Skip to Accessibility Tools Skip to Content Skip to Footer
A small blue house boarded up with bars on the doors.

Board Up the Windows – Summer is About to Hit

It’s generally agreed upon among the multiple sclerosis (MS) community that heat is bad for MS. Uhthoff’s phenomenon is the worsening of MS symptoms when exposed to heat (or when the body overheats from something like exercise). While cold weather definitely causes some people with MS to feel worse, I have always been of the opinion that (when it comes to it being cold) you can always layer up more but (when it comes to it being hot) you can only strip down so much. I mean, it’s not like you can take your skin off right? That said, cold weather does make the spasticity in my legs worse, but overall I still feel much better in 10-degree weather than I do in 110-degree weather (Fahrenheit), but that’s just me. Everyone is different. What seems to be the same for everyone though is that summers are getting hotter and winters are getting colder which means that life for people with MS is getting more difficult or, at the very least, more uncomfortable.

Each year bring a hotter summer

I currently live in Southern California in an area where seeing 110-115 degrees on the weather forecast is pretty typical during the summer. I have also experienced 120-degree weather in Palm Springs which is just 30 minutes east from where I live and to say that was miserable would be the understatement of the year! Since the time I was diagnosed with MS, each year seems to bring a hotter summer, so I have to wonder how long it will be before it starts hitting 120 in my area? I first began to worry about this when I noticed that my home’s air conditioner already seems to have a hard time keeping the house at a reasonable temperature when it’s this hot. Because of this, I tend to spend all of summer in my bedroom next to a portable A/C unit.

Summer brings depression and cabin fever

Summer is still a few months out, but already I’m feeling a sense of dread as I “brace for impact” because to me it means a heavier fatigue, depression, and the appearance of a bunch of little symptoms that I usually don’t have to deal with. As a child summer meant 3 months off from school and playing outside with friends; freedom. But now? Summer is more like 3 months stuck in my room next to my portable A/C unit while dealing with depression and cabin fever; I feel like a prisoner. A prisoner to the unforgiving heat of the blazing hot sun. I hate summer. I really hate it.

Saving money for cooling supplies

I’m hoping this year will be a little different though. This year I have spent a lot of time preparing for the misery of triple-digit temperatures in hopes of keeping my MS calm. I have literally been saving money just to spend on “supplies” like new home insulation, fans, and a new cooling vest. I have been working on a list of every issue I can think of that summer brings about and every possible solution I can think of to counter them. While pondering about this, I had to take a minute to laugh because when trying to decide what the best way to shield the windows from the sun was I entertained the idea of buying sheets of Styrofoam insulation to cover the insides of the windows. This was kind of funny to me because it made me feel like I was planning on boarding up the windows with plywood to get ready for a hurricane!

Surviving the heat

But as comical as I found that idea to be at first, I don’t really think it’s that funny after having thought about it because if our summers continue to get hotter what will that mean for my life with MS in 10 years? What measures will actually be necessary for me and other people living with MS to take in order to make it through summer? This was when a rather stark reality dawned on me… I am very fortunate to have the options that I have because there are a lot of people with MS (and similar conditions) who can’t afford to run the A/C all summer long, whose A/C can’t keep up with triple-digit temperatures, or who don’t even have A/C at all! I can’t even imagine what summer would mean to me if I were in that position! So I guess the point I’m trying to make is that “surviving the heat” is probably going to mean something much different in the near future than it does now… Prepping for a heat wave might actually end up being right up there with prepping for a hurricane, especially for people living with MS!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • caligrl80
    6 months ago

    I moved to Desert Hot Springs near Palm Springs two summers ago and i also dread the heat. Especially when Edison does their planned outages on the hottest days i have to plan for that. The misters outside in Downtown Palm Springs don’t do much but i find the places with the best AC if i have to be out. Other than that i stay home and crank the central air and mainly dread the high bill i get every summer lol. Well worth it in my opinion ofcourse haha.

  • Matt Allen G author
    6 months ago

    Oh man, definitely not a good place to live if you can’t do heat!

  • mstini2013
    7 months ago

    In response to the doggy cooling pad, I actually bought a gel cooling pad that I bought for our camper. I didn’t know that it was a cooling pad at first, I initially bought it to make the guest bed more comfortable for my sister. I also bought a cooling pillow that is gel. And, if anyone is looking for a super nice body pillow, Lakeside Collections has some and it is also gel and helps with cooling. I definitely suffer from the extreme heat intolerance as well and it sucks…..When I was working, I bought a “As Seen onTV” portable ac for my office. It was well worth the money. It says to put cold water in it, but I found that if I put half water and half ice it worked even better!! It has taken some time but I’m learning how to dress for comfort depending on where I’m going. I’m also slowly learning what time of day to go outside and when to come in.I live in Northern Michigan, its very humid here so it makes 80 degrees feel like 100. I prefer mid 70’s….which is the late Spring and Early Fall. I try to stay in the ac but we do a lot of camping, so I get up in the morning which is very enjoyable, after 11am I try to stay in the shade or ac, then about 430pm I can come back out to enjoy the evening. Best of Luck to everyone trying to stay cool this summer!!!

  • Meagan Heidelberg moderator
    6 months ago

    @mstini2013 – thanks so much for sharing what has worked best for you! Those are all such wonderful recommendations. Camping sounds a lot of fun – especially since you have that cooling pad now!

    Best – Meagan, MultipleSclerosis.net Team Member

  • Matt Allen G author
    6 months ago

    When I was first diagnosed I made one of those A/C things by putting ice water in a styrofoam cooler that had two holes cut in it on each side. On one side, a fan was blowing air in so that the air blowing out of the other side would be cold. It was nice for like an hour until all the ice melted haha.

  • Tess
    7 months ago

    The heat is the worst and I get it. Stuck inside apt for 3-4 months with a surging electric bill. Not enough stress there, huh?!
    I have a cooling vest, neck wrap and ankle wraps but they don’t stay cool very long and the weight is awful. We do what we can is all I can say. It’s brutal though.

  • Tess
    7 months ago

    I also live in SoCal. The summers are getting hotter.

  • Matt Allen G author
    7 months ago

    Yes, I remember when seeing 100 on the weather forecast was kind of surprising and now it’s surprising in the sense that “it’s ONLY supposed to be 100 today? Wow, we needed a nice break from this heat!”

  • potter
    7 months ago

    I live in Kansas and also have the same problem with high heat in the summers. I usually go outside around 7AM and feed the birds and water plants usually by 10 I have to go in. I also feel like a prisoner in my own home. I can’t even drive with a air conditioned car in 100 degree weather, my brain get foggy. We had our central air conditioner go out a couple of years ago. It was under warranty but the company was dragging its feet. By the time it got replaced it had been a month. We had bought a window air conditioner for our bedroom. I basically lived in the bedroom, it has it’s own bathroom and a area for watching TV. My husband and I would eat dinner in there. It was 105 that month and then cooled down after we got the new air conditioner. Potter

  • Matt Allen G author
    7 months ago

    Sounds like my living situation during the summers; I have a window A/C and a bathroom so during the summer I have little desire to leave my room although it sounds like your room may be bigger. The house A/C went out last summer and it was terrible!

  • Isabella2
    7 months ago

    I have MS spinal cord damage so to stay cool in the summer or all year, I thought I would try a doggy cooling pad to lay on. And it works wonderful, you don’t have to do anything to them just lay them where you want, and rest your back. $18 dollar fix,

  • Tess
    7 months ago

    Doggy cooling pad!…That’s brilliant. Thanks!

  • Shelby Comito moderator
    7 months ago

    Thanks so much for sharing this helpful tip with the community @isabella2! – Shelby, MultipleSclerosis.net Team Member

  • Donna Steigleder moderator
    7 months ago

    I want to say, “That’s really cool!” but I know that sounds super lame but on the other hand, what a great idea! Thanks for sharing.

  • Shelby Comito moderator
    7 months ago

    Hahaha 😉 Love it, @dsteigleder! – Shelby

  • collena
    7 months ago

    I have the foam in several of my windows, carefully cut co and can put in back when I could feel my fingers helps to a bit in terms of bills at least. Maybe this year I’ll try tin foil. Lol.

  • Tamara Q
    7 months ago

    Don’t put foil they’ll think your a druggie. lol When their tweaking they tend to put foil in all their he windows. Get that film that blocks out sun rays it see thru. That actually works

  • Matt Allen G author
    7 months ago

    I found some mirror-tint for my windows and then some heavy blackout curtains so I’m going to see how that works before cutting some foam.

  • Tamara Q
    7 months ago

    Exactly !

  • Poll