When the Weather Makes Life Rough
The summer can be a rough time for folks with MS. I know I’ve written extensively about how increased temperatures and humidity can have an adverse effect on those who suffer from the disease. We recently went through an intense period of hot temps and near 100% humidity where I live in the far southern tip of Delaware along the Atlantic Ocean (and yes, I live just miles from the beach, but seldom enjoy it in the summer because of the weather). During this stretch of time, I took some notes about how the weather affected me. I thought I’d share some of my observations. This may not be helpful for those who already have MS, but might be good examples to share with friends and family to explain what warmer weather can feel like, for at least one person who has MS.
The abrupt change in weather
On the first day of the warmer and more humid weather, my notes really focused and blamed the abrupt change in weather. It had gone from low-70s to mid 80s but also included a massive increase in humidity. The humidity increase seemed to come first, and while air conditioners are very helpful when the temps are high, they don’t usually kick in if the humidity is high but the temps haven’t increased. Regardless of what changed first, the fact that the change happened quickly, overnight, was a shock to my body, leaving me with increased fatigue and cog fog. I noted in that same entry that it was taking me longer than average to do things, basic things, like work the remote control and I can tell (lots of “colorful” language) that this left me feeling very frustrated.
Throughout this mini heat wave, I noted numerous times that I had trouble moving. As the weather affected my damaged nerves that are used to control the movement of my arms and legs, I literally had trouble moving my limbs. Simply picking up a glass of water was a challenge for me. Any sort of movement was not only difficult, but draining. There were many times during the heat wave, even with the air conditioner blasting, where I simply laid on the couch, doing nothing. At one point, I made a note of “slug” because I apparently felt like a slug.
Burning pain in my legs
My notes show that I encountered increased pain, notably burning pain in my legs, particularly in the early mornings which led to me being unable to get good sleep (at which point I made a note of “painsomnia”). I also noted that it was difficult to get comfortable because it felt like my legs were on fire. I started really trying to keep myself even cooler than before, using a portable air conditioner to supplement the central air. I also began using cooling products (like vests) indoors.
A lot of symptoms hitting me at once
I noted that I felt “rough” numerous times. “Rough” is a keyword that I often use to describe how I’m doing to my roommate (who also uses the word, as in “I can tell you are feeling rough”). For me, this word means a lot of symptoms are hitting me at once. When I use it, it usually means I’m in pain (burning and aching), severely fatigued, having trouble moving, and that I feel confused (I’ll just mutter “rough” sometimes because it’s all I can put together). My roommate knows this usually means I need to get cool, be sure to eat something, and go to bed (likely with a sleep aid).
The heat is serious
After three days of intense humidity and high temperatures, despite combating those with air conditioning and cooling products, I made some disturbing notes about hopelessness and not wanting to deal with it anymore. I actually wrote that “I bet the higher rates of suicide in people with MS happens because of the summer”. That’s terrifying. That doesn’t mean I was ready to do it right then and there, but that is how awful I felt; those thoughts went through my mind, that’s how serious high heat and humidity can be for us. I’ve discussed before that the rates of depression and suicide are much higher for those with MS. It’s clear that this was on my mind on the hottest and most humid day of the heatwave when air conditioners were having trouble keeping up, and I had felt miserable for multiple days in a row.
It's different with MS
These are just some descriptions based on notes I took at the time, but I hope it goes to show that when the weather is warmer and more humid, many people with MS aren’t just “hot”. You may be “hot”, but it’s entirely different than when someone with MS is hot. It’s an awful experience where nearly every symptom we’ve ever had can bring us to the ground. It isn’t simply a matter of being slightly uncomfortable. I hope some of this can help explain what life is like for many folks and why many of those who suffer from Multiple Sclerosis tend to hibernate in the summer months.
How well do people around you understand MS?