“What dreadful hot weather we have! It keeps me in a continual state of inelegance”. ~ Jane Austen
It is incredibly hot this summer. I hear people complaining about it all the time. Nevertheless, they all still seem to be able to go about doing their daily task. For them, it’s basically an annoyance or at the most, it presents some discomfort. For me, it has way more damaging effects. As soon as the sun’s rays hit me, it sucks every ounce of energy right out of my body.
At first, I thought heat affected everyone with MS in the same negative way. But I see news stories of people with multiple sclerosis running marathons and participating in bike events. I find that incredible! I can barely go outside for 10 minutes without wilting in the sun.
How are they doing that? Am I in the minority?
I have a cooling vest that is 5 years old. It helps, but not for very long. My friend, Dave Bexfield from ActiveMSers, suggested I get a new one. Cooling vest technology has improved over the years and there are a larger variety of styles available as compared to the recent past. He recommended a couple and I chose the one that best met my needs.
That was great advice because using my new cooling vest has really worked for me. Besides just staying in the house, it’s pretty much the only way I can think of to beat the heat.
So, I need some help. What’s the secret?
How do you deal with the heat?
The heat wins everytime. if its muggy it is next to impossible for me to get away from it its in the air and my MS knows tht. meh summr blus.
The ice in my vest melts after 2 hours. I take frozen water bottles with me but im usually not out for long periods of time. So glad the air in my car works.
Antionette, I can’t. Imagine life without AC!!!
Hi Nicole, heat has never been a friend of mine, even before the MS. I use a lot of fans throughout my home and the AC as needed. When outdoors, I look to find the biggest shade tree and hope for a nice cool breeze. Take care and stay cool. Love the picture, you look great!
I have tried the vests and they were too bulky and heavy for my dinky frame the neck things work ok in a pinch. Honestly acceptance of hermit-hood in the three digit weather and nocturnal behavior are starting to work the best 🙂
Hi Nicole,
I have struggled with this for so long, and I have finally found something that works for me. 🙂 For the past 18 years I have been forced to hibernate inside, do to the heat & humidity. I’ve missed out on so many outdoor activities, family & friends gatherings, etc, stuck inside watching the world go by. But no more, I now have my little Veskimo, where I go, it goes.
The Veskimo Personal Cooling System is composed of a very lightweight Body Cooling Vest, which has tubing all through the vest & ice-chilled water is circulated from the Chilled Water Reservoir: (no heavy, bulky vest with ice blocks)
A 9 Quart Hand-Carry Cooler with internal circulation pump, powered either by a battery or an external source.
The system provides you with relief from heat & humidity, by keeping your body core temperture cool.
It is expensive, but looking back at all the money that I spent on the cool vest (which can be heavy & bulky), scarves, etc. it’s an investment for me, an investment in my future. I spent 6 hours on the beach in Galveston, with my family just a couple of days ago. I didn’t even break a sweat, it was wonderful to be on the beach hearing the ocean, smelling the salt air & feeling the sand between my toes. The heat & humidity gets so bad here in Houston, Tx. that just going from the house to the car was too much for me, but not now with my little Veskimo, I’m able to do so much more. I’m so happy!! My family & friends are happy to see me out & enjoying life again. This is the web site I found it on http://www.veskimo.com
:-)))
Rhonda
The first 3 years with MS I had really bad effects by the sun! But after I had taken Tysabri I.V. For 2 years the sun at this point i. My life is not only doable it id much preffered as the cold is my new evil? Id stick w/ cooling vedt amf groxen wash clothes thay seemed to work well when sun was my eniemy good luck!
Here are some of my tips, Nicole. 1. Fill water bottles halfway and freeze. When you go out, fill with water and not only do you have cold water to drink which helps immensely, you can use it as an icepack on your face, wrists (pulse points) etc. If I am going to be out for a while, I put several of them in a little tote cooler and will even throw in a couple of ice packs. 2. Fill spray bottles with ice water and mist yourself. 3. Stay hydrated; suck on ice chips. 4. If you are taking bladder medication, be careful. A common side effect is that you won’t sweat and that is dangerous. 4. I live in the desert, so in the summer I restrict my outside times to early mornings and after sundown (if I can stay awake! lol) 5. Take cold showers. Soak your feet in cold water.
From my experience, heat affects most MSers but not all. How some of these people run marathons, is a good question. I’ll bet most of them have a “pay day” the next day. It would be interesting to see some comments from these folks. –Debbie
I totally understand your heat sensitivity. I describe it as letting the air seep out of a tire. I’m totally exhausted and can’t do a thing after just a small exposure to heat. And I used to be such a summer gal — long hours on the beach or by the pool never bothered me at all. We’ve been fortunate here in NJ this summer — the weather has been great, with only two heat waves. I guess it was God’s reward for our enduring the harsh winter. I hope your new vest helps you — they’re too heavy for me.
I go through the same thing. I call it the Vampire Effect. I keep waiting to go poof up in smoke. On those days I take cold baths and sit in the ac.
Southwest Georgia heat index forces me to simply stay indoors for most of the summer!!!
Hi Nicole,
Prior to being diagnosed with MS in 2006, I was being treated as being allergic to light and heat for one year. And I wish I could tell you what happened to change that, but I don’t have a clue working my doctors. Other than beginning treatment in 2006 using Avonex, that’s the only change that had taken place. Now I can go lay on the beach for hours and I am running half marathons and full marathons as you know. I’m thinking of getting in touch with some of the manufacturers of cooling vest, so that they could actually study the effects of cooling vest on people with MS that are also endurance athletes. I’m not sure if they will respond well given the fact there aren’t many endurance athletes with MS, but it’s the core body temperature concept that I think that they would have some interest in. Glad you got a new cooling vest and I’ll keep reading every week, keep it real.
Your friend,
Tim
Oh – I’m with you – the heat seems to just drain me. This year seems way worse than the past few have been. Can you send me the info on your cooling vest please? I am using coolr bands on my wrists which help me a lot! I have also found that using the endura cool towels by mission helps a lot too. The towels work well enough that my husband can wet them with hot water from the car. Snap the towel, and the towel is cooler! He is better about cooling me than I am at times. It doesn’t hurt that he can grab things out of our freezer while I lay down to recover. Best of luck to you staying cool!
Laurie, Warning: It’s costly!
But worth every penny.
coolture cooling vest
I have the same reaction. Heat is devastating to me and the suns rays zap the function out of my body, too. I read somewhere that approx. 65 to 75% of MS patients are sensitive to heat…some more than others. I also am amazed that people with MS run in marathons. Even when I was in RRMS, I couldn’t do aerobic exercises as it would raise my body temp…and I would pass out. If I pushed myself, it could bring on an episode. I always managed around the heat by doing resistant exercises rather than aerobic and staying in air conditioning when it was hot outside. Nicole, it must be hard on you to live in Louisiana…and the humidity…wow! I lived one year in Alabama and was relieved to move to Colorado to get out of the heat and humidity.