Wednesday, 16 March 2011

Living With M. E.

People sometimes ask you what it's like to live with M.E. (myalgic encephalomyelitis.) or it's contemporary name CFS (chronic fatigue syndrome).

Well here's a small window into the world of chronic illness. For a start, every morning you wake up you feel as though your whole body has been hit by a high speed train. There is not one part of you that doesn't hurt. Your limbs feel like there are lead weights attached to them, and to add to this lovely experience, you feel like you've been in the Sahara desert, because you're so parched your tongue is sticking to the roof of your mouth.

Even getting dressed is an incredible effort. You never feel refreshed after sleep, that is if you actually manage to get any. Insomnia is all part of the package you face every day.  The extreme lethargy you suffer is so frustrating and depressing, there is no get up and go left, just the most incredible tiredness all the time. Some days you lack the mental clarity to read, write, or even communicate with people properly. Then there's the migraines, your head hurts so much you cannot lift it off the pillow, and any light natural or not hurts your eyes, and to top it off you feel incredibly sick. These can last for days.

I'm afraid others tend to view you as a major 'Pain in the backside'. Why? because you can never plan anything ahead. You can't say 'Yes, I will definitely be there', in two weeks, two days, or sometimes even two hours time, because you never know how bad you are going to be on any one particular day or week.

Many doctors (not all) have little or no understanding of this terribly debilitating illness. If you explain to them that you are extremely sensitive to the fillers and constituents in generic medicines, they are very sceptical. I was lucky enough to have an understanding GP regarding this, because generic medicines have different fillers and colours, which differ every time you receive your prescription. So consequently you are never guaranteed the exact same formula at the chemist. This can cause unnecessary suffering in a person who has M.E. 

M.E. takes the vibrant person you once were away, you have to learn to adapt, and this is extremely hard to do. There are not many people who understand just how difficult this is, except other people with M.E.

I've not covered every aspect of M.E.. I've only just scratched the surface really. It may all sound greatly exaggerated, but I can assure you, it's not. People with M.E. are still people. People who love and appreciate their families, understanding friends, and the more simple things in life, like a beautiful sunny day. We learn to enjoy our 'better days' to the fullest, and endure the bad days as best we can.

A little understanding goes a long, long, way to making our lives more livable.


  1. Well written Suzi, A harsh reality indeed.
    Keep the spirit and the writing up!
    Best wishes
    Corina X

  2. Thank goodness you can write, to escape your body a bit. I hope there are periods of remission.

  3. You tend to shout 'Hurray!' when you actually get a good day. They tend to be few and far between. I've lived with this for over 20 years now. It's as good as it gets.

    Thanks for you concern Beth, good friends are important. :)

  4. That's such a true picture. It's frustrating because - if you're like me - you don't look 'ill', so it's very hard to explain. Keep on fighting - and enjoying the good days!