Global warming is in full effect as we near the end of summer. The second summer of the pandemic. The second summer since my Multiple Sclerosis diagnosis. Oh, and the summer that I will turn 52, and due to yet another ailment must wear compression socks… and attempt to find cute summer sandals/shoes that will accommodate my custom orthotics… and figure out how to wear shorts with compression socks, which are basically like socks on steroids. We need a designer to overhaul these monsters. Every pair is thick with frightening colors or patterns, not too breathable, shiny, and just not fashionable. All this with rising temperatures day in and day out led me to the title of this post.
But MS-content was not created by a British writer named Shakespeare, not sprinkled with sonnets or odes. It is brought to me, and many other MS warriors, by Uthoff’s Syndrome, named for German professor of ophthalmology Wilhelm Uhthoff. When I first heard the name, I thought it sounded like the title contagion of an action movie starring Arnold Schwarzenegger (even though he’s Austrian and not German, but this is a movie in my mind, so fuck it). I was not too far off. If you have MS — or any other neurological or demyelinating disease — Uthoff’s Syndrome is the temporary worsening of MS symptoms with the slightest increase in core body temperature. This can be internal, like a fever or menopause, or external, like exercise, hot weather, or sunbathing.
Wait, what? I can no longer enjoy cocktails by the pool unless it’s in the mid-70s (mid 20s if you use Celsius). I am a California girl, born and raised. I grew up in the 1970s and 1980s, when SPF wasn’t really a thing and usually just a suggestion. I used to lay out using Hawaiian Tropic suntan oil… SPF 2! Yep, 2. Basically I sauteed myself rather than tanned. But at least it had an SPF rating. Remember using Baby Oil or Crisco? I know you had that friend who laid out slathered in Crisco and doused their luscious locks in Sun In (maybe you were that friend). I know better now, but I still like to lay on the beach or at the pool and relax (with or without a cocktail) and unwind. Now, if I get even a tad bit hot, I experience fatigue, pain, balance issues, overall body weakness, bladder issues, sensory issues, and sometimes blurred vision and cognitive issues. I get drunk off the sun without the pleasure of an umbrella in my drink.
And just like a day of drinking, the aftermath is a hangover — a heat hangover that comes with fatigue, weakness, hot flashes, headaches, loss of coordination, inability to hold my pee (lovely), and numbness in my feet. This even happens if the shower is too hot. I was so overheated one time that I laid on the bathroom floor for an hour, and my husband had to help me up. Was that in our vows?
It’s just a temporary sensation that will eventually go away once your body temperature regulates itself, but that doesn’t make it any easier to manage. You can visit the National Multiple Sclerosis Society website for information on heat and temperature sensitivity. They even have a page for cooling equipment information and a national vendor list.
Here are my top 6 things to help you stay cool. (Disclaimer: I am not promoting any specific brand or product. I am just mentioning what has worked for me. Feel free to add your tips and products in the comments.):
- Embrace air conditioning. Yes, running the a/c can be expensive, but check with your power company. PG&E offers a Medical Baseline Program/Allowance for residential customers who depend on power for certain medical needs, such as folks with Multiple Sclerosis (MS) with additional heating and cooling needs. Here’s more info.
- Get a new wardrobe. Who doesn’t like to get new clothes? Well, because of my Antiphospholipid Lipid Syndrome, I have to wear compression socks, which can increase my body temperature and make it hard for me to wear shorts without looking odd or like one of the girls from Three’s Company (yeah, old reference but the girls wore pantyhose with shorts all the time back in the day). So, it’s time to try cotton leggings, moisture wicking clothing, long flowing skirts, maxi dresses, and linen pants. They can be cute and cool all at the same time!
- Invest in cooling products. They make all sorts of stuff now, and some of them are seamless and fashionable: cooling vests, neck wraps, neck or shoulder wraps, neck fans, and even just a good old ice pack. I also run fans a lot to keep cool air circulating. And believe me, a hot morning with the hair dryer, hot rollers, and curling irons after a shower would take me down if it weren’t for my oscillating fan. We’re also planning to install a ceiling fan in my bathroom.
- Rediscover your love for popsicles. They aren’t just for kids, and I love ‘em all — from the over-sugared Otter Pops (ah, memories of my youth) to healthy fruit-based pops, and my new favorites with alcohol. Just don’t overdo it. “Hello, my name is Tina and I had too many vodka pops!”
- Exercise when it’s cool outside. I still see crazy people running in the afternoon when the sun is blazing and the temperature is high. Insane. Morning, evening, and try some water aerobics if you can find a cool pool.
- Jump in a cool bubble bath. Sometimes I just need a cool (not cold) shower or soak when I’m having a hard time reducing my body temperature. And I even add bubbles to be fancy and put those cool cucumbers on my eyes for an MS spa day!
The summer of my MS-content is ending, and soon everything will be pumpkin-flavored (yuck, sorry not my fave), the leaves will change color, and the temperatures will begin to drop. But don’t get too excited, my fellow Shufflers. MS won’t let us rest because many of us not only suffer with the heat. The cold weather increases other symptoms such as spasticity. Stay tuned for the winter of my MS-content…
Tina
Myelin Shuffle 