Sunday, 14 December 2014

I woke up like this - CFS and me.

Imagine waking up with the biggest hang over ever, you can't concentrate and your body is failing to do the simplest tasks. The act of rolling out of bed seems to have taken up 80% of whatever remaining energy you had. And imagine you were feeling like this, after a completely sober night where you didn't even leave the house, and you went to sleep about 10pm after a dinner and a couple of hours of Netflix.
That doesn't sound right, does it.

Imagine spending the whole weekend in bed with the hope that by Monday you'll look and feel fit for purpose and first thing that's said to you is "you look shattered". The only come back I actually have anymore is "I woke up like this".

I'm one of the 250000 people in the UK with chronic fatigue syndrome. It effects how I react, my energy levels and my concentration, I also often experience pain in my joints and spine and take a long time recovering from physical exercise, some times a whole day. In contrary to common random advice -Sleeping more won't make it go away, and can make it worse is some cases.

Imagine aching for a seat on the train or bus, but you look more or less able to stand. What could possibly say, excuse me "I know I don't look it but my joints are aching and I feel like I'm falling apart today so do you mind letting me sit down." You're waiting for a lift to take you 1 or two floors to save the last spoons of energy and someone's like "get the stairs, exercise is good for you". <insert side-eye>
When I was diagnosed, I was at university and didn't really tell anyone. I spent my first year travelling to and from university for hospital appointments, not quite understanding what was wrong with me, I had anaemia off and on for year or so and for a while I convinced myself that was it. I didn't really fancy a cocktail of various pain killers and vitamins and minerals everyday to numb the effects or keeping a diary of what I ate, I wanted to be a normal 20 year old.

Being in education was a struggle and many people don't know this but I got involved in disabled rights stuff on access to education level before feminism. However, I didn't do a really good job of dealing well with the daily microagessions of ablism, from friends, academics, fellow activist and strangers. I almost dropped out completely and probably would have if I hadn't joined my FemSoc and transformed my frustration of daily discrimination into something useful. For a very long time I used activism and close friends as my excuses to get out of be and grit my teeth through pain and exhaustion. 
I also did something silly and stopped taking proper medication a while back which I now know wasn't the right thing for me to do. I'm going back on medication soon, and it's probably going to be an awkward transition so bare with me, if it looks like I'm not concentrating it's not you it's me. I might ask you to go over the last thing you said once in a while to get me back on track on the conversation. Just so you know :)

Remember CFS is different for everyone and everyone has different coping mechanisms, mine mostly includes eating pizza, playing with my cat Cosmo, and making feminist postcards with BeyoncĂ© quotes. My friends have been brilliant at sending me postcards and care packages for periods of time where I haven't been able to leave the house. For more ideas for how to find positive ways of coping check out - http://thepillowfort.co.uk/

If you're also interested in understand friends with fatigue issues I also suggest you read this piece The Spoon Theory by Christine Miserandino
Take care!
I mean it.

xx

1 comment:

  1. Take care. And thank you for sharing your stories - it means a lot to many of us to know we're not alone...

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