Yesterday, my boss congratulated me on how well I have been dealing with this mystery illness that makes me too tired and achy to get into work sometimes. I was a bit bemused. Sometimes it feels like it is draining the life from me, but I am lucky that my employer is understanding enough to let me work from home when it gets too much.
Reading our lovely Diva's 'M.E. and Me' entry last week, I thought that she's the one we should congratulate for dealing so well with her M.E. It is a debilitating illness, and yet she remains upbeat and determined not to let it take over.
Although I try not to let it, it sometimes feels like it is ruling me. It's no fun at all when you get all excited making plans for the weekend, then realise that, actually, you won't have the energy to do it, and even if you did feel well enough, you'd be so tired that you'd be ill for the next week.
Although my symptoms are very similar to Diva's, the doctors say that all sorts of disorders express symptoms like these, and as slow as it might be to get a diagnosis, they have to work backwards at giving me a diagnosis, by process of elimination.
I can't tell you how sapping this thing is, but worse than having to live with it, is having people around me doubt that there's anything wrong with me.
I have lost track of the number of times that I have been told I need to get more fresh air or more exercise, that I need to drink more water or stop being such a hypochondriac. But the worst one? Rolling their eyes and saying ‘Stop looking for attention’. You may not be able to physically see my symptoms, but they are very real indeed. It’s very upsetting that people I love don’t understand.
Sometimes I’m so frustrated that I wish I could transfer my pain onto them for just a few minutes, so that they can feel exactly what I feel all day, every day. How well would they deal with the constant tired, aching, weak muscles, bouts of exhaustion, muscle twitching, recurrent sore throat and illness, joint pains, insomnia, hair loss, skin irritation (shall I go on..?)? If my boss can understand, why can’t they?'
'This' is not me. I wish that I could wake up tomorrow and feel normal - just like I used to a year ago. Some days I just want to cry…