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What am I actually supposed to be doing to get better?
I’m having a hard day. I *think* that I might be getting better (my resting heart rate has been decreasing over the past two weeks, I seem to have less tachycardia in response to mild exertion, and I haven’t had a classic PEM crash in two weeks), but I honestly don’t have any idea what I may or may not be doing that is helping. I did spend all of last week in bed sick as heck with a cold, so maybe all that rest helped? I am driving myself crazy trying to figure out the pacing “sweet spot” of not pushing too much vs. being so inactive that deconditioning becomes more of a factor than the actual Long Covid. I am so scared of another crash (the last one lasted two full weeks and was awful), but I am also wondering how I will know when it’s okay to push a little more, start to try to get back to “normal”.
My doctor is supportive in the sense that she confirmed that I do have Long Covid, but I really have had no other guidance at all in terms of what I am supposed to be doing. She said that there are no treatments, so I have essentially been left to recover without any guidance on how it will look and feel.
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I was helped tremendously with getting my tachycardia (POTS) under control by doing seated exercise. I rode my recumbent indoor bike slowly and I lifted light weights from a seated position. I eventually was up for a neighborhood walk. My heart rate always was quite high when I started (110-120) and even got up to 140 walking slowly. I could last about 20 min max. I kept on with it and eventually my hr mellowed out over weeks and I got stronger and stronger. Took me about a year, now I am able to do stairs and hills and am back to my 3 mile walks 3x a week. My POTS stopped after about a year as well. Sometimes it will flare a bit, but not often and definitely manageable. Drinking a lot of water and eating a lot of salt helped me keep my fluid levels up to manage the POTS. I had low BP, so extra salt did not bother me. 500 mg Vitamin C daily also helped. This was suggested to me by a natural doctor who was also an MD (Loma Linda) at the Lam Clinic. I tried them for a bit, some things helped, some didn't, then stopped going. I have found when I get really stressed, the Vitamin C does help - something about being a catalyst for "soothing" your sympathetic (fight or flight) nervous system.
Also, one thing that helped me when I was bedridden or fatigued was passing the time playing video games. The one game I loved is Animal Crossing: New Horizons (I played it on my tv through a Nintendo Switch console). The game allows me to run around outside, plant flowers and vegetables and tend a garden, go shopping for clothes and goods, pick up seashells around the seashore, go fishing, go on vacations, talk and visit with friends, enjoy holidays, interior decorate and so many other things. There is only so much tv you can watch when you're sick. This game helped me feel like I was actually "living" because I was "doing things". Highly recommend.