I’m feeling tired at the moment. Lots of people with MS find that heat triggers their symptoms, with some so badly affected that they have to wear cooling vests to try and keep their core body temperature down. Funnily enough, it’s never really bothered me. I’m sometimes troubled by a loss in sensation in my arms below the shoulders when it’s cold, but heat seems to be fine. In fact, I’m one of those masochistic runners who secretly really enjoy going out when it’s really hot and slogging my way through a really sweaty run. In my office, people were already complaining about the heat on Monday morning, but I’ve spent the last six weeks of the English summer cycling to work through monsoon rains, so I’m not going to start complaining now that the sun has finally started shining.
I am, however, feeling a bit tired. Fatigued, even. Lots of people feel lethargic when it gets hot, but MS fatigue is different. It’s hard to explain, but MS-related fatigue feels quite different to the kind of tiredness you get when you’ve not been sleeping enough or when you’ve been out running or something – that’s what I’d call a good, honest kind of tiredness and MS fatigue is an altogether different, much sneakier animal. It’s not the sleepiness you get when you haven’t slept well, but it’s fatigue that you experience physically that takes a hold of your body and makes it feel like you’re wading through treacle. Lots of people use Christine Miserandino’s spoon theory to describe how it feels
That’s great, but it seems to imply that there’s some kind of logic in the toll that different activities take on your body and on your energy levels. For me, this just isn’t true. How can it be true when I can run a marathon and feel fine, but other times, my fatigue can be triggered by a walk to the shops? I wish it was predictable and therefore manageable, but it just isn’t.
When this fatigue begins, I start to feel it in a tightness across my shoulders, followed closely by a sense of weakness in my arms and maybe some generalised numbness; I can feel my body start to almost tremble as I fight against the growing tiredness. Often, before I really know what’s happening, it’s like a switch has been flicked and all my power is draining away and all I can really do is get myself to bed and write the day off. I was in bed at 21:30 the other night, and on some days, more than eight hours sleep just doesn’t seem to be enough. Today, I found myself starting to struggle at my desk after about 3pm.
Naturally, because I refuse to let my MS rule my life, on Friday evening I’ll be heading over to Catton Park to join my team of 7 taking part in the Thunder Run… a 24 hour relay where I can expect to run at least three 10km laps between noon on Saturday and noon on Sunday, including at least one lap after dark. I probably won’t get much sleep and will likely run the best part of a marathon, but I’m really looking forward to it. I might even do a parkrun before we get started.
Fuck you MS.
Six by Nico: Best of 2018
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