I can usually get by without having to mention my “Mild” MS but when the heat comes along i start to panic for no reason because im usually ok in the end anyway.
Does anyone else get anxiety on the days coming up to a very hot day? I cant seem to shake it off, it happens every year.
Its mostly due to work and the possibility of not being in control of where I can be to cool off, or the explanation that would be required and the reply you might get back/ reactions of some people.
one example : An outside training day group activity has landed right on the hottest day of the year and it gives me anxiety just thinking about it…The first question that will pop up “Shall we just work through lunch so we can get off early” …I’d love to but I need the break! … but I don’t fancy letting down 10 other people!
Will we mostly be doing the activity first off in the morning when it’s cooler? Who knows!
Just one or 2 days a year when it’s extra hot that I don’t want to be the tractor and rather be the trailer, it causes me immense anxiety thinking about getting in a situation where I have to explain why.
In short, you’re not alone. Us MS-ers face extra heat with dread and with good reason. Extra precautions need to be taken.
I’m just coming out a nasty bout of cellulitis during which my temperature spiked to 40+ and I just shut down. A cognitive void, couldn’t turn over let alone get myself out of bed and complete urinary incontinence until the temperature came down again. Normally I am mobile with a stick, continent and like to think my brain is as quick as ever.
My recipe for life is to stop apologising for oneself. No need to get anxious or apologetic for something you can barely control and for whom the consequences are far more serious than for the people around you.
I feel much more hampered and limited by my MS in hot weather than at any other time. The gap between what I can do and what normal people can do just feels a whole lot wider than usual and that is not a good feeling. I find it uncomfortable, frustrating and sometimes difficult to manage socially, even though I don’t work for a living any more and so do not have that particular issue to deal with and even though all my circle knows I have MS. So yes, I get it. I wish that life were a bit easier for you.
Yeah, I can very much relate. The last thing I’d want to do is be outside. To help people understand how heat affects you, tell them that in the olden days, before we had things like MRI scanners, one way they’d diagnose was to give you a hot bath and see how awful you felt afterwards. Unfortunately I learnt that lesson the hard way!
My top tip for keeping cool is to have a cold shower. Get the shower head, bend the wrist back on one arm so the veins are exposed, then move the shower head up and down the inside of your forearm. Do this on each arm for a few minutes. It cools the blood down, which then gets pumped round the rest of your body, keeping you cool. The effect can last for a few hours. It can send your blood pressure high though, so be wary of doing it if that’s an issue.
I can not cope with extremes.When its too hot i feel ill and the humidity wipes me out,i an hardly function at all.Then,when its extremely cold that gets me too.I have been like that for many years now,so annoying.
My survival recipe in this hot weather and in conjunction with an infection which has made my temperature spike, has been to use a cold pack: The sort of gel-based pouch kept in the freezer and used for treatment of pulled muscles and sprains. They stay somewhat flexible even when frozen.
Applied to the back of the neck / base of the skull in particular, but also to forehead (not too much or you get an ice cream headache!), temples, top of head and any other overheated parts. Basically cooling down your brain and cervical spinal cord - the places where us MS-ers get lesions and temperature sensitivity. Obviously the whole body is subject to high temperature but the brain is where the biggest impact can be felt - if your brain is cool, you can function again.