We’ve had a major heat wave here in NC over the last week. Heat + Humidity + MS = BLAH! Heat and humidity can make MS symptoms worse. Symptoms that I never experience on a daily basis show up constantly when it gets too hot. And with a heat index of 110F, this last week qualifies as hot! One day my legs started buzzing the instant I stepped outside in the morning to walk my dog. Not fun!
So how do I keep my cool during a heat wave? No, I’m not talking about physical cooling although there are many options. I’m talking about how I keep my cool mentally. It can be discouraging when a situation comes up that exacerbates my disease. I’m putting so much effort into simply making it through the day, any extras can send me into overload. I need to have a plan in place to keep myself in the right place mentally. Otherwise, I fall back into my pit of despair. My technique may not be perfect or for everyone, but it works for me. And it’s simply a matter of mind.
When I got irritated this past week because simply walking the dog made me feel like I’ve been on an all day hike, I remember. When driving home left me short of breath because the AC couldn’t keep up, I remember. When I had to take extended breaks with popsicles and ice packs as soon as I walked inside, I remember. I remember what it was like two years ago. The summer I got my MS diagnosis.
The flare leading to my diagnosis affected my lower body from the waist down. Progressive saddle numbness which crept into my feet and legs. At one point, I had no sensation of my feet. It was like they did not exist! And after the initial flare worse off, I still had to live with lingering symptoms for the entirety of the summer. A heat wave that year was devastating.
I remember walking the dog unable to stop moving because if I did, I knew my legs would lock up, and I wouldn’t be able to move. I remember walking her to the grass one day and just sitting on the ground, because I just couldn’t go anymore. Bless her, she was so worried about why I was sitting on the ground, she could barely concentrate on doing her business!
I remember stepping outside and my legs turning into spaghetti, barely able to support me. I believe muscle memory was the only thing keeping me upright some days. I remember when spaghetti legs appearing out of nowhere, nearly causing me to fall on my face. I remember legs being so heavy, I could barely lift them enough to put one foot in front of the other. I remember barely being able to breathe as I walked short distances outdoors.
I remember walking from my car to the Walmart entrance. Every step feeling like I was wearing concrete blocks. Barely able to propel myself forward. Then stepping into the frigid AC into the store. Immediately, the same legs that were so stiff and barely moving a moment ago, dissolved into mush. I didn’t so much walk through the doors as I stumbled through. I couldn’t walk a straight line and would find myself weaving from one side to the other of the freezer aisle. I’d take a step and lurch into a shelf of veggies, grabbing on and holding for dear life while I got me feet back under me. I’d shuffle through the aisles with hands touching the shelves to keep me upright. (Of course, it had to be during the height of Covid!) Eventually, I learned to grab a cart, even if I was only getting one item. At least then I had something to lean against.
I remember the constant vibrations running up and down my legs. On an especially hot day after walking the dog or checking the mail, I would come in and sit on the couch. The buzzing would be unbearable. I would sit rubbing my legs and begging, “Please stop! Please stop! Stop, stop! STOP!” while getting angry at the tears I couldn’t hold back.
I remember.
And when I remember, I am thankful. Thankful that yes, the heat is unbearable, but I only have a slight buzzing in my feet and lower legs. My legs get heavy while walking the dog, but I can move forward and am not afraid to stop knowing that I will be able to continue on. I am soaked with sweat walking into Walmart, but I am walking, not lurching as if I were drunk. I do have to take a break to cool off when I get home, but I’m sitting down eating a popsicle, not crying in pain. And I realize, I have much to be thankful for.
I’m not minimizing my or anyone else’s pain. I have just learned the value of a positive mindset. I get much less done in the heat. I’m miserable. But I remember. And suddenly, it’s not so bad.
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