The duplicity of MS

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Summer has finally arrived in Ireland. After what seemed a prolonged autumn and/or winter, we saw summer marching in as if tomorrow might never come.

Seeing we are a breed of people who can endlessly talk about the weather, we find fault in it as soon as it happens, only to spin more hours of talking about it.

One of the Irish newspapers printed an hour-by-hour event guide to make the most of it… after all, this is a four-seasons-in-one-day country… just in case. But not this time.

Headlines like ‘Scorchio is staying put for the weekend’ and “We’ll go from hot to warm weather” fill me with dread. Please don’t get me wrong, I like the sun as much as anyone else; it’s great for catching vitamin D, for meeting up with friends on the beach and for long drives with car windows open as if you’re in a convertible (a girl can dream, right?)

But this is Ireland. The land of saints and scholars where you can always expect the unexpected. And it was unexpected. Summer not only arrived with a bang, it arrived in the form of a heatwave two days before my 40th birthday on Tuesday. Having plans in my mind of heading west to Yeats Country (County Sligo) the following day, I almost literally saw them melt before my eyes.

Not only was I feeling kind of funny because of the new figure fronting my age for the next 9 years, and being unwell with trigeminal neuralgia for so long this year, I was hoping to get out for a few days and recharge. And I did. The MS-way. Sure… did I not tell you life with MS is funny at the best of times?

Funny. And bloody difficult if you have to deal with heat insensitivity in a country famous for its long-lasting rain and lack of sunshine. You probably see this coming, can’t you? Right… Heatwave… Ireland… Heat insensitivity… 40th birthday… Badly needed break…

It turned out to be a great trip, too short by all means and filled with too much sleep after every little event; with neuropathic pains and an energy level that surely has its origins in hell, but I enjoyed myself. The break was what I needed, but aargh… that heatwave! Not only did it drain me physically, I found it hard calculating what needed to be said and done as my thinking went at the pace of a turtle on Valium.

People with MS will have heard of Uthoff’s Phenomenon (or Symptom; Sign). It is described as “worsening of neurologic symptoms in multiple sclerosis (MS) and other neurological, demyelinating conditions when the body gets overheated from hot weather, exercise, fever, or saunas and hot tubs. It is possibly due to the effect of increased temperature on nerve conduction.

In my case, I feel energy run through my body to my feet into the ground, and tremors in my hands pop up every time I take a hot shower or eat hot or spicy food. A rise in body temperature of only 0.5°C can lead to an increase of MS symptoms and only rest and cooler temperatures can help get me back to my previous self. But this is when MS becomes a duplicity trap.

For example, it is thought that people with MS lack Vitamin D. It can be added to your list of bodily functions by being exposed to sunlight. You probably also see this coming… How do you get sunlight exposure… exactly, by going outside, catching as much sunshine as possible. However, the sun radiates heat, right?

Similar issue: oftentimes my body feels cold to the bone. Wear lots of clothes, you think? No, because wearing lots of it increases neuropathic pain in my limbs. Take a hot shower? No… It makes me stumble out of the bathroom while having tremors in my hands, and I need to lie down for a good while before I am anything like before.

Most of all, I could sleep while standing up after a hot bath or shower because it depletes my energy in record speed (putting probable patients in hot baths was the old-fashioned way of diagnosing multiple sclerosis as it happens). So again, heat is good for one thing (reducing freezing body temperatures) but bad for another (MS).

Same goes for eating or drinking hot food and/or fluids. Warm shops, restaurants, houses of friends and family and other heat-inducing surroundings.

Exercise. Energy down to a bare minimum. Recharging, if at all possible, very hard to achieve. Nauseous and a feeling of fainting about to happen.

I could go on with listing everything that happens when an MS patient has heat intolerance but I won’t. People who live with this, need their surroundings to understand what happens to them if/when the heating is on too high, why they cannot exercise like healthy people and why they need to stay away from heatwaves, wherever they are.

Ireland became Costa del Hibernia. It’s an all or nothing affair. We either get rain or none at all… 30°C in Ireland is possible and I foresee myself shouting for autumn and winter to last 365 days a year every single day until it really is autumn and winter. I’ll allow 1 day of heatwaves during leap years… Fair, or not?

©Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2011-2013. Unauthorised use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me with appropriate and specific direction to the original content.

3 thoughts on “The duplicity of MS

  1. Billie the healthiest of us struggle to cope. After officiating athletics for several hours yesterday morning I felt dreadful until, in desperation, I ran a cold bath whereby my body temperature returned to normal. But you’ve gotta laugh at the Irish with their milk-bottle skins trying to acquire a bronzed tan :-)

    1. Oh I know Roy! It’s been extremely warm (for far too long) in Ireland and I understand healthy people have been struggling also. I am starting to feel like a piece of Kentucky Fried Chicken at this stage :)

      It’s just, that on top of normal MS symptoms, Uhthoff’s symptoms really make people with MS live in discomfort. If this heatwave continues for another week, I might have to go to my GP and get steroid treatment because my nerve pain in my left side is through the roof, eye and facial pain increased also and my tiredness seems to go for a new world record. I don’t want to take away from other people’s difficulties with this kind of weather, but it is a reality that is making me wish for Alaska-style temperatures.

      I used to be able to stand some kind of level of high temperatures before MS came knocking on my door, but now anything above 17°C is making me feel dreadful. Hence the lack of blog posts since July 1st :)

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