IBM and Me, by Mary Jane

Mary Jane shares “IBM & ME” for Myositis Awareness Month and MSU’s #MyositisLIFE project. 

I have Inclusion Body Myositis (IBM); a rare and degenerative muscle disease. It is an autoimmune disease with symptoms starting when I was 50. I’m now 72.

It’s an “orphan disease” which means it affects fewer than 200,000 people nationwide, and therefore is often ignored. Those of us with “Myo” want awareness raised and so the medical profession provide a diagnosis rather than thinking it is part of the aging process.

What’s it like?

  • One masters the Art of Tripping on FLAT surfaces!
  • Avoiding ALL stairs and looking for ramps when out!
  • Having to cut your food in small pieces so you don’t choke on it! And don’t forget dining out is not like it used to be. It is embarrassing to choke!
  • What drops on the floor stays on the floor!
  • Having to focus on lifting your toes 24/7 so you don’t trip
  • Having to focus on every step you take. No gawking! It just is NOT allowed!
  • Having to deal with Cognitive Fatigue issues that develop as you get tired.
  • Having to ask your Caregiver to tie your shoes. Avoiding ties all together!
  • Not being able to get off the ground without something or someone to help. We are thankful for the local Fire Department who do a “lift assist” when needed.
  • A daily dose of antidepressant (small) to STAY POSITIVE.
  • Battling 24/7 to stay mobile as long as possible. My NuStep gets the credit!
  • Thankful each time I can rise from my already elevated seat unaided.
  • Battling to get on and off the toilet every single time at home and never using the public commodes because they are way too low. Oh, and needing the Caregiver to pull pants down and back up again!
  • Having to learn how to do everything with intent/focus.
  • The average hospital is not aware of the disease. And says “hop up on this table”. When in fact they need to know I am a quadriplegic.
  • Thankful for a cleaning crew to come every 2 weeks. Thankful your Caregiver loves to cook and smart enough to know when he has had it!
  • Showering and dressing is dependent on your Caregiver/Husband of 52 years.
  • Very sad not to be able to play with grandkids like I used to.
  • Very sad not to be able to cuddle with my husband.
  • Every single day having to motivate myself to keep on keeping on!
  • Bedtime involves being tucked in. Waking up involves the reverse!

I want to make this very clear, I will not allow myself to become a VICTIM, I am a Myositis Warrior. I set the tone for my day, not Myositis. I often feel like I am the Luckiest Person In The World with Inclusion Body Myositis because I still have my mobility, & because of my husband/Caregiver, Dick is totally devoted to his position.

Thanks everyone, please share this Post with your friends & family, we need your help spreading Myositis Awareness.

Author: Mary Jane




Myositis Support and Understanding Association (MSU) is a patient-centered, all-volunteer 501(c)(3) nonprofit organization Empowering the Myositis Community. Founded by Myositis patients, for Myositis patients, MSU provides education, support, advocacy, access to research and clinical trial matching, and need-based financial assistance.

View more information: Myositis Support


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