Today is Mother’s Day. Having a chronic disease affects the people around me as well as me. It is particularly hard on my mother. These things are not supposed to happen to your children and it is devastating to her. I feel very sad about that. We all soldier on together.
I have Inclusion Body Myositis (IBM); a rare and degenerative muscle wasting disease. It is an autoimmune disease with my symptoms starting when I was 45.
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 so the medical profession provides a diagnosis rather than thinking it is part of the aging process.
What’s it like?
- I have 80% muscle loss in my quadriceps. I have progressive weakness in my arms, hands, neck, and core.
- One masters the Art of Tripping on FLAT surfaces.
- I avoid ALL stairs and look for ramps when out.
- Having to have someone cut my food in small pieces so I don’t choke on it. Dining out is not like it used to be. We look for restaurants that have high top tables and chairs so I do not need to be pulled up from them. Having a scooter gives us more options as I can pull into a table and sit in the scooter.
- Giving up driving.
- Needing help with dressing and showering.
- What drops on the floor stays on the floor.
- Having to focus on every step you take so you don’t trip. Each day at any moment I am one step away from a fall.
- Having to deal with extreme fatigue. Managing with far few “spoons” that the average person. http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/
- Having to ask someone to tie your shoe or avoiding ties altogether. This is particularly ironic as I tied little shoes for 28 years as a Montessori teacher! I have stopped wearing socks as they are too hard to get on. Even in the cold New England winters!
- Not being able to get off the ground without someone to help. I am thankful for the local Fire Department who do a “lift assist” when needed. We learned at The TMA conference to tell them that I am like a quadriplegic and unable to help in any way. I have had IBM falls at least 20 times. Falls come out of the blue (although the serious ones where I broke my kneecap and hit my head and got a huge purple eye for 2 months happened when I was overtired) and I fall like a ragdoll.
- Battling 24/7 to stay mobile as long as possible. I swim and do physical therapy exercises to keep what little strength I have.
- Battling to get on and off the toilet every single time at home and hardly using the public toilets because they are way too low.
- Having to learn how to do everything with intent/focus.
- The average hospital is not aware of the disease. I had a c-scan in the ER once and they were amazed by how floppy I was.
- I look very healthy and well and you can’t tell there is anything wrong until I try to move.
It has been 12 years of myositis for me. And yes it SUCKS! I am two weeks shy of my 57th birthday. It’s been a wild ride and continues to be. I am one of the lucky ones, however. I have a wonderful partner, a very loving family and many amazing friends. We started a support team for me after we attended our first TMA conference where we got the idea from another IBMer. My Team SooSoo (the name given to me by my niece when she was two!) is invaluable. I have 130 members far and wide. They each help me in different ways. I send out Team SooSoo updates every few months to keep them in the loop and to educate about myositis. I am blessed by so much love.
I am a former skier, swimmer, biker, tennis player and camper. I now use a rollator in the house and a scooter outside for long distances. I can no longer drive, shower or dress independently. I still swim regularly which I love. (albeit entering the pool with a lift and walking and stretching as I can no longer swim lengths due to arm weakness).“Be Like Water” is my motto. As my partner is an avid skier we decided to have me try adaptive skiing this winter and it was AMAZING!!!! It gave me the confidence to start having PT and OT. I go to an excellent new facility with therapists who know what IBM is! We are all learning from each other about this beast named IBM!
My partner Ronnie and I continue to have fun. Our philosophy is “do more of what makes you happy” and “what are you waiting for?” We met an older couple one day at the beach as we were struggling to get down to the shore with all our equipment. They said, “we have learned that is it hard work to have fun BUT IT’S WORTH IT!” We travel and participate in life with far more mobility equipment then we used to but we still do what we can!!
Life is still good with IBM!
Author: Suzie Coughlan