Thursday, 22 November 2012

Me, Myself and M.E...

As mentioned in my introductory post I live with several chronic health conditions, one of which  is Myalgic Encephalomyelitis (M.E.) and, as I'm currently experiencing an impressive bout of M.E. related insomnia, this seemed like a pertinent time to formally introduce it.

Readers meet M.E, M.E. meet my readers... don't worry, it doesn't bite, well, not anyone else at least. Oh and it's not catching either. Just to clear that right up.

I have been suffering from this disease for the past three months (or, to put it another way: 13 weeks, 5 days and roughly 2.5 hours). A long time, you might think? You'd be wrong. Very very wrong.

Here's the rub: although my symptoms point to M.E, my GP can not officially diagnose the condition until they have persisted for four months. This is in accordance with current NICE (National Institute of Clinical Excellence) guidelines, which can be found here should you wish to have a gander.

In 6 weeks, 1 day and 21.5 hours, I will reach that 'hallowed' (I use the term loosely. Very loosely) milestone. I will be official. Hurrah! I'd throw a party. If I had the energy. Oh, cruel irony.

Now, I'm lucky in that I have a fantastically sympathetic and forward thinking GP. He stated in a previous consultation that if we had a better healthcare system (his words, not mine. In spite of the backwards logic of NICE, I am not a pitchfork wielding, card carrying NHS detractor, quite the opposite in fact), he'd refer me to a local hospital's CFS/ME clinic and to hell with the guidelines. But, them's the rules and four months it must be.

The promise of  attaining this magical threshold (again, tongue firmly in cheek), however, doesn't make living with the symptoms any easier to bear in the meantime.  And, of course, being unable to secure a formal diagnosis for something you're clearly presenting with, until a seemingly arbitrarily defined point in time, does feel like a somewhat perverse slap in the face. For, as our esteemed friend Mr. Shakespeare once said: what's in a name?

Speaking of names, there's a lot of contention in the medical world about what this condition should actually be called. Is it M.E? Is it Chronic Fatigue Syndrome? Is it Post Viral Fatigue Syndrome? In the interests of clarity and, because I refer to it as M.E., we're going to stick with that. It would get far too confusing otherwise, trust me.

Yes, nothing about M.E. is straightforward or cut and dried. The name, the classification, even the symptoms themselves all seem open to interpretation and argument. Nothing is agreed upon and everything is vague (to monstrously paraphrase Kurt Vonnegut, apologies Kurt).

The World Health Organisation (WHO) classifies Myalgic Encephalomyelitis in it's International Statistical Classification of Diseases and Related Health Problems (catchy, huh?) as a disease of the nervous system. It's official listing is: G.93 (Other Disorders of the Brain) > G.93.3 Postviral Fatigue Syndrome > Benign Myalgic Encephalomyelitis.

See, what did I tell you? Even WHO (insert British 60s Mod-Rock band associated joke here) can't agree on a name. But at least they have decided it's a disease of the nervous system. I believe there was a time when it was unofficially classified as a psychological condition but, thankfully, they saw the error of their ways and it was reclassified as neurological.

As I say, not all symptoms have been unanimously agreed upon within the medical community,and with symptoms changing day to day, and patient to patient, it's very difficult to get a firm grasp on what constitutes this neurological disorder.

The NHS Choices website lists the symptoms as thus (although they refer to it as CFS. Bang goes my clarity endeavour):


The main symptom of CFS is severe fatigue (exhaustion) following mental or physical activity. This does not go away with sleep or rest, and limits your usual activities.
Fatigue is mental as well as physical. Some people describe it as overwhelming. You may feel that:
  • It is a different type of tiredness from what you have experienced before.
  • After sleeping you do not feel refreshed.
  • It is not due to exhaustion.
  • It is not simply a loss of motivation, which people with depression often experience.

Exercising can make symptoms worse. This is called post-exertional malaise, or "payback". The effect of this is sometimes delayed. For example, if you were to play a game of sport, the resulting fatigue may not develop for a few hours afterwards, or even the next day.

Other symptoms

There are other common symptoms as well as fatigue, although most people do not have all of them. They include:
  • muscular pain, joint pain and severe headaches
  • poor short-term memory and concentration, and difficulty organising your thoughts and finding the right words ("brain fog")
  • painful lymph nodes (small glands of the immune system)
  • stomach pain and other problems similar to irritable bowel syndrome, such as bloating,constipationdiarrhoea and nausea
  • sore throat 
  • sleeping problems, such as insomnia and feeling that sleep is not refreshing
  • sensitivity or intolerance to light, loud noise, alcohol and certain foods
  • psychological difficulties, such as depression, irritability and panic attacks
  • less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature.

Me, personally? I 'enjoy' the dubious company of:

  • Extreme fatigue (natch).
  • A recurrent sore throat and/or swollen glands. 
  • Bi-weekly headaches (difficult to describe, but they're lower in my skull than any other headaches I've had).
  • Dizziness (of the common garden, 'oops, I feel like I'm about to fall over' variety)
  • Vertigo (or what I have termed: the 'Boat Feeling'. In fact, I've turned it into an adjective, as in: I feel 'boaty'. A nice shorthand way to inform my partner that I feel like I'm on a moving waterborne vessel. When in fact I'm not. Unless, of course, I actually was, in which case confusion would reign. Anyway...).
  • Aching joints.
  • Aching muscles.
  • A general 'virusy' feeling (you know that aching and weak feeling you get in your limbs when you have a virus or heavy cold? Well I have that near enough permanently. Yeah, sucks to be me.).
  • Insomnia.
  • Excessive sleeping (Hypersomnia to give it it's correct name). 
  • Nerve pain (this is the newest one and possibly the least fun of the lot. I feel like I'm being jabbed all over by a microscopic red hot needle).
  • A tingling/crawling sensation on my skin.
  • Itching. Mainly hands, arms, legs and feet. But wherever I've got skin really, which would, erm be everywhere I guess.
  • Brain fog. That is, difficulty in thinking of words, forgetting what you're saying mid sentence (I do this a lot) and general poor cognitive performance.
  • General feeling of being unwell.
  • Sensitivity to certain foods.
  • Gastro-Intestinal problems.
  • Reduction and/or total lack of appetite. I used to eat like a stable of horses, never mind just one.
  • And last, but by no means least: No energy. None at all. Ok, maybe a little at the start of the day (which at the moment is around 2.30pm, that's the dastardly Hypersomnia for you) but as soon as I do anything more taxing than wash some dishes it's gone. And even then, I have to take my time. I scrubbed a pan a little too vigorously not that long ago and then had to lie down to recover. True story.

Some of the symptoms on the list I've been able to identify as my base symptoms (the fatigue, general malaise, lack of energy, weakness) and others will manifest themselves at any given time. Sometimes they'll come and go within the same day, sometimes they'll linger for a few days and return a week or so down the line.

So, that's my M.E. Written down in black and white, it doesn't sound so bad, but trust me it is. Not to be too histrionic here, but I've been robbed of my freedom, my salary, my health (and I didn't  have much of that to begin with, but that's another story for another day!) and, well, my life really. 

And I'm one of the lucky ones. Yes, I've been virtually housebound since August, yes there are days when all I can do is sleep and I don't have the energy to lift a fork to my mouth to eat, and yes I am so very very tired all the bloody time but there are people with this condition who are bed bound and unable to do a single thing for themselves, there are people who have died

M.E. is a cruel and unforgiving mistress of that it can be agreed upon. 

If there's one thing we ask of you: please do not dismiss us. We're real and so is our condition.

 It's always been viewed in the general consciousness as a rather vague, indeterminable illness. And of course, what one doesn't understand, one tends to undermine or belittle or worse, ignore altogether. Thus insults such as "yuppie flu", "malingerer" and "lazy" were able to flourish. And those living with the disease had to (and still do, I'm sorry to say) contend with offensive, often hurtful, remarks and attitudes on top of everything else.

A good support network is vital when living with any chronic illness I think, but all the more so with regards to M.E. due to the controversy and confusion it has attracted over the years.

When living with a condition as contentious as this, having those you love understand (as much as they can) and support you is paramount. You're going to need them, whether you like it or not, and knowing that you've got people in your corner is a small but important victory in this battle.

I am blessed to have a fantastic family, boyfriend, and friends (oh God, that sounds like a boast, it's not. Honest), who have supported me unfailingly during the past three months. From my Mum and my aunts taking it in turns to push me around in wheelchairs, to my boyfriend taking on all domestic duties chez nous, giving me many many hugs and generally being my rock, to my Brother who has taken everything in his stride but now checks in with me more than he does with the parental units, to my Dads (no, that's not a typo) who have organised wheelchair hire and offered advice and vociferous encouragement, to my friends who have been at the end of the phone, emailed , texted, or visited; bringing with them gifts (usually of the chocolate variety - it must be said), tales of the outside world and laughter.

Thankfully, also at my disposal, is a veritable wealth of online support and information for those with M.E. -compared to the dark days of the 80s when ignorance abounded.

Here are just some of the sites I've found invaluable:

Twitter, too, is unbeatable for connecting you with fellow sufferers.
I follow the brilliantly informative and pro-active:

  • Action for Me- @actionforme
  • ME for M.E.- @ME_forME
  • ME Association- @MEAssociation

So there we have it, M.E. and me... my experience, in my words.

If you think you may have the condition please consult your Doctor and he/she'll be able to discuss your options with you. Although I'm not qualified to diagnose your symptoms, I'm more than happy to chat about them with you, and answer any questions you might have regarding my experience of M.E.




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