Monday 1 June 2020

if I surround myself with positive things...

It was World MS Day on Saturday.

I woke up at about 03:30 to find my whole lower body in spasm. from the muscles of my lower stomach down through my legs to my feet. I've been getting cramps in my legs for some time, but this is different, it's not a sudden clenching of the muscles but something that lasts for longer. It's not as intensely painful, but it is uncomfortable and has a halo effect that lingers in the muscles for some hours afterwards, as a deep-set stiffness in the muscles.

As I often do when this happens, I got up and walked very stiffly to the bathroom. This is partly to ease the muscles off, but also I'm now pretty entrenched in the habit of emptying my unreliable bladder when it is convenient. I catheterise myself every night before bed to ensure I sleep with a completely empty bladder and take a drug every day to help resist bladder urge, but as I was awake it was a way to kill two birds with one stone. It was already pretty light outside and the dawn chorus was really starting to get underway. It was really quite a lovely.

That done, I staggered back to the bedroom to try to get some more sleep, popping an ibuprofen along the way in the hopes of waking up with a bit less muscle pain.

This is my new routine.

We already know that the problems with my bladder are related to my MS: my brain isn't able to reliably empty my bladder completely, and I will often get the urge to pee even if I've only just been, whether my bladder is empty or not. It's likely that the muscle spasms in my lower body are MS-related too. There are drugs you can take to chemically relax these muscles and to try and get a good night's sleep, but I'm reluctant to take them. 

After all, I'm a runner.

Running keeps me sane. This was true before the lockdown, and it's doubly true now. My ability to get out of the house and clear my head on a run is precious to me. I'm probably getting slower as I get older, but the speed I run is not nearly as important to me as my ability to run at all. As things stand, I don't want to compromise the ability of my legs to carry me and so, if the spasms are the price I need to pay if I want to keep running... well, then it's a cost I'm prepared to pay.

Mind you, I have been doing quite a lot of running recently: I covered 145 miles in May, almost all of it side-by-side with my wife, who hasn't run as far in a month, even when she was training for her marathons. Quite a lot of this mileage has been slow, on stiff legs. Where the speed of my wife used to be our limiting factor, these days, it's more likely that she's waiting for me. It's not that I can't run fast any more - I'm doing at least one set of intervals a week where I try to let the brakes off - it's just that I'm really just happy to be moving at all; delighted just to get out of the house in this beautiful weather and to enjoy the fresh air and the flourishing spring around us.

On Saturday, after another couple of hours of sleep, I got up and went out for a 5km run. It wasn't fast and it wasn't pretty, but I like to think that it helped to stretch some of that stiffness out of my legs. Maybe, maybe not. Either way, it definitely made me feel better.

I was diagnosed with MS in 2009 after 4 years of symptoms. It's an incurable condition with uncertain outcomes, so it's a frightening thing to be labelled with. Maybe I'm one of the lucky ones, but I do firmly believe that MS only has as much control of your life as you allow it.

As this film from World MS day a few years ago shows beautifully, a diagnosis with multiple sclerosis does not have to mean the end. Life is what you make of it, and other cliches.

I think I'm much stronger and kinder now than I was in 2009, and I thank MS for that.

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