Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Thursday

Thermostat wars and MS

 

 It’s midwinter, and that means the thermostat wars are in full swing. In our house, it's one of life’s ups and downs. There may be a chill in the air, but our house is hot – way-ay too hot. And it’s turning up the heat on a daily debate.

He turns the heat up.

I turn it down. 

He turns it up. 

I turn it down.

 


You get the picture.

 I’ve explained the ins and outs of Uhthoff’s Syndrome, the medically proven perils of overheating that face those of us living with multiple sclerosis. I’ve even printed out scientific papers documenting this. I’m pretty sure I’m talking to a wall (like the wall on which our home thermostat is mounted).

 He cranks it up to the mid-70s (F). I dial it back to 68 (F). It’s endless.

 Some medical experts say 68 (F) is the ideal home temperature for someone with MS. That’s about 20 (C). 

I must admit: I’m growing a bit hot under the collar over it. (One might say it's getting out of control.)

 

Nope, I’m not nitpicking. This is a real thing.

 You could say I'm venting, and that may be true. Or possibly, I'm simply letting off steam. But MS heat intolerance is factual.

 In fact, before neurologists grew so fond of magnetic resonance imaging and lumbar punctures (spinal taps), they used to put patients into hot baths to diagnose multiple sclerosis. Those who experienced worsened symptoms in this steamy setting were tagged as MSers.

 Heat sensitivity is why MSers try not to sit near heating output vents in restaurants. It’s the reason we choose the beds farthest from the heating units in hotel rooms. It’s why we don’t find high-temperature baths, steamy saunas, and hot tubs to be particularly inviting. It also explains why we open kitchen windows while baking or cooking and why lots of us sleep with fans all year round.

 To a person with MS, a slight increase in body temperature can bring on a whole host of unpleasant symptoms. It’s a real nightmare.

 It may be difficult to help a non-MSer understand our symptoms, because these manifestations of MS frequently come and go. They are unpredictable and hard for even us to fathom sometimes.

 

We’re not making this stuff up.

 One of the curiosities of this crazy condition is the way it jumbles our own internal thermostats. We can feel hot when everyone else is cold. And vice versa. We may be peeling off sweaters, while others are reaching for their coats.

 Even so, a genuine elevation of heat (even a small one) sets the worst of MS in motion.

 


What happens when the house is too hot?

 For me (and many other MSers), my world begins to whirl (from vertigo). My vision blurs. My color perception dulls. Various body parts grow numb or pins-and-needles tingly. Fatigue attacks like a beast. Even my speech can be affected. (Some MSers experience tremors, absentmindedness or even incontinence as part of this well-known heat intolerance.)

 

It’s no fun.

 It can be a sub-zero winter day, and I’ll step outside for a moment of relief. When I cool off, the symptoms usually subside, as long as I don’t heat up again.

 

What about cold temperatures?

 Now don’t get me started about what extreme cold temperatures (or sudden temperature shifts in either direction) do to the MSer. Those days of uber-frosty air conditioning are coming, along with their own set of related MS symptoms flare-ups.

 Meanwhile, I think I’ll go check that thermostat again.

 

Related items:

·        Cooking with MS: It's all about timing

·        Life with MS: Sometimes you feel like toasting, but other times you're just toast.

·        My shower looks like a crime scene

·        Remember hot showers? Not with MS.

·        Remember when bathing didn’t make you blind?

·        With MS, a hot flash may not be a hot flash at all.

 

 Image/s: public domain photo/s

 

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