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 summer="summer" means="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!
How many specialists did you see before finding "The One"?