It’s Time to Start Thinking About Seasonal Adjustments and MS
The thought of summer approaching both worries and excites me. I’ve always preferred the changing of seasons and fair weather to the height of a season, even before my MS diagnosis. I prefer change and the idea of starting anew, as if it might be a remedy to the “hurricane” that MS has brought to my life.
I try to apply this idea to my daily life, although this year, I feared I was failing at seasonal adjustments, at least until recently. I’ve been feeling stuck in a bit of a rut. I realize that part of this is because the weather has been so variable lately here in the U.K. I’ve described before how temperature affects my MS symptoms. It used to be that I was entirely unable to tolerate heat in whatever form it took, but as the “hurricane” waned, it became swift changes in temperature that triggered symptom variation. That made seasonal adjustments difficult.
The severity of these temperature changes usually correlates with the severity of changes in my symptoms. So the typical variations of spring weather in the U.K., as much as I enjoy the season, have left me feeling constantly groggy and fatigued, despite taking fatigue medication. I think this is what has me feeling a little out of touch with myself.
My bladder usually is the first to let me know it’s unhappy. I might start having to go to the toilet more frequently, and in extreme cases, I won’t have any warning at all and it’ll cause an accident. As I wrote in my last column, however, my symptom management in this area has drastically improved. It’s better to be safe than sorry, after all, especially in situations like day trips, where the last thing I want is to worry about having an accident. That only detracts from the enjoyment of the day.
Every year, I look for new and different ways to keep my temperature as close to constant as possible. I’ve done this for five consecutive summers since being diagnosed in 2017. These have been five opportunities to learn and to manage my symptoms. It’s not as simple as it sounds, considering that for two of those five summers, the “hurricane” was in full force. But because my MS has been more stable recently, I’ve had more success with learning what works.
In the summer of 2019, I learned the importance of wearing light colors, and sundresses instead of jeans, and keeping ice pops in the freezer and water in the fridge.
In the summer of 2020, I was permanently in front of the fan, which wasn’t difficult because it was the first summer after the COVID-19 outbreak, so we weren’t allowed to leave the house anyway.
Last summer was similar to the previous year, which brings us to this year. There has been a change this year, in that we’ve bought a house. I’m already aware of how our new home, which was recently built, retains heat. We haven’t needed to turn on the heat since March.
On the flip side, however, I’m anticipating the upcoming warmer months with a bit of anxiety, especially regarding nights. We’re already sleeping with just sheets, and I miss the coziness of a duvet. The solution? We’ve invested in an air conditioning fan. I’d resisted this for a while, mainly because of the cost, but being so warm in the house so early in the year made me think that by midsummer, I’ll be thanking my lucky stars that I gave in and bought one.
Other ideas for nighttime comfort include putting dog cooling mats under the sheets or in pillowcases, although I haven’t tried it yet. With new weapons in my arsenal, hopefully, I’ll be too busy frolicking in the late afternoon glow to be taken down by any pesky MS exacerbations.
Do you struggle with seasonal adjustments and MS? Please share in the comments below.
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Comments
Chris Jackson-Smith
Hi Beth, I too suffer with temperature changes. I was diagnosed in 1984, in London when it topped 30° in a prolonged heatwave. Ever since I've found that I cannot regulate my own temperature; so if it's cold then my extremities are like blocks of ice, conversely when it's hot I overheat to the point of feeling sick with it. With this came the weird symptom of loss of sensitivity of the surface of my skin, on my entire body. In recent years I've noticed that I have strange reactions to the touch of my skin, a common one is thinking that my skin is wet. Does anyone else have these odd reactions? Kind regards, Chris.
Anita
I, too suffer when the summer months roll in along with the humidity. I live in South Florida so there is nowhere to hide. It zaps out all of my energy and I get agitated when I’m extremely hot and sweaty. My spouse knows not to talk to me at that time because I will snap. What I find that helps me is I will rinse my arms in the sink (elbows on down) with cold water. I pat dry. I then use my blow dryer on high/cool setting while holding down the blue “cold shot” button. I use that on my arms, head, back and chest for about 5 min. I’m as good as new after that!
Cynthia MacFarlane
The first time I had that weird feeling .... I was sitting on the kitchen floor looking through my cookbooks. I felt like I was sitting in a puddle of cold water ! I stood up to check. It felt so cold and wet ... but there was no water. Another time , I was walking and a breeze was blowing ... it made my right leg feel warm and my left one icy cold. Very strange. I can no longer walk much or sit on the floor (wouldn't be able to get up) so haven't felt that in a while. M S symptoms are weird ,eh ?
Jenny Pavek
Hello Beth,
I also suffer with temperature changes. I was diagnosed in 2012. I cannot tolerate being outside in heat for very long. I used to love being outside.. I can barely stand being out in the cold. I am cold all the time. My hands and my feet are always cold.
Chris, I have recently started having the feeling that my skin is wet; more so that my feet are wet.
Wishing you both the best,
Jenny
kathologist
Hoooo boy.
I live in rural Northern California.
I grew roaming the rolling hills of Marin.
Moving to Lake Co. from San Francisco (120 mi. NE) 20 yrs ago reacquainted me with long hot summers.
My MS symptoms fully manifested August 2020. I cannot tolerate temp.s over 85F at all this year. Complete mental & physical melt down. Not just dizzy or faint, but extreme fatigue & loss of muscle strength. It takes hours to recover. It scares me. I haven't even come to grips with where I was function-wise last year.
Getting a cooling vest is on my To Do List.
It's a MUST HAVE.
I've got the gel bead neck bandana thingies but that is nowhere near enough.
We have a window mounted A/C in the bedroom - which is not a hardship since this is where I spend most of my time. Going into the rest of the house is daunting. Our house is stucco on the outside & no insulation in the walls so late afternoon the temp goes way up inside. Making more adjustments to plan any activities to happen before 10 AM or well after dark. And stick to it. There really isn't any wiggle room anymore.
re: Parasthesia - false messages/stimulation of the skin...MS manifests in many discomforting, disconcerting ways for me now. Taking a shower sets off a feedback loop of intensity. Phantom sensations like feeling wet as Chris mentioned is part of the haywire nerves. I really wish I could find relief from the unrelenting throbbing, burning & prickling of my feet. The only real relief I've found so far is a good deep belly laugh! That moment of release surprised me! For just a moment, that agony is gone.
Jennifer Potter
I am permanently cold in winter and too hot in summer- I think the problem is that I find it difficult to regulate my temperature - before MS I used to love the summer!
Susan Addison
Chris, you are not alone in feeling a wet sensation. It can take you by surprise. I experience this primarily between my shoulder blades. Initially, I would scan the area looking for the source of whatever was dripping on my back, only to discover that there was no water source. It was a sensation that was new to me. I am happy to say that this is not a constant sensation. It comes and goes without explanation, other than MS. Best wishes to you.
Jean Delaney
Re th the gel bead neck bandana thingies. I have several and keep them in the frig, swap when the bandana gets warm. For outsdie use an insulated lunch pack with a frozen ice pack. to keep them cool.
When I go gocery shopping I sometimes straighten the freezer cases or look for the pakage waaaay in the back.