How I Discovered I had IBM at the Gym
Welcome to my blog, where I share my experiences living with Inclusion Body Myositis (IBM). It’s based on personal experiences and is not meant to provide medical advice, which you should always seek from your care team. It is, though, a place for us to come together as a community and support one another by sharing our experiences. There is not necessarily any rhyme or reason to the topics I write about, other than how they come to me in my life. I hope that you enjoy the blog and find some community here, ideas, and/or inspiration. Thanks for checking it out.
IBM and Exercise
Healthcare Providers are truly amazing, but they can't possibly be well-versed in every rare ailment out there, including IBM, a perplexing disorder that wreaks havoc on muscles. It's a condition that often leaves us hearing those dreaded words, "You need to avoid exercise."
I've always been one to push boundaries, and exercising was no exception. Back when I was an avid gym-goer, hearing "no exercise" felt like a gauntlet being thrown at my feet. I accept your challenge, IBM, I thought, and defied that advice. I continued my rigorous HIT (High-Intensity Training) classes. The aftermath of those workouts, though, was a harsh reality check. I'd be left utterly drained, and the pain would linger for days. Undeterred, I brought in a personal trainer from my gym, hoping they could help me find a way to keep moving while respecting my body's limits.
We explored various avenues, thinking creatively about how to stay active without aggravating my condition. It didn't take long to realize that the HIT classes had to be left behind. My gym’s trainer did help me workaround not being able to lift dumbbells or grasp the bars on the weight machines, but that was not getting me the results I wanted. So, I hired a personal trainer outside the gym. Together, we transformed the little workout room in my condo into our fitness haven. With resistance bands and exercise machines, we discovered exercises that my body could handle. I was hopeful that this would be the turning point, a chance for me to regain my strength.
But like all paths, this one was anything but straightforward. Contrary to what I hoped for, I found myself constantly battling exhaustion. It got to the point where I had to skip every other session just to cope. I didn’t know it at the time, but I was suffering from severe anemia from a bleeding ulcer. It took many more weeks before I was diagnosed, and this after a trip to the emergency room (a lesson in admitting to my care team that I’m feeling awful, instead of trying to hide it so I can keep on working out).
Meanwhile, in my search for an exercise modality that would work well for me, I started to consider water aerobics. The promise of low-impact exercise held allure, though I did have to overcome my feeling that if I needed water aerobics, I must truly be an old lady. Anyway, there was another hitch - I didn't have a partner to join me in the pool and make it fun. Nevertheless, I started walking the length of the pool two or three times per swim session, the resistance of the water adding a challenge beyond my morning walks. Now I'm delighted to share that I spend time in the pool every evening, often joined by my ever-supportive spouse. The water's gentle resistance provides an unexpected source of solace, even on days when I'm too tired to do anything more than float.
Once I was established with my care team after a clinic day at the Neurology multi-disciplinary center in Phoenix, I was able to get fresh insights on the exercise question from my physical therapist. Considering my unique challenges, she recommended scaling back on weights and bands, suggesting that my everyday chores might suffice as exercise. This new perspective gave me pause. She also cautioned against excessive walking due to my struggles with dysphagia and weight management. (My difficulty swallowing [dysphagia] has been pretty severe–more about that in a future post– and for a while, that caused some weight loss that was not ideal.) While I understand that my medical team is highly trained and experienced, it’s never easy for me to hear that I need to slow down or take it easy. It goes against my very grain – I want to be ever achieving and progressing. But after talking with her, I decided to pay better attention to my energy levels, to honor them, to watch for sore days. Being sore was of particular concern, she had told me. While healthy muscle breaks down and builds up, breaks down and builds up, causing soreness, people with IBM don’t do the build-up part of the process, so any breakdown is detrimental. She said I should exercise to the edge of sore, but never all the way to sore, and that if I was sore the day after exercising, I would know I had done too much and needed to scale back. It seemed reasonable to me.
Living with IBM is a puzzle, and I was determined to solve it piece by piece. After experimenting with dietary adjustments and finding innovative ways to manage my dysphagia, I was finally back to my ideal weight. As my anemia improved, I went back to walking an hour each day with my neighbor. Every step felt like a small victory, a triumph over the constraints IBM tried to impose.
These principles remain steadfast:
Attitude Is Everything: A positive mindset is a strong ally when things are tough.
Embrace Daily Joys: Experiencing what you love can light up even the darkest days.
Cherish Relationships: Expressing love and gratitude is a salve for both you and others.
Hobbies within Reach: Pursuing passions tailored to your abilities infuses life with purpose
The Gift of Giving: Volunteering can give a sense of fulfillment and being capable.
A piece of advice for fellow warriors: Reserve your energy for actions that empower. Trade wishing and what-iffing for pursuits that support progress. Do whatever activities you are able to do to stay active, foster relationships, and revel in the things and people that bring you joy.
As always, thinking of Gandalf’s great advice.
“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.
