What a Difference a Day Makes!

You know the old song "What a Diff'rence a Day Makes!" ? Well, with M.E., it certainly does, doesn't it?

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.

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!

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!

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.

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).

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!

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!)

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.

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!

What a difference a day makes! Shares can go up as well as down!

Pumping, 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!

Thank you so much for sticking with me and continuing to follow.

I'm more touched and grateful than I can say for your interest and patience here.

As many of you know all too well, M.E. is a fluctuating illness.
One day, coping. Next day, crashed.
One day, doing to the point of overdo. Next day, unable to raise your head from the pillow.

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!)

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!)

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.

Humphrey Pump-hrey - the new "man" in my life!

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.

...and introducing Rita the Glucometer Maid. Acts as insulin pump hand set, via bluetooth and  as an inveterate nag when glucose low or high!

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.

No - can't manage much but simple balancing & stretching yet!

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.

 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.

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.

That sums up where I am at the moment, then: Pumping, Pilates and (very often) Pffffffffffffft! Totally zonked.
But I'm just thankful to do what little I can, whenever I can, if I can, while I can.

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?

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.
IT'S NOT YOUR FAULT!
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.
It's not in your head either.
Find what helps you to thrive and enjoy whatever part of it you can.
Don't let the nay-sayers win by dragging you down.
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!

Ignorance isn't bliss - it's toxic!

Here we go again.

Sorry this blogpost may not be very thorough, spellchecked or rational.

Just seen this in today's online Daily Express in Dr Rosemary Leonard's column "Getting to the Heart of Medical Matters":

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.

Can you guess the content and suggestions?
Of course you can. No peeking.

1) the flu vaccine it is unlikely the jab is to blame as it does not contain any live viruses.
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.
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.
4) Reducing stress
5) a healthy diet
6) reducing alcohol

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.

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.

My GP sent me for 2) CBT and 3) GET. At an NHS "CFS/ME Clinic". So patient "fully compliant".

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.

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"???

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.

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!!!)

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.

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.

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)

 
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".

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?

I'm coping. Pacing. Enduring. Hoping. Thankful. Optimistic.

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 Proper Robust Reason?

When will you cure me, or just fess up, shrug at me with a look of condescending pity and hand over the cyanide pill? (N.B. Jokey sarcasm alert - you can go on dismissing my M.E., but you will NEVER change who I am inside!) :)

Without A Proper Robust Reason

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.

Only on a couple of occasions have the children themselves asked for the baptism.

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.

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.

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.

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.

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.

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.

My voice was rusty and failing a little by home time, but that always happens, since M.E. first struck.

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.

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.

Monday dawned. Mum was to come back to my home with me and then return to hers later in the day.

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".

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.

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!

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.

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.

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.

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!

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.

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.

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.

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!

Then today I read this online:

 Letchworth 20-year-old’s sudden death caused by dysfunctional immune system

In the 21st century, how long will M.E. and related illnesses, cause doctors, pathologists, coroners to say things like this?

“There is a history of being unwell for some time without a proper robust reason,” as a pathologist did about Tara Morgan, who died at 20 last September from: " respiratory and cardiac arrest due to autonomic neuropathy.”

A "proper robust reason"?

How robust a reason does M.E. have to be before it's taken seriously, for pity's sake?

The pathologist alludes to CFS (M.E.) as being most probably involved in Tara's cause of death:

"He added that Tara’s death could be related to chronic fatigue syndrome, a disorder defined by persistent fatigue." M.E., of course, is NOT "defined by persistent fatigue," but by a many of the symptoms and final causes of lung, heart and immune system failure from which Tara suffered, and ultimately died.

Tara Morgan of Letchworth, UK

Yet with all these facts, there is still an implication of mystery and helplessness:

“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.”

But in the way M.E. erodes the body's ability to cope with recurrent viral infections etc, we hear:

“This is a case of something in the body going wrong over quite some time."

We hear: "Tara, who was born with a learning disability, had a history of headaches, muscle aches, joint pains and a bloating of the abdomen."

A long "history" 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.

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.

We need biomedical research and we need it YESTERDAY!

So glad to know all our combined efforts for Let's Do It For M.E./Invest in M.E. have currently raised £36,099 towards the £100,000 total for the biomedical research and treatment centre in Norwich.
Together we can, and MUST do it for M.E.

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.

Emotional lability: watering our personal happiness flowers!

Sorry I've not been up to much blogging much yet this month!

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.

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.

 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.

 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.

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.

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!

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!)

I'm usually known for being resilient and hopeful. Last week these gifts almost deserted me, as the overwhelming "emotional lability" of M.E. (as in other neurological conditions) pinned me mercilessly to the mat and drained my personal inner Pollyanna of her lifeblood.

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.

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.

I'm still not up to much blogging.
Sense may still cease to be made at times!
I may still blubber unashamedly over the Titanic.
I may still feel steamrollered by people's personal battleplans.
But I can still laugh and let the love flood in.
I can still count my blessings.
We all can.

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 : This is M.E. (Myalgic Encephalomyelitis) - 34 people with M.E. tell it like it is!

Plus ten personal things that make me glad I'm alive that have made me smile these last few weeks:

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! Who's there? Interrupted Sheep. Interrupted Sh... Baaaaaaaaaaaaaaaaaaah!)

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!

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

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

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

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!

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!

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.

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!

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.

I'll stop there, cos I did say ten things, not dozens! Cos my wrists ache like crazy by now.

Oh yes. I have such a lot to be grateful for. Nothing is going to rob me of my joy.

Please make quite sure that nothing and nobody sidles by to rob you of yours, either!

Why not give your GP something worthwhile to watch?

Just got back from GP.

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!

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".

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?

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!

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!

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!

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.

 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.

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!)

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.

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):

"Oh yes! That's not licensed!" she laughed, "But I suppose people will try anything when they're desperate!"

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.

Another Voice from the Shadows; Another Candle in the Darkness

 

So proud of my lovely mum yesterday.

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".

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!

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 ""Invest in M.E." and the "Let's Do it for M.E." 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!

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 Voices from the Shadows 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!

Today I was so sad to read via a link on the Sheffield M.E. Sufferers/Support for M.E. Group on Facebook about Lois Owen, yet another person to die from M.E.

Lois's tragic but ultimately inspiring story is told  in This is Derbyshire: Tragic tale of woman with chronic fatigue syndrome 'too tired' to eat 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."

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 here.

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.

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:

"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."

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.

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?

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!

JOBCENTRE WRAG-TIME a poem

I went to the local Jobcentre

With painkillers, stick and bag

I had to go, fearing sanctions

Cos I've gone and been put in the "WRAG."

It makes me feel poorly on buses

But with hypos I mustn't drive,

So I stumbled in all of a-tremble,

And barely a quarter alive.

It took me all my precious "spoons"

To balance and to breathe,

I had to watch the pavement

As it starts to shift and seethe.

My 80 year old mother came

To help me open doors

Which invariably seem to stick

Defying gravity's laws.

My appointment was half past eleven,

Though I hadn't slept night after night.

My legs felt as wobbly as rubber

I was sickened by motion and light.

But the Jobcentre seemed rather quiet

With everyone there in their place,

No loud noises were blorting to hurt me

Which was abso-bloomin-lutely ace.

A lass who was wearing a label

Which I guess spelled out her name

Started asking me what was my business

And the reason that I came?

I explained I'm in the “WRAG” group

And I had to meet the girl

Who's my “Personal Adviser”

Who I'll call, for rhyme's sake, “Shirl.”

She looked me up, she looked me down,

She showed me to a chair,

Where in pain I tried to balance

Near to others who were there.

Some were reading adverts,

While others filled in forms,

Some jiggled kids in pushchairs

While others stifled yawns.

But everyone seemed friendly,

Efficient, polite and calm,

And as I got my breath back

One young woman touched my arm.

She said my name and greeted me

And helped me cross the carpet,

Pulled out a chair to help me

Cos by now my “spoons” had scarpered!

She reassured me from the off

She wasn't there to press me,

ATOS had done what ATOS do,

Here no one would undress me

Or frown and say “M.E.? What's that?”

You look fit as a fiddle!”

She listened and she understood

(Not influenced by Rod Liddle!)

I didn't wear my dog-collar,

So I was a bit astounded,

She knew the kind of help I'd need,

Advice was wise and grounded.

She tapped on her computer screen

To calculate & compare,

If work from home might pay at all

What hours, what skills to share.

She knew from my work history

I wasn't one for shirking,

She knew that were I well enough

I'd much rather be working.

She totted up the hours

I could work or volunteer,

On top of what I manage now,

If better health were here.

She built on what my skills are

To make helpful suggestions,

She let me pace things as we talked

And answered all my questions

She learned about my brainfog

And saw it one-to-one,

She's the face among the faceless,

I was really glad I'd gone!

I asked if I had to see her

Every month from here on in,

She said it would not be needed,

(My knees must've met my chin!)

I could call her number any time

For any advice at all,

It should be another year or more

Till my next medical call.

She was honest about W.R.B.

And all the uncertain changes,

She well understood her clients' fears

And the future's scary dangers,

So clued up and supportive,

She went out of her way

To fetch me a pack to make a claim

If needed, for DLA.

Since then I've heard two other friends

At different JCPs,

Have also had this kind of help

In different degrees.

Although it took days to recover,

From this trip to the “bowels of hell”,

I consider myself very fortunate

I've a positive tale to tell.

Before you say, “yes but, no but,

ESA's just for a year.”

I must meet that bridge when I come to it,

I'm thankful for now and here.

For now, I was saved an unequal fight

To be put in the group for “support”,

Not terminal ill, not yet a corpse,

I guess I've been put where I ought.

I know the harsh rules of D.W.P.

Won't find me a miracle cure,

With their strict time-limitation,

But the future is seldom sure!

We can only live in the moment,

And fight on for those with no voice,

Play fair even when we've been diddled,

Or grow bitter and bolshy by choice.

Back at home I was soon reminded,

How true were the things we'd discussed,

How far I am from “fit for work”

The adrenalin soon repercussed.

I slept till the daylight was dying,

As body and brain disengages

With the payback from that short journey

I just couldn't function for ages.

But at least one Jobcentre employee,

Understands disability more,

Has more now of M.E. awareness,

It won't stop me fighting injustice,

With others whom ATOS have harmed,

But I went to the WRAG, and I learned some,

As with all things, forewarned is forearmed.