I wanted to write a post today about M.E. ( myalgic encephalomyelitis) or Chronic Fatigue Syndrome, as I suffer from the condition, and it’s ME/CFS Awareness Day. I started thinking about what I wanted to write and nearly decided not to write a post after all, as it seems self-indulgent, depressing and looks like a plea for sympathy. I don’t want to be defined by my illness. However, family, friends and colleagues have found it useful when I’ve been open about how it affects me, so here goes…
My symptoms at their worst:
- Constant chronic fatigue. It’s difficult to explain how this type of tiredness feels, the nearest I can get is how you feel when you have flu, with no energy. Rest or sleep often makes little difference. At my worst, I hardly left the house, but have thankfully never been bed-bound, and happily I can now even manage days out.
- Nausea and IBS symptoms.
- Memory and concentration problems. Including not being able to read or not being able to remember/find words.
- Palpitations (very scary).
- Lack of body temperature control.
- I’ve also suffered from depression alongside chronic fatigue.
Negative impact on my life:
- Having to go part-time at work and giving up the idea of a traditional career.
- Loss of confidence.
- Restriction on mental, physical and emotional activities.
- Identity crisis.
Loki, our terrier cross looking somewhat scruffy in his life-jacket.
On a more positive note…
- Going part-time meant we could get a dog, who provides companionship, gentle exercise and an excuse to get out of the house.
- Getting cognitive behavioural therapy, and other types of counselling, which has given me tools to deal with my depression and my tendency towards perfectionism!
- The chance to think about what I really want to spend my energy on and pursue more creative outlets.
- Realising that I have wonderfully supportive friends and family.
- More self-awareness (or Jay would argue that I’ve become a self-help junkie!)
- Appreciation that there are others who suffer to a much greater degree than I do, and I stand in awe of those who manage more severe symptoms and chronic pain.
I have been ill for about five years and was diagnosed about three years ago, after a battery of tests ruled out other conditions. My GP was reluctant to diagnose ME/CFS, not because she didn’t believe it existed, but because it meant there was nothing they could do for me. There is no known/proven cause of ME/CFS, which means it is very difficult to treat.
Recovery is possible, but varies greatly between people, as do symptoms. I am much, much better than I was a few years ago and will hopefully continue to improve.
One of the most inspirational ME/CFS sufferers I’ve come across is Michael Nobbs, whose The Beany #4 I reviewed recently.