u/PrissyPeachQueen

Hi all! I'm back to celebrate the one-year anniversary of my recovery from Long Covid (ME/CFS, dysautonomia, mast cell disease, etc). If want the full story, here it is: This week marks 6 months of 100% recovery : r/LongHaulersRecovery

The tl;dr is that I watched a Dr. Sarno video on TMS and had a conversation with a personification of my Long Covid, which I visualized as a snake wrapped around my brainstem while I was really high a few years before. I explained to it how much it was hurting me and asked it to let me go, and it listened.

I've maintained my wellness by journaling (shoutout to Nicole Sachs), trauma release exercises, EMDR, and an uncomfortable amount of introspection. For the first time in my life, I actually believe that I am in the driver's seat of my body.

I'm generally in the Cell Danger Response camp of ME/CFS. I will never know why I was sick, what was happening in my body, or why talking to an imaginary snake made it go away. BUT, it did, and I'm here to share the good news that I made it an entire year without PEM. My hypermobility is much better too. My baseline pain level is a 0, which hasn't been the case since... childhood?

I dealt with really severe anxiety, panic attacks, and night terrors for the first 9 months of my recovery. I'm happy to report that over the last couple of months, this has largely subsided. I credit it to EMDR and some absolutely feral trauma releases. I don't get riled up as easily. Irritations roll off me more readily. I don't ruminate as much, and I don't worry about perfection anymore.

I got COVID over the holidays and had some symptoms flare up for a few weeks. Not PEM or severe fatigue, but some autonomic stuff and a few allergy symptoms. I recovered smoothly. With it in mind that Long Covid happens when the sickness cycle doesn't complete, I drew a bunch of circles throughout the days and did yoga routines that start and end in the same position. I also accepted that I couldn't strong-arm my way out of being sick, and that I had to just let go of control and allow it to do its thing. Weird, yeah, but it worked; that's been the case for pretty much everything else I've done.

I'm tapering off of levothyroxine for my idiopathic hypothyroidism that onset while I was sick. So far, so good.

I had some (probable) mast cell issues before COVID, and those have flared up on 3 occasions over the last year, but they quickly returned to my baseline of no symptoms. I don't have to restrict my diet at all. I continue to take Xolair because sometimes physical and emotional stressors can flare up symptoms. It's infrequent and still profoundly less problematic than it ever was before I got COVID, but I like having the guardrails. Xolair doesn't prevent reactions, but it blunts the severity of symptoms. It's not the reason I'm in remission. It just makes my life a little less bumpy, and also I love that I don't have seasonal allergies, so anyone can pry it out of my cold dead hands.

I'm re-reading The Mindbody Prescription by Dr. Sarno this week. I like having the reminders and it's kind of a comfort book at this point lol. I also got a celebratory fro-yo with a grotesque amount of toppings because that was one of the things I was most excited about being able to eat again last year.

I'm doing great :)

So I'm coming up on one year of recovery from Long Covid (me/cfs et al) and I still mask with a n95 pretty staunchly, although I'm much less stringent than pre-recovery. I'll take risks sometimes for important things, but I don't go out to restaurants or bars regularly.

I honestly don't see myself never masking on planes, at hospitals, in grocery stores again because I just really like that I don't get sick lol (also for some of my personal political leanings). It's also important to me to protect other people who care about this and still mask. But I'm honestly really tired of the level of stringency I'm at, especially in social contexts.

I've gotten covid since my recovery and it messed me up for about a month. I did fully recover again afterwards, but it was a very unpleasant and stressful experience that I'm reluctant to stop avoiding. After what I've been through, I want to spend as few days sick in bed as humanly possible. I also would feel pretty terrible if my not masking was the reason someone else went through this.

I also think it's not great for my identity to still be the mask person everywhere I go, and honestly it just sucks to miss out on things, or to be visually the odd one out. It's a hard balance.

How are people navigating this? No judgment, just curious:)

edit: for context i have been pretty hard-core covid conscious since 2022