Thursday, 30 April 2015

What is wrong with M.E?

One of the major aspects of M.E awareness is getting non-sufferers away from this notion of it just being 'that thing where you get a bit tired.' I'll admit the name Chronic Fatigue Syndrome does little to help matters, which is why you'll find a high percentage of us ill folk would rather gouge our eyes out with a table tennis bat than call it that. This is why we end up with this strange hybrid ME/CFS - doctors don't seem to like referring to it as M.E, patients hate CFS so we end up calling it a mixture of the two. That is, unless you're in the U.S. where they have recently changed the name of the illness to Systemic Exertional Intolerance Disease (SEID.) it's little wonder no-one has a clue what the illness actually is. Perhaps if they spent less time bickering over acronyms and more on research the world would be a brighter place. But I digress........

It's not just what to call it that is confusing. Symptoms and levels of ability vary wildly from patient to patient. Some symptoms seem to come and go as the mood takes them, others are far more stubborn and refuse to give us time off for good behaviour. My Twitter feed is awash with other M.E sufferers asking if their latest medical anomaly is caused by the M.E or if they are just plain weird. As a rule of thumb it's usually the M.E but not always. Someitimes it can be something else entirely but try telling that to your GP and the response is likely to be a shrug. 

Fellow Sufferer Anna sums it up most concisely.

So in the interests of scientific endeavour, I bring to you a definitive list of my symptoms. I'm being brave and including everything I have encountered over the past 4 years no matter how embarrassing or unsavoury because I want people to understand that ME is NOT just tiredness. I'd also like to reassure other spoonies that my body is just as crazy and haywire as theirs. Luckily I have learnt to manage my symptoms by pacing myself and resting regularly. When I'm at home I can feel almost normal at times however if I push myself (and by that I mean doing more than I'm physically able, even just being out of bed for more than two hours at a time for instance) then I experience most of these with varying intensity. If I were to carry on pushing myself, as I did in the first year and a half of being ill (on the advice of Occupational Health) then I would find myself in a whole world of agony and pain, which is why any of my rare trips out of the house need to be so short and carefully planned. So here's my list in all its glory. I'm going to start at the top and work my way down - Enjoy!

NB: PEM (Post Exertional Malaise) also called PENE (Post Exertional Neuroimmune Exhaustion) is one of the main defining symptoms of M.E. It's quite complex to explain so I include a handy link here for those interested in learning more.

As well as PEM:
All-over aches and pains
Pins and needles/numbness in limbs
Painsomnia (when you hurt too much to sleep)
Sleep reversal (sleeping all day, lying awake all night)
Interrupted sleep (waking every few hours)
Non-refreshing sleep (waking up more exhausted than when you went to bed)
Strobing in left eye
Hair loss (luckily I have SO much hair it's never been a problem - except for the hoover!)
Hair growth on forehead
Blurred vision
Light sensitivity
Sound sensitivity (I always wear earplugs - sometimes ear defenders too. Stylish!)
Smell sensitivity  (other people's perfume/deodorant is my nightmare)
Cognitive problems (brainfog) - poor memory, poor concentration, inability to communicate properly, struggling to remember the right word.
Poor motor skills (at one point I had to teach myself how to use scissors again.)
Poor balance leading to clumsiness
Numb face on left side
Pins and needles in face
Yellow tongue
Weird sores at back of tongue
Sore throat
Swollen glands
Tooth pain
Bleeding gums
Unquenchable thirst 
Stiff, sore neck 
Aching shoulders 
Rapid, racing heartbeat
Hot flushes
Hot and cold sweats - inability to regulate body temperature correctly
Night sweats
Swollen lymph glands
Strange-smelling sweat (for a while I smelt of cottage pie)
Red rash under armpits
Liver pain
Kidney pain
Diaphragm discomfort (not THAT kind - shame on you!)
Something I can only describe as 'iron ribs' because it feels like wearing a metal corset
Bloated stomach
Occasional nausea
Developed intolerances to wheat and lactose
Alcohol intolerance (managed to wean myself back to the odd glass here and there. Priorities, people!!!)
Bad farts (lactose intolerance at its finest)
Irritable bowels
Bleeding bum hole (classy)
Weird scabby hair follicles on my upper legs, bum, shoulders and face (Oh, the glamour!)
Recurring thrush (I had this little gem for a year straight. Very thankful to see the back of that symptom!)
Peculiar periods (I'll spare you the details)
Needing to wee all the time
Stiff, heavy leaden legs
Pain behind left knee 
Pain in arms
Weakened and poorly functioning limbs
Sore, painful hands
Swollen hands and feet
Poor circulation in hands and feet

Oh yes, and of course fatigue. The sort of bone crushing, will-sapping fatigue that leaves you too exhausted to even answer a simple yes/no question. 

I think that's everything but then my memory is not what it used to be. Blame the brainfog!

If you've made it this far the. I salute you almost as much as I salute myself for putting up with this whole heap of poo. As I said earlier, with careful management of my daily routine and my diet, I am able to function a lot better these days. I may not be able to do a lot but I don't let that worry me. Instead I focus on what I can do. Hence why I'm dressing as a Princess again for M.E Awareness Day. It's a fun way to raise money without stressing my brain and body out too much. If you've donated already then I am extremely grateful for your support. If you haven't yet then please think about sparing a pound for me and my M.E. Let's face it, if I had someone to donate a pound for each and every one of the symptoms listed above then that would be quite a nice little amount for my chosen charity.

or text MPIX75 £1 to 70070
You can also donate more via text by changing the amount to £2, £3, £4, £5 or £10.

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