When I found out I had a rare disease, it would have been easy to sit down, feel sorry for myself, and wait to get worse. After all, that's what happens when you hear the words rare disease, isn't it? You start wondering what you should stop doing.
Many medical professionals who aren't familiar with Inclusion Body Myositis will tell you to stop going to the gym. Be cautious with exercise. Don't overdo it. And, of course, there is some truth to being careful. That's true with almost any health problem—and especially as we get older.
But here's what I've learned: You have to be curious.
Curiosity may be one of the most important tools you have when you are living with something that your doctor doesn't see every day. Research is being done. Information is available. But somehow, the research doesn't always make it into the doctor's office. I can't tell you how many times I've suggested to a medical professional that they Google IBM and read about it.
Sometimes I even bring along a copy of IBM for Physicians, published by The Myositis Association, that I picked up at a conference. I've handed doctors a card with my blog information. And I am still amazed at how few actually sit down and look at any of it. Then I come back for my next appointment and have to start all over again. "Well, I have Inclusion Body Myositis..." And then I explain what I know about my own disease - Again.
Most of the medical professionals I encounter simply don't have much experience with IBM. I don't blame them. It's a rare disease. They can't possibly know everything about every rare condition. But that means I have to be my own advocate. Sometimes I have to educate the person who is supposed to be educating me. And sometimes I have to do it more than once.
From everything I've learned, my current approach includes regular exercise, physical therapy focused on things like balance and walking, and making sure I get enough protein. The important point is that the advice for someone with IBM has changed over time, and it is important to ask questions and make sure your medical team is working with current information.
If they aren't, I may have to point them toward it. That's part of the job.
The Effort Part
Every weekday morning I get up at 5:00. That is not because I am naturally a morning person. I get up because my neighbor is going to be standing outside my door at 6:00 waiting for me to go walking. Knowing someone is waiting for me makes a difference. Sometimes, frankly, that is the only thing that gets me out of bed. I don't want to let her down.
I also have a commitment with my daughter to go to the YMCA five days out of seven. She parks outside my house and waits for me to come out.
There is something powerful about having a teammate. On the days when I would really prefer to say, "Not today," somebody else is there to make sure "not today" doesn't become "not this week."
I am lucky. I have people who help me keep going. At 81, I am still walking. I am still swallowing. I still have enough balance to get through my day—as long as I am careful.
None of that happened by accident. It takes effort. Every single day.
Goals Change
Before IBM, my goals were different.
I wanted to have enough money to travel the world. I wanted to see places I had never seen, both in the United States and abroad. Then IBM came along and changed the playing field.
My goal now is to stay out of a wheelchair for as long as I can. And I want to live another 20 happy years doing the things that bring me joy. That's a pretty big goal. It just looks different from the one I had before.
My travel schedule isn't exactly what I once imagined. Instead of two weeks in Europe, I may be making two trips a week to physical therapy. I have regular appointments with doctors, physical therapy, and massage. I don't mind the massage trips at all.
And when I can't travel, there are always travel videos on television. It's not the same. But it is still something.
Don't Give Up the Goal. Adjust It.
I think this is the part that applies to more than IBM.
As we age, or as our bodies change, we sometimes have to change the goals. That doesn't mean we have to give them up. Maybe the goal you had ten years ago isn't possible today.
What is possible? What brings you joy? What can you still do? What might you be able to do with a little help, a little adaptation, and a whole lot of effort? Spend some quiet time thinking about that.
Then choose a new goal. And commit to it. Because anything worth having has always required some investment of time and effort.
Think about something you really wanted in your life. A career. A relationship. A home. A degree. A family. A hobby. A healthier lifestyle. You didn't get there by sitting on the couch waiting for it to happen. You put something into it. And when you finally got there, it felt pretty darn good.
So that's where I am today. My body has changed. My goals have changed. But I haven't quit. I'm still curious. I'm still learning. I'm still asking questions. I'm still walking. I'm still going to the YMCA. And I'm still putting in the effort.
Sometimes the outcome isn't the one you originally planned for. But that doesn't mean it isn't worth pursuing. Oftentimes, you discover totally new things you would never have known about yourself.
If you’d like, share in the comments about a goal that you changed that turned out to be really fruitful. See you. next time.
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.
“All we have to decide is what to do with the time that is given us.”
