It all started a few months ago. After a stint in hospital, the leg tics began... Now, I've always had twitchy legs and shaky knees, but these tics are an honest nightmare! To begin with I developed a few, sparse but odd leg tics. I began to squat or pose like a ballerina, soon my legs began to give way randomly, as though I simply have no strength in them. This went on for a few months and were mostly inconsequential, and then it got worse.
Recently I've been struggling more and more to walk distances and have started to use a walking aid. Occasionally I've found myself needing to use a wheelchair to get about. To begin with these episodes lasted a few days at most and weren't particularly painful, however recently I've felt as though my back and legs are permanently tensing. The last 12 days my leg tics have seemed relentless. When my legs are strong enough to hold me they hurt and when they don't hurt they feel as they're not there, every step feels as though I'm going to fall through the floor, and it takes a concerted effort to maintain a right foot, left foot pattern.
I've become more nervous about going out alone because of this (not that I was fond of that anyway!) and I am even finding moving around the house tricky.
I've spoken to other people with Tourette's, seeking advice and reassurance, and many have commented that, even if they've ended up in a wheelchair for a while, most of the time the tics subside. I guess this is comforting, the knowledge that if the worst should happen, it may not be permanent, but it doesn't cancel out the fear that I may end up in a wheelchair in the foreseeable future, especially if things get any worse. I guess the only thing to do is prepare for the worst and hope for the best.
My biggest fear is that, if I do end up in a wheelchair, even if the tics do subside, I will have lost the strength in my legs to recover quickly. I'm trying to maintain a small level of exercise but it's difficult when your limbs aren't on board! And, with that in mind, I intend to try some aqua aerobics (the theory being that exercising in water will be slightly less painful!) first I need to find a class to join, but as per always the anxiety involved in starting something new (and potentially soggy and embarrassing!) has so far prevented me from taking the plunge (budum-tch). I'm trying to keep moving, doing a little and often however it's feeling more and more little and less and less often.
Unfortunately I am allergic to ibuprofen so my pain control methods are limited, I am in a lot of pain and it's making me grumpy, intolerant and generally the human equivalent of a pointy stick! Normally I am a relatively relaxed and happy-go-lucky individual and honestly I think I'm more frustrated with my own emotional response to pain than the pain itself. I'm very aware that, for the past few days, I seem to be fluxing between cranky and exhausted with near impressive speed and I hate it! Any heighten mood greatly impacts my Tourette's and my own foul mood is setting off my tics, which in turn are causing pain, which it turn is making me mean and miserable... It's a visous circle!
As I've been walking with a stick ( like a pirate according to my sister!) many people have asked me what I've 'done' to my legs, the answer is nothing. Physically speaking there is nothing wrong with my legs, they maybe short, stocky, rugby player legs, but technically they're fine. The problem is with my brain, it's sending bizzare and uncontrollable signals to my legs, thus creating some hilarious - but painful - walks! The walking stick helps and so I'm still moving. I mean, I'm moving like a constipated tortoise, but I am still moving, so that's a small victory... (Take that brain!)
My hope is that these tics and pains reduce to atleast a manageable level, perhaps gentle exercise, muscle rub and hot baths will help me to keep them under control? I'm certainly going to give it ago!
So if you see me about with a walking stick, my legs are fine, my brain is the problem!