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Why I Created the Hot Disability Aid Summer Instagram Challenge

So I’ve got this thing called heat sensitivity. When I’m in heat and humidity, I crumble like the Wicked Witch after Dorothy douses her with water.

Symptoms can include:

  • Blinking lights in my peripheral vision
  • Numb fingertips
  • Legs going weak
  • Light-headedness
  • Retching/vomiting

The symptoms wane when I relocate to a cooler spot.

Why does this happen? Multiple sclerosis damaged the part of my brain that regulates temperature.

How do I live with it? I avoid locations where I cannot find relief from the heat. But that’s not always possible to predict. When I’m planning to go someplace where I think I might be able to handle the warmth, here’s what works for me (provided the heat and humidity are not too intense):

  • Cold packs held in my hands and pressed to my neck. (Very cold cans of soda or other beverages can be used in a pinch)
  • Anti-nausea medication
  • My hideous cooling vest

The hideous cooling vest has a velcro closure that fastens around my belly and four gel packs around my lower back. It lives in the freezer except when I’m wearing it. I use this disability aid the most to cope with my heat sensitivity. It’s not exactly sexy, but it can make certain things possible for me, like being able to get to the water at a local beach without falling ill before I even get into the water.

After a recent author panel on women and health, fellow writer Sandra Beasley suggested I issue a challenge to the lovely folks on Instagram: Show me your disability aids. Take pics of the thing or things you need to cope with whatever symptoms or situations your disability throws at you. Why not try to normalize these aids, to reclaim them as tools for life as opposed to things we hide?

I have kicked off the challenge by posting pics of me wearing the said hideous cooling vest, as well as of other things I use for my MS-induced heat sensitivity. You can see the pics here.

Want to join in? Post your own #disabilityaid pic and make sure to include the hashtag #hotdisabilityaidsummer.

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