Things dermatomyositis has made hard

This has been absolutely excruciating. I know there are more painful autoimmune disorders out there (this has not been painful at all really) but it’s really impossible to convey just how awful it is to experience your body getting weaker and weaker, your muscles smaller and smaller, and your capabilities less and less, and be able to do absolutely nothing about it.

Fortunately now that I’m on high doses of prednisone the trend is finally beginning to reverse, and I can’t wait to experience these things coming back off the list and getting easier and easier! It’s already beginning.

  • Anything you need your arms and legs for. Spoiler alert: that’s pretty much everything.
  • Lifting my arms up to put a dish on the shelf, fix my hair, put lotion on my face. It’s amazing how heavy just your arms themselves are: we need a lot of muscle just to allow the body lift itself, a fact I never fully appreciated before.
  • Washing my hair. I skip it as much as possible because reaching the back of my head is stupid annoying.
  • Drying off. Who knew towels were so heavy?
  • Walking up stairs. Can’t at the moment without help.
  • Standing up off low chairs. I measure the height of everything against my leg before I sit on it because if it’s too low it’s impossible to get off without help.
  • Turning over in bed.
  • Raising my head off the pillow.
  • Getting up off the floor. Literally impossible. I can’t go anywhere alone or be away from my phone because if I caught my toe slightly and fell I would lie there forever.
  • Splashing my face with water. Weirdly hard because my fingers aren’t flexible like they should be.

Pretty amazing how not being able to do these things gives you a whole new perspective on the rest of life though… I really can’t imagine getting worked up about a relationship or money or a job or anything else in the same way again: I’ll be way to busy being thankful that my arms and legs work.

One thought on “Things dermatomyositis has made hard

  1. Yes! It amazes me how a flare up can affect the smallest tasks like doing my hair, opening a water bottle, or even writing things down at work. I was diagnosed when i was 19 and I know there is way worse diseases I could have but I still have my self- pity moments. Good luck!


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