Two Years of Falling Down

For two reasons over the last few days I’ve been thinking quite a bit about my leg tics and their impact on my mobility.

The first is that there’ve been several occasions recently when my tics have intensified even more than usual, with my legs moving constantly and feeling extremely uncomfortable. Having an unpleasant sensation like this isn’t unusual, but normally I feel it in my spine.

Because I mostly use a wheelchair to get about, these episodes haven’t really affected how mobile I am. But I do find it hard to concentrate on anything else when I’m uncomfortable and my legs are wiggling about chaotically.

The second reason why I’ve been reflecting on my mobility is because last Monday was the second anniversary of my last journey on foot alone.

That evening two years ago I went for a quick drink with Fat Sister, King Russell and some other friends. I decided I wanted to head home so I left them in the pub. The short journey took me at least five times longer than it should’ve because the tics in my knees meant I kept dropping to the ground. My mobility had been deteriorating for a while and tics in my ankles, feet, trunk and knees gave me a chaotic, unpredictable gait. It was this trip home from the pub that made me begin to face up to how difficult things had really become.

These tics have changed very little in the last two years but a number of practical interventions (including Kneepads, grab rails, hand rails, strategically placed chairs and most crucially, my wheelchair) have enabled me to remain as active and independent as possible.

I don’t dwell too much on how things have changed, but as I’ve described before I do really miss going for walks and sometimes let myself reminisce about enjoyable strolls.

I’m optimistic that at some point my mobility will improve – tics do change over time and I hope that in the future my leg tics will have less impact. But sometimes it’s the possibility of improvement that I find hardest to handle.

The other day I was overtaken by waves of frustration and impatience that came completely out of the blue. I’d been swimming the night before and I’d been practising walking in the hydrotherapy pool – I was curious to see how many functional steps I could take while safely supported by the water. I counted only steps that wouldn’t have led to me falling down if I’d been on dry land. I kept trying over and over again but the most I could manage in a row was five. This hadn’t made me feel bad at the time – in fact I’d quite enjoyed trying.

But thinking about it the next day I felt upset and exasperated because I couldn’t make myself take normal steps even though my legs are physically strong and capable of walking. I knew this was completely irrational but for a few moments I found it difficult to break away from the feeling that I was letting myself down and just not trying hard enough.

It didn’t take long for me to reason myself out of these negative thoughts and to recall that the other side of that frustration is hope. My legs are fine, so as soon as my brain gets on board and the tics reduce, my mobility should improve.

Until this happens though, I’m going to concentrate on getting on with life and taking all the steps I can to stay fit, safe and independent. Even if each step is a bit wobbly for now.

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