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!) :)

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.

Brain Fog: Slow Down and Simplify, Please!

One of the better definitions of "Brain Fog" in M.E. I found recently here at www.brainfog.org

They rightly summarise how we spoonies struggle:

brain, n. soft, soggy, vaporous, cloud located in upper cranium between ears.

fog, n. soft, soggy, vaporous, cloud located everywhere else.

brainfogged, adj. when one is so completely foggy of heeed that they make sense to none but their own kind.

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?

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.

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!

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.

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.

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.

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!

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!

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.

M.E.'s darkest moments: I am worn out from groaning!

Llewellyn King: ME/CFS: Into 2012 without Cure or Care

The link above is a wonderful article exposing the reality of M.E.
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:

"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 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, one time when my M.E. was at its very worst and sobbing "My life is OVER!" 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.

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.


"Be merciful to me,Lord, for I am faint; O Lord, heal me, for my bones are in agony
My soul is in anguish. How long, O LORD, how long?
I am worn out from groaning; all night long I flood my bed with weeping and drench my couch with tears. 
My eyes grow weak with sorrow" (Psalm 6 verses 2, 3, 6 & 7)

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!

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?


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. Personally, I believe God's big enough, loving enough and patient enough to carry us till that day. 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.


As Llewellyn King writes so well:


"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."

You don't understand M.E. - on The Wright Stuff

Thus 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:

'Part 5: You Don’t Understand M.E.!
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.'

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).

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?
I only noticed it when it was mentioned on an M.E. chat group.

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.


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!
You Don't Understand M.E. on "The Wright Stuff" Channel 5 15th Dec 2011


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!

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.

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!

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.

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.

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!

 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!

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!

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.

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!

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.

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.

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.

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.!

Jo said she had lost most of her friends, who grow tired with waiting about for someone who can rarely join in.

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!


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!"

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! XXX

A 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.

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.

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.

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: BMJ Open: Unidentified CFS/ME is a major cause of school absence . The item on BBC Breakfast Time this morning can be watched here: BBC Breakfast : Chronic Fatigue Syndrome 'affects one in 100 pupils'

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.

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.

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.

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!

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.

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.

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."

Now we know this to be true, how can we stay silent?

..........................................................................................................

Letter sent to Baroness Benjamin (Lady Floella Benjamin) via the House of Lords:

Dear Lady Benjamin,

Time-limited Employment and Support Allowance: Welfare Reform Bill Report Stage & Third Reading

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.

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.

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. 
 
Like me, many disabled people are unable to work, even were jobs actually available, through no fault or “lifestyle choice” of their own. 
 
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.

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?

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.

Many thanks for your understanding,
yours sincerely,
etc

................................................................................................................................


Email to David Cameron about cuts halving benefit to disabled children:


Concerning benefits for families with disabled children


Dear Prime Minister,

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.

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.

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?

I hope this Christmas you can find it in your heart to relent at the brink of this immoral and deadly mistake.
Yours sincerely etc

Mrs Overdone overdoing it again! Know when enough's enough?

Sorry if this post sounds a bit disjointed! (Or maybe that's a blessing!)

Today I'm rather sick to sit for long. My stomach is nauseous; ears ringing; can't tolerate much light or sound; wrists, arms, chest sore; stabbing pains in my hips; palpitations; burning and shivering; tender glands; voice weak and absent at times. Can't concentrate to remember what I'm supposed to be doing from one minute to the next.

Slept until almost lunch time today. Slept a lot of yesterday too. Mum called in with lunch to make sure I got something to eat and to check I was OK blood sugar wise.

No wonder really. This is real payback time after the weekend.

I managed to finish filling in my ESA50 and sent it off last Friday. I had intended pacing myself to get it fully completed without need for haste, ready for the stated deadline 8th December. That's what the letter accompanying the form said. Then last Thursday another bullying letter from ATOS. Yes, I know it's routine, but it nearly imploded me from the shock. Thursday's "form" reminder to say they hadn't yet received the form stated I risked losing benefits if I didn't return the form by 1st December!! 1st December! Was this a mistake? A trick? My mind was racing. Thank goodness I'd made a good start already, but it still meant some rushing to finish.

I used the blank section of the ESA50 intended for you to explain if you are returning the form late. Only I said it wasn't late. I fully explained the effect on someone with a chronic illness where rest and pacing is essential, of having this sudden change of deadline in mid claim. I said if they didn't move the goalposts without explanation a second time, the form should be with them by the 1st. That may disqualify me immediately for being "non compliant" to their nonsense. At least I'll be going down fighting! I did add a "thank you," more in keeping with my normal courtesy at the end of this section. I know I'm not alone in finding their duplicity utterly infuriating.

That left less than the planned period of rest leading up to Sunday's long-established commitment to take the Advent service at my local church. I had a lift there and kneelers stacked on the pulpit seat to help support me to sit at times and still be seen from the back. I had members of the congregation doing all the readings and lighting the first Advent candle in the Advent Crown. I had my stick with me to balance for the prayer of dedication over the collection plates (even then, the stewards said they were worried I looked wobbly enough to drop them!) and for coming forward to the altar rail to share the words of blessing at the end of the service. I'd had all my words written down in case of brain fog meltdown and losing my train of thought. Even with all these props in place, plus a powerful radio mic, as soon as the service was over, I hadn't much voice left for greeting people on the door afterwards. I had to slump against the wall and then sit again to make it through.

As I've said before, although it seems frustrating to be able to do so little and so seldom, I'm just so thankful to do this at least, no matter what the cost in relapsing afterwards. I always seem to have just enough resources (not from my own strength, for sure!) to do what I believe I'm called to fulfil. People here know me and most understand a little more about M.E. now, so I'm very thankful for their support, love and help.

New friends, the daughter and granddaughter of a dear couple of friends in this congregation, were visiting from Scotland and came to the service. It was wonderful to meet them, if only briefly, after the service. My friends' lovely granddaughter is a young teenager who has also had M.E. since 2008. Now she is able to attend school part-time, even though I know it must be such a struggle for her at times. She must make her family so proud! It felt good for us to meet, with her lovely mum, after long comparing notes of our situations through M.E. via her grandparents. Like me, I think she finds writing a great outlet and a joy that can be enjoyed on days when more energetic pursuits are ruled out.

I had also been invited later to other friends' Golden wedding celebrations. Ideally it would have been on a day when I wasn't doing another huge challenge, but life doesn't come with pacing built in, does it? Anniversaries come when they come, don't they? All my friends at this beautiful event completely understood my health problems, and helped to make the day as easy as possible for me, including lifts, rests etc. After lunch we had a time of photos, laughter and reminiscences back at the home of my friends' daughter. I enjoyed every minute and treasure every second.

No wonder, though, that post-exertional malaise and all the attendant symptoms are now catching up on me with a vengeance. I feel like I've been running up Mount Everest while being run over by a steam roller! More than worth it, though. I'm just very thankful I've no other major commitments this week as I try to recover! Winter may be playing its part with wind and wetness, cold and chilliness making it more of a struggle to keep well. I'm constantly fighting viral symptoms at the moment. But there are happy memories to enjoy and so much to be grateful for!

On a world scale, there's more good news from Norway. After the encouraging trials of Rituximab in the treatment of CFS (however they are actually defining it), and their Government's apology to M.E. patients for the lack of awareness and treatment in the past, comes real positive action. The Norwegian Health Minister Anne-Grete Strom-Erichsen pledges 2 million krone to the two doctors involved for further research, as well as promising a national M.E. centre in Oslo!

If only sorry wasn't such a dirty word to the UK powers-that-be. Please catch up, UK! We're still here, struggling. Advent is a time of hopeful preparation. That makes my spirit sing with joy and celebrate everything around me as miracle and gift.  But medically, bodily, even pacing shouldn't justify the medical profession and politicians  keeping us waiting  for ever, if it's in their power and possibility to be faithful to those they care for!

Believing six impossible things before breakfast

"Alice laughed: "There's no use trying," she said; "one can't believe impossible things."
"I daresay you haven't had much practice," said the Queen. "When I was younger, I always did it for half an hour a day. Why, sometimes I've believed as many as six impossible things before breakfast."
-Lewis Carroll in "Alice in Wonderland"

Here is a letter that passed between Lord Freud, Minister for Welfare Reform and the Countess of Mar, the prominent advocate for M.E. awareness. Freud reply to Mar.pdf

It clearly states: "Therefore, for the avoidance of doubt, I can be clear that the Department does not classify CFS/ME as a mental health disorder."

Yet I equally clearly heard another male peer express as a fact that it was not known whether the disease was wholly mental or would one day be cured physically. This was during Monday's House of Lords discussions of proposed amendments to the Welfare Reform Bill (stopped myself typing "catastrophic" there - didn't I do well?). Apart from his giving no convincing or indeed any satisfactory responses to his noble friends' many probing questions, I did not hear Lord Freud or anyone else correct him.

So who will speak the truth in our own assessments with ATOS and the DWP? The silence is deafening.

In other news, I see M.E. biomedical researcher Judy Mikovits is likely to be released from jail tonight after being arrested last Friday on felony charges relating to her dismissal in September from the Whittemore Peterson Institute in Nevada.
Inmate Mikovits meets judge
When will the truth be heard in this distressing case?

I think as M.E. patients, we are getting pretty skilled at "believing six impossible things before breakfast". It takes practice, but we get so much of that these days. Hard to swallow like our swollen throats and glands. Hard to get our head rounds in the midst of brain fog. But practice makes perfect.

Shhhh! Do you want to know a secret? We all do!

The Official Secrets Act: strange bedfellow for M.E./CFS?

This disease has robbed me of my prime of life: why do you want to keep me in the dark? 

So much for the Hippocratic Oath. So much for integrity! 

The lunatics have taken over the asylum!

The disgusting corporate secrecy about M.E.

I've just reread this information from Invest in M.E. after quite a while trying to save spoons by not reminding myself of the depth of the baffling injustice here. There's still a dent in the wall from last time I read it! Nothing's changed.

Tweeting with a friend about it today, I realise I am no nearer to having an explanation.  Why this sickening, perverse secrecy about the physical illness that has robbed us all of chunks of our lives and left us prey to every sling and arrow from the disability haters and arrogant welfare reformers who believe their arbitrary time limits can spirit away "chronic conditions" that medical science has yet to cure?

Why oh why do the Medical Research Council even have "secret" files on M.E./CFS? How can they possibly justify sitting on them, invoking the Official Secrets Act, till the 2070s? It's like something out of James Bond, only without the glamour and blockbuster theme music! I am still shaken, and very much stirred.

This article points out that the secrecy seemed to begin when the discredited psychiatric lobby came to prominence with their touting of CBT/GET to torture us and convince the world we are malingering fugitives from bedlam and the workplace.


One alas-not-so-secret document quoted, the 2007 NICE Clinical Guideline, trots out the old CBT advice: " “The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability”.




You don't need to "legitimise" what was never illegitimate in the first place! Life-crushing disability descended willy-nilly without any need for reinforcement!

 I can only conclude that, as the psychiatric lobby realised with rising panic and horror that bio-medical science was about to reveal the organic multi-systemic autoimmune mechanisms in M.E., so consigning their frankly flawed analysis to the dustbin of historical dead ends, they marshaled all their weapons to keep the "truth" in their pockets.

☞ Hence Simon Wessely's flirtation with with stardom as darling of the press this summer. 

☞ Hence the mockery and disbelief that seems still to be sanctioned about the illness.

☞ Hence the postcode-lottery-think-of-a-number-and-double-it Russian Roulette we face of getting health professionals who even understand, let alone help and treat us in an enlightened way

☞ Hence the obscene clampdown on these unseen M.E. documents until most of us are conveniently dead and beyond redress.

Disclosure would not suit the egregious oafs who refuse to back down, apologise or admit they were wrong or minimise all the damage they have caused to so many for so long.

Or am I wrong? Have you a different explanation? Have you a fresh insight on this? I'd so value hearing from anybody else who perhaps can throw any further light on this, or just needs to express what they feel about it.

"The law is a ass - a idiot!" says Dickens' Mr Bumble in Oliver Twist.

The law is erring on the asinine side here, I suggest. But what do I know?


But time's not on my side. And, perhaps mercifully, I won't get a chance to "only live twice!"

Tachycardia getting even tackier!

Well, after Saturday evening's loss of two hours of my life to extreme hypoglycemia, it's put me back quite a bit and been all but housebound since. 


The temperature here in Yorkshire is hitting the mid seventies, so it would be great to get outdoors more to take advantage. Managed one wobbly stagger down the garden to see the golden leaves from the Ash and Cherry trees banking up on the lawn. So beautiful. The birds are going barmy for the balmy, enjoying this warm snap, chasing each other in the sunshine.  A few weeks ago, my Mum heard a lady proclaim that "You don't know what to wear! We shan't have any more weather!" Premature, it turns out!

This week, my occasional tachycardia has become a much more frequent companion. Like other visitors, it really should have warned me it intended to call! I'd have changed the locks, had I known! So much so, accompanied by dizzy spells and greater than usual difficulty making sense of ordinary stuff and concentrating, I've actually promised to go have myself checked out by my GP.


"Well," said one well-meaning well wisher, "it may be a recognised M.E. symptom, but they can give you things for it these days. You haven't told them, recently."

I know. I never go to the GP now, unless forced to, any more than I did before I was ill with M.E. I have to be seen regularly about my diabetes in any case. Forgive me if I'm less than hopeful of getting help with the tachycardia. Any more than the GP has been able to relieve my pain. Or disperse my grinding, draining exhaustion. Or keep my stomach and intestines from having a life of their own. TMI. Or do anything but pack me off to the M.E. (for that, read CBT/GET) clinic in Sheffield soon after I was first diagnosed by the immunology department at Sheffield Hallamshire Hospital. Then no more. No further intervention. Except to write 'M.E.' on my records clearly, a few years on.

But I care about the people who care about me, so I will make that appointment.


Even less welcome is the annual flu jab at my local surgery this Saturday. Every year now I have to debate, all alone, the pros and cons of having it. So many years it has lead to me being profoundly ill afterwards. It is still one of the most likely looking candidates, unofficially, for contributing to my complete collapse into M.E. in October 2005.


Shall I? The diabetic advice says "Yes".

Shan't I? The rather shaky M.E. wisdom says "No".

A friend whose husband is terminally ill with emphysema, on oxygen, will not have the flu jab these days, though all the advice from medics tells him to do so. My friend says, though I haven't the facts or figures personally to back this up, that GPs get £40 per every flu jab administered.

Anecdotal evidence names a GP who actually stopped one of his patients in the street as he drove away from an appointment where he had given another patient her flu jab at home. He urged the pedestrian patient to get into his car, and gave her the flu jab there and then. £40 is tempting, whatever the dare, true, kiss or promise of it.

Every time I approach the subject of how ill the flu jab has often left me within days, the old line about "it's a dead virus, it can't give you flu." is trotted out. Apart from one wise nurse, who could only say that it was up to me.

It can't give us flu. No. I know that, thank you for asking! I'm not saying it gives me flu! I'm suggesting that something seems to be happening with my immune system that reacts to whatever is in the shots. Perhaps that's why it does vary year to year. I don't know. I'm not the expert. Seemingly, nobody else is either. Again, from a very low ebb to start with, I must decide whether to take the plunge and line up for the injection.


Then I'll make my appointment for the tachycardia. I fully expect the tests, if done, will make me look like a malingering idiot as usual. Or perhaps, even at rest, relaxed at home, the fluttering, nauseous, dizzying sensation is "all in my head"?


Sarcasm over. It's a beautiful day outside of these four walls!

Every picture hides a story

Got energy in spades...but what about an hour or two later?

I posted this photo as a joke on Twitter and Facebook today. I'd simply taken it to show my Mum the new dirt-cheap shovel I'd just had delivered from Amazon.

When she comes to help me with little garden tasks like cleaning up under the wild bird feeders, gathering leaves, a spot of snow clearing from the path to the door, a shovel is something my household toolkit has lacked for many years.

I've a dustpan. Too flimsy and small. 

I've a spade, too heavy and flat.

So, I decided to buy this cheap shovel to make life easier. Not for me, usually, but certainly for those generous, kind and fit enough to lend a hand when they can. I need a small step ladder for the same reason. Not because I could climb it, as I am at the moment. But folks who come to help with little household jobs from time to time aren't all as tall as I am!


The joke was that I was imagining this image of me brandishing the shovel is what an intruder might reasonably be expected to be confronted with in the middle of the night, with this lethal looking weapon on site!


My natural affability tells everyone who knows me this would be the furthest thing from the truth. I captioned the photo:

"They'd be shaking in their shoes. Not!"


But the punchline, from an M.E. point of view, is even further from the obvious message this image conveys on the surface.


The shovel isn't very heavy. But within an hour or two, after just lifting for this shot, my wrists and chest are on fire, the following day, from the effort of posing for it. That's the part nobody sees when we're gripped by myalgic encephalomyelitis.


We all tend to wear our outside face for the world. For me, that's the genuinely jokey, positive, laugh-a-minute, glass-half-full face. That's one reason even friends sometimes forget what that positive energy expenditure actually costs me. That's what you never see; what you don't see happens once the shutter has clicked closed and the camera is laid aside because your wrists are too weak to lift a fork or your balance too shaky to stand or sit without nausea.


Every picture tells a story.

Every picture hides a story too.

Like the iceberg we say we've "seen" when we only glimpse the tip above the frozen ocean.

The camera doesn't lie; but it can't always show the whole truth.

It's a snapshot in time; but M.E. is a fluctuating illness, within a year, a month, an hour, moment to moment.


I still want to make you smile, like I always did when I was well enough to bounce.

But please be careful you don't judge the book by its cover, when a friend with M.E. puts their best foot forward for you. Or I might need that shovel after all! Now that IS a joke, honest! :D

Something for the Weekend! (But Monday's a non-starter!)

 On Sunday I was planned to lead worship at a church where the congregation understands more than most about M.E.


Not only have they lost a full-time minister in their circuit to the disease, i.e. me, but one of their own beloved local worship leaders in the congregation also has M.E.


She and I discussed how we were both doing at the moment, comparing the muscle pain that makes even wearing a bra uncomfortable when the chest, diaphragm and stomach feel swollen with poison.

 We talked as only those who really undestand can, about those IBS-like symptoms and those days when even though you can get up, appetite is nil. Contemplating the complex processes of fancying food, preparing it, cooking it and having the strength left to lift fork to lips to eat it, is just one step too far!

 Overdoing things, plus passing viruses always end up flooring us both, in spite of our positive attitudes. People know us both too well in our church communities to imagine it's all in our minds, thank goodness! (Though we've both had more than enough of that attitude from elsewhere including medics!)


It was a "relatively" better day for us both. Relatively better, of course, or I couldn't have been there to take the service, nor she to be in the congregration! I was leading my one brief hour of worship per month at her church. I still can't manage any more. 

 Being there for Sunday meant I couldn't be at the circuit preachers' meeting for fellowship the following day. I can't do things day after day, still, or my body can't recoup what it loses with each effort. Since then I've been virtually housebound and sleeping for England, trying to recover. My throat's now sore and glands swollen with that brief hour of projecting, laughing, sharing, chatting, concentrating. My muscles are spasming now at the slightest move and I feel like I've just swum a polluted Thames with David Walliams this weekend! (I wish! Well done, that man!)

 My aim is now to gradually recover enough to manage something similar (preach not swim, silly!) at another church some time next month, and if all goes to plan, the month after too. We talked about how this itself was a fantastic thing to be thankful for, compared to early days when I could hardly stand and speak at the same time at all, let alone every so often on a good day. 


She had had a particularly bad time the previous week and still looked as washed out and doddery as me! (We are both in our middle years, rather than the pensioners our bodies take us for!).

When I talked to friends in the congregation that I hadn't seen for over a year, how I'm planning to raise funds for Invest in ME for my 50th birthday next month, a few asked if I had thought of talking to the Circuit Admin Assistant about it? Why not publicise this more widely, considering how many people know me from my ministry in the area in past years?


I hadn't actually thouught of that. I always feel very reluctant to push any cause related to myself, but it all fell into place as a possibility when several folks enthusiastically went on to remind about the Circuit newsletter which has regular circulation round all the different Methodist Churches in our area and has a readership beyond the pews.

 So that's next. When strength returns a bit! I'll contact the editors soon so it can be mentioned (warmly!) there, with links to the charity and to my fundraising page

Joyce's 50th Birthday Gift 4 M.E.


I really think this will help many people who know people with M.E. like myself and the worship leader, to have a chance to do something positive.


In spite of being completely wiped out by going to church this weekend, even with a door to door lift and wonderful support all the way, it was a true blessing as always. I usually don't even have the health to walk to my own local church round the corner! Many were touched and reached by my message, they said, and being in the right place at the right time, for me, the congregation's suggestions might just have unseen ripples into the future for everyone with this devastating disease.

The 7 Genomic Subtypes of ME/CFS; the future looks bright and it's down to us!

BMJ Article on the 7 genomic subtypes of ME/CFS

Quotes from the text outlining the 7 subtypes:

'Subtypes 1, 2 and 7 were the most severe.

Subtype 3 was the mildest.

Clinical features of each subtype were as follows:

Subtype 1 (cognitive, musculoskeletal, sleep, anxiety/depression);

Subtype 2 (musculoskeletal, pain, anxiety/depression);

Subtype 3 (mild);

Subtype 4 (cognitive);

Subtype 5 (musculoskeletal, gastrointestinal);

Subtype 6 (postexertional);

Subtype 7 (pain, infectious, musculoskeletal, sleep, neurological, gastrointestinal, neurocognitive, anxiety/depression). 

Conclusion: It was particularly interesting that in the seven genomically derived subtypes there were distinct clinical syndromes, and that those which were most severe were also those with anxiety/depression, as would be expected in a disease with a biological basis.' 

I remember when this study was first publicised, how interesting and hopeful it seemed. Hopes rose that the time when proper full clinical diagnosis, and possible treatment, even a cure, was just around the corner. Hopes rose that there would no longer be any arguments over ME being psychological, but that any anxiety/depression would be seen as just another explicable side effect of a biological disease. Just as depression is a common side effect of diabetes or many other long-term chronic illnesses.

 Then the summer's shenanigans damped us down for a while. The media and others seemed intent on blowing down our castle in the clouds puff by puff.

Reading this again today, I am filled with fresh hope. After all the disheartening bad press about shadowy death threats from crazed activists, after all the rage and vitriol poured out on those who seem not to think it urgent that all of us with M.E. should have our lives back asap.


Now, there's something to aim at that is in all our hands to influence, even the sickest. Now, there is targeted focus for fundraising towards the new vision for a Centre of Excellence for Research and Treatment of M.E. from Invest in ME

If discoveries like the one about possible ME/CFS subtypes detailed above are already happening, how much more is likely to be possible once funding and facilities are in place?

Here's how we can already start helping to make that difference:

Let's Do It For ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational bio-medical ME research, clinical assessment, diagnosis and treatment for patients, training and information for health care staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

As stated in my last post here

I've set up a page to encourage those in my life to their bit towards funding for the future of all diagnosed with ME/CFS in the UK. After less than a week, I'm a modest 8% of the way towards my personal fundraising target. And I'm still only 49! This is a real birthday present for my 50th birthday that will keep on giving something back to all of us for lifetimes still to come!

That really will be something to celebrate!

Please Invest in M.E. to Celebrate my 50th Birthday!

 ...soon!

So, I hit the big 50 next month.

Spirit still in my mid 20s - often barely in double figures tbh!

Body often feels like it belongs to a VERY badly-preseved centenarian!

Well, instead of the bubble bath and smellies, to mark my half century of years on earth, I'm hoping that together we can raise the big £5-0-0 towards the dream of everyone with M.E.

That dream CAN become reality: real bio-medical research, leading to effective treatment and one day, a real cure for the illness that has robbed so many of us of huge chunks of our lives and livelihoods!

How?


Well, through this page -
 
Joyce's 50th Birthday Gift for M.E.
 
from today till the end of October, you can help by donating however much you feel you can for UK charity Invest in ME
In collaboration with the wonderful Let's Do It For ME! a patient-driven campaign run in cooperation with Invest in ME to raise funds to establish a UK centre of excellence for biomedical ME research and treatment, you can make such a life-changing difference.

Simple!

Putting the dispiriting summer of dodgy journalism and misinformation behind us, let's go forward together and make a positive move that will change the world for all PWME (People with M.E.).

Learn more by clicking on any of the links above.

Can we do it?   

In the words of Bob the Builder, YES WE CAN!

Joyce's 50th Birthday Gift for M.E.

Thank you so much in advance!

  

More info from the M.E. ASSOCIATION
Full definition of the disease and its symptoms (the science bit!) International Consensus Criteria for Myalgic Encephalomyelitis

Puppy head chewing blight

It's not everybody who gets to read the same page of a biography of Georgiana, Duchess of Devonshire a dozen times while having their scalp chewed by an over-eager puppy.


That's how I spent part of last night.

So it seemed.


My M.E. is rather flared and crashed. Probably from doing a bit too much. Or a virus I might be fighting. I can't keep warm. Yet as ever, beads of sweat are never strangers! Everything is sore. Swallowing feels like necking razor blades.

My appetite has dwindled this week. Just as well! Cooking takes even more 'spoons' than having the energy to fancy eating. I didn't have the energy to plan it well or sort the shopping while I had a bit of Mum's help over the Bank Hol. I have to eat judiciously of course, to keep my blood sugar in order. But it's soup and simples this week. That's where having to get rid of the freezer when forced to downsize when I lost my job really hits home!

No, of course I didn't read the page a dozen times. I didn't count. But my eyes kept doing the distance without taking it in. Again and again. Why will lines not stay parallel for a change? Then the eyes got too sore to go on. Head too banging to keep them open. My chest nagged to be allowed to liquefy on the carpet. You know the score! By then my wrists were too sore and fluttery to keep the book at the right angle, possibly from typing too for a minute too long while blogging and Twittering.

Maybe it was sitting up to pay the September bills. The Methodist year begins today, the day I used to start another exciting year working for the Methodist Church, for the decades pre-M.E. I'm still not completely over that particular bereavement even after five years unable to work. 

Nobody's missing me now, on this day, or wondering why I haven't turned up for a meeting, funeral, baptism, wedding or visit! It passes like all the others on the calendar as my colleagues and congregations get on with their busy lives! Enough of that stream of consciousness! The day will come when I can rejoin them all, and not just muster strength for a few minutes in the pulpit each month to help out and "keep my hand in," after which I'm fit for nothing else for days! That's improvement from bed bound, at least occasionally, I remind myself.

No, of course an eager puppy wasn't chewing my scalp. My darling dog died a couple of years ago and I've been too sick to contemplate getting another companion yet. That will be a beautiful day indeed! The aforementioned chewing pup was actually just nerves in my head still feeling the damage from three bouts of shingles. It's like having severe toothache in your noddle! I'd sooner have had the puppy. I can't house-train or cuddle my shingle-mashed nerve endings!

I went to bed early with a hot water bottle, mittens, plus a shawl on top of a slanket. Reminding myself that the calendar would need changing today to September this morning, not December! I love these glam summer fashions! I'll be setting a trend, no doubt, looking on the bright side! At least the thermals are still in the drawer. For now!

Lying awake, I've now hatched a cunning plan, inspired by others online doing similar things. I'm going to use my upcoming 50th birthday next month to raise funds for M.E. biomedical research. No, not donating my body, silly, I still need it! I'll be setting up a page to raise money for independent charity Invest in M.E. or for the M.E. Association .

Watch this space.

I need to consider things like:

-how easily does the cause stick in the minds of older friends (a few find it hard enough to keep up with emails and Google stuff, let alone do anything more complex!)


-where the funding actually goes

-how easy people will find it to donate

Etc. Etc. Etc. Wise, balanced decisions take extra energy on days like this!





www.everyclick.com and www.justgiving.com seem tried, tested, and easy to use, to me anyway, so I just need to give it more thought.

In my will, made back in the early days of my diagnosis, I'm leaving modest legacies, should any of my dwindling cash remain by the time of my demise, to the M.E.A. and M.E. Research UK, though in light of current concerns, I wonder if changing that last named charity to Invest in M.E. might better ensure the bequest actually goes where it's needed and will best be used.

I've still time to think about it all, as I've a whole month to enjoy being in my forties! Hopefully even longer still before my last will and testament comes into effect! For now, it's back to bed, though, says my killjoy bod!


P.S. I love my friends! One of them who really "gets" my sense of humour has just messaged me: "love and prayers for a respite from this puppy head chewing blight"! 

My own lad pictured here was always up for a laugh, too!