Heat and Multiple Sclerosis…….sooooo not on my list of favorite things

In the last post I mentioned that I live in a state that feels like it is situated on the outskirts of Hades. Well it is better than saying the outskirts of He**. It’s not evil here, it is just horribly HOT !!!

It so happens that I used to run at 2:30 in the afternoon 5 days a week. Yeah I was REALLY tan…….and it was HOT. It was okay for a few years. Then all the sudden I would start stumbling. I’d sway and ramble right off the sidewalk and MAN did I slow down. Not a little slower, but my feet were barely coming off the ground. That is probably why I was stumbling….I was tripping over my own feet.

On my long weekend runs (one approx. 13 mile run on Saturdays) I’d get STUPID. No other way to say it. My running route was a straight line. I’d leave from my house, run 3.3 miles in an almost straight line, turn around, run that same 3.3 miles toward home, and then do it all over again….out and back. On the last 3.3 mile leg in…I’d get lost. Not a turn down the wrong road lost, but a “Where the hell am I” lost. I knew I was out for a run and I knew I was on my way home, but for the life of me ‘NOTHING’ looked familiar. I was doing this run with a friend one Saturday and I suddenly had this ‘lost moment’. I told her I didn’t know where I was or how to get home. Being the wonderful person she is, she continued running with me until I figured out where I was.

Of course this was before I was diagnosed.

Other ‘getting STUPID’ things were…after said runs I put my keys in the freezer, couldn’t figure out how to work the shower, and sounded like I had an entire bottle of Tequila allllllll by myself.

On top of that, after the run I’d pass out on the couch. Not a fall and hit your head pass out, but the can’t keep your eyes open type of passing out. It was horrible. My little kids were home and here is a passed out mom, who put her keys in the freezer, stunk because she couldn’t figure out how to work the shower, and sounded like she was 3 sheets to the wind.

A while later, after my Introduction to the Monster, I found out, (during my ‘Major Book Retailor M.S. research trip’….. mentioned in a previous post), that Heat and M.S. don’t play well together. This M.S. induced heat intolerance is called Uhthoff’s Phenomenon. Wow…..way to sort of RUIN one of the few things I enjoyed doing. It isn’t like we have a “cool time of day” here. We’re are on our 4th treadmill since my M.S. epiphany. The garage does not have air conditioning so I still have the SAME heat problem…..just without the pesky sun part. My husband and son use the Damn thing more than I do and No, an electric fan does not help…..all it does is move around the HOT air.

M.S. doesn’t play nice in the heat. The heat sort of puts your brain on the fritz. See the electrical signals – the ‘do this now messages’ in a Healthy Brain, sort of skip along happily over nerve pathways. Kind of like playing hop scotch……before you add a rock to the mix, you hop from one square to the next. Easy Peasy. Nice and smooth….a quick hop hop hop.

In an M.S. Brain, lots of rocks have been tossed on your hop scotch board. You can’t easily hop from one square to the next. You are hopping all over the board, attempting to avoid the squares that contain rocks. You try to clear two boxes in a row, wobble, lose your footing, and fall. Not Fun.

On top of the….let’s admit it…..SAAAAD game of hop scotch, adding a little heat moves the game from the sidewalk to the wet, ceramic tile in the kitchen…….and you’re playing barefoot.

M.S. strips the myelin off of nerve cells in the brain. The ‘do this now messages’ are interrupted, slowed, staggered, or sometimes stopped all together. The ‘do this now message’ in a Heathy Brain sounds like this “lift left leg, lever it forward 2 feet, lower it to the ground, transfer weight, repeat same process with right leg”

The same ‘do this now message’ in an M.S. brain (that is negatively affected by the heat) sounds something like this “lift lt eg, lev r t forwa d………2 t, lowe …to h gr..nd, ansfe….eigh…t, r..eat same pr..es. ith………ig..eg”. LOLOL…..Yeah, try to walk a straight line with that.

My advice…..if you care to listen, is to find and stay inside of a building or car with……oh……so…..nice and icy air conditioning. If that isn’t available, get in a pool. Even a kiddie pool. Prop an umbrella over your head, wear dark sunglasses, lay back in the water, and just chill.

If those options aren’t within reach there is a wide array of personal cooling devices available:

  • Evaporative Cooling Towels –
  • Cooling Vest using some type of cooling pack technology – they have rave reviews but are on the expensive side. Anywhere from $100 USD to almost $400 USD……..said to be worth the cost if you are traveling and cooled areas are not available
  • Cooling Vest using evaporation technology – very effective. Uses water to jump start the cooling process. Best for individuals who are already very active outdoors.
  • Cooling Wraps and Cooling Hats using evaporation technology – very effective. I own a couple of the cooling wraps (the size of a small scarf). They are dipped in water, wrung out, and draped across the neck or head…etc. They stay cool for about an hour. Just enough to cool off after light outdoor activity.

There are many, many, brands on the market. Just search “Cooling Vests for Multiple Sclerosis” and you will see options at all price ranges.

I’m not listing manufacturers because there are so many. I haven’t tested these products from multiple manufacturers, so it isn’t right for me to recommend one brand over the other.

Iced Tea, Iced Coffee, Ice Cream, Slushies, Root Beer Floats, walk in coolers, cold showers, penguin house at the aquarium…….feeling cool yet ???