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| I got out on a local walking trail today! |
Sorry I've been so absent from the blog; I was pretty wiped out after the holidays. But I have good news! After three months of being badly relapsed with my chronic illness (ME/CFS) and stuck on the couch, I am starting to come back to life. The last two weeks, I had some better days but was very up and down: good day, bad day, good day, bad day, etc. This week, I have finally turned the corner. Today is my fourth good day in a row, so I don't think this is a fluke. I seem to be finally coming back to life.
I left the house three times this week, after months of being stuck on the couch. One of those was a trip to the orthodontist to get Invisiline (at age 59!), but even that was a big thrill. I ran a few small errands in our little town, and it felt so good just to be out in the world again, in my little red car, singing along to the radio, and seeing people besides my husband! And today, I got a long overdue haircut and ran into an old friend I hadn't seen in over 10 years!
For the last two days, after several days with no flu-like aches, I cautiously began walking again: still tiny walks of about 15 minutes, but I left our little cul-de-sac! Such a thrill 😀 And today, the temperature went above freezing for the first time in over a week, so my timing was great--that sunshine felt so good.
This is the song that's been going through my head today (it's a weird video & some weird lyrics, so I'm not sure what the artist intended, but the chorus has been going through my head and making me smile):
What caused the relapse and why did it end? I have no idea! I wish I had some answers, but this disease defies logic (which makes me crazy--I like logic). The flu-like aches (a sign of immune activation) began on a random day in mid-October. My best guess is that I was possibly exposed to someone's random cold, and it triggered my immune system into overdrive for three months. I wear a mask in public, but sometimes my son or close friends come to visit (I realize I should be wearing a mask then, too) or (rarely) we eat in a restaurant where I have to remove my mask.
Or perhaps it was simply an increase in allergies triggering my immune system to rev up. My main allergies are to dust and mold, and the timing sort of coincides with spending more time indoors (and molds increase in fall with leaves on the ground), though we had a very warm, dry fall this year. Who knows? I wish I knew what the trigger was so I could prevent it next year because I am really sick of being at my worst during the holiday season.
For a while, I thought it was the same thing that caused a bad relapse at the end of last year: yeast overgrowth, which is chronic for me and many people with ME/CFS or long-COVID, due to the specific kind of immune dysfunction we have. But I got extra-strict with my diet (still doing a keto diet) and switched to a stronger prescription antifungal than I normally take for a month. My dentist even checked me out and said there was absolutely no sign of thrush in my mouth, so I don't think that was the cause this time.
Perhaps my treatments played some role in my improvement. I took two 5-day rounds of steroids in December, in a desperate attempt to calm down my immune system so I would feel better by Christmas. I actually felt awful Christmas Eve and Christmas Day, but I was also doing way too much with lots of people here. But maybe the steroids did eventually help calm down my immune system. I do think the aches were less severe afterwards.
I also played around with my immune treatments, wondering if instead of their typical moderating effect, they might be further over-stimulating my immune system. I went off low-dose naltrexone for the first time in about 16 years. I tried restarting it a couple of times, then gave up and just stayed off it (for now). [Though note that it helped me tremendously for those 16 years, so it is worth trying. Details at the link.] I also stopped my daily glutathione nasal spray for a week or two, but I have restarted it, which coincided with feeling better. It's all such a guessing game because SO many factors can affect how we feel (including random things like the weather).
I'm due for another increase in my thyroid medications (for hypothyroidism) after labwork showed my numbers still well below normal in November, but other than that, I plan to stay the course and not change anything else for now. Don't want to mess with success!
We are starting to plan some big road trips with our camper for 2025, but you know how it is with this crazy disease! Last year, I got COVID in July and had to cancel five campground reservations for a two-week trip we planned. So, we will make reservations and hope for the best.
Now that I'm feeling better, I hope to do a 2024 wrap-up, both here and on YouTube, like I usually do at the start of a new year.
How are you so far in 2025?
What are your hopes and plans for the new year (relative to health or anything else)?
Let me know in the comments below.
