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International ME/CFS & Fibromyalgia Awareness Day

Today is International ME/CFS & Fibromyalgia Awareness Day. Both ME/CFS and Fribromyalgia are debilitating illnesses that have no cure and very few treatment options.

I suffer from ME. "What the hell is that?" I hear you ask.  There is no simple answer to that question.  For every single sufferer the effects of ME are different.  Health professionals prefer to refer to the illness as CFS - Chronic Fatigue Syndrome - because this is the closest they can come to a definition.

It is "chronic" because for many (not all: there are a lucky few who manage to recover totally) there is no real escape.  It is long lasting and reoccurs at the most inconvenient of times.  For many people though, it never goes away.  
"Fatigue" is the only - out of a mile long list - symptom that all sufferers share.  Now, I know many of you are intelligent people and have already worked out that fatigue is just a fancy way of saying "tired", and you are right.  I imagine you are also thinking, well, being tired... that's not so bad.  You are wrong.  The fatigue that innocuous little F refers to is not the type you get after a late night out with friends and an early start.  It is the type you get after running 10 miles on little sleep with no energy drinks or food to pep you up.  It is a tiredness that burns through your body making it hurt to stay awake, making you want to scream at the world - LET ME SLEEP.  But, it doesn't go away.  It doesn't  matter how long you sleep for or how much you lie on the sofa and watch the Simpsons... it doesn't ebb.  It drags you down, mentally and physically, wrapping you in a fog so that the day becomes a blur of nothing but time you wish you could spend sleeping.

And finally, it is a "Syndrome" because it is a collection of symptoms.  For me, they are the following: fatigue, mental confusion (including slow processing, impaired concentration, unreliable memory, word aphasia and mental fog yet my brain doesn't stop working - it just yammers on like an old lady at the bingo), muscle pain, joint pain, fluctuating temperature (like now - my fingers are freezing but my face feels like it is on fire), headaches, sore throats, post-exertion fatigue, feeling weak and one crap immune system.

Sufferers though believe that CFS trivialises what they go through because it doesn't sound so bad.  Many people, including health professionals, don't believe it exists.  That what we suffer is all in our heads and that we should just pull ourselves together.

It's not that simple.

It takes me about half an hour to read one page of text because I can get to the end  of a paragraph and not remember what I have just read.  It hurts to stay in one place for a long period of time, so train journeys and lectures are a bitch.   Walking up a flight of stairs or a hill makes my legs feel weak and shaky and my muscles burn like someone has just poured lava into them.  When I feel cold, it doesn't matter how many jumpers I put on or how I curl around a hot-water bottle, I can't warm up because the cold is on the inside, right down in my bones.  After each of my uni lectures, I have to have a sleep because I just can't think any more and the world blurs away into nothingness.  It takes me a couple of hours each morning to get going.  There is no way I can do anything that requires serious thinking before lunch time.  When I go to sleep I don't wake up easily.  I can sleep for 24 hours (and I have done in the past) and feel absolutely no benefit but I just can't wake up.  Physically, I am unable to keep my eyes open.  It hurts to type for a long period of time so I am learning to use voice recognition.  I have to get a taxi from town because I can't carry my book bag and always feel as though the driver is judging me.  If I am ill, well, lets just say its been a month and my tonsillitis still hasn't gone anywhere.

And at nights I want to cry because my arms, my legs, my back, my neck, my fingers, my feet and my chest hurt so much that I contort my body into awkward positions just to get the smallest bit of relief.  The drugs just don't work but sometimes the tears do.

But it could be worse. 

Last year I really thought that my life was kind of over.  I could barely manage to get up and spend a day doing virtually nothing, lying on the sofa.  This year, I have almost finished my History degree.  It has only taken seven years.  Many people - my parents included - doubted that I could do it.  I was a straight A student all throughout school, my body just couldn't take uni.  But I knew that I would never be happy if I didn't go back and do it.  And I have.  

But on my terms.

I have been frank and honest and the university have been brilliant.  They have made allowances and concessions and I have felt guilty about accepting them.  But, there is no way I could have managed my degree without them.

There are times when I hate my life.  When I hate that I can't write one night because my hands hurt too much to type or I am too tired to think but my brain won't stop whirring.  There are days when I want to go out and sit in the sun but can't because I get too hot too fast and it just becomes uncomfortable.  There are afternoons, like today, when I have to curl in bed because the pain and the coldness won't go away and the only method of escape is sleep.  If it comes.

 But, I am not bed-ridden.  And for that I am eternally grateful.

I can do what I want, if I plan for it.  If I judge what else I have to do and think about how much energy that will take.  And sometimes, sometimes I say "Screw it" and bake a batch of cupcakes even though I know the next day I will pay for it.

Life is always about choices, about balancing the scales.  You don't get anything for free, and no one knows that better than a ME sufferer.  We bargain everyday just to do things other people take for granted.  Imagine having to choose between having a shower and doing the washing up.  Can you?  It really sounds stupid, but sometimes that is the reality.

At the moment, my reality is my degree.  I read to relax but I don't write, I don't go out and I don't have late nights because my energy is going to my degree and no matter what the result, it will mean more to me than anything.  It will mean more than all of my friends who finished their degrees years ago.

I might not ever be able to have a pressurized and high-flying job.  I might not ever be able to go back-packing round Australia.  But I guarantee, what I do achieve will be worth more than any of those things.

So don't feel bad for me because I struggle with this leech of an illness everyday.  Acknowledge that there are people in the world who fight different battles.  We might not look ill, we might seem like the life of the party but we do struggle.  And everything we do is made all the sweeter for it.

Or so I tell myself.

If you can spare five minutes, just think about people who suffer something different.  Who suffer from something science is only just beginning to acknowledge.  When I was first diagnosed, when I was 9, people thought it was a made up illness.  Even my class mates didn't accept it - despite the fact that I was asleep on the desk at 9.30 am.  There are still members of my family who don't get it, because they can't see it.  You can't see pain or fatigue or confusion.  

But it is there.  Day in, day out.  It colours everything and even though it mostly just fades into the background like white noise, there are still days when it raises its ugly head and bites.

If you are interested in helping promote ME you might also want to check out these sites because everyone is dealing with something different:
ME Research
Action for ME
The ME Association

Take care x
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