When you have multiple sclerosis, it’s hard to enjoy summer
How I've learned that I can't, unfortunately, beat the heat of the season
It’s not as though I do well in winter either, but — with apologies to Mr. Shakespeare — now is the summer of my discontent. It’s a shame, because even though autumn is my favorite season, I’d always enjoyed summer. Frozen desserts, vacations, fun activities around the water, and just sitting in the shade with a cool drink were just some of the pleasant things that I associated with this time of year.
I didn’t mean for my use of the past tense to make it sound as though I’ll never enjoy those things again. I still associate them with summer, but like so many other things, multiple sclerosis (MS) has severely limited my ability to participate in them. I know I shouldn’t equate association and participation, but I’m going to blame it on this disease for blurring the lines.
That was an oddly appropriate choice of words, because one of the main symptoms of MS and its heat sensitivity is blurred vision, a condition known as Uhthoff’s syndrome. For me, the heat also brings on overall weakness, loss of what little motor control I have left, and difficulty with cognition. Any one of those would hinder a person’s ability to participate in a summertime activity, but together, they can make it nearly impossible.
Me vs. hot weather
Before I was diagnosed with MS in 2014, I was completely unaware that the disease and heat don’t go well together. For some reason, I still occasionally expect everyone else to understand this idea as though it’s a universal concept. It sometimes leads to me being a little resentful when I’m invited to join a hot-weather activity with friends or family. I have to remind myself that I would’ve done the same thing a decade ago.
Another thing I would’ve done before I knew that I had, or accepted that I had, multiple sclerosis was to just try harder. I’ve never been particularly fast or strong, but what I am is stubborn, and I can chalk up a lot of my life’s accomplishments to that attribute alone. Like a strong-willed child, if someone told me that I couldn’t do something, it would make me try extra hard to prove them wrong.
I’m guilty of trying even harder to overcome some of the symptoms of MS. That might work on some of them, but when it comes to heat and MS, I’ve found that I cannot out-stubborn it.
What I’ve also found is that there’s no acclimating to temperature when you have this disease. There was a time in my life when I could go to any environment — hot, cold, wet, or dry — and thrive so long as I had some time to become accustomed to it. I’ve accommodated plenty of disabilities from MS, but I can’t say that I ever got used to, or acclimated to, any of them.
For someone who enjoys summer activities, especially with loved ones, not being able to fully participate is hard. If you’ll allow me to quote Mr. Shakespeare for my own purposes again, it’s the unkindest cut of all.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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C. Chamber.ain
I've had IT 20 years longer than you and you nailed it! It sucks being invited to a BBQ and sitting inside:|
Benjamin Hofmeister
Yes it does! I appreciate that people still invite me to things, but you're absolutely right enjoying it from inside is a completely different experience.
Lisa Kandel
It's funny I read this article today. It's in the high 80's here with very high humidity. I feel like absolute crap, and there's not much to be done about it. Thank you for sharing your story. It's nice to know I'm not alone in this fight. Stay strong and be blessed!
Benjamin Hofmeister
Thanks Lisa! I haven't been to any hot dry environments recently, but my gut tells me that they're probably marginally better than hot humid ones.
Christina Sedeno
Reading this article made me feel as if I were writing it myself. All of the feelings you expressed....I have felt and still do.
At the age of 36 years old, I was diagnosed with RRMS in 2011. It has not been an easy road for me. In 2018, I had a severe relapse that landed me on disability. Flash forward to 2025, and I have progressed to SPMS. My days are unpredictable, but I try to not let it get me down too much. Having older children makes it easier on me since I no longer have to chase after them and they're self sufficient.
Mainly, I am just extremely grateful that God has blessed me with a beautiful and full life even though it is challenging. I am thankful for every day that I am alive and for every chance that I have to spend with those that I love....in whatever capacity.
I pray that your journey with this disease doesn't keep your down.
Benjamin Hofmeister
Thank you so much for that Christina! My kids are still young, but they have really stepped up. I'm very proud of them, but I never wanted this for them.
Julia
Sad. How things that were so positive turn to a negative. And also, sad for our planet, it will only get worse, i'm afraid. This year, all records were broken.. again. And like you, these months i once loved, "dumped" me. For the first time my leggs gave way. In the street. They just went on stand-by. And when i came home, i couldn't move anymore. Just hang around the floor for about 40 minutes. Couldn't lift a hand. Stupid heat. Stupid me, traveling by train, (neuro appointment, hottest day of the year), groceries, cleaning, in 38°c! It lasted 3 days. In The Netherlands! Unheard of. Good luck over there 😎🥵
Benjamin Hofmeister
Hi Julia! Thanks for the comment, but I'm sad that you had record Heat just when you had things to do. I think you may have picked the perfect word to describe what MS does to us. I think I'm going to start referring to every loss as being "dumped" by something that I loved. It may not be a very happy word, but it is so appropriate.
Julia
Anytime😌
ET
Thank you for posting. I too always busy in previous summers. This summer has hit me so hard that it is making me feel awful.
Your post made me feel better as in I am not the only one going through this.
Does anyone know why Sativex that has been used for a long time in England and Canada for muscle/nerve pain has not been allowed in US?
Benjamin Hofmeister
Thanks ET! I can't really answer the sativex question, but I bet it has something to do with money.
As for the Heat, I'm glad you're not the only one, but I'm still sorry you are suffering in the heat like the rest of us with this stupid disease, if that makes any sense. Why does multiple sclerosis have to go after the things I enjoyed doing instead of things I hated? I know that's not super rational, but this disease can make you irrational at times. I wish I was the only one that ever felt that way.
Heather
The summer season with increased heat and humidity has changed my life because of MS. it has robbed me of so many little things because I often have to stay inside with the A/C running. I miss feeling the sun on my face, walks on the beach or even around the block, hearing the birds singing because the windows are closed, swimming in the ocean, attending outdoor events, gardening. The list could go on and on. One of the things I miss the most is my job doing garden design and working outside with clients.The hardest thing is knowing I will never be able to experience these things again. I’m 69 yrs. old so I am very grateful I was able to tolerate the heat for so long. Today the window are open with a breeze for a bit before closing things up. My perfect place is 70-75 degrees with no humidity and a breeze. Living in the northeast the weather can be unpredictable with climate change but I scoot outside in my wheelchair when we are fortunate to have those types of days. Thank you for all of your columns and sharing your personal experiences.
Benjamin Hofmeister
Thank you for reading them and taking the time to comment Heather! I still go outside too, but I have to limit my time and take precautions like sitting in the shade, drinking lots of cold water, and using fans and other cooling products. I'm very conscious of the difference between going outside on a hot day 10 years ago when it was just an inconvenience versus going outside now. I went to the beach in late May and it hurt a little bit that instead of staying out on the sand half the day, I had to sit under an umbrella and limit my time. It didn't ruin the vacation or anything, but it's just not the same.
David C Hentges
Your article hit very close to home. I have almost the identical situation. I've been very blessed! Up until 2013 i was extremely active in all 4 seasons. I loved being outside, heat / cold / humidity/ etc, I never gave the weather a second thought. I always love sports, participating in basketball, track, football, etc. I was fortunate enough to get a scholarship to play football in college. MS has changed all of that. I don't like to feel sorry for myself but watching my friends continue to do those things if I'm not careful I can slide into a poor poor pitiful me mentality. I have to continually tell myself how blessed I am. I'm confident other have it worse. I keep holding out hope that someday soon the researchers will figure out a way to repair some of the damage MS has caused. When that day comes we will all celebrate. Until then, I'll keep trying to find activates I can do indoors.
Benjamin Hofmeister
Thanks for the reply David! In typical MS paradox form, I'm glad the column was relatable for you, but sorry that it was all at the same time. I tried not to think about the past and things I was able to accomplish before MS because I thought when you had a new future, you were supposed to forget the past. If you didn't you were just Clinging On, or wallowing in self-pity. I don't know that I've struck the right balance just yet, but I think I'm on the right track. Now if I could just wear a shirt or have a sign that lets people know that I wasn't always like this and actually did things. I'm not really sure why that's important to me.
I don't embrace the present or future, but I accept them both. I don't dismiss the past either. It may be past, but it shapes the present and future.
Tom arild Fjeld
Jeg har levd med MS symptomene siden jeg var 22 år, nå er jeg 72. Jeg hr tret hver dag i lle, jeg går imot alt som ønsker knekke meg, jeg gir aldri opp. Har og hatt 5@slaf og er lammet i høyre side. Etter 7 år trening med Krav MAga fikk jeg sort belte, sloss mot funksjons friske, trener på helse studio 5 ganger i uken. Er nå 72 år og ser muligheter iallefall umuliggeree...er fit f7r fight. allways
Your friend Tom Arild
Benjamin Hofmeister
I have lived with the MS symptoms since I was 22 years old, now I am 72. I have trampled every day in lle, I go against everything that wants to break me, I never give up. Has also had 5@slaf and is paralyzed in the right side. After 7 years of training with Krav MAga, I got a black belt, fought against able-bodied people, train at the health studio 5 times a week. I am now 72 years old and see opportunities at least impossible... is the fit f7r fight. allways Your friend Tom Arild
Thanks for the comment Tom! You are correct when you say never give up and I hope I never do. Also I wanted to say that Krav Maga is very intense, so I salute you for having the mental and physical fortitude to do that.
I suppose I shouldn't be very surprised. When I was in Special Forces, I got to work with some Marinejegerkommandoen in Afghanistan and was completely overwhelmed. The movies only give the Hollywood idea of Vikings, but those guys were the real thing.
Takk for kommentaren Tom! Du har rett når du sier aldri gi opp, og jeg håper jeg aldri gjør det. Jeg ville også si at Krav Maga er veldig intens, så jeg hyller deg for å ha den mentale og fysiske styrken til å gjøre det. Jeg antar at jeg ikke burde bli veldig overrasket. Da jeg var i spesialstyrkene, fikk jeg jobbe med noen marinejegerkommandoer i Afghanistan og ble helt overveldet. Filmene gir bare Hollywood-ideen om vikinger, men de gutta var ekte vare.
Helen Dimmer
Thanks for your candor! My experience, and attitude toward it, are very similar. I have to occasionally reconcile my tenacity with my reality with M.S. I've been pegged as having PPMS but, of course, I don't accept that, citing life experience dating back to my childhood. I moved to a desert state when I was 11; I'm 65 now, and have never acclimated to the heat! My favorite season used to be spring, because I used to be an avid gardener. Now it's autumn (which was always a close second), because I don't have to deal with the heat or the weeds. It's a loss, but every year is a tiny bit better than the last. Thanks for your post!