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Friday, August 02, 2024

Chronic Illness Vlog: COVID and ME/CFS - Small Improvements, Small Joys


It's now been three weeks since my COVID infection struck, on top of ME/CFS, and I am still struggling. Many of the viral symptoms have improved (though I still have a lot of mucus), but I am still severely lacking in energy and stamina. I am now able to sit up for short periods of time most days, so that's an improvement. But, I am mostly still living life from my "couch nest," lying down a lot, and sleeping more than usual.

My writing energy is still very limited, but I did put together a vlog last week, so I thought I'd share that with you. It's hard to see any changes day-to-day because these last three weeks have all felt pretty much the same (I'm sure many of you can relate!), but when I look back at these video clips covering 8 days, I can definitely see some small improvements, which is encouraging. I also shared some moments of joy and even fun with my husband and son. You can watch the video on YouTube or I'll include it below:

 

I did get some good news yesterday. I checked with my ME/CFS specialist in NYC to ask if she or her colleagues (she's part of the ME/CFS Clinician Coalition) knew of anything to help someone with ME/CFS with recovery from COVID (when I got it in 2022, it took me six months to recover back to baseline). I didn't expect much, so I was surprised and thrilled when she replied immediately to say that, yes, there were some treatments they have been using for patients that get COVID that have been helpful! Yay! 

She called in a prescription for me to a compounding pharmacy for oxytocin nasal spray, and I ordered a powdered combination of two amino acids, l-ornithine and l-aspartate, from Amazon. I won't received either one until the end of next week, but once I start them, I will let you know if they help. And I need to investigate and research both a bit further, but here is one paper on oxytocin and COVID (from June 2020!). No clinical trials yet on the two amino acids, but Open Medicine Foundation researchers released a preprint just a month ago of their data analysis showing that these two amino acids might help ME/CFS and long-COVID. Cutting edge science! Reason for hope.

P.S. I was trying to work on my monthly newsletter for my e-mail list today, but I just didn't have the energy. I'll try to get it out next week.

 

Have you had COVID? How long did it take for you to return to your usual baseline?

Let me know in the comments below.

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