The heat is on: cue the music, you know you want to sing along.
So, heat intolerance is common in MS patients and effects us all differently. The scientific explanation is heavy, so don't even ask...
Ok, since you asked, because of the lesions (in my brain and on my spine),
heat causes my CNS to slow down or speed up and misfire.
The lesion areas interrupt neurological signals, so it's a hot mess.
Because of this, I don't really sweat--which is weird.
Weird like I don't even wear deodorant anymore because
nothing happens in the deep recesses of my arms.
Word.
Sometimes a girl just wants to sweat...but she can't
Our bodies cool down by sweating--moisture comes off of us and evaporates around us to regulate our temperature. MS, on the other hand, causes extreme sensitivity where even a 1/4 of a degree rise in my core temperature can flare symptoms.
My nervous system can't send those signals quickly enough and I start to overheat.
For me, due to some, uh, "field research", I start to overheat around 87-ish degrees in my beloved desert home. Visiting humid places is exponentially worse.
Heat causes the lesions to get aggravated, causing a pseudo-exacerbation.
This means that all the symptoms from prior flares/relapses come again! It's like a fun trip down memory lane with your lesions. Kidding, it's not fun...at all.
I feel extraordinarily heavy and weak (there really aren't words to describe what this feels like).
The fatigue is almost debilitating.
I may get facial numbness and said face is usually 50 shades of red.
It's draining and scary, all at the same time.
Oh, and the cog-fog.
I'm a brainy kind of gal, it's the core of my identity.
What I lack in beauty, I totally compensate for in brain power & stunning personality.
Yeah, heat makes me stupid.
My brain slows down, as does my mouth.
This might be troubling, or relieving, for those who know me well.
I have a hard time forming a coherent thought. It's embarrassing.
The good news is I can recover fairly quickly.
I have to either submerge myself in water or go inside and start drinking cool water/shower to drop my temperature.
It makes me so very tired that a nap is essential, which is cool I like naps!
It will slow me down, stop me in my tracks and ruin my day...so I have to be careful.
I manage really well at home in my highly-controlled environment, travel, on the other hand, is hard.
Home base
At home?
I have to exercise daily--it's a must with MS.
I wake up early, between 6-7am and I'm inside around 8-8:30am. In my desert life, that timing is about right. If I stay out longer, the heat will start to affect me.
It's a ridiculous balance. I must have vitamin D to manage this beast, vitamin D is best absorbed through direct sunlight, but direct sunlight kills me softly.
I'm also super-white and don't tan...not fair.
There is NOTHING about my body that even hints I'm meant for heat, yet I need it.
It's like a bad romance.
A really, really bad romance.
And I live in the desert of Southern Utah where it's no big deal and everyone still functions when it's 112 outside. It's like a slightly cooler Phoenix.
But it's dry heat, so it's all good...ha ha.
I drink...a lot, between 120-150 oz a day in the summer to keep me cool and hydrated. I also love watermelon, tepid baths and a/c.
All errands are done quickly, the earlier the better. I can manage walking to my car and back, that's about it with the heat here.
My hubs is building me a pool to help me through the summers. Super excited about that. I feel like I should have been a mermaid because I LOVE to be in water. A mermaid with MS? Sounds like a horror show...
The ocean is my favorite place to be:)
Wanderlust
Vacations?
So hard and I hate it.
Our family likes to travel and I feel terrible that vacations turn into a
"watch Mom monitor her MS" sideshow.
If I have to be out in the heat, I'm sporting cooling rags (these don't help much in humid temps) and drinking a lot. The cooling rags look goofy--like I'm wearing a
brightly colored cape, like I'm Captain MS.
Yes, there are MS cooling vests.
No, I haven't been able to go there yet.
They look like bullet proof vests, are bulky, look labor-intensive...just no.
I will at some point and you can all say "I told you so".
Outdoor outings have got to be short.
Somewhere to crash for naps is critical.
On not going to the Midwest
We were supposed to go to St. Louis this summer. My kids haven't seen the great midwest and we're Mormon, so we were going to do Nauvoo too--think of it as a Mormon Mecca. It's rich in our church's history and beautiful.
However, I started following the weater and the high humidity started stressing me out.
I wanted to go badly, but I knew it would be a bad choice.
I talked to the hubs, who is so very understanding.
"No big deal, want to do San Diego instead?"
Yes, please.
San Diego is my home away from home.
Ocean, sea lions, Cheesecake Factory? What's not to love?
So, he cancelled hotels, switched airlines and took care of everything so I could go to the beach and Legoland (on-site water park!) and Universal Studios (pray for me) to see the Wonderful Wizarding Wworld of Harry Potter that I've been dying to visit.
All I want is my own wand...with a real unicorn hair in the core.
It's the little things people.
They have frozen butter beer, so there's hope for me.
Best part? We're doing Nauvoo in October.
#blessed
I'm lucky that my husband is so accommodating and keeps an eye on me.
I know he's got my back...and my MS and he never, ever complains.
I'm forever grateful.
My kids are chill, they laugh about it all and blame the brain lesions for everything I do.
They do keep harassing me to get a handicap sticker for better parking. Selfish buggers.
I actually make more jokes than anything, it's a coping mechanism
I use to hide my real feelings...says my therapist.
MS sucks in the summer and sucks in the cold winter.
I'm one of the special MSers with both heat and cold issues--upcoming post on that one.
Frankly I'd take the heat any day.
I actually dream of fire a lot. Probably need to cover that in therapy too.
That reminds me of my favorite Robert Frost poem!
{English teacher moment},
and since you're reading my blog, you can go there with me.
Dang I love poetry.
Anyway, the heat is on and I'm basically hiding in my home
...or a pool.
Grateful for the ability to manage it, for amazing family and friends.
Really grateful to my God who continually teaches me how to manage this.
Peace out.
HOLY COW!! This is insane.
For my MS friends...
Rachel's Quick & Dirty Tips for Dealing with Heat
- Know your limits--have an idea of what you can tolerate, check temps, dew point (this is a thing by the way--I'm currently researching), etc.
- Have a way to cool yourself down: fans, cooling rags, water, cooling vest or cooling clothes, mister, ice cubes, whatever works.
- If you do have to be out in the heat, have a back-up plan: find shade, escape to a/c in a car, store, restaurant, etc.
- Plan accordingly-even though I don't like to admit it, my day is planned around not being in the heat. It does make life manageable.
- Communicate-don't be afraid to speak up if it's too much, don't apologize or worry about what people will think. You have MS and you have to do whatever you need to do to be well. Help educate your friends and family as to what you need.
- If you react--cool yourself down as soon as possible. The symptoms you are having should subside. If they don't after 24 hrs. call your neurologist. My worst pseudo was the spring after diagnosis. I got into a hotel hot tub and ended up having my entire left arm numb for about a week. Lesson learned: no more hot-tubbing for this girl.
- Nap when you need to and practice good self care.
- Remember humidity tends to be worse than just heat because if you can sweat, the moisture around you won't let that sweat evaporate and you'll overheat rather quickly.
- We do need sunlight--make sure you have a good 10-15 mins. of sunlight without sunscreen so you can absorb. Frankly, I go out when the sun first rises without sunscreen and rarely burn. I'm usually soaking up a good hour or two of sun.
- Cheer up, Fall will be here before you know it! Fall is my happy place: can't wait!
Out on a sunny day with hubs...in the shade...for about 5 minutes:)
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