My first heat wave
I know that so many of you warriors have many years under your belts. You have persevered, and I have so much respect for you.
I have been experiencing symptoms for the last 15 years, but mild and mostly unnoticed. Until this past December. And then the bottom fell out and everything went haywire and I realized the severity of what I am up against. And now I am fighting for testing and getting a diagnosis, wherever the dominos fall.
I have never experienced temperature sensitivity before this year, and we just hit our first heat wave of the season. Thankfully I'm in the PNW, so I can count on it cooling down again. But Friday at work I was floored by the overwhelming sensations brought on as soon as I stepped outside.
I knew it would be rough, started to feel it months ago as we hit spring, but had no idea what was in store. I am honestly scared about going to work for the next couple of days until the heat wave ends, every time I step outside I...
Electric tingles and pins and needles and the circle of electric shocks around the face. The spasticity increases and the balance decreased, and the exhaustion hits hard.
I have never not loved the summer heat and the sunshine. Until now, when I find that it is suddenly affecting me so much.
I have rechargeable fans set up all around me as I write this, with my entire body tingling and tense.
I don't know what I'm actually asking, but would love to connect. Do any of you amazing people have stories to relate? Can you empathize with my current experience?
Much love and much more respect 💜💜
while I'm glad to hear that you've done well all these years, I'm sorry to hear that you're dealing with the struggles of heat sensitivity now. I'm sure others will join this conversation here, because we can all relate so much! In the meantime, i wanted to pass along an article that I wrote about navigating the heat in summer. https://multiplesclerosis.net/living-with-ms/summer-heat-intolerance I hope you find it helpful! Hang in there.
Best
Alene, Moderatorthank you for the article, and can I just say that you write beautifully. Not gonna lie, as I read your article I had a narrative in my head that was very Samuel L Jackson esc. It was fantastic. 😁
I made it through the day, we hit 102° and I travel throughout the day between buildings and locations in my city. It was rough, I had a couple of my coworkers who know my concerns express worry as I spoke with them. I wobbled, I bobbled, I got cranky, I restarted and then went on to accomplish much while feeling the worst electric tingles over my whole body and severe spasticity. And the tremors. But I pushed through and adapted.
We have two more days before the temperatures briefly drop before rising again. I'm sadly banking on the temperatures two days from now to tip my symptoms harder, because that is the day I see yet another doctor to fight this battle and get the tests that I know I need. If I go in trembly and shaking, with the muscle spasticity I encounter so frequently, and all my symptoms raw, maybe it will help my argument in such a biased and suspicious medical community.
But, despite my sad hope, I am taking measures to protect myself. I have a handheld fan that works great, I am trying to keep cool, I'm drinking my fluids and keeping my electrolytes in check, and even though I'm not hungry I make sure to eat adequate nutrition. I will pull through. I'm just sad that my happiest season is now yet another obstacle to figure out.
In the interim, drinking my soda water cold, setting out snacks and water for my delivery drivers, and palming candy to my coworkers in exchange for silence and acceptance.
Thank you again, and so much love and respect 💜💜
thanks so much for taking the time to share this feedback, I really appreciate it. I think it's fun that you read the article in the voice of Samuel L Jackson! My voice is nothing like his, however, I'm sure it was a much more entertaining read that way! 😀
It sounds like you're really in the thick of it with this heat wave. I hope that the break - as brief as it may be - gives you a little breather and a moment to prep for the next spike. It sounds like you're doing the very best you can to prepare for it, adapt and protect your health and boundaries in the midst of it all. Your story is a great reminder and inspiration for us all to do the same.
We appreciate your voice in this conversation and in this community. Be well!
Best
Alene, Moderatorso... now that it happened it is. I read all of your comments in Samuel's voice, and I gotta say, it's hilarious and resounding at the same time. Once it started it didn't stop! 🤣🤣🤣
That said, I appreciate all of your feedback and support. I have newly experienced so many things that everyone here has struggled with for years. And I'm overwhelmed, not only with trying to navigate my new boundaries but with amazement and awe for everyone here. It's not easy, and I am just so very thankful for you and this community. To be able to connect is the best blessing.
As I bob and weave and zig and zag through the next wave of heat, I hold you all close in my heart (but not enough to raise the temperature!!)
Much love and respect 💜💜
the heat, especially the humidity. I really think this is the worst summer. I’ve had yet. It’s just unbearable. I feel you. I grew up in SW Virginia, where the summer started in April and lasted through October. The nights were hot, the days hotter, and humidity was in the 60-80% range. And I loved it! I thrived in it! The day I left to move out of state my last time, it was 108°, 80% humidity, and as we loaded up the car with as much as we could carry we were all dripping with sweat.
I think back to then, and how happy I was.
And now... I just feel the heat explode in me and around me as soon as the temperature hits 72... we're heading into the third swell of our heat wave and I'm stuck using my cane to lean on.
What a trip! Where's my thermostat??
💜💜
