The heat is really killing me this year. Ok, not really killing me. The heat doesn’t actually make my MS worse, and it’s highly unlikely my MS will kill me. The heat just exacerbates the underlying symptoms. Basically, the electrical impulses travelling along your central nervous system are slower/more likely to dissipate when your body temperature is elevated. This is the case for everyone, but combine that with damaged myelin and nerves and ta-da! Many of my dormant symptoms, and some new ones, come out to play. Just to make sure I don’t forget about them. Ha ha, such fun.
Learn more about heat intolerance and MS.
The most disabling symptom for me is fatigue. Like, a couple of weeks ago, I had too many blankets on the bed and when I woke up I was hot. Now normally, I’m completely mobile and have good strength, clear speech and excellent cognition. The only symptoms I really get regularly when I’m not fatigued are tingling in my feet and lower legs, and burning in my left foot. I do have other things come and go – twitches, weakness in my left hand, memory difficulties, for a few months I had this weird symptom where I couldn’t do basic arithmetic! That was fun when splitting the bill at restaurants. I was normally the person who sorted that out. Glad that went away again. But really it’s mostly all minor stuff I can deal with.
However, that morning when I woke up too hot under my doona, I could not sit up. I could barely move my arms. My legs felt like they weighed a tonne. I could hardly keep my eyelids open and everything seemed foggy and slow. Sita came in to wake me up. I turned my head slowly and looked up at her – focusing was tough and blinking was hard! my eyelids were so heavy! – and told her I was fatigued. My speech was slurred; I’m surprised she could lipread me. But she knows the signs of fatigue. I asked her to pull me into a sitting position and bring me a glass of cold water. After she did, I started to cool down, and 20 mins later I was feeling better. It took me 40 mins to get out of bed.
I’m lucky to work in a place with flexible working hours so I can start and finish late, which is what I did that day. However, it’s only early Spring and I’m worried about how I’m going to manage in Summer. The heat intolerance is definitely worse this year. Once I get to work I’m ok – I’m in air con. But getting there, and also that first half hour after I get there and have to cool down… it’s getting harder. I can manage, but I worry. I’m the one bringing home the not-bacon, so to speak. I try not to stress but my family relies on me.
I’m reaching out to my Regional Service Coordinator with MS Qld for advice and I’ve joined a support group. Slowly MS is becoming a bigger part of my life, which I’m not really keen on! But I’m trying to accept the inevitable.
If only it wasn’t so darned unpredictable! But then again, if it wasn’t, then I probably couldn’t recover from the fatigue in 40 mins, either. So you know. Silver lining, I guess?