My Story
I am not my inclusion body myositis (IBM). I am still me. I am just a me who has a degenerative muscle disease.
It’s ironic it’s the muscles: I have been going to the gym every day for the last ten years! Like all of us with IBM, I have a story of realizing something was wrong and finally getting a diagnosis.
Backstage the day of the competition.
In early 2018, my favorite physical trainer told me I should train out for the Dennis James Classic bodybuilding contest in the fitness masters 50+ category. I figured if she thought I could do it, I probably could. So, I began a harsh regimen of workouts and a super restrictive eating plan. I only had three months to get from my then-body to a body I’d agree to parade in front of strangers and cameras on the stage in a skimpy bikini and high-heeled shoes. I did as instructed, weighing food, working out, weighing food, working out, ad nauseum. I was 75 years old at that time. I practiced walking in 4-inch heels for months and felt I would not fall. I lost over 30 pounds and had shape and muscles, so I signed up.
On the day of the event, I got up at 3:00 a.m. and arrived at the preparation site by 4:00, where I went through makeup, tanning, and costuming. I weighed in at 138 pounds. The next oldest woman in my group was in her 60s, but even so, I took the 3rd place medal.
In mid-2020, I caught COVID-19 and was down for a week. Since everything was closed by the time I recovered, I worked out in parks with some of the other gym folks. It was a hard adjustment for me. The gym was not only where I hung out with my friends. Being physical felt like a part of my very identity.
I’d begun having swallowing problems in August 2019, and when they got worse a few years later, I wondered if the coronavirus had played a role. No one could give me any answers, even after running multiple diagnostic tests. The gym had re-opened, and I was once again spending a lot of time there. I told my trainer I did not feel as strong as I had been. She thought it could be aging and encouraged me to keep up the training I was used to. Soon, I was unable to hold a weight—even just five pounds—over my head for fear it would slip out of my hands and hit me in the face. It worsened, and the left hand became as bad as the right.
One day, a woman at the gym told me there was a great hand clinic in town that I should go to, but I waited for about eight more months before deciding to go. I just kept thinking that it would surely get better, that it was just normal aging. The hand specialist took one look at the complete lack of muscle and flesh around my thumb and my abysmal strength testing results and sent me to a neurology lab to try to figure it out. This was the turning point in my diagnostic journey.
The neurologist suspected IBM to be the cause of my weakness and gave me an antibody test to confirm. It took six weeks to get the results, but a high antibody number finally pointed to the cause of my issues. The neurologist told me it was not a death sentence, even calling it more of an inconvenience, and sent me on my way with a referral to a neurological clinic to connect me with a team to help me manage the disease. Due to some technical glitches, it was more than three months before I would finally get in to meet my team.
In the meantime, I began to research for myself. I refused to believe there was nothing I could do or that I should stop exercising altogether. I hired a personal trainer, educating her about the disease and asking her to help me continue to build the unaffected muscles and keep whatever strength I still had. I had to stop going to the gym, so I dropped my membership.
Finally, I had my first appointment at the neurological interdisciplinary clinic. There, I met with a nutritionist, speech/swallow therapist, occupational therapist, physical therapist, and one of the top IBM doctors in the state. Now I am on the road to learning how to live with the disease, what things make it worse/better, where to find resources, and more. The doctor on rounds during the clinic ordered a muscle biopsy (the gold standard of diagnosis) so that I could join any available clinical trials. The results can take a month to come back and we certainly expect it to show IBM.
I was devastated when told I had a disease without cure or treatment. But I didn’t let myself stay in that despair long. I thought there must be something you can do to delay the timeline. When I told my family about it, they told me I was strong and could beat this. Well, I intend to. I budget my energy. I ask for help, which has been a foreign concept to me until now. I hire professionals to do things I used to be able to do, like housework, so I can spend my energy on things that I enjoy.
We do not need to sit down and wait for IBM to take what is left of our abilities. We can ensure we’re fully engaged in living, doing all we can to stop or slow this disease. I enjoy each day more now, knowing that in the future, I may not be able to do what I’m doing now. Some days are hard, and I know there are hard days in front of me. But really, aren’t some days hard for perfectly healthy people, too? Our attitude about this disease is crucial. I intend to use my time left to connect more with family and friends, read the books I have been putting off, and go to the movie everyone is raving about instead of waiting for it to be on a streaming service. I will travel while I can and see the places I’ve missed.
I hope that if you’re reading this and either have IBM or love someone with IBM, you are doing what you can to embrace the present, using whatever abilities you have to squeeze some more life out of life and to give more of yourself to your friends and families. I also hope that you find this blog helpful or inspirational. We’ve been dealt a hand we were not expecting, and our plays are limited, but we are not our IBM, and we can keep a hold of our selves and share them with each other.
—July 2023
I like to think of what Gandalf says to Frodo in J. R. R. Tolkien’s Fellowship of the Ring when the hobbit says he wishes his troubles had never come to him.
“ . . . so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
