style="text-align: center;"><span style="font-size: large;">I guess I've been put where I ought.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">I know the harsh rules of D.W.P.</span></div><div style="text-align: center;"><span style="font-size: large;">Won't find me a miracle cure,</span></div><div style="text-align: center;"><span style="font-size: large;">With their strict time-limitation,</span></div><div style="text-align: center;"><span style="font-size: large;">But the future is seldom sure!</span></div><div style="text-align: center;"><span style="font-size: large;">We can only live in the moment,</span></div><div style="text-align: center;"><span style="font-size: large;">And fight on for those with no voice,</span></div><div style="text-align: center;"><span style="font-size: large;">Play fair even when we've been diddled,</span></div><div style="text-align: center;"><span style="font-size: large;">Or grow bitter and bolshy by choice.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">Back at home I was soon reminded,</span></div><div style="text-align: center;"><span style="font-size: large;">How true were the things we'd discussed,</span></div><div style="text-align: center;"><span style="font-size: large;">How far I am from “fit for work”</span></div><div style="text-align: center;"><span style="font-size: large;">The adrenalin soon repercussed.</span></div><div style="text-align: center;"><span style="font-size: large;">I slept till the daylight was dying,</span></div><div style="text-align: center;"><span style="font-size: large;">As body and brain disengages</span></div><div style="text-align: center;"><span style="font-size: large;">With the payback from that short journey</span></div><div style="text-align: center;"><span style="font-size: large;">I just couldn't function for ages.</span></div><div style="text-align: center;"><span style="font-size: large;"><br />
</span> </div><div style="text-align: center;"><span style="font-size: large;">But at least one Jobcentre employee,</span></div><div style="text-align: center;"><span style="font-size: large;">Understands disability more,</span></div><div style="text-align: center;"><span style="font-size: large;">Has more now of M.E. awareness,</span></div><div style="text-align: center;"><span style="font-size: large;"></span></div><div style="text-align: center;"><span style="font-size: large;">It won't stop me fighting injustice,</span></div><div style="text-align: center;"><span style="font-size: large;">With others whom ATOS have harmed,</span></div><div style="text-align: center;"><span style="font-size: large;">But I went to the WRAG, and I learned some,</span></div><div style="text-align: center;"><span style="font-size: large;">As with all things, forewarned is forearmed.</span></div><div style="text-align: center;"><br />
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</span>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-73032936229368726432012-01-26T08:13:00.000-08:002012-01-26T08:13:10.598-08:00A Liddle bit of M.E. Awareness would go a long way!<a href="http://www.meassociation.org.uk/?p=10103">‘Pretend disabled’ really ARE sick.</a><br />
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"My New Year’s resolution for 2012 was to become disabled," snorts the less than credible Mr Rod Liddle in today's Sun "newspaper", as we still generously call it, even after all these years.<br />
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Many have been hurt, enraged and angry by the ignorant bandwagon-jumping of the notoriously obnoxious hack. Some have counselled "ignore him he'll go away" tactics. Those of us who walk the sickening tightrope of life with neurological M.E. sadly have learnt this kind of attack won't just evaporate. The constant background drip of anti-M.E. jibes, the jokes from the writers of Benidorm and Ricky Gervais, the biopsychosocial psychobabble of such as Wessely, Freud et al, will not go away.<br />
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Tolerating in silence may make me feel adjusted, meek and mild. That's OK for myself, as it's my choice. But on behalf of everyone else who is affected by this disability denying counter-narrative, as a Christian, a writer, a compassionate human being, a citizen of a world where disability is a reality but equality and justice are not, I felt I had to say my piece and not let such unbridled ignorance and malevolence go unchallenged.<br />
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This is what I wrote as my complaint to the <a href="http://www.pcc.org.uk/complaints/makingacomplaint.html#checklist">Press Complaints Commission</a>. A bit more M.E. awareness never does any harm, if it's the right kind, so here it is:<br />
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<div style="margin-bottom: 0cm;">Please add the clause(s) you believe to have been breached:</div><div style="margin-bottom: 0cm;">Clause 1. Accuracy i) ii) & iii)</div><div style="margin-bottom: 0cm;">Clause 12. Discrimination i)</div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;"> </div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;">Liddle's wholly inaccurate, offensive targeting of neurological M.E. (myalgic encephalomyelitis) in this article breaches the Code by inciting disability hate crime and discriminating against a large group of extremely ill patients. Factual journalism is nowhere to be found in his dismissal of M.E. as "nothing too serious" and "one of those newly invented illnesses which make you a bit peaky for decades". Patients have died from M.E. It has been recorded as a cause of death on death certificates e.g. Sophia Mirza.</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"> Had Liddle done the modicum of basic research and not merely been in a ferocious rush to promulgate his vitriolic misinformation aimed at those too ill to retaliate, he might have avoided bringing disgrace on his profession and inciting unwarranted contempt on patients struggling with this lifelong chronic disease (known to be more disabling in its effects at times than AIDS, MS & liver failure).</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"> M.E. has been recognised and classified by the W.H.O. since 1969 and known by other names, in isolation and in large outbreaks for much longer. It is in no way “newly invented”, let alone “fashionable”. Neurological M.E. is so severe and life-changing in its devastation, that not even the most intelligent actor could "pretend" to mimic its measurable effects, including neurological and mitochondrial chemical changes in the body. It might be possible for a scrounger, such as Liddle purports to covet becoming, to feign the vague fatigue symptoms experienced for a few months by some who only experience a limited period of "chronic fatigue," but these people do not have neurological, multi-systemic M.E.</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"> M.E. cannot be reliably diagnosed until a quantifiable, indisputable array of severe symptoms, observable in all systems of the body (of which crushing, toxic fatigue is but a part) has been present for at least 6 months. It is usually, often in a pattern of remitting-relapsing fluctuating severity, frequently bedbound and housebound and limited even on the so-called “better” days, a life sentence for those unfortunate to be so afflicted. After all the medical scrutiny, tests and investigations patients go through, there is no way that those with neurological M.E. could be found "faking" as Liddle, in his onslaught of vituperative, carelessly penned bile so mistakenly fantasises.</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"> </div><span style="font-family: Georgia,"Times New Roman",serif;"> </span><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;">As for talking about "tax payers" as if they were a breed apart from disabled M.E. Patients, Liddle should do some real journalistic work and discover that the majority of adult neurological M.E. sufferers have been forced, by the severity of their condition, reluctantly to retire or leave well paid jobs and professions of every kind where they paid tax and often continue to do so as the condition takes its devastating toll on them, their families and carers.</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"><br />
</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"> Benefits are not chosen as some comfortable "lifestyle choice" but as a lifeline that is far from luxury when compared to the pay, lifestyle, opportunities and hopes they had before being struck down by this merciless disease in the midst of thriving careers. Other M.E. patients are children and young people with not the slightest incentive to see friends, sporty pursuits, carefree days, partying, adventures and dreams head over the diminishing horizon just so they can look forward to a life of excruciating pain, crippling exhaustion and an existence diminished by being forced to rely on "benefits".</div><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;"><br />
</div><span style="font-family: Georgia,"Times New Roman",serif;"> </span><div style="font-family: Georgia,"Times New Roman",serif; margin-bottom: 0cm;">More could, and no doubt will be eloquently said by many others about this outrageously substandard piece of gutter press, as Liddle has on this occasion broken the Code of Practice in lamentable, deliberate ways that few responsible citizens would feel it reasonable to ignore or condone. </div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">------------------------------------------------------------------------------------</div><div style="margin-bottom: 0cm;"><br />
</div><div style="margin-bottom: 0cm;">Now I'm going to lie down and recover my equilibrium and "spoons" again.</div><div style="margin-bottom: 0cm;">If I'm going to be even half strong and able enough to attend my WRAG interview next week, I pray I won't be pressed to volunteer for any job half as "pretend" as the one Mr Liddle seems to have carved out for himself in the name of being a journalist.</div><div style="margin-bottom: 0cm;"><br />
</div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-11185326774599415882012-01-23T05:06:00.000-08:002012-01-24T04:37:54.374-08:00Valerian Root - sweet dreams & cool for cats?<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ELGxyUuKQnHBjOV5yniYqmyTFe9OenbxDiSIvxwYO5wFaGgMKPSy5rTDOLSZ9bIMc8zOVRu-sJM8tVDSev-Q71rxCPIM89pVMAoMnI7NiSQG48VzTo6yKVDgyrwIiuur-ZjB9EV1mJM/s1600/DSC03618.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi6ELGxyUuKQnHBjOV5yniYqmyTFe9OenbxDiSIvxwYO5wFaGgMKPSy5rTDOLSZ9bIMc8zOVRu-sJM8tVDSev-Q71rxCPIM89pVMAoMnI7NiSQG48VzTo6yKVDgyrwIiuur-ZjB9EV1mJM/s320/DSC03618.JPG" width="320" /></a></div>When I was younger, I used to sleep so well.<br />
In fact, I could drift off to sleep and wake up quite refreshed at whatever time I'd decided I needed to rise. I've never liked to lie-in. I love the early mornings and hearing the dawn chorus was nothing but joy to start my day.<br />
<br />
Then came M.E.<br />
<br />
Painful, endless nights, like lying on a burning mat, limbs shivering, muscles twitching no matter which way I lie. Hot. Cold. Stiff. Nauseous. Sometimes I can get to sleep, but the sleep is fitful, and I jerk back into consciousness every hour or so. By morning, I'm so exhausted I drop off for longer than I like to, and suddenly it's late (mid-morning is late to me!).<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://media.rd.com/rd/images/rdc/slideshows/sleep-disorders/sleep-disorder-insomnia-01-sl.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="http://media.rd.com/rd/images/rdc/slideshows/sleep-disorders/sleep-disorder-insomnia-01-sl.jpg" width="320" /></a></div><br />
I try to maintain a good sleeping pattern so my body clock isn't thrown, but my body has a mind of its own. When I've overdone things, or pick up a virus, like at the start of my latest big M.E. meltdown, I can sleep the clock round and never feel refreshed or even half human in the waking hours.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjofeix7hMIjzP5AyCJddkL7Rn2hfFtbTLYuKwCckl_nUo6t7O4h1OiOACV2xOT06-n83JqBa1bbjoBfz-hT9n1J-J5RY8FIcnJe4G-SQvMBpbvzhnWnCba-lBof90meh6AkaH9NEY9lFs/s1600/DSC03623.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjofeix7hMIjzP5AyCJddkL7Rn2hfFtbTLYuKwCckl_nUo6t7O4h1OiOACV2xOT06-n83JqBa1bbjoBfz-hT9n1J-J5RY8FIcnJe4G-SQvMBpbvzhnWnCba-lBof90meh6AkaH9NEY9lFs/s320/DSC03623.JPG" width="320" /></a></div><br />
<br />
I've tried lots of things over the years. I asked my GP about MELATONIN some years back, but she wasn't allowed by her own professional guidelines to prescribe it. If she had, the cost would have been covered by my medical exemption certificate for Type 1 diabetes and similar lifetime conditions. I bought some online from a reputable chemist. Quite expensive to keep that up and I didn't see any huge improvement, though for a while seemed to help with actually getting off to sleep. It's what our bodies produce naturally when we are well and functioning normally. No side effects. Widely used to counteract jetlag etc.<br />
<br />
Likewise, in the early days of diagnosis I was prescribed low dose AMITRIPTYLINE to help painkillers to work more effectively and aid relaxation and sleep. But these had many unwanted side effects like weight gain and tachycardia and were eventually stopped. They didn't really do anything for sleep, in any case. Not sleep that felt healthy.<br />
<div class="separator" style="clear: both; text-align: center;"></div><br />
I was never just "stressed", in any case, apart from feeling despair at not being able to function reliably. Plus the emotional struggle any human has with coming to terms with a disability that's an invisible illness, to boot. One that gives the world and their grandma a license to tell you how you could miraculously cure yourself if only you take the quack advice they heard from their next door neighbour but one! (Cures which invariably turn out to be for CFS, or because the patient went into remission which may or may not prove permanent!)<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.clker.com/cliparts/7/6/9/6/12994833491313142000use-vodka-lavender-tincture-lg-md.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="313" src="http://www.clker.com/cliparts/7/6/9/6/12994833491313142000use-vodka-lavender-tincture-lg-md.png" width="400" /></a></div><br />
I've tried HEAT PADS, HOT WATER BOTTLES, RELAXATION TECHNIQUES, WHITE NOISE, NATURE SOUNDS, SEA SOUNDS, TREE SOUNDS, LAVENDER, HOPS (the plant, not the exercise!), TENS MACHINES, PERRIN TECHNIQUE, DIET MODIFICATION (more than all usual modification for diabetic health), TAI CHI (when able to balance for the less demanding moves!), COUNTING SHEEP. You name it. Most of these are comforting and relaxing. My favourite of them is LAVENDER, on balance. Heavenly scent, like summer fields and open spaces. A few drops on your pillow or combined with a heat pad can sometimes be just what you need to feel good. Sweet sleep may well follow. Though sometimes it doesn't, for long!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieQeStHLOMpp46kWF4YzH2vEvNI6hKziJd9Z_uKH3FvKAGAlFSJ2VQgpJJU4dTUfmdjaZ5a9338DmDZVzKSo3ejBKqHuLJNJ1UvisimDk4pnS04vULZrhP8fTavtUohW7ES9jiJGBnsxY/s1600/DSC03619.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEieQeStHLOMpp46kWF4YzH2vEvNI6hKziJd9Z_uKH3FvKAGAlFSJ2VQgpJJU4dTUfmdjaZ5a9338DmDZVzKSo3ejBKqHuLJNJ1UvisimDk4pnS04vULZrhP8fTavtUohW7ES9jiJGBnsxY/s320/DSC03619.JPG" width="320" /></a></div><br />
<br />
But till some lovely spoonie friends mentioned it on Twitter recently, I had never tried<br />
VALERIAN ROOT (Valeriana officinalis).<br />
<br />
I discovered I could buy 90 tablets of VALERIAN (3 bottles of 30 vegetarian 500mg tablets) from Amazon.co.uk marketplace for £2.50 + £2.03 shipping. They arrived two days later.<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.clipartmonsterclub.com/clipart/r/large_Valerian_21205.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://www.clipartmonsterclub.com/clipart/r/large_Valerian_21205.png" /></a></div><br />
Only down side- they pong rather like a cross between Tom cat wee and something slightly unsettling you can't quite place! They are sometimes likened to catnip for sending cats wild! The smell is quite unmistakable from the moment you break the seal on the pill bottle. Apparently Valerian teabags and liquid forms have a similar effect. So I lock the doors before taking the lid off now. Don't want to be pulled up by the RSPCA for driving the neighbourhood kitties insane with desire!<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQPgPvKkWn1JaJncc5KSXlRzqtvQd3t3nGVrJvuiUZOYuZPQVAvCWm8O7-bd0vLoJ1tb6nip9JmRJojGiz7UP0yoDUdENJT2UHS3rl_YZNnnR9gN5kjN5RPz2nn5uT2cyC2X1mG2qcH5w/s1600/DSC03620.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiQPgPvKkWn1JaJncc5KSXlRzqtvQd3t3nGVrJvuiUZOYuZPQVAvCWm8O7-bd0vLoJ1tb6nip9JmRJojGiz7UP0yoDUdENJT2UHS3rl_YZNnnR9gN5kjN5RPz2nn5uT2cyC2X1mG2qcH5w/s320/DSC03620.JPG" width="320" /></a></div><br />
<br />
I have taken 1,2 and some days 3 per night, staggered through the evening (this is the recommended dose on the label). On the days I have taken them I certainly feel drowsier (nauseous, exhausted drowsy) before bed. That can happen with M.E. too, so a bit tricky to quantify. I have got off to sleep quite quickly too, which is a good thing. I still wake occasionally through night but get back to sleep. Again, certainly not worse than before, though would have to try it when sleep problems are at their worst.<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgycHgvE8tndNl_wv6AYThGPig8BIs9TjFHa3fBkXJ71tfOfwkcHcYh5NlpMb4I8bC_dmXNPPNRJXI2CbGgbQ2lVMESxzGiZBTWI71WXZkihW9FvZZOmL2wuTVHag37kH8xrZnGAgB2HSg/s1600/DSC03621.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgycHgvE8tndNl_wv6AYThGPig8BIs9TjFHa3fBkXJ71tfOfwkcHcYh5NlpMb4I8bC_dmXNPPNRJXI2CbGgbQ2lVMESxzGiZBTWI71WXZkihW9FvZZOmL2wuTVHag37kH8xrZnGAgB2HSg/s320/DSC03621.JPG" width="320" /></a></div><br />
<br />
I have certainly slept longer. Last night, with some interruptions, almost 10 hours (10.30pm - 9am) which is excellent. The trouble is still, with M.E., I don't feel much refreshed by that good long sleep. Though an outing on Saturday had all but wiped me out. Still pain, nausea, brain fog (terribly much yesterday in particular), unsteadiness and very little appetite at the moment.<br />
<br />
As usual, we'll see how it goes. So far, so good. Apart from the stomach-churning pong! At least your cats will love you!<br />
.................................................................................................................................<br />
<br />
<b>Update Tuesday 24th Jan 2012</b>: Took 2 tabs last night around 11pm. Slept with a few minor interrruptions until 11.30am. At which point mum texting to make sure I was ok and not hypo. Managed to struggle down by just after noon. BG 12.0 (high, but not that unusual if I ever sleep late). Headache, muscles weak & "rubbery", heart pounding on and off, chest sore and fibro tender in shoulders, wrists, knees. But on that evidence, the Valerian seems to be working as a natural sleep-promoter! Zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz <br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://t1.gstatic.com/images?q=tbn:ANd9GcQohaIjXcolXXjc8-ExSfsQjuXoLLCBYXwotwYJCFFH3ZEkHbyWow" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://t1.gstatic.com/images?q=tbn:ANd9GcQohaIjXcolXXjc8-ExSfsQjuXoLLCBYXwotwYJCFFH3ZEkHbyWow" /></a></div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com3tag:blogger.com,1999:blog-8679499696683843291.post-6261334945968863432012-01-17T13:18:00.000-08:002012-01-18T10:24:33.202-08:00There's still everything to play for, Lord Freud. We'll have you eat your false promises on toast!Disabled people everywhere still reeling at the result in the Lords tonight. <br />
<br />
Result: Contents (supporting Lady Tanni Grey-Thompson's amendment calling for a pause to the change of DLA to PIP): 213<br />
Not Contents (voting with the Government) 229<br />
<br />
Baroness Grey-Thompson refused to back down in the face of Lord Freud's bullying and haranguing, and took it to a vote. While that vote was narrowly lost, not least because of the Lib Dems (only two of them had the backbone, compassion and wisdom to vote against the Tories' speeding train of crushing Welfare Reform), the voice of the disabled, now focused through the breathtaking sacrificial efforts of all involved in the "Spartacus Report" has started to be heard. Started to rock the belligerent boat that is the Government's plan for the sick. The blundering amoral machinations of Lord Freud can temporarily muffle those clear, brave voices. We've seen that tonight.<br />
<br />
But we will never now lie down and be silenced.<br />
Now we know the score.<br />
We can gradually, spoonily, make Lord Freud eat every single one of those ingratiating false promises he made in order to "win" and keep us quiet tonight. As if!<br />
For we are Spartacus.<br />
We have one another and we are one another's strength.<br />
We have the moral high ground the Government has long given away in its scramble to scratch its own back and feather its own grubby nest.<br />
<br />
We won't give in.<br />
We go on with gratitude and thankfulness to those who deserve it.<br />
From our sickbeds and our forgotten corners, we can move forward in hope and determination to be exactly who we need to be. With fluctuating conditions, mental health issues, deteriorating and terminal illness, every type of disability and health challenge.<br />
<br />
No. We might not fit in your assessment tick-boxes. We might not be conveniently "fit for work".<br />
But we are here. One way or another, we won't be going away just because it makes you uncomfortable in your ivory tower!<br />
<br />
There is still everything to play for! We are Spartacus, and we aren't about to roll over and give in. Disability means living with challenges every day, and the Welfare Reform Bill is yet another one to build up our wobbly muscles on!<br />
<br />
We've so much to build on, now. So many new friends and champions.<br />
Onwards and upwards, spoonie Spartaci! xxxJoycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-42553513373565538232012-01-17T04:14:00.000-08:002012-01-17T04:28:00.726-08:00Today's the day! So will the Lords do the only right thing?<div style="color: #491600; font-family: 'Times New Roman'; font-size: 14pt;"><div><span style="color: black; font-size: 12pt;">So today's the day. The last chance for the Lords to vote for an amendment to call for a pause to the proposed changes to DLA (Disability Living Allowance). If not it will be seamlessly morphed into the unfit for purpose PIP (no, not the dodgy boob implants, the equally dodgy Personal Independence Payment!) that may well make unbearable and unlivable the lives of the most vulnerable disabled citizens in our country. They were promised they would never be betrayed. Through the tireless efforts of the disabled through the "Responsible Reform" Report, a new amendment has been tabled.</span><br />
<br />
</div><div></div><div><span style="color: black; font-size: 12pt;"> Again this is the eleventh hour. Again the disabled are fighting for their lives.</span></div><div></div><div><span style="color: black; font-size: 12pt;">With M.E., plus Type 1 Diabetes with frequent severe and unannounced hypos, it has taken all my strength and last shred of dignity just to be transferred from IB to ESA. Even though incompetent and duplicitous ATOS have now plopped me unceremoniously into the incorrect WRAG (Work Related Activity Group), I'm pathetically relieved and thankful they deemed me of limited capability for work at all, given the current level of wrong decisions going to appeal. When I turn up crashed, brainfogged and crippled in my dogcollar at the Jobcentre again, we'll see exactly where their areas of expertise lie.</span></div><div><span style="color: black; font-size: 12pt;"><br />
</span></div><div><span style="color: black; font-size: 12pt;">I have never applied for DLA (Disability Living Allowance) myself, just because, although I have long periods when I seem to fit its most stringent criteria, I find it hard enough to claim the ESA I need to survive, without having yet another ongoing claim where officials can look on me as if I have crawled out from under a stone. If I can manage, I will. The criteria for qualification for PIP were released yesterday <a href="http://www.dwp.gov.uk/docs/pip-assessment-thresholds-and-consultation.pdf">here</a>.</span><br />
<br />
<span style="color: black; font-size: 12pt;"> I am often like Katy in Case Study 1, but living alone. In that scenario I would qualify for PIP with "enhanced rate Daily Living component" and "enhanced rate Mobility component". At other periods my health may mean I more resemble Rachel in Case Study 2 who qualifies for nothing. Sorry my fluctuating serious lifelong illnesses are inconvenient enough not to fit the tick boxes. Sorry my body refuses to a)recover or b) die for your convenience! No wonder I daren't apply!</span></div><div><span style="color: black; font-size: 12pt;"><br />
</span></div><div><span style="color: black; font-size: 12pt;"><br />
The whole PIP assessment thresholds leave you confused and despairing at the sheer lack of coherence and understanding of disability. There is so much emphasis on the upper body that you have to ask yourself if the DWP think all disabled people are mermaids, without legs or crotch. </span></div><div><span style="color: black; font-size: 12pt;"><br />
</span></div><div><span style="color: black; font-size: 12pt;">Ironically, if I can go back to work, the fluctuating and lifelong conditions I have mean I might probably need to claim DLA for extra transport and mobility costs, etc. One day, any one of us might.</span></div><div><span style="color: black; font-size: 12pt;"><br />
</span></div><div><span style="color: black; font-size: 12pt;">So here's the email I've just sent to about 90 Crossbench peers, following a flurry of tweets last night.</span></div><div><span style="color: black; font-size: 12pt;">If the Government don't tamper with any more balls, sanity and victory may be almost within our grasp!</span></div><div></div><div><span style="color: black; font-size: 12pt;">Email to Crossbench peers:</span></div><div></div><div><span style="color: black; font-size: 12pt;">This morning, the following amendment has been tabled :<br />
<br />
<b>Clause 80 - Amendment 50E</b></span><b><span style="font-size: 12pt;"><br />
<span style="color: black;">BARONESS GREY-THOMPSON<br />
BARONESS WILKINS<br />
LORD LOW OF DALSTON<br />
BARONESS CAMPBELL OF SURBITON<br />
<br />
Page 58, line 26, at end insert—<br />
<br />
“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—<br />
<br />
(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;<br />
<br />
(b) disabled persons organisations to be involved in formulating the assessment process.</span></span></b><br />
<b><br />
On behalf of all genuinely sick and disabled people, their families and carers , may I ask you to make it an urgent priority today to vote for this vital amendment to the Welfare Reform Bill?</b><br />
<br />
<b> </b></div><div></div><div><b>Following the wise, compassionate and reasoned “Responsible Reform” (also known as the Spartacus Report), the rest of society is starting to grasp the deeply flawed nature of the proposed reforms as they stand. Without a pause today, devastating and unjust changes will be rushed into law. The amendment calls for a pause to reconsider and amend before it is too late. </b><br />
<br />
<b>We all understand how essential is giving disabled citizens a life that is not just barely tolerable, but which gives them a chance to thrive and enable them to use all their gifts and talents to enrich society, while having quality of life themselves with all their added costs and difficulties in accessing what others take for granted. The Welfare Reform Bill as it stands, without serious amendments, will cost the country so much more in the long run than has been mendaciously suggested by some.</b><br />
<br />
</div><div></div><div><b>I respectfully beg you to help by doing your part to understand the real issues and vote for what is right.</b></div><div></div><div><b>Thank you so much for your time and attention,</b></div><div></div><div><b>yours sincerely,</b></div><div></div><b>etc</b></div><div style="color: #491600; font-family: 'Times New Roman'; font-size: 14pt;"></div><div style="color: #491600; font-family: 'Times New Roman'; font-size: 14pt;"><b>Sent to: </b>andrew@amawsonpartnerships.com,<br />
alastair@aberdares.co.uk,<br />
adebowalev@parliament.uk, <br />
afsharh@parliament.uk, <br />
michael.allenby@btinternet.com,<br />
altond@parliament.uk,<br />
amosv@parliament.uk,<br />
armstrongr@parliament.uk, <br />
best@parliament.uk, <br />
p.bew@qub.ac.uk, <br />
abhatia@casley.co.uk,<br />
bilimoria@parliament.uk,<br />
birtj@parliament.uk, <br />
BOOTHROYD@parliament.uk, <br />
brabazoni@parliament.uk, <br />
bramallen@parliament.uk,<br />
lady.briggs@googlemail.com, <br />
butlerslosse@parliament.uk,<br />
campbelljs@parliament.uk, <br />
carswellr@parliament.uk, <br />
deechr@parliament.uk,<br />
dafydd.elis-thomas@wales.gov.uk,<br />
errollm@parliament.uk, <br />
finlayi@parliament.uk, <br />
freybergv@parliament.uk,<br />
fritchiei@parliament.uk, <br />
greenfieldsuuk, <br />
greengrosss@parliament.uk,<br />
greenwaya@parliament.uk, <br />
greythompsont@parliament.uk, <br />
crlguthrie@gmail.com, <br />
halla@parliament.uk, <br />
harriesr@parliament.uk, <br />
hastingsm@parliament.uk,<br />
haymanh@parliament.uk, <br />
hennessyp@parliament.uk, <br />
hoffmannl@parliament.uk,<br />
HoggS@parliament.uk,<br />
HOPEJAD@parliament.uk,<br />
howarthv@parliament.uk, <br />
howee@parliament.uk, <br />
hyltonr@parliament.uk, <br />
ingep@parliament.uk,<br />
janvrinr@parliament.uk,<br />
jaymh@parliament.uk,<br />
listowelf@parliament.uk, <br />
LLOYDAJ@parliament.uk,<br />
kakkara@parliament.uk,<br />
lowc@parliament.uk,<br />
LUCER@parliament.uk,<br />
lord.mackay@scotcourts.gov.uk, <br />
mancej@parliament.uk, <br />
McFarlanej@parliament.uk, <br />
marm@parliament.uk, <br />
martinm@parliament.uk, <br />
mawsona@parliament.uk, <br />
meachermc@parliament.uk,<br />
mckeem@parliament.uk, <br />
murphyel@parliament.uk, <br />
neubergerj@parliament.uk,<br />
nichollsd@parliament.uk, <br />
northbournec@parliament.uk, <br />
oloann@parliament.uk, <br />
oneillm@parliament.uk, <br />
ouseleyh@parliament.uk, <br />
oxburghe@parliament.uk, <br />
palmerad@parliament.uk,<br />
patel_naren@hotmail.com, <br />
pattenc@parliament.uk, <br />
prasharu@parliament.uk, <br />
ramsbothamd@parliament.uk, <br />
richardsonk@parliament.uk,<br />
rookerj@parliament.uk, <br />
roperj@parliament.uk, <br />
ROSSLYN@parliament.uk, <br />
SaltounF@parliament.uk, <br />
sandwichj@parliament.uk, <br />
skidelskyr@parliament.uk, <br />
dalrymplej@parliament.uk, <br />
SternVH@parliament.uk, <br />
dennis@hdstevenson.co.uk, <br />
stirrupg@parliament.uk, <br />
sutherlands@parliament.uk, <br />
tanlaws@parliament.uk, <br />
taylorjdb@parliament.uk, <br />
tombsf@parliament.uk, <br />
walkermjd@parliament.uk, <br />
walpolerh@parliament.uk, <br />
warnockh@parliament.uk, <br />
watsonm@parliament.uk<b> </b> </div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-7621195633119659082012-01-13T10:45:00.000-08:002012-01-13T13:49:18.140-08:00Brainfoggy aimless unscripted rambling - marginally easier than typing?<div class="separator" style="clear: both; text-align: center;"><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.blogger.com/video.g?token=AD6v5dxwTYeXDv5v1XO1h7czN5XLBjV7CUvmMFQEo7b9vFTVSHSDPGeuHS7U8XWgaSPaqvZSHgYoKRA71VB5fEouwA' class='b-hbp-video b-uploaded' frameborder='0'></iframe></div>Brainfoggy aimless unscripted rambling, for a change. Maybe marginally easier than thinking, composing, typing, editing, re-editing a written blogpost. But a whole lot more embarrassing and cringeworthy?<br />
<br />
Nobody would guess public speaking was a big part of my profession in teaching, ministry, meetings etc!<br />
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Gives a glimpse into how, even on a relatively "good" (???) day, brain fog can make it a challenge to scramble your way from one word/thought to another. The subject matter was hardly complex! I can still spot the odd word in there I didn't intend, e.g. International Space CENTRE instead of "STATION"! But what the heck! M.E. whittles things down to what's important. Who gives a flying ferret about it, anyway, apart from perfectionist "don't say anything wrong" me? Nobody! Get over it! Haha - thank crikey I've never pretended to be an oil painting! Lol!<br />
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Still, it's saved my finger joints, wrists etc. a bit of pain. Saved my body, if not my blushes!<br />
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PS It's taken all day to upload this, in the end, as Blogger v McAfee seem to have refused to play ball together. Not sure if sound/picture will come out co-ordinated either - they did on my laptop! Perhaps that's a mercy!Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-15077273556954970992012-01-12T06:26:00.000-08:002012-01-12T06:26:19.412-08:00Brain-dead is a tragedy. Compassion-dead is a "lifestyle choice"Sorry brain fog from yesterday's info meltdown overload reigns today. I will be mostly cutting and pasting two emails I managed to send yesterday to avoid complete incoherence today!<br />
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It was exhausting emotionally, but also exhilarating to watch the passionate, compassionate arguments from peers like Lord N Patel, Baroness Meacher, Lord McKenzie and others who last night voted to defeat three especially vicious aspects of the Coalition government's Welfare Reform Bill. The "Spartacus Report" and its tenacious disabled champions were instrumental in fighting for what's morally right over what is mean and mendacious.<br />
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It was dispiriting to find that the BBC was still obdurate in refusing to mention the Spartacus Report in any major bulletin, and its failure to report the government defeats in the Lords in more than a dismissive side note, way down the running order on News at Ten, with obvious spin to scupper the impact.<br />
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Even more devastating to hear that Lord Freud had tried "dirty tricks" tactics to override the earlier defeats in an unprecedented late night vote. And that he actually got away with it.<br />
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I managed two emails while adrenalin was driving my indignation last evening. Spoons have to be expended while the iron is hot, sometimes, even if it leads to crash and post exertional payback. Many noble disabled campaigners like Sue Marsh, Kaliya Franklin and many others, have fought altruistically for us all, and also made their own conditions worse in the process for the common good. They inspire us all.<br />
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I noted that Baroness Benjamin voted with the government, even after I lobbied her politely about ESA last month and the House of Lords sent me a postcard to say she had noted my letter. My fond memories of her on "Play School" are a bit tainted now, but never mind. She was on the losing side!<br />
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The first transcript here is a copy of a second email I have sent to my MP Kevin Barron, following the response I got on sending him a copy of the Spartacus Report on Monday, when he emailed me to say:<br />
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<div class="MsoNormal"><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">I have read the report this morning and I will do all I can to let the Government know of its conclusions.</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Yours</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;">Kevin Barron MP</span></div><div class="MsoNormal"><br />
</div><div class="MsoNormal"><span style="color: #1f497d; font-family: 'Calibri','sans-serif'; font-size: 11pt;"><span style="color: black; font-family: Times,"Times New Roman",serif;">I hoped to encourage him to build on the result of the Lords vote and maintain this impetus when the Bill comes back to the Commons:</span></span></div><div class="MsoNormal"><br />
</div><div style="color: #674ea7;"><span style="font-size: medium;">Dear Mr Barron,</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">Thank you for your email reply yesterday and for your promise to do all you can to let the government know of its conclusions.</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">In line with the research and conclusions in the Responsible Reform Report, genuinely disabled citizens, including many of your own constituents here in Rother Valley, have been relieved and encouraged by today’s defeat of the government in the House of Lords in three votes on various key amendments: namely</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">-to retain automatic eligibility for ESA for young disabled people who are unable to work</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">-to impose a two year time limit for ESA claimants, overriding the government’s proposal that claimants be reassessed after 12 months</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">-to exempt cancer patients from the proposed ESA limit</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">I hope you will see, from the wise, compassionate and reasonable arguments raised today in the Lords against the demeaning and immoral nature of the current proposals for Welfare Reform, that it is vital such remarkable victories of civilised action are upheld and strengthened when they come back to the Commons. I look forward to seeing your continued support at that stage if you are able.</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">Thank you again for your support and help for the most vulnerable in our society,</span></div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"> </div><span style="color: #674ea7;"> </span><div style="color: #674ea7;"><span style="font-size: medium;">your sincerely, etc</span></div><div><span style="font-size: medium;"><br />
</span></div><div><span style="font-size: medium;">Then, to Chris Patten, BBC Chairman, to express concern at lack of coverage:</span></div><div><span style="font-size: medium;"><br />
</span></div><div><div style="color: #38761d;"><span style="font-size: medium;">Dear Mr Patten,</span></div><span style="color: #38761d;"> </span><div style="color: #38761d;"> </div><span style="color: #38761d;"> </span><div style="color: #38761d;"><span style="font-size: medium;">Many people on the social networks this evening have been pointing out the obvious pro-Coalition bias of the ‘BBC News at Ten’ coverage of the Welfare Reform Bill currently being voted on in the House of Lords. It seemed pretty blatant, after the government suffered a triple defeat on amendments to protect young disabled people, cancer sufferers and to extend the period of time limited ESA, that the news item was being deliberately pushed down the order in order to “sink” the bad news. It was clear that papers were being shuffled and Huw Edwards was being fed questions to bias the reportage. Instead of the actual newsworthy defeat, viewers were treated to a smoke and mirrors whitewash making the whole thing seem like an embarrassing little blip. Somehow the piece was “spun” to blame the deficit on the disabled people affected, then to imply such a vote shows a need for reform of the House of Lords!</span></div><span style="color: #38761d;"> </span><div style="color: #38761d;"> </div><span style="color: #38761d;"> </span><div style="color: #38761d;"><span style="font-size: medium;">Exasperating as this is, it is a bias we see from the Corporation most of the time, and have reluctantly learned at least to tolerate. What is more chilling is the way the BBC News has deliberately failed to give any coverage to the “Responsible Reform” Report (popularly known as the “Spartacus Report”) released this week, revealing the Coalition’s mendacious misleading of the public on the facts of the Welfare Reform Bill. Why is this? The inflated license fee we pay for an ever diminishing handful of watchable “flagship” dramas and HD documentaries should surely buy us the basic right to expect coverage of issues the rest of the country can’t ignore? Just because some of these come in the wrong party colours, don’t toe the party line, or reveal the outright lies being fed to voters, surely this is hardly a valid reason for pretending they don’t exist in the rarefied air of BBC current affairs?</span></div><span style="color: #38761d;"> </span><div style="color: #38761d;"> </div><span style="color: #38761d;"> </span><div style="color: #38761d;"><span style="font-size: medium;"></span></div><span style="color: #38761d;"> </span><div style="color: #38761d;"> </div><span style="color: #38761d;"> </span><div style="color: #38761d;"><span style="font-size: medium;">with thanks,</span></div><div style="color: #38761d;"><span style="font-size: medium;">yours sincerely etc </span></div><div style="color: #38761d;"><span style="font-size: medium;"> </span></div><div style="color: #38761d;"><span style="font-size: medium;"><span style="color: black;">One battle's sort of won. But the war's very far from over.</span></span></div><div style="color: #38761d;"><span style="font-size: medium;"><span style="color: black;"> </span></span></div><div style="color: #38761d;"><span style="font-size: medium;"><span style="color: black;"> What we can never achieve alone, we can do together. Cos we are disabled, and we are Spartacus!</span> </span><span style="color: #38761d;"></span><span style="font-size: medium;"></span></div></div><div class="MsoNormal"><br />
</div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-36506948719000013672012-01-10T04:06:00.000-08:002012-01-10T05:47:55.011-08:00Spartacus Report gives disabled people a voice at the eleventh hour<span style="font-size: large;"><b><a href="http://tinyurl.com/86h82gb">#SPARTACUSREPORT Press Release</a></b></span><br />
<span style="font-size: large;"><b><br />
</b></span><br />
<span style="font-size: large;"><b><a href="http://tinyurl.com/78erjru">#SPARTACUS REPORT into proposed Disability Reform</a></b></span><br />
<span style="font-size: large;"><b><br />
</b></span><br />
<span style="font-size: large;"><b><a href="http://twibbon.com/join/spartacusreport">Twibbon to support #Spartacusreport</a></b></span><br />
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<br />
The voices of those seeking to tip the genuinely sick over the precipice and down into the pit of contempt where human compassion and reason cannot penetrate, reached a deafening pitch long ago. Voices of politicians, tabloids, journalists, the media, even some less perceptive or cannily duped members of the public, clamoured to misidentify the 0.5% of benefit cheats with the 99.5% who have done nothing wrong but fall prey to illnesses that come as part and parcel with inhabiting the human body. These unfounded, murderous opinions have taken over the airwaves like white noise. Too long the truth about disability reform, told from the inside by disabled people themselves, has been drowned out. <br />
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But we are still here. With our complicated, messy lives, inevitably filled with fluctuating agonies, or mental illness, invisible suffering, lifelong and degenerative diseases. Plus our added struggles to access transport, public facilities, our careers, our friends and families, housing, mobility. We are still here, and the Spartacus Report, a clear, reasonable, passionate voice for all disabled people, is now here too. <br />
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At long last, at the eleventh hour, days before the final votes drag the Welfare Reform Bill, blindfolded, gagged and weeping at its own unfitness for purpose, through Parliament, we have found our voice. The Spartacus Report, funded, tweeted, shared, compiled, publicised, emailed, sent, advocated entirely by disabled people with the few energy "spoons" and fragments of healthy moments they have. Launched yesterday by the concerted efforts of a huge section of disabled voters with access to social media. Now backed by charities, celebrities, councillors, medics, along with so many disabled people and their carers and supporters who know this desperately needed Spartacus Report speaks for them as nothing else has been allowed to do in the current climate.<br />
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If time and spoons are scarce, please at least read and share the shorter press release on the link above, if it speaks for you too. Wear the publicity twibbon on your profile, as I am proud to do. If you can, share the full report to all who will listen, to help them hear the truth. It is entirely possible that the person you reach with the report may never have heard the full truth before. The government certainly hopes so. They have pulled out every stop to make sure the facts uncovered here about widespread opposition to their WRB proposals never come to light.<br />
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Or if, like I might once have done, you cockily think you will never need such a voice, because you are well, working hard, thriving and with a level playing field before you, think again. Disability is no respecter of persons. Neither is the system being put in place, dismantled, tinkered with and made a monster of; if the WRB goes ahead, we will all be at the mercy of its vicious disregard for human need in the years to come.<br />
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Spartacus was a famous leader in Roman times who headed an uprising of oppressed people, fighting for their freedom against a slave-owning oligarchy. We disabled people of the 21st century in the UK have no desire for violence, hatred, war, vitriol or physical weapons. Personally, I believe our armoury lies in reasoned argument, shared hope and encouragement, patience, resilience, persistence, humour, a holding onto the truth and a call to the deepest wells of the human spirit, that no regime relying on greed or propaganda can ever wholly crush.<br />
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I support the spirited, truthful voice of the Spartacus Report.<br />
If you do too, please don't hesitate to show the world you too are breaking the silence with a voice that can no longer be ignored.<br />
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Blessings to you and yours.Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-35775076201900186672012-01-04T06:09:00.000-08:002012-11-13T14:34:56.891-08:00Brain Fog: Slow Down and Simplify, Please!<div class="separator" style="clear: both; text-align: center;">
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One of the better definitions of "Brain Fog" in M.E. I found recently here at <a href="http://www.brainfog.org/">www.brainfog.org</a><br />
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They rightly summarise how we spoonies struggle:<br />
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<strong>brain,</strong> <em>n.</em> soft, soggy, vaporous, cloud located in upper cranium between ears.</div>
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<strong>fog,</strong> <em>n.</em> soft, soggy, vaporous, cloud located everywhere else.</div>
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<strong>brainfogged,</strong> <em>adj.</em> when one is so completely foggy of heeed that they make sense to none but their own kind.</div>
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Cognitive dysfunction just doesn't cut it as an explanation, does it? If you say you've got 'cognitive dysfunction', people raise an eyebrow in disbelief. If you've got letters after your name and educated to postgraduate level, having made a living with a large element of public speaking, they seem to think you can't be serious that this is a problem? </div>
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Mind you, brain fog also tends to be underestimated when you hit middle age. Everybody thinks they know it and suffer from it. They mix up a couple of words or lose their car keys and think this is what you're talking about in relation to M.E. It elicits as many "join the club" comments as "tired all the time" makes people imagine they understand what you're going through. It's why certain people still deliberately inhabiting the underside of stones continue to insist that "chronic fatigue syndrome" is an adequately descriptive nom de plume for myalgic encephalomyelitis.</div>
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With true organic M.E., this Brain Fog, which I can rarely type correctly first time without it ending up as "BRIAN fog" (!) that makes it sound too cuddly, often worsens alongside a slump in other symptoms. It's not just some sign of getting older. How we wish!</div>
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On days when pain, exhaustion, light intolerance, gastrointestinal issues and nausea etc are worse, brain fog wants its extra pound of flesh out of us, too.</div>
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For me, this means words (usually the most obvious nouns, phrases, verbs) go completely AWOL. Sparrows become strawberries. If you're lucky enough to hit on a word at all! Yes, it can be comic. But it sometimes fosters a feeling of frustration and almost panic, as people "helpfully" and usually wrongly, supply the missing word. Conversation becomes a form of cryptic crossword. I usually lose.</div>
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Now, on the infrequent occasions I'm well enough to speak to a group, every word has to be written down in case I lose my thread as my energy and voice quickly drains away. Extemporising is a luxury of the past. That's also why phone conversations are such a nightmare. Unprepared, you can't work out who is at the other end. Facts aren't at your fingertips; spoons and mobility are lacking to fetch them from distant cupboards or locked doors in the brain. There's nothing to pin your thoughts around and it can feel like exposed floundering in the dark. It's exhausting and humiliating.</div>
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With Brain Fog, sometimes I can't hold an idea, word, number, or phrase in my head long enough to use it. I read a phrase time and time again, losing the sense a moment later, which makes reading anything with a plot more than a little challenging! M.E. bloggers will all know the frustration of trying to remember an idea they wanted to write about, but forgot before they could even make a note of it!</div>
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Multiple choice is another minefield or a ladder into a dungeon with missing rungs. People will ask a question, and instead of pausing on a choice on which you can focus and decide, suddenly the first choice is followed with a barrage of alternatives. Meal choices, TV programmes, appointment dates. We can't process information as easily at such times. Even when the Brain Fog is just a bit misty!</div>
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Just give us a "yes" or "no" choice, once in a while, and please speak slowly! We aren't being awkward, we're just being chronically sick.</div>
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Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com1tag:blogger.com,1999:blog-8679499696683843291.post-82893303660641934752012-01-03T11:28:00.000-08:002012-01-03T11:32:13.442-08:00M.E.'s darkest moments: I am worn out from groaning!<a href="http://bit.ly/vQgMEY%20">Llewellyn King: ME/CFS: Into 2012 without Cure or Care</a><br />
<br />
The link above is a wonderful article exposing the reality of M.E.<br />
I confess I wept on reading the quote from the lady who, speaking about her worst moments with M.E. when bedridden and housebound completely, wrote in an email to Mr King:<br />
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<i>"I am not sure I can hang on another year, when every day is so hard to get through. Just a few weeks ago, a doctor laughed at me and said there was no such thing as [my disease], and my husband just sat there, not once backing me. That was more hurt than I can carry for another year. I pray every night, 'Now I lay me down to sleep and please, Lord, take me before I wake.' ”</i><br />
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I reckon we have all been to that precipice point when housebound and bedridden. I recall turning my face to the wall, as best as I could, when I could hardly roll over in bed,<i> </i>one time when my M.E. was at its very worst and sobbing "My life is OVER!"<i> </i>Even with deep faith and conviction that God is in charge, exhaustion brings agonising wilderness moments when we feel nothing but alone. Just like the Psalms constantly cry out from the darkest corners of agony, it's 100% natural as children of faith, we grieve for the full potential we see sucked out of us by devastating weakening illness. Even if, in our heart of hearts we're convinced our lives are valuable whatever our disability, our emotions often tell a bleaker tale.<br />
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Could we claim to be fully human if such moments were alien to our experience? We shouldn't feel ashamed of our tears and rage, or count it as weakness. We just need to support one another through the darkest hours. If we have a faith, we need to embrace the truth that sometimes we need resources outside our own limited striving, to lift us gently up from the pit of despair and to hold us cradled when the last spoon of strength we have is utterly spent, till the worst storms pass and even though so sick we can look from a new perspective.<br />
<br />
<br />
"<i>Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony</i><br />
<i>My soul is in anguish. How long, O LORD, how long?</i><br />
<i>I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. </i><br />
<i>My eyes grow weak with sorrow" </i>(Psalm 6 verses 2, 3, 6 & 7)<br />
<br />
I wish I'd a pound for every time since M.E. struck me down that these words express what I sometimes feel. We know we're not alone feeling these emotions. They've been part of being alive since God was a lad!<br />
<br />
What a travesty and disgrace it seems that such heartfelt pleas as Mr King's are still so needed after all this time as a New Year rallying call. Haven't we been campaigning and raising awareness long enough for the world, the medical establishment, the governments, the public, the researchers to take for granted the urgent need for progress right now to cure and care?<i></i><br />
<i><br />
</i><br />
But we know different and I'm so grateful for Mr King's articulate call to action. We need to whisper it, croak it, shout it, demonstrate it till truth and justice and healing dawn at last.<i> </i>Personally,<i> </i>I believe God's big enough, loving enough and patient enough to carry us till that day.<i> </i>Even if you are convinced that God is just wish-fulfilment fairytale bunkum, there's still a reason to hang on in there for your own sake and the sake of spoonie friends everywhere, to help make the world sit up and take notice of what's right and what's worth fighting for.<br />
<i><br />
</i><br />
As Llewellyn King writes so well:<br />
<i><br />
</i><br />
<i>"A cure this year is unlikely, but better understanding can start today. Now...Maybe in 2012 the voiceless victims of ME/CFS will be heard, even faintly.</i><i>"</i><i></i>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-56799531022742286052012-01-02T09:59:00.000-08:002012-01-02T09:59:20.661-08:00"Spooney!" said the clerk...what the Dickens? M.E. Brain Fog strikes again!<div class="separator" style="clear: both; text-align: center;"><a href="http://www.victorianweb.org/art/illustration/furniss/22.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://www.victorianweb.org/art/illustration/furniss/22.jpg" width="411" /></a></div>Some days I can't concentrate to read. You've probably found the same problem? I think it's a very common experience for people with M.E.<br />
<br />
One day on Twitter, I couldn't work out, after looking at it several times, whether what I was seeing was my own Twitter name or somebody else's with very similar letters. With M.E.-related cognitive dysfunction and brain fog, inputted info sometimes gets mangled on the way in - and out!<br />
<br />
The times I have to check and recheck what I write would have to be seen to be believed by anybody not sharing our enforced 'Spoonie'-dom! This often brings laughter. On really bad days, it brings tears of sheer frustration through exhaustion! Even after endless checks, some real "howler" mistakes slip through. As a grammar Nazi by natural inclination, few things are more galling to me than seeing errors I've made in print just through M.E., when before, I could have spotted them a mile off! The silver lining here is the empathy this frustration can give us for friends with dyslexia who deal heroically with word blindness all day, every day. Not just when brain fog descends.<br />
<br />
Reading and writing are some of my principle joys in life. So naturally, I notice the changes to perception and information processing M.E. has brought.<br />
<br />
Over Christmas, I was rereading Charles Dickens' "Great Expectations" on Kindle. I love Kindle. Light as a feather to lift and hold. Adjustable text size for aching eyes. Adjustable brightness for light-sensitivity. No cumbersome pages springing back or weighty tomes hurting your fragile wrists. Much as I love "real" books, with M.E. they present untold problems, though I hate to admit it as a book lover.<br />
<br />
It shows how much M.E. changes your life when your mind immediately reads a capital "ME" as "M.E." in most contexts. I was getting tired and struggling. I was rereading a sentence, a paragraph, a short phrase time and again just to take in the meaning and follow the plot!<br />
<br />
I was reading Chapter 20, where the hero Pip travels to London to be schooled to become a "gentleman" and fulfil the eponymous 'great expectations' predicted for him. In the lawyer Jaggers' office, Pip witnesses a heated exchange between Jaggers and a man called Mike.<br />
<br />
I read the line:<br />
<br />
<i>"You infernal scoundrel, how dare you tell ME that?"</i><br />
<br />
Of course, the capital letters "ME" at first jumped out at me as a reference to our illness! This wasn't helped when over the (virtual) page, came the line:<br />
<br />
<i>"Spooney!" said the clerk, in a low voice, giving him a stir with his elbow.</i><br />
<br />
I don't recall associating either the capital letters ME or the word 'spooney' with a devastating neurological disease last time I enjoyed a Dickens novel! Really need to get out more, don't I? If only, eh?<br />
<div class="separator" style="clear: both; text-align: center;"><a href="http://www.victorianweb.org/art/illustration/green/7.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="640" src="http://www.victorianweb.org/art/illustration/green/7.jpg" width="396" /></a></div>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-22091604360894519962012-01-01T13:21:00.000-08:002012-01-01T13:21:13.060-08:00Ed Miliband's Happy New Year to the Hardest Hit<a href="http://bit.ly/v9vmpA%20">Now Ed Miliband gets tough with onslaught against "evil" of benefits scroungers</a><br />
<br />
Happy New Year to the genuinely sick, disabled and hardest hit in society.<br />
<br />
Labour joins ConDem's vicious rhetoric of recent months, tarring everyone genuinely unable to work, or unemployed through lack of jobs in the current economic cuts, with the same stigmatising brush as the 0.5% of claimants who aren't genuine.<br />
<br />
Why don't they root out this tiny minority once and for all? So the genuine, struggling 99.5% of citizens can be freed from vitriol and opprobrium they have never deserved?<br />
<br />
Either this article outlines a parroted-for-votes, tabloid-licking ignorant whine that shows no basic understanding of issues we expect from the politicians we all elect, or it is sinister in the extreme. This is not even an intelligent ploy to win Labour votes!<br />
<br />
Evil or plain stupid? You can't have it both ways.<br />
<br />
Many today are exasperated beyond measure, from every shade of the political spectrum. The "facts" here are hyped half-truths and downright lies. The real policies to move us forward are conspicuous by their absence.<br />
<br />
What a cruel joke to remember how Kaliya Franklin (@Bendygirl) used all her strength, persistence and perspicacity to show Miliband the difference between "scroungers" and the genuinely disabled and chronically or fluctuatingly sick. Watch again, incredulous as you may be after today's U-Turn from Ed Miliband's moral compass <a href="http://youtu.be/tmi0x6lJckI">here</a> <br />
<br />
Kaliya Franklin, from her wheelchair at the 2011 Labour Party Conference last September, won the argument with Miliband so recently, he cannot possibly claim to have forgotten his pledges and promises in the wake of their meeting so soon. Shame on him.<br />
<br />
Here he blithely regales us with his New Year Message for 2012:<br />
<br />
<i>"When politicians shrug their shoulders in the face of other people’s despair, they are not just abdicating responsibility, they are making clear choices. That is as true now as it was in the Great Depression during the 1930s."</i> <a href="http://www.labour.org.uk/politics-can-make-a-difference-ed-miliband-new-year-message">Politics can make a difference: Ed Miliband New Year Message</a><br />
<br />
With the quote above, he surely writes his own political epitaph.<br />
<br />
With no difference now discernible between the major parties' lines about the most vulnerable in society, we must look elsewhere for compassion to carry us through what we can be sure are desperate days. Days that put me in mind of words ex-Laureate Ted Hughes wrote in his poem 'November', still true about the trials faced by so many this January.<br />
<br />
Only Hughes was just capturing the merciless weather. Animals caught by poachers or gamekeepers hung helpless but stoical on a fence. This is hate treatment meted out to vulnerable, ordinary human beings with no redress or resources to fight back, in many cases. But the tide has to turn one day.<br />
<em></em><br />
<br />
<em>In the drilling rain. Some still had their shape,<br />
Had their pride with it; hung, chins on chests,<br />
Patient to outwait these worst days that beat <br />
Their crowns bare and dripped from their feet.</em><br />
<em><br />
</em>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-74427927096154048142011-12-22T07:35:00.000-08:002011-12-22T08:06:02.705-08:00The dreaded DWP phonecall - but all is calm, all is bright (for now!)It seems a crazy and contradictory situation to be thankful for being told you are "unfit for work". Does that make someone a scrounger or a conscientious realist? I hope you can understand my gratitude that for now, while I am too ill to leave bed or house some days, this is the best outcome for me for the time being.<br />
<br />
An older gentleman from the DWP rang me this morning at 9.48am. I thought he was about to tell me I was being called in for a Work Capability Assessment (the much-criticised and humiliating DWP medical) carried out by ATOS.<br />
<br />
On the contrary, he was very gentle and full of reassurance. Nothing to worry about, it was a "courtesy call" to tell me the outcome of my filling in the ESA50 last month. Because this is just a couple of days before the post shuts down over Christmas, he wanted me to know the outcome, just in case the official letter doesn't reach me in the next few days. He hopes it will come tomorrow, but can't be sure with the Christmas rush.<br />
<br />
He explained that my migration from Invalidity Benefit (IB) to the new equivalent Employment and Support Allowance (ESA) has been successful. He also stated that I should not be contacted again for WCA for 18 months. The change over should happen about January 17th, and the rate will remain the same. I asked whether this meant Support Group (SG) or Work Related Activity Group (WRAG) and he said the latter, which is right, and what I had hoped.<br />
<br />
This usually entails 6 Work Focused Interviews (WFI) with a personal adviser. These cover matters like dealing with your illness, acquiring skills, voluntary work etc that may help prepare for a future return to work. Basically, tackling any barriers that need to be overcome in order to return to employment. The sort of things always uppermost in my plans and the focus of my efforts even on my very worst days. (Also a more structured equivalent of the work related interviews I had in 2008 with a personal adviser at the local JCP in the weeks after my original claim once SSP had run out).<br />
<br />
I will need to be careful to try and be well enough to attend these WFIs when called, as this is part of the contract, even though at the moment (until and if the hotly contested 1-year time limit on contributions-based ESA comes in through the Welfare Reform Bill in April 2012) there is no sanction if you cannot find a job by the end of the 6 WFIs. That is tomorrow's worry, even if it remains today's fight on behalf of all those who have not been fortunate enough to have been placed in the correct group. Please don't think this post is smug or triumphalist. I feel for everyone who has fallen foul of the deeply flawed system through no fault of their own.<br />
<br />
Figures I have seen claim that, of those who apply for ESA:<br />
6% - Support Group<br />
16% - Work Related Activity Group <br />
36% -claim withdrawn<br />
3% - claims in progress<br />
39% - "fit for work" <br />
<br />
Sorry if these aren't the latest statistics. I've seen various figures quoted and am now so brain-fogged, I can't sift them for the most recent! This info is taken from <a href="http://wheresthebenefit.blogspot.com/2011/02/does-your-condition-make-you-likely-to.html">here</a><br />
<br />
Point I'm trying to make is I feel very fortunate I have been put in the WRAG, at least, just from medical information without the full ATOS medical. Perhaps they looked back at the one I had in 2008 and saw from my records that my illnesses (Type 1 diabetes, no hypo symptoms & M.E.) have not improved, and have in some ways deteriorated.<br />
<br />
I would be interested to see the ESA85 medical report from which such a decision was taken, but won't do this with any intention to appeal. The support group is limited to very specific cases, and if the time comes when I fit those criteria, it will no doubt be apparent to those putting me through the various work-related hoops!<br />
<br />
More determined than ever to keep trying to raise awareness and fight for the many people in dire need who have been cut adrift. When I was fit to work in years past, I always tried to be compassionate to those who were hardest hit in society. I won't be stopping now. Though at the moment, I must leave the blazing ferocity of the laptop screen and rest in a darkened room! Certain nightmares have been put on hold, for now. If I was any more thankful and grateful, my heart might well explode!Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-1974598146286760302011-12-21T05:31:00.000-08:002011-12-21T15:30:31.931-08:00MRC announces ME/CFS research projects worth £1.6m<a href="http://www.meassociation.org.uk/?p=9760">M.E. Associations breaks the news embargoed until today</a><br />
<br />
This sounds like great news, if it is funding for biomedical research.<br />
<br />
I'm not really sure what to think, yet. Any ideas on the people behind the various projects?<br />
<br />
There doesn't seem to be an immediate drive to separate Myalgic Encephalomyelitis and its causes from "Chronic Fatigue Syndrome" with its flabby umbrella of symptoms muddying the waters. M.E./CFS is still referred to as "the illness". Frustratingly, CFS is referred to first, i.e. CFS/ME many times in the press release. Is this going to be more smoke and mirrors?<br />
<br />
I sincerely pray it won't just be more money down the drain, like the PACE trials.<br />
<br />
Much to be cautiously hopeful about for 2012.Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-33645264649606990182011-12-20T10:09:00.000-08:002011-12-20T12:44:27.655-08:00Shuttlecocks and Shattering Shocks<a href="http://www.bbc.co.uk/news/uk-politics-16253389">BBC News: Is the new disabled work benefit working?</a><br />
<br />
I don't hold out much hope for this programme tonight. I don't get a good feeling from this BBC preamble by Helen Grady.<br />
<br />
An M.E. sufferer who is "one of the country's top wheelchair badminton players" and "a regular at live action role-play festivals"? Some mistake in the report? Some mistake in the diagnosis? I don't pretend to know.<br />
<br />
Perhaps it's just my ignorance. I thought being top at badminton must mean you can do more than apply yourself in "short bursts". I know shuttlecocks are light pieces of equipment. Badminton isn't squash. But even from when I played it very occasionally years ago, before M.E.completely shut down my neuro-immune system, I know it's one heck of an energetic game. Far beyond anything I could manage now. Is it just because I'm now 50, having suffered M.E. in remitting-relapsing deteriorating pattern since at least my 20s, and the M.E. sufferer in the above-linked article is still only 27?<br />
<br />
I sat talking to visitors today. Sat slumped, propping my head to help my neck to support it so as not to appear rude or bored. Two low-maintenance dear old friends this morning who did most of the talking. One dear old friend this afternoon, to whom I showed a slide show of photos on the laptop as we chewed over some family history brick walls, a shared interest that brought us together. My Mum even stayed long enough to make the tea for us to save me some extra "spoons".<br />
<br />
Now I am utterly crashed. Head spinning. Throat hurting and hardly any voice left. Wrists too sore to type for long. Eyes blurred. Unsteady. Ears singing. Heart palpitating. Feverish and shivery. Nausea and pain making eating tea difficult. Forgetting my words. Exhausted to point I need to sink down right here on the carpet, if I didn't risk not being able to get up again. Hot and cold by turns because my autonomic nervous system is completely up the spout.<br />
<br />
Even without badminton or any outing today, many things with M.E. are way out of bounds now to me. Co-ordination, concentration and strength to drive, for one (though diabetes type 1 with no hypo warnings rules that out in any case). Badminton or any strenuous sport, for another. Self-propelling myself in a wheelchair for yet another. Even carrying and using my walking stick is making my hands, wrists, arms, shoulders and chest unbearably sore this last week.<br />
<br />
A dear family member, also diagnosed with M.E. much younger than me, who got treatment right away, does drive now, does some teaching and plays some tennis and does some cycling. So I know it's possible, in remission. But she is always aware of her limitations. At her worst, she has the huge frustration of knowing she can't keep it up, either safely, or at all.<br />
<br />
I have to lie down, now. I can't say more about this today. I refuse to whine. I won't criticise. But I fear the backlash here, yet again, from people convinced that with full-blown M.E. we are all fit for the Olympics and driving from Land's End to John O'Groats on a regular basis. We are patently not. Not all of us. That's all I know. Am I living on a parallel planet? ATOS are sponsors of the Paralympics. Is this propaganda for them?<br />
<br />
No doubt I need to shut up, rest and listen to the programme with an open mind, if possible, even if with a pretty foggy brain! <br />
<br />
I doubt after my little goals today I'll still have the concentration to listen reliably. Neither the concentration, the stamina or the heart. Not in Christmas week. Not when the tiniest unexpected, even delightful moment, can soak up the last bit of energy and health at my fingertips. Not while we're still reeling at the news that renowned and tireless diability rights campaigner Sue Marsh (if only poor Sue was really able to do all she does and not be made disablingly sick and tired!) joins the legion of genuinely very sick and disabled refused help: <a href="http://www.guardian.co.uk/commentisfree/2011/dec/20/disability-living-allowance?CMP=twt_gu">Guardian: Comment is Free: Sue Marsh: No disability living allowance for me. Nowhere to turn for many more</a><br />
<br />
The description of tonight's programme runs:-Can You Touch Your Toes, presented by Anita Anand, will be broadcast on BBC Radio 4 at 20:00 GMT on Tuesday 20 December.<br />
<br />
If I manage to listen to "Can You Touch Your Toes" with eyes shut and brain engaged, I'll try to blog about it later or maybe tomorrow to open a forum here for any reactions.<br />
<br />
I began by saying I don't hold out much hope. But I still do. I always will. Or that really would be the end of the road.<br />
<br />
<i>Footnote: Having listened now, I really haven't much inclination to add to my comments above. Spoons are precious to all of us. My experience of M.E.bears little resemblance to what was implied on the programme. I can't speak for others. That ATOS and the WCA is deeply flawed was clearly demonstrated, though. I'm off to practise for enforced work as a draught excluder. Night all. Tomorrow's another day.</i>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com0tag:blogger.com,1999:blog-8679499696683843291.post-55950082161823827622011-12-15T13:47:00.000-08:002011-12-20T10:42:54.235-08:00You don't understand M.E. - on The Wright StuffThus runs the blurb for a slot on Matthew Wright's "The Wright Stuff" this morning. It's about the latest study on M.E. and school absenteeism:<br />
<br />
<div style="background-color: white; color: purple;">'Part 5: You Don’t Understand M.E.! <br />
Then: You don’t understand M.E! A new study suggests one in 100 school kids are battling chronic fatigue syndrome, a major reason for absence. What’s more most are undiagnosed which is perhaps not surprising as the symptoms include extreme tiredness, lapses in concentration and mood swings. It’s clear a lot of you want to talk about ME and the way the rest of us react to it, so that’s what we’ll do.'</div><br />
Sorry this has adverts. Sorry it needs scrolling through till you get to the M.E.bit. For once, IT WILL BE WORTH IT! (It's after the 4th ad-break from about the 52nd minute onwards).<br />
<br />
I was frankly sceptical before I managed to watch it on Channel 5 catch-up. We've had our bellyful of tomfoolery, after all, haven't we, with yesterday's offerings from the Food Hospital? <br />
I only noticed it when it was mentioned on an M.E. chat group.<br />
<br />
So I waited till I'd recovered from a lovely but exhausting Christmas visit from friends who really DO understand M.E. Then I tuned in, all but peeping between my fingers from behind the settee. Well, lying on the settee, anyway.<br />
<br />
<br />
IF YOU WATCH NOTHING ELSE THIS CHRISTMAS, PLEASE WATCH THIS! IT'S THE MAINSTREAM M.E. COVERAGE YOU HAVE BEEN WAITING FOR ALL YOUR LIFE!<br />
<a href="http://www.channel5.com/shows/the-wright-stuff/episodes/episode-239-15">You Don't Understand M.E. on "The Wright Stuff" Channel 5 15th Dec 2011</a><br />
<br />
<br />
Matthew argued it was "still the most misunderstood" illness in a build-up link earlier in the show, so I took that as hopeful! By the end I was almost weeping with thankfulness and joy!<br />
<br />
Snippets include: Matthew Wright saying M.E. has been "given horrible nicknames in the past". He made the effort to pronounce myalgic encephalomyelitis correctly and list many of the symptoms over and beyond fatigue.<br />
<br />
There was sympathetic balanced comment on the "confusion" over the disease in the popular imagination. Virus, glandular fever, genetically inherited, cycle of good and bad times, crippling - you'll hear all these words spoken with true feeling! A miracle in itself!<br />
<br />
Esther Rantzen and Emily were shown in a photo (from the Mail Online site - but don't despair!). Guest Anne Diamond only said how she considered Esther a tuned-in mum, so she took seriously that this was a real crippling disease.<br />
<br />
It was questioned, considering all that's known about M.E., whether it was feasible, as this latest study claims, that early diagnosed teens can get well from this in 6 weeks.<br />
<br />
So refreshing to hear the tone of the discussion and helpful content being broadcast to the nation. Excuse me if my hasty notes are a bit sparse. I know you'll want to listen for yourself, when well enough, anyway!<br />
<br />
Why not listen to it as an early Christmas presie to yourself? It'll get you in the mood to celebrate even if you can't raise your head off the pillow!<br />
<br />
Anne Diamond spoke from a parent's point of view. The need to know when something is just teenage malaise, and when it is the serious neurological disease M.E. I couldn't get used to all the worried, shocked expressions on the faces of the panel and the audience alike as they heard the truth, many of them for the first time!<br />
<br />
Anne said there was evidence (evidence!!! wheeeeee!) that there clearly is something there. She compared it to her personal experience and campaign for recognition of Cot Death. Cot Death used to be pooh-poohed too, but is now recognised and taken very seriously.<br />
<br />
Another guest, Steve Furst was asked if it might be psychosomatic, but countered at once that understanding is in many ways embryonic, so that's not something people can assume at all. Genius!<br />
<br />
It's all about education, I believe one of the panel said. Oh yes, it is! Amazingly, this programme has been the best thing I have EVER seen, for educating the wider public and dismantling the rubbish that's the usual fare we're served about M.E. in the media, in doctor's surgeries and elsewhere.<br />
<br />
It was said, from the study, the implication is that it is easier to treat if caught early. Later diagnosis means the disease can have had a hold, doing untold damage for many years.<br />
<br />
Then they took three callers on the phones. All three wonderful callers made the time left really count, and none of us will be able to thank them enough. Not a word was wasted.<br />
<br />
Jo (32) from Dorset had been diagnosed at 15 when doing her GCSEs. She told of being bedbound for a year and needing to use a wheelchair at times, her mum having to carry her up the stairs. You could see the guests wince at the revelation of such real suffering. Jo explained articulately that although much improved, she didn't consider herself cured even now, and had an "awful immune system". They concluded that if it's M.E. then, it's unlikely it could be cured in just 6 weeks! It was acknowledged that depression, suicidal thoughts, mental anguish only follow from the unremitting severe suffering, and are not a cause of the disease. Jo had improved after having an op on her ovaries, but nobody knew if this was connected. Just like a friend of mine who is in remission from severe M.E. after cancer treatment. One day we will know if these other treatments are affecting the body systems attacked in M.E.!<br />
<br />
Jo said she had lost most of her friends, who grow tired with waiting about for someone who can rarely join in.<br />
<br />
Duncan from the Orkney Islands was the second caller. His wife is ill with M.E.He explained how short term memory loss is one of the long term side effects she suffers. This makes it impossibly difficult to hold converstions on the phone. How familiar does this sound? How refreshing to hear the truth spoken to help everyone out there to begin to understand. Comments came from the panel like "Shattering!" "Terrifying!" "The lack of help!" and "To be treated as if there's nothing wrong with you!" The message was certainly hitting home at last, with not a nay-sayer in sight!<br />
<br />
<br />
Will was the third and final caller and also spoke so well. Matthew Wright was genuinely sorry, wishing they had more time for the subject. The studio phones were apparently ringing off the hook. He ended the segment, regretfully, by saying he couldn't think of a phone-in so disquieting. He finally promised, "We will do it again!"<br />
<br />
I promise this one will restore your faith in at least a section of the media. I hope the awareness it has begun to raise will be the biggest winter snowball ever. I hope, like me, it brings you hope and joy this season! XXXJoycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com2tag:blogger.com,1999:blog-8679499696683843291.post-73418467363852543172011-12-14T06:16:00.000-08:002011-12-14T07:59:22.761-08:00Is it just M.E.? Or am I sick and tired of being a bit peckish?Food Hospital on Channel 4 last night caused such a shock wave of disbelief and anger through the online community of Tweeps with M.E. It's a wonder it wasn't top trending! Ulcerative colitis only got in the trending list yesterday, of course, because the news had broken that celebrity UC sufferer Darren Fletcher, Manchester United footballer, announced the disease would force him to take a long break from the game. M.E. hasn't made such headlines since the last of the umpteen times Emily Rantzen claimed to be "cured" by the Lightning Process before relapsing again!<br />
<br />
Food Hospital's episode including "Chronic Fatigue Syndrome" came on the same day as BBC Breakfast revealed 1 in 100 secondary schoolchildren were "sick with M.E." This, of course, after being "diagnosed" in haste with some then "fully recovered" after six months. No Canadian Criteria used, naturally, where a whole range of diagnostic symptoms that include much more than mere "tiredness" have to last for at least six months anyway!<br />
<br />
Viewers to the Today (link on yesterday's blogpost) programme were fed the old lie that "M.E." (the auto-immune, neurological, severe and chronic endocrine disease) was identical to the woolly umbrella term "CFS" (a collection of symptoms that can apply to any number of different ailments). All the old myths and dangerous half truths.<br />
<br />
Then comes "Food Hospital" with its patronising, simplistic smorgasbord of pseudo-science. People wonder why PWME (People with M.E.) despair, faced with this relentless tide of misinformation. We all needed to take the phones off the hook last night to avoid the calls of well-meaning "friends" seduced by this plausible tosh, telling us they'd just seen a mainstream programme that showed a "cure" for our oh-so-annoyingly persistent multi-systemic physical disease!<br />
<br />
The cure? Simple! The girl (Steph) who had been feeling less than well for some 13 years when she was a student, quite evidently had Chronic Fatigue Syndrome. NOT M.E., though no doubt one of the 52% of GPs "confident" in diagnosing M.E., or the 48% who still can't be bothered to learn about it, had told her she had M.E. In no way is this that poor lass's fault. I'm sure we all wish her well and health to enjoy the rest of her life.<br />
<br />
The food experts, while peddling all the usual lies that M.E. could still be psychological in nature rather than physical, took a rough survey of Steph's perceived symptoms. Turns out she wasn't eating regularly. Most of her vague headache symptoms, aches and tiredness were down to blood sugar issues and dodgy eating habits.<br />
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Hey presto! The prescription?<br />
<br />
1.Nibble a bit of dark chocolate (serotonin levels, blah blah blah, nothing new there) which she admitted on camera actually had no effect whatsoever.<br />
<br />
2. Regular healthy eating. Which most of us, not least those of us with co-morbid conditions like Type 1 Diabetes, have followed with absolutely no effect on other complex M.E. symptoms.<br />
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Next thing we know, Steph is swimming. Slow but sure signs of recovery. They had to stick a bit of Graded Exercise Therapy (GET) in there, to placate the Psych school, didn't they? She's back at work, too, and Bob's your "fit for work" uncle! DWP kept happy (if deluded) too! Sorted! Simples!<br />
<br />
-CFS caused by the above - cured. Tick.<br />
-M.E. caused by faulty neuro-immune/endocrine damage - no dice. Cross.<br />
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Twitter was on fire. For genuine PWME, knowing we have each other's understanding is one of the few things that stop us despairing. Stop us going crazy under the added pressure of the media and government's refusal to show M.E. as it actually is. Not the way it would be convenient; that is, if it could morph seamlessly into Chronic Fatigue and then melt away with a bit of diet and lifestyle gobbledegook leaving patients glowing with health and grateful to every quack and charlatan.<br />
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WARNING: Don't watch the codswallop on the first link below if you actually have Myalgic Encephalomyelitis rather than a bit of mild "chronic fatigue" without<br />
a) watching your blood pressure<br />
b) having a pillow to punch and/or bite<br />
c) being in a mood to laugh rather than cry<br />
d) realising some of these buffoons will one day have to eat their words<br />
<br />
<a href="http://www.channel4.com/programmes/the-food-hospital/4od#3264137">The Food Hospital Series 1 Ep7 on Channel 4 First Broadcast 8-9pm 13th Dec 2011</a> Serious chronic neuro-immune disease or a bit tired and hungry? PWME watch at own risk! Opinions expressed on this blog are my own.<br />
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<a href="http://news.bbc.co.uk/today/hi/today/newsid_9661000/9661082.stm">Dr Esther Crawley talks to John Humphreys on BBC Radio 4</a> (John Humphreys surprised it can be genetically inheritable, and happy to revive "Yuppie Flu" and "M.E. properly called Chronic Fatigue Syndrome" etc. Makes you realise what he was actually thinking when he was in the flat of a woman with M.E. in his benefit cheats programme.)<br />
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<a href="http://youtu.be/IkbvSEmEZMk">Dr Ian Gibson talks on BBC Radio Norfolk about who & what is really behind this refusal to accept M.E. as a neurological disease</a> Dr Gibson is honest about the real vested interests that insist M.E. is psychiatric. Namely the man who "runs the whole show." (*cough* Simon Wessely ??? *cough*). Surprise, surprise. So refreshing to hear someone with real expertise saying what so many have long suspected. We're not out of the woods. But somebody must be running scared by the truth!Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com9tag:blogger.com,1999:blog-8679499696683843291.post-13909476312913202292011-12-13T03:34:00.000-08:002011-12-14T06:43:07.732-08:00A voice crying in the wilderness?The Welfare Reform Bill is now in the final stages of being read and voted through the House of Lords.<br />
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Yesterday came the dire news that under Universal Credit, all but the most severely disabled children's money will be halved. Yes - disabled children's means of support snatched away to pay for greedy bankers' mistakes. It is nearly Christmas. But tragically this isn't Dickens' "A Christmas Carol" we're reading in front of cosy fires. It's the reality of living in the UK.<br />
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This comes as we're still reeling from the announcement that cancer patients undergoing chemo are to face the shambolic humiliating pantomime of the Work Capability Assessment, that is proving so deeply flawed.<br />
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In more positive news, I got excited to see M.E. had crept into the midst of top news stories today. It was about BMJ Open's research here: <a href="http://bmjopen.bmj.com/content/1/2/e000252.full?sid=2b5f7387-3752-45b2-85fc-78fc25f47936">BMJ Open: Unidentified CFS/ME is a major cause of school absence</a> . The item on BBC Breakfast Time this morning can be watched here: <a href="http://bbc.in/uylbCL">BBC Breakfast : Chronic Fatigue Syndrome 'affects one in 100 pupils'</a><br />
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Can the Government continue to ignore and downplay M.E. after this? The cynic in me says of course they can. And will. The believer and fighter in me says, we have to move forward in hope and thankfulness. We can still light a candle in the dark.<br />
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Not wholly surprisingly, the impression viewers were left with is that M.E. is identical to the umbrella term "chronic fatigue symdrome"; and the mistaken myth that the disease myalgic encephalomyelitis can be cured in the shake of lamb's tail by a spot of CBT and GET before being fully diagnosed.<br />
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Meanwhile, it's taken most of my spoons to get through the simplest tasks in the lead-up to Christmas. Last week I "paced" myself through sending, emailing, addressing, personalising my usual batch of around 200 cards. That put me out for the count for days afterwards.<br />
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On Saturday, with lots of support from my mum, I managed to put up a tiny nativity set on my window ledge and decorate our small tree that sits on the floor where I don't have to stretch much. Trailed tinsel round a few surfaces. Stuck the cards along the closed piano lid. Pinned "Peace on Earth" banner to one wall. Placed a few candles on the mantelpiece. That was all I could manage, and plenty to make the room look ready for the quiet time chronic sickness demands I spend. Don't get me wrong. Jesus' birthday will be filled with joy for me and mine just the same!<br />
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What energy and health "spoons" I've got left I used to cajole my addled braincells into writing a letter and an email to try and do my little bit to challenge the worst Scroogeliness of the Government.<br />
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First was a letter to Baroness Benjamin, Lib Dem peer in the House of Lords. Well, I used to watch her on BBC's children's programme 'Play School' playing with Hamble, Jemima and Big and Little Ted. Maybe she owes us one? Seriously, she has a heart for children. I wrote to ask her to oppose the proposed one year time-limiting of ESA (Employment and Support Allowance), which will impact on children within affected families too.<br />
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The second was an email to David Cameron, the PM. The Commons, not least his partner in crime Nick Clegg, have been giving him a rough ride this week over his veto on the EU. Yesterday I did my part to encourage him to reconsider this halving of benefits to the families of disabled children. Neither issue may affect me directly, you may say. But, "we're all in this together" is true in my mind, even if David Cameron only mouths it when it suits. In the words of the Manic Street Preachers: "If you tolerate this, your children will be next."<br />
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Now we know this to be true, how can we stay silent?<br />
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..........................................................................................................<br />
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Letter sent to Baroness Benjamin (Lady Floella Benjamin) via the House of Lords:<br />
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<br />
<div align="LEFT" style="font-weight: normal;"><span style="color: black;"><span style="font-size: small;">Dear Lady Benjamin,</span></span></div><div align="LEFT" style="font-weight: normal;"><br />
</div><div align="CENTER"><span style="color: black;"><span style="font-size: x-small;"><b>Time-limited Employment and Support Allowance: Welfare Reform Bill Report Stage & Third Reading</b></span></span></div><div align="CENTER"><br />
</div><span style="color: black;"><span style="font-size: small;">I am writing to ask if you would consider voting against time-limited Employment and Support Allowance (ESA)? The proposal is to limit this to just one year, and can still be opposed, I believe, in the coming Welfare Reform Bill Report Stage and Third Reading.</span></span><br />
<br />
<span style="color: black;"><span style="font-size: small;">People with serious illnesses and disabilities are in despair at the prospect of being left with no income, scarcely able to function at home most days, let alone work. While I live alone, I feel I have to ask your help for others, including young people, who will be adversely affected by losing means tested ESA after twelve months if they live with somebody who happens to be fortunate enough to have an income at that time.</span></span><br />
<br />
<span style="color: black;"><span style="font-size: small;">I am a Methodist Minister, ex-junior school teacher, formerly the first English Methodist Mission Partner to Sucre, Bolivia. In 2007 I was forced to retire from my calling and profession by the neurological auto-immune illness Myalgic Encephalomyelitis, against which I had already been battling for over a decade since contracting giardiasis working in South America. If ESA were to be limited to one year, it would imply some miraculous cure is envisaged by the Government within that year. </span></span><br />
<span style="color: black;"><span style="font-size: small;"> </span></span> <br />
<span style="color: black;"><span style="font-size: small;">Like me, many disabled people are unable to work, even were jobs actually available, through no fault or “lifestyle choice” of their own. </span></span><br />
<span style="color: black;"><span style="font-size: small;"> </span></span> <br />
<span style="color: black;"><span style="font-size: small;">People with serious, lifelong, degenerative or fluctuating relapsing-remitting conditions will all be affected by this, children, young people and adults alike. People with Multiple Sclerosis, Myalgic Encephalomyelitis, some forms of Cancer, Parkinson’s Disease, Cardiovascular, Renal & Pulmonary Diseases, Mental Illness and many others will be left cut adrift from all hope and help, in spite of much empty rhetoric we hear to the contrary from Lord Freud and others. Meanwhile the media increasingly demonises all sick and disabled people and paints them with the same brush as benefit cheats and scroungers.</span></span><br />
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<span style="color: black;"><span style="font-size: small;">The one year time limit proposed for ESA is surely unfair and at best mystifying to right-thinking citizens? Where are the jobs or cures that make it reasonable or humane?</span></span><br />
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<span style="color: black;"><span style="font-size: small;">I know that at your Liberal Democrat conference earlier in the year, members voted overwhelmingly to oppose any such arbitrary ESA time limit. I respectfully plead with you, on behalf of all the genuinely long-term sick who are now living in dread of this, and so many other crushing blows from the Welfare Reform Bill, that you stand up for the most vulnerable members of society.</span></span><br />
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<span style="color: black;"><span style="font-size: small;">Many thanks for your understanding,</span></span><br />
<span style="color: black;"><span style="font-size: small;">yours sincerely,</span></span><br />
<span style="color: black;"><span style="font-size: small;">etc</span></span><br />
<span style="color: black;"><span style="font-size: small;"> </span></span><br />
<span style="color: black;"><span style="font-size: small;">................................................................................................................................</span></span><br />
<span style="color: black;"><span style="font-size: small;"><br />
</span></span><br />
<span style="color: black;"><span style="font-size: small;">Email to David Cameron about cuts halving benefit to disabled children:</span></span><br />
<span style="color: black;"><span style="font-size: small;"><br />
</span></span><br />
Concerning benefits for families with disabled children<br />
<br />
<br />
Dear Prime Minister,<br />
<br />
I am concerned about the 50% cut to benefits for many low income families with disabled children which was, to the horror of all right thinking citizens, voted through the Lords today.<br />
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Families with disabled children incur higher hidden costs, as I'm certain you know. These costs are worryingly high in wintertime. Many families with disabled children are forced to keep their heating on when mobility is impossible. <br />
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Any cuts to these household budgets already reined back to the bone are frankly inhumane. Your Government is proposing that within the Universal Credit, Disability Additions will be 50% lower than their current rate. £1400 less per year is more than these families can cope with. Why would you target unnecessary cuts at the most vulnerable disabled children?<br />
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I hope this Christmas you can find it in your heart to relent at the brink of this immoral and deadly mistake.<br />
Yours sincerely etc<br />
<span style="color: black;"><span style="font-size: small;"></span></span>Joycehttp://www.blogger.com/profile/03150169808844097249noreply@blogger.com1