Thursday, May 12, 2011

ME/CFS Awareness Day

I was diagnosed with Chronic Fatigue Syndrome, otherwise known as ME, or Myalgic Encephalitis, almost a year ago, though I had symptoms long before that. I have experienced, and do experience:

Severe pains in my limbs
Inability to concentrate
Brain fog
Constant tiredness
Periods of severely debilitating exhaustion
Unrefreshing sleep - ie sleeping for ten hours and waking up exhausted. Day after day.
Memory problems
Swollen glands
Inability to regulate temperature. I am often too hot or too cold, most often shivering with cold when actually its quite warm
Numbness/pins and needles, particularly in my hands
Chronic itching

There are many more symptoms of CFS and ME that I don't have. I am one of the lucky ones: most days I have enough energy to dress, to shower, make an evening meal, do some laundry. Those are the good days.

On a bad day, climbing the stairs in our house is exhausting. I barely eat or drink if there is no one else at home, as getting up is so much effort and it hurts to stand. I don't have the concentration to hold a conversation, to focus on a book or even a tv programme. Sometimes I have several bad days together. Occasionally the bad days continue for weeks, with maybe one or two slightly better days interspersed. Days on which I am delighted to feel a bit better, do too much and then am rewarded with another week of bad days.

Fortunately my bad days are becoming fewer, and a day as bad as I have described above is rare. However, the good day I have described is also about as good as it gets. I am no longer able to do something as simple as, say, hoover the house or change the bedclothes. I have changed the bed about twice this year (I hasten to add, my husband has done it several times also!) and both times I was left exhausted. I rarely leave the house alone. Another feature of the condition is that the exhaustion doesn't always come on until later. I can spend a couple of hours walking around the shops occasionally, or an evening with friends, and sometimes just that minimal effort is enough to make me ill for two days, a day or two later. When you have CFS, people tend not to see you at the bad times - during a good period you may seem fine (to them) and so they have an incorrect impression.

I haven't worked since January 2010. Since then, my condition has gradually improved, though with many setbacks. I do finally feel as if I have hope of recovery - which makes me very lucky. There is no cure for CFS/ME. There are a variety of treatments, none of which seem to be terribly effective: at least there doesn't seem to be much proof. The only 'treatment' I am having is B12 injections from my GP. The Primary Care Trust in my area took a year to think about it and then decided not to fund any treatment for me.

I am posting this not to make you feel sorry for me! There are many, many people suffering much more than me, but in the hope of helping even a few people more aware of the condition.

Please go and read this excellent post by the Laughing Housewife

and if you have CFS/ME, (or even if you don't) and struggle to get things done, particularly if you of a creative nature, (or even if you're not), check out Michael Nobbs' blog Sustainable Creativity for some inspiration.


  1. I hope you have been taught to manage your fatigue?

    Imagine a graph of highs and lows. Your days should not be busy-exhausted-busy-exhausted-up-down but a flat line, a plateau: do a little each day instead of a lot one day and then be unable to do anything the next.

  2. I haven't had any medical advice beyond being put on B12 injections, and one doctor suggested anti depressants despite the fact I am not depressed. I declined. I do try to pace myself, but find it very difficult.


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