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  • Writer's pictureKathleen Burnard

Day 19: Things in My Room That Just Make Sense (with EDS)

I think this framework is a TikTok thing? I am Old in internet years, and do not understand the TikTok trends of the youths, so I do not know what I am actually supposed to do to fit into the format except that it involves borderline culturally insensitive "Italian" hands because the kid in the first video was describing his actual Italian family? So? I will not be attempting that?


Instead, here is a photo list of things in my room (or general living space) that just make sense...with EDS. Am I a boring old person? Maybe! Will this post be a confusing mess in a few months because a trend has faded out and I didn't understand it in the first place anyway so what's left is just a frantic 30-something trying to fit in and being, as the children say, "cringe"? No! Did I make myself "cringe" by saying "cringe" in the tone of Professor Snape trying to understand something like, oh I don't know, TikTok trends? Yes!


This metaphor got away from me. Here are some pictures. They are in my room and they make sense.


  1. Physical Therapy Corner

Okay, this isn't in my room exactly, but it is right next to my room. It's got everything I need to get through a daily PT session. As I advance through the textbook, the shelf gets more crowded. I never thought I'd be a person who owns home exercise equipment. I definitely never thought I'd be a person who's proud of their exercise area. And yet, here we are.


2. Rainbow Pens in a Rainbow Mug, Bourbon Maple Candle, Fucking Over It Candle

I fully recognize there's a lot happening here. But there's a theme! The theme is: Making Kathleen Happy. That's it, that's all there is to it. Sometimes that's an important and necessary part of EDS life.


3. The Bookshelf of Meds

Behold. It needs no explanation.

(Also, I Spy a giant bottle of lotion that I very highly recommend for sensitive EDS skin that's going through an MCAS flare or the like.)


4. Medical History Binder

It's divided by specialty and further organized chronologically, with a snapshot of the most important info at the front, as well as allergies and current medications. I take it with me to each new appointment and to the Emergency Department. That way everything is readily available and offices can photocopy whatever they need. Seen here with an excellent webinar from Allergy & Asthma Network.


5. Soft Lighting

Approximately seven million tea lights = far superior to overhead lighting. At least on headache days. Which is basically every day.


6. Wishful Thinking

I found this greeting card at a local bookstore and will never ever send it to anyone, but there are so many doctors I want to give it to. So many.


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