NEITHER HERE or THERE

 Bonjour, 

I recently wrote a poem entitled 'Neither here or there' which mostly relates to me and those with moderate M.E. (Myalgic Encephalomyelitis). I've been ill for almost 24 years now and seem to have stabilised on a moderate level. I had a severe onset, some partial recovery which enabled me to work for a while but then it became evident that if I continued to push myself to work I would end up more severely ill. Therefore I stopped work and conceded that my health had to come first. Since then I've had a remitting and relapsing form of this illness. However, my baseline or my normal 'setting' is usually moderate. This means that I'm unable to work, need a lot of rest and restricts my daily activities. The majority of the time I'm housebound. A baseline is what you can do without causing a crash or a relapse. This requires careful management with rest and pacing. 

According to some of the estimates about a quarter of those living with this illness fall into the mild category, a quarter falls into the severe or very severe category and half fall into the moderate-to-severe category. The latter is me and my life. 

Having severe or very severe M.E. must be like a living death. Yet those with moderate M.E. see a decrease in their activity level by at least 50%. That's quite a significant loss. 

Personally I find it a constant battle to manage my illness. There are times when I can go out and of course I look perfectly fine. Then the assumption is made that either I've recovered or I was never ill in the first place. They have no idea how I have to plan any activity, how I have to rest beforehand, rest afterwards and take painkillers. This is the problem with an invisible illness. 

In my poem I try to express how it feels for me. It's as if I'm stuck on the same setting - unable to work but my life severely limited. There are times when I may see a small improvement but then something comes along and sets me back into a relapse. This happened to me recently when I caught a very nasty cold and cough virus. I went below my baseline and it took many months to get back to where I was before the virus. That can be very frustrating and distressing. 

Yet despite all the careful management of my illness I see no signs of a complete recovery. I feel stuck and don't think that I'll ever find my way back to that healthy person I was 24 years ago. That's my reality. And that sentiment only increases with age. 

À bientôt 

The French Femme