Welcome to my blog.

My goal is to help provide EDS & Dysautonomia patients with resources to discuss with their healthcare team.

Battling the Summer Heat

Summertime is rough. I know I want to be outside enjoying the weather (Wisconsin winters seem to last forever) with my friends and family but the combination of heat and humidity can leave me sidelined. 

Here's what I've learned

  • Stay indoors during the hottest parts of the day. If this isn't possible, find shade - or create it with an umbrella. I know I've felt silly carrying my umbrella, but at least I'm not baking in the sun.

  • Stay HYDRATED!! Make sure you've planned ahead and have extra hydration powder and/or water with you. I carry extra powder and use a drinking fountain to refill my water bottle.

  • Wear lightly colored clothes that are loose fitting. I have a bunch of oversized college t-shirts that I made into cutoff shirts. I wear a sports bra underneath and couldn't be happier with my choice. I may not look super stylish...but having a breeze pass through clothing that isn't clinging to me (trapping heat), is worth it.

  • Know your triggers for Pain or Syncope (Passing out)

    • Humid heat is a trigger for to pass out. So I need a way of cooling down quickly-Quick cooling towels help, misting tents at larger events, or simply using the sink in the bathroom to put cool water on my face or lower back (when my lower back overheats, I pass out).

    • Walking long distances - hip pain and/or knee pain. When it's extremely hot out, I have to determine if using a brace will trigger overheating. I start the day with my SI belt on and figure out if I can tolerate it with the heat. Most likely, a knee brace isn't an option because of the discomfort. I do my best to limit physical activity that I know will aggravate my joints the next day...or I make sure that I'll have a recovery day.

    • Long periods of standing still. Long lines, concerts, lengthy conversations when I bump into someone I know, etc. are all triggers for me to feel like I'm going to pass out.

      • If there's a long line - I will sit on the ground (inside/outside/wherever). I would rather be sitting on the ground than stand and feel miserable.

      • At concert venues - I either call ahead and talk to someone in charge or I show my medical bracelet to one of the security guards and they escort me to handicap seating area.

      • Running into someone I know - I quickly guide us to somewhere I can sit/lean. If they know my conditions, they'll understand. If they haven't seen me since I was diagnosed, I quickly explain that I have a medical condition and I need to sit down. They understand and are usually happy to sit down too (people tend to forget how long they've been standing throughout the day).

Things I'll be adding to my Medical Backpack for the Summer:

  • Quick cooling towel

  • Extra hydration powder

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