ME, ME, ME; it’s all about ME. It’s ME Awareness week, so you get another bit of
a rant considered thinking about how my world has changed in the last 5 years. I’ll stop going on about it after this.
I don’t avoid thinking about my ME, but sometimes it’s so much of my normality now that I need to actively remember that this is not how I used to be, how I was when I was healthy. I used to work full time, drive a lot, work with a wide variety of people and be sociable. I even had confidence; I’m only just beginning to regain some of that. Now I’m in the house a lot, hardly ever drive, and have to be practically pushed out the door if I’m going out of an evening, and that’s a rare enough event.
Last week we had ‘Blogging Against Disablism Day 2011’– an opportunity for bloggers to comment on their experiences and to raise awareness of issues. There are posts about access, healthcare, politics, education, language, relationships, and so forth. Some very interesting material, some relevant to me, some, happily, far removed from my experience.
It started me thinking about my own situation. I trundle along in my world, getting on with the everyday, trying to focus on what I am doing, rather than what I’m not able to be doing. I build in rest periods, and do what I can. That’s grand. I’m ok with it all now. You’ll have noticed a number of posts where I celebrate small achievements- that’s what I’ve got.
I have spent time and energy reading up on ME, but I do it rarely because there is so little to be positive about, so much negativity. I don’t volunteer for an ME charity because I want to think about something else. I don’t want to define my life by my ill health.
When I first fell ill I fully expected to go back to work on Monday. Or next Monday. Well, at least in the next few weeks. Certainly before I stopped being an asset to the company and became a liability (and who knew that would be a clearly defined, almost tangible, moment?).
My GP has been as supportive as he can be. I’ve had dozens of tests and have been referred to the regional ‘specialist’. I’ve had two courses of Cognitive Behavioural Therapy. Over the counter painkillers help with the sore legs and arms. Regular massage helps with the stiff shoulders and overall tension. But there’s nothing can be done for the fatigue, mood swings, or the brain fog- we’ve all just had to learn to live with those.
I’ve often thought that things would be different if I had a broken arm, or some sort of visible problem. Maybe then I wouldn’t feel guilty about not being fit to stand for too long and having to sit down on the ‘old lady’ seats. Maybe I wouldn’t feel a fraud, or somehow a failure, for being prescribed medication for anxiety and depression. Maybe it wouldn’t be so difficult to persuade the benefits folk that I’m genuinely unable to work if I somehow looked ‘sick’ rather than just hungover.
The best description I’ve read about the challenges of living with a chronic condition is the spoon theory. Some of you will be familiar with it. It still makes me cry.
That’ll be why I don’t linger in the ME world for too long at a time.