I wrote this post about a month ago but never found a good day to publish it. Well it’s no longer completely relevant and it’s a scarily personal and close-to-the-bone post but I’m proud of it in a weird way.
For the past seven years that I’ve had ME I don’t think I’ve ever got angry. I got frustrated with it, I got worked up by it and mostly I got upset by it. But I never got angry.
Whenever I refer to ME I call it ‘my’ ME. ‘Oh I can’t come to the pub, my ME’s bad today.’ ‘I’m going to have an early night, my ME’s bad.’ So I wonder if the reason I couldn’t get angry was because I saw it as an intrinsic part of me. I’d tried so many things to get rid of it and in the end I had to accept it was an undeniable part of me now. There was no use getting angry about it, there was nothing I could do. Getting angry at it was just getting angry at myself.
As it was I was just acting defeatist and vainly hoping that one day I’d wake up and it would be gone and I could get back to life as normal. But I was reading about ME and came across a deeply upsetting statement – people who get better from ME do so in the first five years. Well I’m looking at five years in the rear view mirror so I guess I’m stuck with it. Time to accept it, learn to adapt to a life where I’ll never work full time, never have a thriving social life, never be pain free and probably never have enough energy to raise children. Scary thoughts. The kind of thoughts that need a trained professional to help me come to terms with them. So I got a referral to a counselling service through my GP. A year later and after still never getting to speak to anyone (I’d had three ‘assessment phone calls,’ all of which got lost, had to be redone and then got lost again) I gave up on that too.
For two months I was bobbing along, working part time, spending most of my days lazing in bed, trying to get used to this as my future, when up pops on my phone a job advert for a Marketing Assistant. I don’t know why I clicked on it. Most emails like that I delete immediately but fate or destiny or whatever made me move my finger from the trash button to the open button. And there it was, my perfect job – marketing assistant for a publishing house and booksellers. Granted I wasn’t exactly the right fit for the job. My experience is limited to say the least. But I didn’t think it was so bleak that I couldn’t convince them otherwise. I actually thought I had a shot at this job. There was a catch of course – nothing is perfect – the hours were full time.
I didn’t cry, I didn’t lie in bed thinking how unfair it was that all my friends were off living life, with jobs they loved (or at least didn’t hate), moved out of their parents houses into new cities experiencing new things while I was being held back by an illness that no one could explain and definitely couldn’t treat. Something snapped in my brain and I got angry.
I don’t get angry a lot. When needs be I can shout and yell and slam doors but in most situations I start to cry before I get to that point. Not this time. This time I saw red.
Now it’s just deciding how to channel this anger. Everything I tried before to get rid of ME I’m going to try again. From today I am cutting out gluten, starting a serious exercise plan, religiously taking multivitamin tablets. I will combat this. It’s not part of me, it’s not ‘my’ ME; this is nothing to do with me. I didn’t ask for this so I’m certainly not going to let it feel comfortable, let it get its own way.
For the first time in years I don’t feel on the brink of tears. I feel empowered. And I’m going to make it last. If ever I feel my resolve weakening I’ve got this blog post to read.