It’s been over a month since I posted last. I started a new job and I’ve been devoting most of my energy to that. A few weeks ago I passed the 3 year anniversary of being diagnosed so I’ve been reflecting on the changes I’ve seen over the past 3 years. It can feel so frustrating to go day to day and week to week without seeing any discernible progress but looking back on the scale of years I can see that I have come a long way.
Before I was diagnosed I spent about 5 years with significant symptoms and no idea what was going on. My first symptoms began much younger around age 13 but they did not seriously start to impact my life until I was 22. The year before being diagnosed I was acutely ill with C-Diff and Salmonella back to back, not a good combination. That led to deconditioning, which just made everything worse. After that my symptoms were bad enough that I really couldn’t function, which is what led me to try again at figuring out what was going on. Luckily a cardiologist recognized my POTS enough to send me to an EP who diagnosed me and has since been treating me.
I remember sometime in the first week after my tilt table test, which was the last confirmation after several other tests, I started taking a medication that has been helping me ever since. That first day taking that medication I was absolutely amazed that I could take a walk (2 blocks) and take a shower on the same day. My energy was so low and my symptoms so uncontrolled that doing those two things was huge.
That spring I started an exercise program called the Levine Protocol. It called for strength training with machines and cardio in a horizontal position (rowing machines, recumbent bikes, or swimming). Those first few months trying to do that protocol were brutal. I was working 30 hours a week, and looking back I don’t know how I was doing that. Then my husband and I would go to the gym. He helped to keep me motivated and give me pep talks as needed, which was often.
The protocol requires you to monitor your heart rate for the cardio portion and keep it within certain ranges. I found this hard, especially in the pool since with a normal crawl stroke my heart rate would spike up much higher than it was supposed to be. Eventually I found a stroke that was about the right amount of exertion to keep my heart rate in the right range. One time I was still wearing my heart rate monitor in the shower after swimming and my heart rate got all the way up to 192, just from standing in the shower. For reference that’s about how high the doctors got my heart rate to do a stress test.
I also had trouble with the strength training on machines, primarily because I was easily injured. I was later diagnosed with hypermobility which, combined with deconditioning, explains that. From there I did several rounds of physical therapy and eventually aquatic physical therapy and developed land and water options for exercising that didn’t cause injuries. As time went on I was slowly building my strength back up. This process however took years, 3 so far anyway.
Let me jump ahead to the present. The last few weekends I’ve had a lot of visitors in town, which tends to tire me out and require some rest time afterwards. Despite that however today I worked 4 hours, went to the gym and did a full body workout in the pool, showered, and now I’m writing a blog post. The most exciting part is I don’t feel terrible at all. I feel pretty good. It’s so hard to view progress on a year to year basis when I have to live day to day with my symptoms but I’m so grateful for the progress that I’ve been able to make (with a ton of help from family, friends, and doctors) over the last 3 years.
The last month or so I have felt about how I did before the C-Diff and Salmonella, and that’s a significant milestone for me. I’m going to continue to work on my health. My goal has always been to see how healthy I can be with the understanding that I have chronic illnesses and I will most likely never be cured of them. I’m excited to see what the future holds, and that’s not a sentiment I’ve always felt.
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