If you’ve known me for a while, then you’re probably aware that I love writing. I began keeping a journal back when I was an angsty teenager that nobody could possibly understand (obviously), and ever since then I’ve found it to be a tremendous creative channel for expression. Over the last few years I’ve had a few blogs, and I’ve been fortunate enough to have a few places publish articles that I’ve written.
If you’ve known me during the last year, then you’re probably aware that I’ve barely written a thing. Whenever I sit down to write, it’s a reminder of the things I can’t do so well whilst I’m still getting over chronic fatigue syndrome/M.E. Whereas in the past I’d find a really clear image in my mind forming of what I wanted to produce, and the words would flow easily, nowadays it feels like there’s a dam slowing that whole process down, and the words reluctantly stumble and stutter out. It’s more tiring than it used to be too.
That said, I’ve decided it’s time to start again. There are a few reasons for this, the simplest of which is that I just really miss writing. Secondly, my recovery is coming along well and I’ve got the energy now to be more creative again. Thirdly, I was really moved by the response I got to the piece I wrote for chronic fatigue awareness day (shameless plug). And lastly…
…lastly I figure that another blog that brings attention to M.E. is no bad thing. The only thing that really bugged me about what I wrote for chronic fatigue awareness day was that it posted too rosy a picture of this condition. I’m a naturally optimistic person, and have always taken the perspective that the big challenges and setbacks which come our way are actually gilt-edged opportunities to learn and grow, if we can only just seem them for that. Whilst that’s helped me a lot with recovery, it gets in the way at times of giving a balanced picture of what it’s like to live with M.E. The day to day reality can get very grim, and there’s something in me which just wants to tell it how it is.
It’s hard to overstate how debilitating this illness can be, and how challenging it is to recover from. What makes this so much more difficult is that M.E. remains shrouded in scepticism, confusion and misunderstanding. Within the medical community it’s largely not even acknowledged that it’s a legitimate health condition (largely due to a lack of clarity over underlying physical causes), and there’s an implicit assumption in treatment options that it’s all in the patient’s head. I’ve volunteered and worked in mental health (where it is largely psychological, although even that is not straightforward) since I was eighteen, lived with M.E. myself and have friends who suffer with it, and I can tell you that this ‘just-sort-your-head-out’ approach to getting over M.E. is bullshit. It’s unhelpful and demonstrates a lack of empathy and compassion – it’s no coincidence that recovery rates are so poor, and yet recovery is very much possible. The taboo that surrounds mental health issues is not dissimilar, but even in just the last decade there’s been a real push to change attitudes, and it seems to me at least to be working. Sometimes now people talk to me about how their mental health is, in the same way they speak about their physical health, which I would have found astonishing five years ago. Yet the friends I have with M.E. by and large feel too ashamed to speak about it. That has to change.
This is the bit where I’m supposed to say what I’m going to write about in future blogs, and round up with some inspiring line about they will transform attitudes and blah blah blah. But honestly I don’t really have a clue what I’m going to write about (making it up as you go along is vastly underrated), and I’m not really in the space anymore where I’m desperately trying to change the world (and have a lively social life, a relationship, be super-fit, have millions of hobbies, save some cats and still be back in time not just for dinner, but to prepare and cook a three-course meal). Actually taking some of the pressure and expectation off of myself (particularly when it comes to helping others) has been one of the keys to recovery for me, and I might touch on that in another blog. Maybe.
I’ve given myself complete license to have some fun with this, and create freely. My second least favourite thing about blogging* is coming up with titles, and so for each blog I think I’ll use lyrics from a song. To be honest it’s quite appropriate, as music has lifted my spirits many a time throughout recovery. You can’t enjoy much when you’re too tired to do more than lie down, but you can still find beauty in a piece of music. The title for this one’s obvious, props if you get it every time.
Surely the best thing though about having a blog about M.E. is the wonderful plethora of possible blog titles it offers. A few that I considered…
Living with M.E.
Me and M.E.
A day in the life of M.E.
Let’s talk about M.E.
What the M.E.!?
I’ve also encountered Me versus M.E. (https://www.facebook.com/mevsmeblog?fref=ts), Why Me? http://www.amazon.co.uk/Why-Me-Alex-Howard/dp/1901447715) and others which I can’t remember….since having M.E. I’d be pretty wary of even taking on a goldfish in a memory contest.
For now though I’m going to thank you for reading and hope that you stick along for a what will be an honest ride. I’ll be back with another blog…at some point.
*My least favourite thing about blogging is the technical side of things – making your blog look sexy, working on SEO, reach etc etc. So I’m not bothering with any of that, as you can no doubt tell from the awfully basic site. I picked the theme option because it was called ‘Kelly’, and I’ve not even written an ‘About’ page.