It wasn't until I sat down at my computer this morning, that I realised today was a big milestone in my life. It is exactly 6 years ago today that I 'got' ME.
Well, I realise now of course that this isn't technically true - I can see now that I had been building up to it for years, with odd pockets of illness, exhaustion and just not feeling right here and there, but Wednesday 13th June 2012 was the 'big bang' in my universe. The straw the broke the camel's back. The crash that seemed to start this whole thing off.
I've written that date many times over the years, and thought about it often too. I've never forgotten that exact date - it always felt like it carried a sense of foreboding, of universal 'tricksterness', that one minute you can be perfectly fine, and the next, you are plunged into what feels like a lifetime of feeling horrendous, losing all the things that form your life, and not knowing if and when it would ever end.
Ooh I went quite dark there! Let's bring the energy up a bit...
This year is different - for a couple of reasons.
Firstly, this 13th June also falls on a Wednesday, like that one six years ago. When I saw that date on my computer - Wednesday 13th June - it stopped me in my tracks. Not because I felt wracked with negative emotions (which I thought I would), but because this date, that carries with it so much weight and meaning, actually just felt like another normal day. Not scary, not foreboding, just a day. A beautiful, sunny day, as it turns out.
Secondly, I am now recovered from ME. Hang on let me shout that a bit louder:
I AM NOW RECOVERED FROM ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
My ME experience of 'how the hell do I get myself better?' was twofold: initially many years in the wilderness of researching and investigating what I could do to recover myself, whilst deep in brainfog and exhaustion - kind of like trying to save your own life whilst blindfolded and with both hands tied behind your back. This was in itself an exhausting rollercoaster of finding stuff that kind of helped and stuff that really didn't help (but still cost a lot of money!).
Then finally finding the recovery programme that actually pieced together why I felt like I did, what all the weird and wacky symptoms were about, and all the different things I needed do to nudge me gently, but consistently towards recovery.
I always wondered why people who had recovered from ME weren't shouting it from the rooftops, dancing through the streets and interrupting primetime TV to put out broadcasts announcing their newfound health to anyone who would listen.
I kind of get it now. Kind of.
Here is my experience of it anyway:
- When I had it, ME became the water I swam in. I genuinely forgot what it felt like before I got it. In fact, when I first started to feel 'normal' for tiny amounts of time, I thought it was just another baffling symptom; vis: "oh god, I feel weird today, what fresh hell is this?...oh, it's what 'feeling normal' feels like!"
- In the same way, feeling 'normal' becomes the water you swim in too. Don't get me wrong, I absolutely don't take it for granted - I am grateful every minute of every day that I have my health back. But 'normal' becomes, well, normal.
- Recovery is a gradual process, an 'aggregation of marginal gains' as someone once said (the Sky cycling team coach, maybe? Wow, I'm great at references!), so it kind of creeps up on you (in a good way). There was no exact 'ta dah!' moment of 'look at me, I am healed!', but you just wake up one day and realise that you've actually felt normal for a pretty long time, and that you haven't had a relapse for a good while. I must admit, I did worry a little that experience had taught me that a relapse would come, at some point when I was least expecting it and I'd be plunged back into the world of being 'someone with ME'. But I knew that this time was different. I wasn't having to moderate my physical activity - I could push myself with cardio and weights, and I could do gardening, go to the gym, meet a friend for coffee and spend four hours marching round a shopping mall, all in the same day if I wanted to.
- And actually, in the early stages of having recovered, you do still worry a little that you might inadvertently 'poke the beast', and bring the symptoms back. After all, when you've had a chronic illness for a long time, it takes a while to shift your mindset to 'normal' being your new normal.
So Wednesday 13th June 2018 is a good day for me. A spectacular day actually. I value my health so so much now I have it back, and I honour my wellbeing above EVERYTHING else these days. And now, this day gets consigned to history. I choose to bury it. I'm busy living the rest of my life.