Day 7 of #MyEDSChallenge … comfort


I’ve always valued comfort but only in the last few years have I been able to embrace that as something I need (rather than framing it as self-indulgence). Comfort is something that, to be honest, is hard to come by in my body. I spend most of my time just trying to minimize discomfort but I don’t spend a lot of time on the other side of that line. I was laughing recently with someone about how I’m a natural pessimist, but it’s not hard to see why, given the relationship I’ve had with my body!

I choose clothing that is comfortable and not too fussy, especially shoes. I wear Salomon trail running shoes virtually all the time—I have a winter pair with gortex lining and a summer pair with mesh in the toe box. They have a wide sole flare to minimize me rolling my ankle, good lacing to keep them secured, and a quick lace system so I can get them on and off quickly without tying laces. During COVID I discovered pull-on elastic jeans and “pajama jeans” (pajama pants that look like jeans).

I’m fussy about having a recliner or couch with an ottoman and have always dreamed of having a chaise lounge! I need to be able to put my feet up or even lay down entirely.

I really try to focus on small pleasures and be really present for them even if they last only a few minutes. A cup of coffee or hot chocolate, or the birds singing and the squirrels playing in the trees outside my window bring me so much delight! Yes, my pain is real, but all these other things are also real and a lot of the time I can choose where to focus my attention, or allow both sensations/experiences at the same time.

I love my neck-shaped heating pad, and I love the seat heaters in our car!

I also love my Bose noise canceling headphones—they are so soft and don’t press into my head (which hurts my ears and my head where my glasses side pieces sit), and I love turning up the music and dancing in the kitchen or doing a little chair dance at my desk when I don’t want to stand up!

Another area of comfort is allowing myself to choose foods that are appealing to me, either for taste or texture. This does mean I don’t usually get my “5 a day fruits and vegetables”, but a happy mouth and a happy digestive track are also important parts of life!

@ehlers.danlos

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