My first heat wave with MS flare-ups

“This is the most beautiful beach I’ve ever seen!”

Well, I always told everyone that I really don’t have any issues with the hot season. I was active and I kinda liked the feeling of constant sweating and no need of any jackets throughout the night.
Last winter I realized that I have difficulties with freezing: My skin burns terribly as somebody tries to rip off my skin, especially on my legs and arms. If I’d take hot and cold showers, I wouldn’t feel any sensory issues. I was pretty relieved because I know that most pwMS don’t tolerate the warm season and are forced to stay indoors.
As soon as this heat wave started, I noticed that my right leg became slow, weak and then: Fatigue.
Until now it wasn’t a big issue either. I didn’t feel like suffering from fatigue much, just if I really overdid it – especially mentally.
And guys, it’s not just feeling tired. Please stop saying “yeah, the heat makes me tired too!” I hear you and I know what you mean, but trust me, this is not the same.
I constantly feel like I got a hammer punched right on my forehead while someone is showering my brain (not in a comfy way) and planted ants under my skullcap. I can’t focus and I feel literally dumb – in every talk that lasts longer then 2 minutes I’d be spaced out and even more tired just by trying to listen – sometimes even building whole sentences feels impossible – or finding and remembering the right words.
I do suffer from sleep issues for a long time (falling asleep or back to sleep – I always wake up way too early. I have longer periods with 4h night sleep max).
Now I do sleep 10h and feel like haven’t slept at all. The only advantage is that I do sleep and fall asleep so quickly and I’m even able to take naps – which was straight-up impossible for years. Think that this “new” ability might be beneficial im some ways.
Besides that every single MS-related symptom that I ever had and that I have forgotten in the mean-time knocked on my door again. Some things are kinda funny (like numb teeth or constant eye lid blinking) but just because I compare it to funny and less-threatening things. F.i. I do have a strange buzzing all over my skin and that reminds me of a vibrating cell-phone or the experience of touching an electronic item being charged and feeling its leakage current. You get super creative in trying to categorize, comprehend and really describe your symptoms. That can be fun but actually I do feel really scared.
So I must admit now that I have an issue tolerating heat as well – as it seems obviously – and I just pray every day for a cooler period.
I’m too tired to be angry or upset but seeing all the other people spending their vacation outside and having fun traveling, partying, being at the beach etc doesn’t leave me cold – what a saying – I wish it would in several ways 😉
Besides all the exhaustion, the fact that really makes me think is how to survive my final exams next year during the exact time: summer peak.
The rooms aren’t climatized at all. Besides the theoretical exams I need to be in a laboratory, working with burners and harmful gases in long clothes and a lab coat. I tried to fight for A/Cs before my diagnosis but it didn’t work. So how should I manage it if my highest daily achievement now is doing grocery shopping? It seems to be nearly impossible, but I’ll try my best.
Besides all the negative parts I discovered and developed some hacks to make it at least bearable to stay at home: always a wet and cold towel on my neck, running around with a spray bottle moistening my hair and skin and the absolute best one: sleeping with a wet towel on my legs – it really works! And swimming is fun although, the cold water makes my brain work at least for a moment.
Nevertheless, that whole thing sucks and I feel being left behind once again!
Also I’m scared of losing and overstraining my close relationships because it’s like I’m always the one who isn’t well, but upset, sick and in need of nice and calming words. I wouldn’t wonder if it seems like I’m sinking into self-pity – but the struggle is real.

I’m definitely open for more tips and advice because I still do feel pretty new to this kind of issue.

Stay hydrated,
M

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