I promised myself that I'd write a little bit about ME/
CFS in May because it's awareness month. I find it difficult to write about and normally avoid discussing it. This is partly because ME is a controversial illness that many people still want to ignore in the face of considerable evidence, but also, like anyone who has an illness or disability I really don't like the thought of being defined by it. Wheelchair users often have to deal with people seeing the chair before the person and nobody likes to be defined by what's wrong with them, whatever it is.
I'm very lucky. I can walk, I can work for a living and I can look after myself. Many people with ME/
CFS can't do these things. Many are bed bound and can't tolerate light or loud sound. Others can only make it out of the house by using a wheelchair and rely on the care of family members. I feel guilty that I'm relatively able bodied.
I am affected by fatigue. I usually need a couple of rests during the day where I go to bed for an hour or two. On bad days I have less time out of bed than I spend in it. Thankfully, I have an
iPod Touch and a wireless
internet connection which means I can check email from bed and deal with any immediate work issues as if I were at my desk. My working hours have to shift to accommodate how well I'm feeling. I've had lots of advice about trying to rest more on good days to break out of the boom and bust cycle of wearing myself out on good days and then having no choice but to rest on the days that follow. I've tried to follow this advice, but it seems that I have a system that more or less works. It's far from perfect, but I still manage.
I panic at signs that I'm getting worse. A run of bad days has me worrying that the illness is progressing and I may find myself unable to work or unable to deal with the normal challenges of day to day life. This is where knowing about people with ME who are much worse off than myself becomes particularly concerning. At some point most severe sufferers were mild or moderate cases that simply got worse.
ME/
CFS is hugely unpredictable. I am less able to do stuff this year than I was last year
and the year before that I was close to being symptomless. Prior to that there have been ebbs and flows in my health, exacerbated by treatment for severe depression. Lithium has damaged my thyroid gland and also arguably my liver. I was first diagnosed with chronic fatigue in 1997, triggered by glandular fever in 1996. The change in my diagnosis to depression reflected my
GP's belief that post viral fatigue isn't a long term condition and hence any long term effects must be depression related. Depression and anxiety have been big problems for me over the last decade, there's no doubting that, but it's now accepted that these were caused by the ME/
CFS.
I am lucky that I'm not in constant pain. Many people are. I have daily headaches and a number of general aches and pains, but these aren't much different to the discomfort a healthy but unfit person might encounter after a vigorous work out without warming up.
Ok, that might not cause a headache, but I hope it gives you some idea. I know that I'm lucky in this. Some people hurt so much they can't stand a gentle touch.
Fibro sufferers deal with this all the time. It sounds like an awful condition and I'm so grateful that I don't have it.
Cognitive problems are much more apparent. When I'm feeling bad, I have difficulty stringing a sentence together and listening to someone else is next to impossible. When I'm affected like this, conversation is very difficult indeed. It can become difficult to write, which is why people who have email conversations with me or chat on Twitter might notice that I seem talkative at times and then suddenly go silent. It's because the juice ran out. Jo can be talking to me and I'll have forgotten what she's said by the time she gets to the end of her sentence. I sometimes start a sentence of my own and drift off in the middle of it because I'm struggling for words. I know what word I'm reaching for, but I can't remember where it is on the shelf. These are symptoms of what many people call brain fog. Suddenly messages aren't getting through the mind clearly. If thinking were walking this would be wading through treacle.
I hope this gives you a glimpse of mild ME, or at least my version of it. One of the reasons the illness is poorly understood is because it isn't easy to understand. Different people have very different experiences. Many, like me, choose not to talk about it for fear of sounding like a whiner or because they know they won't be believed or understood. Andrea
Martell's example and the
Blue Ribbon Campaign persuaded me that maybe an honest account of my experiences might not be such a bad thing.
