THE DIFFERENCE A YEAR MAKES
One Year Later, Again
One year has gone by, again. What is different about my life and my disease? Good question. I had to think about it for a while before writing this post.
Looking back
A year ago today, I was headed into three months of hospital visits. One was to get a monitor to see if I had atrial fibrillation (AFib), one was to get a pacemaker, and one was for a concussion after I fell off a machine at the gym. Two more followed because the pacemaker surgery had complications. It took me until March of this year to feel like I could cope again and to regain some strength.
Where I am now
Today I feel stronger than I ever did before all those hospital visits. My pacemaker is working great, and I have had only one small episode of AFib in all this time. I still go to Hyperbaric Oxygen Therapy twice a week, which I believe has been instrumental in feeling better, especially around swallowing.
I credit the physical therapy I had afterward. I learned practical things I use every day. Housekeeping tasks like making the bed are a great way to strengthen the muscles you rely on constantly. Wringing out the dishrag and washcloths keeps my hands getting better at opening screw tops. I can make the coffee again and get the tops off of most things. Not water bottles, though. The plastic is so thin that if I succeed, water shoots out, and if I don’t, I just crush the bottle.
My exercise routine
I have also started a new kind of weight training at a place called E-gym. AI built me a program using the 11 machines in the system. A wristband checks me in at the start, and I try to do all 11 machines five or six days a week. The program first measures my height and weight, and each machine has a strength test before I begin. The test repeats after every six days of exercise so the weight on each machine can be raised or lowered.
The Myositis Association information now recommends 20 to 30 minutes of resistance training five days a week, and this has been an easy way to get it done. Some days I go in both the morning and the afternoon. I’m not really building muscle so much as keeping the muscle I still have.
The screen on the E-Gym machines looks like a video game, so it never gets boring. It reminds me of PAC-Man: as you exercise, you “eat” the little circles on the screen, which keeps you at the right speed for the right length of time.
The book
The other big change is that I finished writing my book, The Life That’s Still Mine. It is about the journey I’ve been through with this disease and how I’ve made it this far with a positive attitude and the curiosity to try anything that might help. Don’t get me wrong, I still have bad days. But instead of focusing on what I can’t do, I try to focus on what I still can. I’m really excited to share it with you as soon as it arrives from the printer.
What hasn’t changed
My blood pressure has not improved. It is a bit better controlled with the pacemaker and medications, though I wish I could get off the medications.
Family
My youngest daughter moved to the Northwest, so all our collaborating now happens over Zoom. I’m happy she gets to live where she loves and has an interesting job. Over the last year, both of my daughters have thought it would be a good idea to live close to me in case of emergencies. My oldest daughter still lives nearby, and we go to E-gym together many days.
One more thing
I’m also learning to use AI to help with tasks I don’t enjoy. Eating right and exercising aren’t much fun either, but I guess all those doctors who tell me to do them are right.
I still have bad days, but I also have a pacemaker that works, a daughter to work out with, and a book out in the world. I’ll take that. And I am curious what next year will bring.
“All we have to decide is what to do with the time that is given us.”
— J. R. R. Tolkien
We have a bookshop store HERE where you can find books Linda has read, or that look helpful for folks dealing with chronic diseases of various kinds.
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.
