Your post has me think how with climate change is, many countries are having longer summers than usual, mine included (where temperatures can get as high as 50C but usually would hover in 30s to 40s in summer and can get as low as 12C in our "winter" but nowadays would hover in the mid-20s). Your post is also having me think how environmentalism is not centering the experiences of disabled and chronically ill people who are directly impacted.
Once again your article is very illuminating on MS in general , but particularly enlightening on the effect of level of heat upon those suffering its attack, and the value of doing one's own research into different aspects of that affliction. A Headingley garden certainly seems a much better environment than Mediterranean or Tropical regions ; the latter can be especially enervating even for those who regularly frequent such solar abundant areas - twenty degrees above Northern UK summer temperatures for example ........ Having personally undergone MRI scans I can understand your feelings about the peculiarity and discomfort of their environment. Cold feet too - in UK winter time bedrooms ! Bernard
Interesting angle, Jane. Loved the detail about the hot bath test of yore. If you couldn't get out of the bath after 15 minutes, were you then burnt as a witch? Shows how far we've come. Can you imagine the world of the person with MS back then? I wonder if people will look back at lumbar punctures as a barbaric practice in 40 years' time? Certainly felt barbaric at the time. I'd rather have electrodes attached to my testicles than go through the aftermath of that again. Anyhow, cold no, but heat, yes. As soon as it gets above 25, particularly if it's humid, I'm a mess. Fortunately, as a resident of the north of England, I'm usually on holiday in those circumstances and don't need to do much.
Oh god now I’m imagining the MS nurses getting the stake ready to burn the MS witch!
I was lucky enough to escape lumbar puncture, it sounds awful.
Sounds like your strategy for dealing with the heat is to live in the North of England 🤣. That’s where I am too but I still need my preventive measures for the few days of heat!
Thank you for your entertaining comments Andy 😊
This was really interesting and I am incredibly shocked to learn that it was never mentioned as a symptom when you were diagnosed. Thank goodness for the internet and readily available reading so that you could do your own research and thank goodness for the state of the summers we get here!
I count myself lucky to be in the minority of PwMS who do not have heat sensitivity - quite handy given the country I live in - but oof the cold. Hands and feet are iceblocks, particularly at night. I've amassed a snappy sock collection and an array of stylish gloves, plus a hardcore, windproof motorcycling jacket (with optional battery powered heating packs). The bath test sounds horrific, and also like it would have missed my diagnosis entirely, I'm very fond of a geothermal hot pool when in NZ!
Love the sound of the jacket with heating packs! Is that for actual motorcycling or just general use!? Not being able to get warm is a beast too. In theory the geothermal pool sounds lovely but I think I might have to give it a miss!
it's an actual jacket for motorcyclists! no wind can get through it. quite impressive. And the NZ geothermals don't sound like they'd be for you, but there's incredible things to see because of the same geothermal activity that makes the hot pools. Recommend if you ever get down to this side of the globe
That's interesting...my second hand experience is quite different - the close friend I support who has had MS for forty years loves the heat and would happily lie in her hot tub for hours. She doesn't feel the cold either - unlike me. I am a dinosaur...neither hot or cold suit me, and I have no temperature regulator 🙄.
Now that is interesting, I guess the stats say between 60 and 80 per cent of people with MS are affected, so your friend has been lucky in that respect! Thank you for commenting Janey 😊
She has kept on her feet all these years, tried every treatment going, had a marriage, three kids, career or two...but is struggling now with the long-term effects of all the damage done both by the MS and it's various treatments
We have a thirty year friendship, and she moved here three years ago, as I (we) can support her to live independently, rather than 'taking away her dogs and shoving her in a home'. It can be tricky, but I do my best to manage what she needs - second-guessing sometimes .
We walk together most days, I make her flapjacks, and read books aloud on WhatsApp record for her sleep problems. That one is a win-win, as I adore reading aloud 😊
It can be hard on both sides to navigate the inevitable changes in relationships that come from living with a long term condition. It sounds like the two of you are working out something that can work for you both.
Your post has me think how with climate change is, many countries are having longer summers than usual, mine included (where temperatures can get as high as 50C but usually would hover in 30s to 40s in summer and can get as low as 12C in our "winter" but nowadays would hover in the mid-20s). Your post is also having me think how environmentalism is not centering the experiences of disabled and chronically ill people who are directly impacted.
That’s a really good point Reema, and not one I’ve seen widely discussed, thank you for raising it 😊
Once again your article is very illuminating on MS in general , but particularly enlightening on the effect of level of heat upon those suffering its attack, and the value of doing one's own research into different aspects of that affliction. A Headingley garden certainly seems a much better environment than Mediterranean or Tropical regions ; the latter can be especially enervating even for those who regularly frequent such solar abundant areas - twenty degrees above Northern UK summer temperatures for example ........ Having personally undergone MRI scans I can understand your feelings about the peculiarity and discomfort of their environment. Cold feet too - in UK winter time bedrooms ! Bernard
Thanks Bernard. Yes I think I’ll stick with the North of England for now! 🤣
Interesting angle, Jane. Loved the detail about the hot bath test of yore. If you couldn't get out of the bath after 15 minutes, were you then burnt as a witch? Shows how far we've come. Can you imagine the world of the person with MS back then? I wonder if people will look back at lumbar punctures as a barbaric practice in 40 years' time? Certainly felt barbaric at the time. I'd rather have electrodes attached to my testicles than go through the aftermath of that again. Anyhow, cold no, but heat, yes. As soon as it gets above 25, particularly if it's humid, I'm a mess. Fortunately, as a resident of the north of England, I'm usually on holiday in those circumstances and don't need to do much.
Oh god now I’m imagining the MS nurses getting the stake ready to burn the MS witch!
I was lucky enough to escape lumbar puncture, it sounds awful.
Sounds like your strategy for dealing with the heat is to live in the North of England 🤣. That’s where I am too but I still need my preventive measures for the few days of heat!
Thank you for your entertaining comments Andy 😊
This was really interesting and I am incredibly shocked to learn that it was never mentioned as a symptom when you were diagnosed. Thank goodness for the internet and readily available reading so that you could do your own research and thank goodness for the state of the summers we get here!
Yes as you say thank goodness for the internet etc! And our summers 🤔. Glad you found it interesting 😊
I count myself lucky to be in the minority of PwMS who do not have heat sensitivity - quite handy given the country I live in - but oof the cold. Hands and feet are iceblocks, particularly at night. I've amassed a snappy sock collection and an array of stylish gloves, plus a hardcore, windproof motorcycling jacket (with optional battery powered heating packs). The bath test sounds horrific, and also like it would have missed my diagnosis entirely, I'm very fond of a geothermal hot pool when in NZ!
Love the sound of the jacket with heating packs! Is that for actual motorcycling or just general use!? Not being able to get warm is a beast too. In theory the geothermal pool sounds lovely but I think I might have to give it a miss!
it's an actual jacket for motorcyclists! no wind can get through it. quite impressive. And the NZ geothermals don't sound like they'd be for you, but there's incredible things to see because of the same geothermal activity that makes the hot pools. Recommend if you ever get down to this side of the globe
Impressive! Appreciate the recommendation too Eliza, sounds awesome enough without getting in the pools!
That's interesting...my second hand experience is quite different - the close friend I support who has had MS for forty years loves the heat and would happily lie in her hot tub for hours. She doesn't feel the cold either - unlike me. I am a dinosaur...neither hot or cold suit me, and I have no temperature regulator 🙄.
Now that is interesting, I guess the stats say between 60 and 80 per cent of people with MS are affected, so your friend has been lucky in that respect! Thank you for commenting Janey 😊
She has kept on her feet all these years, tried every treatment going, had a marriage, three kids, career or two...but is struggling now with the long-term effects of all the damage done both by the MS and it's various treatments
I imagine she’s very glad to have your support through it all 💕
We have a thirty year friendship, and she moved here three years ago, as I (we) can support her to live independently, rather than 'taking away her dogs and shoving her in a home'. It can be tricky, but I do my best to manage what she needs - second-guessing sometimes .
We walk together most days, I make her flapjacks, and read books aloud on WhatsApp record for her sleep problems. That one is a win-win, as I adore reading aloud 😊
It can be hard on both sides to navigate the inevitable changes in relationships that come from living with a long term condition. It sounds like the two of you are working out something that can work for you both.