Severe M.E. Day 2016

There are according to the UK's National Institute for Health & Care Excellence (N.I.C.E.) body, per their document {Chronic fatigue syndrome / myalgic encephalomyelitis (or encephalopathy): diagnosis and management: NICE guidelines [CG53] Published date: August 2007}, three categories of M.E.: mild; moderate; and, severe. I have been diagnosed by my NHS hospital consultant as suffering "severe" Myalgic Encephalomyelitis or M.E. in accordance with this classification.

I average, over the year, fourteen-and-a-half hours of sleep in every twenty-four. However, there is no pattern to my slumber. Sometimes I sleep up to twenty-two hours in a row; at other times I am insomniant. On occasions I have inverted sleep patterns: asleep during the day, awake at night. 

It is only in the past few years that I have found a pain-killer that subdues the pain to a bearable degree; but with nasty side-effects, I only take when I am climbing the walls in pain. Nonetheless, most years I experience only one or two days totally pain-free.

I keep a spreadsheet of some eighty-five major symptoms from extreme ones like temporary paralysis to more mundane ones like temporary (from a few hours up to six months) dyslexia. The vast majority of my symptoms are neurological, from: the aforementioned dyslexia; dyspraxia; dyscalculia; hypersensitivity to odours, touch, vibration and noise as well as photophobia; forgetfulness - from names of individuals I know very well, including my own, to how to cross a road safely; dyscognition; loss of vision, or control of one or more limbs - so no driving for me; muscle twitching, spasms & cramps along with pins-and-needles; fibromyalgia; poor proprioception and equilibrioception - mixed with orthostatic intolerance is a recipe for daily falls (so I sport a pendant-alarm); hypersomnia; hyperalgæsia; chronic headaches & migraines; and so on…

The hypersomnia is another way of saying I suffer chronic fatigue or C.F.S. This is a symptom of many diseases including inter alia Cancer, Lupus, Fibromyalgia (F.M.S.) and Multiple Sclerosis (M.S.).

Like many, if not most M.E.-sufferers I also have several co-morbidities and separate conditions, that for me together create a downwards health-spiral. Over the past two visits to see my specialist, she assesses my over-all condition as having stabilised after years of deterioration. As yet, after more than twenty years of being ill, there has been no amelioration. I remain hopeful probably despite reason!

Whilst the majority of the year I am abed in what I quaintly call my bed-cell, I have better days when I can be taken out to do essential things like shop (mostly done on-line), visit the dentist or G.P. or optician or hospital. On my really good days I like to see friends. Most winters I go to southern Spain to benefit from their much more stable and warmer climate. It does not improve my M.E. symptoms, but massively subdues my various arthritides, thus reducing pain levels.

As I stated above, I am classified as a severe sufferer of M.E. There are however some sufferers who are so ill that they are on intravenous drips, they cannot do anything for themselves at all, and they have to lie abed constantly - often with blindfolds and noise-reducing head-phones. Thankfully, I have not pejorated to that extent.

Myalgic Encephalomyelitis kills.

The slogan reads:

Myalgic Encephalomyelitis

Cover Up

"I split my clinical time

between the two illnesses

(ME & HIV),

and I can tell you

If I had to choose

between the two illnesses

I would rather have H.I.V."

[2009, Dr. Nancy G. Klimas M.D.]

As a sufferer I am never - even were I to become well again - permitted to donate blood, plasma, tissues nor organs, except for medical research in the U.K.

[Image description: screen-shot from NHS Blood and Transplant website confirming my statement]

If you read this far, thank you. Perhaps next time you encounter someone suggesting M.E. is all in the mind, a life of Riley lying in bed all day watching television, perhaps you might consider challenging their misconceptions. Cheers!

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Over the years I have written several blog-posts on Myalgic Encephalomyelitis or ME. You can search for the articles using both those terms from the word index at the bottom of this page.

 

 

Disability Activism Relinquished

With the exception of my long-standing friend Michelle (who made a genuine Barnabas attempt to keep me at it) and a couple of folks over at Manchester DPAC (with a well-meaning exhortation resulting in my feeling guilt-ridden and even more demoralised with the whole activism-thing!), there was no resounding endorsement of my continuing as a ‎disability-rights activist despite over a hundred views (113) of my blog-post, A Disillusioned Activist: Falling Down the Rabbit-Hole.

Therefore I have exited all the disability groups to which I was aligned, unfollowed news-feeds and switched off most activist feeds.

Moving forward I am going to attempt to carry on being a bedtivist by continuing my support for Myalgic Encephalomyelitis (shortened to M.E. and known as Chronic Fatigue Syndrome or C.F.S. in the USA) and other invisible-illness causes.

However, if I still feel as if I am being dragged down, I shall stop such too. My all-round health (including physical, psychological, emotional & spiritual) has to come first, however much I should like to help.

I hope folk will understand and accept my decision. Bless us all! %)

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Disabled People Against Cuts (DPAC), including the Manchester branch, do need support; so, if you are able, please offer to volunteer or donate.

[Image description: Manchester DPAC's logo ©]

'Flu jabs & Myalgic Encephalomyelitis

[Note for those in USA, Myalgic Encephalomyelitis or M.E. is usually known as Chronic Fatigue Syndrome or C.F.S. in the United States.]

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Yesterday, Action for M.E. posted on the subject of "Flu jab advice for people with M.E." The pharmacist is recommending sufferers have the jabs, but admits that there is "limited research available".

I posted in a discussion on whether to have an influenza vaccination. Herewith my contribution:

I have been advised not to have inoculations nor vaccinations, as I seem to re-act to everything. Antibiotics even are an extreme last resort for me, as I end up ill from taking them.

I possibly developed M.E. due to a routine tetanus vaccination which I did not need. Due to my very high risk of developing arthritis, I should not even have been forced to have it (a condition of the G.P. [family doctor] accepting me on his books). Not long after that, his surgery [medical practise] stopped routine jabs unless actually required medically.

Big Pharma (the pharmaceutical industry) knows that we are all different and re-act differently to medications. Whilst statistically vaccinations are "safe" for the population as a whole, there will always be sub-groups for which they, and indeed any medication, will either not work or make matters worse. My advice is to always research any new medication or treatment and seek out advice.

Also, doctors do not always know best. Years ago, a psychiatrist prescribed a drug which caused me absolute extreme testicular agony. He pooh-poohed me before looking up the medication, blushing deeply and then admitting that it was a known rare side-effect.

And what was the outcome of the discussion? Well, some folk are pro and some contra; some have had good experiences, some bad. Anecdotally this supports the assertion that we are all different physiologically.

[Image description: screen-shot of NHS information webpage on The flu jab, ©]

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DISCLAIMER: I am NOT medically trained. If in doubt or worried, seek out professional medical advice!

"This is the face" of M.E.

This is the face

This is the face of someone who is too sick to take her child to school each day.

This is the face of someone who has spent the last 5 hours lying in bed.

This is the face of someone who spent those 5 hours asleep, in tears, in pain.

This is the face of someone who can't have a wash without help.

This is the face of someone who was ignored by doctors for 6 years.

This is the face of someone who is often disbelieved.

This is the face of someone who is having a good day if she can make it downstairs by herself.

This is the face of someone who can't leave her house without a wheelchair.

This is the face of someone who has learnt how to apply makeup lying down.

This is the face of someone who is 80% housebound.

This is the face of someone with Myalgic Encephalomyelitis.

This is the face of someone with a chronic illness.

This is the face of someone with an invisible illness.

This is the face of just one of hundreds of thousands of people with chronic, invisible, life changing, debilitating and disabling illnesses.

This is the face of someone who wants the world to know about invisible illnesses.

This is the face of someone who lives in pain all day, every day.

This is the face of someone who wants awareness.

This is the face of someone who wants a cure.

This is the face of me & of M.E.

[Image description: see text above; courtesy & © Sophie Turner]

This superb poem with accompanying photo was published on instagram where Sophie is known as bambimax. She also has a blog, Nonsense from my 'home office' (sofa), as well as a twitter account. Sophie has given me permission to re-blog this as part of M.E. Awareness Month.

Monday 12th May is International M.E. Awareness Day, and I hope to post a personal account on the day or as near as possible as I am able.

all back

May is ME Awareness Month, (CFS in US) so before the month is over I thought I would share a poem I wrote at a point before I had accepted the ramifications of my condition. There is rarely full recovery from myalgic encephalomyelitis, although such is not unknown. However the longer one suffers from the ailment, the less likely recovery, let alone full recovery, becomes. That is not to say I do not occasionally wish for a miracle cure or a wonder-drug; but in the foreseeable future the latter is not probable and the former is nigh impossible.

I have the severe form as defined by National Institute for Health and Care Excellence (NICE) and confirmed by my hospital consultant (clinician). The majority of the time I am house-bound; much of the time I am bed-bound in what I ironically label my bed-cell. With the discovery of social media and the installation of wi-fi, I have carved out a role as a bedtivist, that is a - non-partisan - political activist working from bed. I feel useful again and that has done wonders for my amour-propre.

Nonetheless, I can still recall the longing for my previous existence.

all back

      and the tears well
my eyes fill
my stomach churning
constricting
pulling at me
thoughts racing
evicting them
proves hopeless
pulling at me
frustration asserts
I see a jogger
      and want to jog
I see a swimmer
      and want to swim
I see a dancer
      and want to dance
I want my freedom back
I want my body
my former physicality
back
I see a book
      and want to read it
seven days
for seven hours
an exchange
I did not solicit
I hear a debate
      and want to join in
but lose the line
what happened
to my intellect
to my memory
why is everything
about me
my being
so unreliable
give it all back
but there is no-one
listening
just my psyche
I want it back
all back
my eyes fill
finally
the tears spill

all back


My bed-cell is my own private space and I am unwilling to be photographed therein, so below is a picture of me lying propped up in the shade on my last holiday.

Battlers in the ME/CFS Wars!

I abhor conflict. I intensely dislike argument (as opposed to debate) for its own sake. I find folk who goad others objectionable. I hold intemperance, discourtesy and disrespect towards others as vices. Unreason and illogicality are symptomatic of ignorance.

Unfortunately every day I encounter these foibles in my interactions between individuals on social media, such as Twitter and Facebook, on blogs and in the comments sections under Media articles.

Their expression demonstrates a weakness of spirit by those engaged and reveals much about the writers: their bile, their hates, their bitterness, their insecurities.

Perhaps no where else do I see such negativity as amongst those on the various sides, and indeed within factions on those sides, of the ME/CFS issues. Professor attacks professor; doctor slings mud at doctor; sufferers squabble with each other. The levels of mutual suspicion and antagonism might be considered laughable if it were not for the inexorable consequences. It is pure folly!

Where in all this diatribe is the coming and working together to the benefit of patients and the advancement of medical science? Resources, time and energy are being squandered for no material gain. It has to stop and now.

I personally would try almost anything for my condition to ameliorate and have tried many things. I will give it a go whether it is an off-licence drug, a physical activity or a psychological approach to get better and I do not care one iota for all the petty - for that is what they are - opinions. I do not give a fig what the illness is labelled, just uncover what are the cause(s) and try to discover a treatment or treatments that is/are effective.

It's time to calm down, don thinking caps and try to find a route-map out of this asphyxiating infirmity. Please! I do not want to remain in my bed-cell or wheelchair for the rest of my life.

[Image description: five persons round a table smiling, two are shaking hands across the table; another stretches out a hand. © Image courtesy of Ambro / FreeDigitalPhotos.net]