Start at the beginning. Start at the end. It doesn't really matter.
There is pain.
I rode under a mile today. I rode as fast as the stupid 7 speed steel piece of crap Center Parcs calls a mountain bike (oh yeah, bike snobbery, I have it, and I'm out of fraks to give) could go. I ran out of gears. Truth be told, I didn't run out of rage, which was the thing that fuelled this piece of utter stupidity.
Channel it. Yeah. Right. Anger fuelled by frustration. Anger fuelled by shame. Anger fuelled by loops, looping around and around and around and around. Anger at myself and my body. Anger at drugs given which undid all my hard work and with no warning. Who the hell gives someone who's put so much effort into losing weight and getting strong an appetite stimulant anyway?
Anger. At the world. At my genes. At no cure and reclassification that still makes it sound like this body I am stuck with is no more than a minor nuisance. Variable. No gene marker identified. No specific test except for the Beighton score - can you put your hands flat on the floor? Yes past it. Can you bend your thumbs down to your wrist? Yes. Elbows go backwards? Oh yes.
They don't ask: does your spine go backwards? Does your pelvis have a range of movement most belly dancers would kill for? Does your little finger twist because you've dislocated it so many times you no longer notice if it's in joint or out? Does your neck flop when you're tired, so tired you literally cannot hold your head up any longer? Do your toes work like a second pair of hands?
Oh, don't get me wrong. All these things have upsides. Some I can tell you and some I can't. I'm an ace climber. I'll get up that wall in ways you can't even imagine. I'm strong - collagen is what means my joints wander off all over the place and my skin bruises so damn easily but it also seems to mean, somewhat ironically for someone banned from lifting weights, that I can lift a grown man clean off the floor with no bother at all. Yeah, come at me bro. Bad move. Kicks like a mule.
I rode under a mile today. I rode all the rage out. I grinned that grin. The one I've been missing. I hoppped off gleefully at the other end. I felt proud. Proud I'd taken corners like the old me. Proud that riding a motorbike has taught me so much road sense. Proud I can still ride in a skirt like a loon and maintain some decorum. Not all of it but some. My nan would be proud.
Then I lay down for a nap and the nap didn't happen because something more important came up and when I stood up I sat down. Sigh to a scream (silent).
It's like...it's not like normal bike pain. I've ridden...things. Silly things for a fat person. I've hurt. I thought I'd hurt. I've ridden epic things, things I'm proud of, things that make other mountain bikers go 'you did what now?' and give me that look up and down. Yeah I did and yeah I'm fat and yeah get out of my head, that's not your business. I didn't know pain.
Because bike pain leaves. Eventually. But it always leaves. And then you go looking for some more because you're an addict. Addicted to the edge. Addicted to dancing on it. Addicted to the pain. Addicted, actually, to those lovely endorphins that come flooding through your brain, the dopamine and the serotonin that come after. The adrenaline that comes before the pain. All the super nice happy hormones, swooshing and swirling along your bloodstream with the same grace and favour you bestowed on that single track x minutes ago.
So was I. No snobbery on that score. Addict. The acceptable addiction. Some insurance companies reward you for it, so it must be okay right? And the NHS is never gonna tell you to stop.
This pain. Obliterates. I don't know for sure but I think when pain becomes chronic, when the only thing you acknowledge is what level of pain there is, and whether you can focus on something else than it today or not, that maybe you burn through some of those hormones. Or that something weird happens. Because the endorphins don't carry you through. Nothing does, truth be told. Choosing to inflict more pain on top of the pain is akin to...
Never give up. Never give in. Never give up. Never give in. Never give up never give in.
It burns and it bites it aches and it stings it gnaws with big teeth and small teeth and I don't think it will stop tomorrow. Nor the day after. The nausea will pass by Saturday. By Sunday I will have my range of movement back that I had this morning. And maybe on Monday I won't wake up white faced with blue lips. So attractive. Come and get me.
Rage. Fuels. It's all I have and it's what I need. What else would get me back on the bike tomorrow, after all? What else would mean I will ride my own bike from old house to new this weekend?
Sometimes you take whatever you can. Sometimes the trade is so bad it's no trade at all. Sometimes you know either choice is no choice at all. I can't stay where I am. I have to step onto the path. I can't step off again until my muscles splint my joints and I am comfortable with the mileage I can do in a day. Until I am strong, every silent scream swallowed, every time I hit the handlebars in frustration, every time I throw my bike down, over, away, every time I sit by the trail and cry tears of humiliation faded memories, wisps of misty imprints, distant and debarbed.
This is going to hurt like nothing else I have ever experienced. I needed to acknowledge that. I need to look it in the face. Write it down. Think it through. Lay it bare. I won't pretend. I won't hide. I won't be anyone's inspiration porn. My name is Louise. I am chronically ill. I am a broken mess of genes. It isn't pretty. It isn't inspirational. It isn't even going to be enjoyable to read.
I don't care. I'm too busy looking into the face of a monster and staring it down. Hard.
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