As anyone within this static block of high pressure sitting over Europe is probably sick of hearing, it’s really really hot. The most consistently hot summer of my lifetime, rather than the three day heatwaves us Brits normally get frenzied over, it’s been over a month of 30°C plus (I know some of you from more exotic parts of the world think that’s nothing… but England is not built for it). I try not to be a complainer, and I love the blue sky and sunshine, but this heat is making this summer hard.
The worsening of MS (and other neurological) symptoms in heat is labelled Uhthoff’s syndrome, some are affected more than others, as ever I’m one of the lucky ones. I think my cut off is 23°C, above which my body seems to go into Low Battery Mode and just… stops… working…
- Vision – One of the first things to go. Blurred lines start appearing and everything goes hazy. This sometimes happens at work when the office warms up and I stick my head infront of my desk fan, but it’s harder to combat right now.
- Fatigue – My body feels like it’s made of lead. I am constantly ready for ‘a quick nap’ which turns into two hours. I’ve resorted to power naps in the disabled loo at work under a ten minute alarm. I have tried THREE times this week to listen to a podcast in bed and each time fallen asleep within minutes (it’s me, not the podcast, I can normally listen to Frank Skinner for hours). This week I was in bed by nine determined to read… I think I got as far as reaching over towards my book before giving up.
- Weakness – My right arm has morphed into the claw, my legs deadweights. The last few physio sessions I’ve had have been largely passive, my usual minimum level undercut by some way. My progress with FES and walking has disappeared, I just can’t move my feet; it’s so frustrating when earlier this year I’d really built up strength and have now lost it.
- Bladder urgency – Just when you need to drink more fluids, my bladder control is at a UTI level low. Beer gardens are definitely not an option.
- Clonus – The uncontrollable shaking of my legs has reached new heights. Even my normal remedies of stretching, massage, and alcohol aren’t working.
- Eating – Eating makes you hot. Hot food is like entering a sauna, and eating is now a physical challenge where I need an ice pack over my head after a meal. Hot drinks are gone, I can’t even stomach a tea in the morning, who am I?!
- Swollen feet – It’s a cruel catch that when I want to wear sandals the most, my feet inflate to red balloons, unrecognisable from those of an average 30 year old’s. The best remedy is to move them about, get them elevated, and cold. Practical in a wheelchair right.
- General appearance – Technically I’m being vain having swollen feet as a distinct point here, but seriously, self esteem feeds into general wellbeing so it matters. I’ve long bemoaned the migration of muscle from my legs to my arms, and am largely now at peace with the fact (let’s face it, without strong arms I’d be screwed), but must I keep parading them? When facing elevated fatigue and hand weakness, showering and washing my constantly sweaty hair is physically demanding. Getting my legs waxed turns into a mountainous task. I warned you it was vain.
I saw my neurologist for my MRI results a few weeks ago following my suspected relapse in June, there’s debatable new damage with two radiologists giving different opinions. So it could be worse. My neurologist’s conclusion: we can’t make an assessment until it cools down, so wait a few months and we’ll review then. Tick tock.