Tag Archives: M.E Awareness Week 2015

M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

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M.E Awareness Week 2015 – 10 Things You Didn’t Know About Living With Myalgic Encephalomyelitis

For M.E Awareness Week 2015 I thought I’d give you a little glimpse into the world of M.E…

  • I’ve been living my life with M.E for company since August 2011. It appeared after a bout of swine flu and settled itself at a mild to moderate level quickly afterwards. It’s also known as Chronic Fatigue Syndrome which I much prefer as a label, not least because it’s easier for people to understand.
  • Although chronic fatigue is the headline act, M.E features a whole host of supporting characters such as pain in the muscles and joints, a random inability to control your own temperature and brain fog (technical term for your mind failing to work according to the instructions)
  • 25% of people with M.E are so severely affected that they are housebound, wheelchair bound or bedbound. I’m lucky enough to be able to goad my body into functioning semi-normally, although it is often feels like I’m carrying a five pound sack of spuds on each shoulder whilst a mouse nibbles on sections of my brain.
  • Despite Denise Robertson claiming on ITV’s ‘This Morning’ that “M.E doesn’t last forever”, it can and often does. Only a small percentage of people manage to regain their former level of functioning. I like to think I might be one of the small percentage. As Henry Ford said, “If you think you can do a thing, or you can’t do a thing, you’re right”
  • Living with M.E is like trying to use a mobile phone with a faulty charger. My body battery is never more than 50% charged and if I fling myself around doing too much, my power dies and I’m unable to function. Managing and conserving low energy levels are the key to coping with this condition.
  • The hardest part of having M.E at my level is that you feel dreadful but look fine. Unless you become a chronic illness bore and constantly regale people with tales of bodily woes, it’s difficult to explain to people why you can’t do everything you want and need to do. It’s even more difficult to explain why you can’t do everything THEY want and need you to do.
  • M.E has taught me to prioritise and organise to within an inch of my life, otherwise important jobs would never get done. I was rubbish at this before.
  • It’s also taught me to say goodbye to the futile practices of perfectionism and being competitive. I was never ‘good enough’ before I got M.E, but now I’m happy with the simple things such as holding down my job and managing to put a few decent outfits together while I’m at it.
  • Having M.E has also helped to separate the wheat from the chaff where friends are concerned. Not everyone can cope with a friend who is brilliant at emails but who doesn’t have the energy to materialise in person very often. Luckily, I’ve now got a fab core group of friends who don’t judge me for my methods of keeping contact.
  • You can still have fun with M.E. It’s not as easy and you might have to redefine what fun means, but fun is out there if you look for it. My pre-M.E methods of fun included dance, long walks and endless socialising. Now I enjoy watching dance clips on YouTube and chat with friends online or through emails. I might not be able to walk in the park and look at nature every day, but I can grow plants and look at those instead. I’m currently having a lot of fun trying to get my new Amaryllis plant to grow in a perfectly straight vertical line. M.E might consume my body, but it doesn’t consume my mind or my life!

*This post has also been published on Huffington Post UK’s blog section – you can read it here:-

http://www.huffingtonpost.co.uk/laura-roche/me-awareness-week_b_7252308.html

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