A few years ago, I spent 13 hours on a coach and stumbled off in excruciating pain. That pain never left me. Not completely. I had not realised it yet but my muscles were becoming too willing to tense up and deeply disinclined to relax again afterwards.
The day my life ended
I was at a geek festival in Wales somewhere. A group of us had travelled up because both Brian Blessed and Professor Elemental would be there. Also, the marketing company made it sound a lot more awesome than it actually was. Not that the weekend was bad, just over-sold.
I knew something was wrong when a lady in a wheelchair gave me her walking stick because I needed it more than she did. Still, I muddled through and had the foresight (nothing to do with being too tired to leave for lunch) that I was in time to get a seat for the panel with Brian Blessed.
I later failed to get Professor Elemental’s autograph (that would not happen until a few years down the line).
Finally, I shuffled onto a coach and got did the 13 hours home again. By which time my spine was doing it’s best to twist the muscles around it into a giant ball of red-hot suffering.
It was bad enough that I went to see my doctor who took one look at me and said, “ankylosing spondylitis.” Which sounded like a magic word J. K. Rowling rejected while writing Harry Potter. Apparently, it means, “you are truly buggered; get ready for loads of pain”.
Many tests later, and the diagnosis was confirmed. My immune system was eating my spine. That, in itself, is not actually painful. However, all the muscle tension it triggers hurts like hell.
Mornings are the worst. I’m utterly useless for a few hours after I get up. Some days I never get to the point of being much use to anyone.
Still, I had pills and worse things happen at sea. Right?
The hard part
What no one warns you when you get a diagnosis like this is the way everyone you meet doubts you.
In the years that followed I would face an ongoing fight to prove to HMRC that I was not, in fact, faking it. To be fair, they treat all sick people like evil scroungers. They are, at least, equal opportunity bullies.
Along the way, I would have to educate my friends that despite appearances I was unable to bloody stand or bend and was not, in point of fact, just a lazy git. I mean, I am a lazy git; don’t get me wrong – if someone else will do stuff for me, I will let them. It just so also happens that I was also becoming unable to do stuff without a lot of pain.
Over that same time, the distance I could walk would shrink like that one episode of Star Trek. Some days have less pain and I can go further and some are worse, and I can’t. When certain bus stops began to see the edge of that distance reach them, I really started to worry. I’d love to say I have an answer but beyond fighting my own body, I do not.
Where is the upside?
Despite having more “me time” and thus, in theory, more writing time, I get less writing done. I feel like my whole life is that static warp bubble and it is only getting smaller. I sort of muddle through and some week I even get things done.
We writer types are supposed to be god-like and aloof or something; but most days I’m just a geek in need of stronger medication. Sorry to end this post on such a downer, but I do not have a way to spin out a happy ending from this story. Maybe because this is not the end. Not yet.