tl;dr: I am feeling (slow) progress. I am noticeably better than I was at my worst. But I still have LC. I still have brain fog and still can't work full-time. But I do have a little bit of hope that I am gradually healing.

Since today is precisely the 18 month mark for me, I figured I'd post a quick update both for my own reflection and for others to see what the course of one person's illness can look like.

Summary and overall points:

• I consider myself "moderate".
• I am not severe as I've never been bedbound long-term (outside a few rough stretches early on where my joint pain would last for hours and I'd be curled up in bed).
• I am also not mild, as it's been bad enough such that I cannot work full-time (I was a senior software engineer, a job that requires hours of intense concentration day after day). I have been working a part-time, fully-remote freelance gig, which has been an amazing find.
• I believe the cause of my LC was the combination of a 3rd covid infection in the summer 2023 wave plus -- crucially -- a lot of stress and exertion at that time when I (in retrospect) should have been doing hardcore rest in the weeks after the infection. Instead, I was doing nerve-racking dental work, some local travel, etc.
• As well, I believe I had what I call a "proto Long Covid" -- inklings of stuff like shortness of breath and fog brain stemming from my 1st and 2nd infections, but it'd only manifest during times of extreme fatigue and stress

Current status:

• At my worst, in the first few months, I had symptoms such as: hours-long intense brain fog after even simple stuff like a 10 minute online chess game or a 30 minute email writing period; joint pain so bad that I would nearly vomit that went on for hours at a time; lots of heavy-limb fatigue, some days when I wouldn't even take a short walk outside (and I'm a BIG walker normally). I'd have scary air hunger after walks in the cold air last Dec/Jan. I would regularly have days-long crashes. I'd get winded from vacuuming a room.
• NOW I can do complex mental tasks such as my beloved Factorio video game for hours a day and trigger only mild brain fog that is usually gone the next day (I know I should pace better and not even get to that state, but it's hard to not do things that are fun).
• NOW I can walk in 40 F air for a 15-25 minute walk with only mild shortness of breath. I am even doing (very!) light exercise in the mornings. I regularly do all my house chores with little issue. It takes more to make me winded, such as a longer lawn mowing session or something. My overall energy level is just better.
• My joint pain symptom is mostly non-existent, appearing only on occasion, such as during stormy weather.

The things I believe have helped the most:

• Time, simply the passage of time. The body's natural slow healing. This is the one common factor I've observed in almost all the LC stories I've read. We all differ in our approaches, but time is the reliably common variable.
• LDN. Game changer for me. I'm on 1.5 mg. I noticed an immediate boost in my energy (I think because of cortisol regulation). A huge change in the joint paint. And as for brain fog -- not sure? subtle at best?
• A Fitbit to monitor my heart and sleep. I keep my heart rate below (220-age)*0.6 when out on walks. And the Fitbit can tell me stuff like HRV, which I've found nearly perfectly correlates with my symptoms; it tells me to back off if I'm stressing out too much or over-exerting.
• Guilt-free rest. I was a Type A before LC. This is another thing I see in a lot of LC stories. Many of us are too hard on ourselves, aren't good friends to ourselves, were big people-pleasers and/or career obsessives.
• Pacing. HUGE, huge helper. Pacing prevents crashes. Preventing crashes allows for healing (in my view anyway)
• Sleep hygiene. For the first ~8 months (?) of my LC, I would get middle-of-night insomnia wakings even with good sleep hygiene. So I'm not saying it's easy. But when I can remember to not play with my phone in bed/etc., a good night's sleep makes a big difference. Good being a relative term here. I was lucky enough to have Fitbit sleep data from years before my LC and it showed an amazing difference: I could get loads of REM and deep sleep even during 5-6 hour nights. Now I need 8-9 hours to get anywhere close. But I believe sleep is important in healing so do everything you can there. Dark room, perfect temperature, doing relaxing/calming activities ~45 minutes before bed, etc.
• Realizing I'm in it for the long-term. Not rushing the healing marathon. (I am very lucky here that I had lots of savings to live off when I got LC. I know not everyone is as lucky.)

Things that made little or no difference:

• Supplements / vitamins / diet. I have experimented plenty with that stuff. Maybe not as much as some here. But plenty. And I have noticed zero difference. Of note: I believe I am not having the MCAS subvariant of LC. So YMMV. I know some people are helped a lot by a low-histamine diet/etc. But that was never the case for me.
• The medical system / doctors. I won't go into depth here as I don't want to get my post deleted for Rule 10. But suffice to say: aside from the LDN prescription, I had little help from the medical establishment and even got bad advice from it.
• Forcing myself to get out of bed a certain time, trying to exercise on a schedule, any kind of forcing/forceful activities like that. Or putting myself on a timer ("I have to be better by X date"). Instead, LISTENING to my body and believing it and being a good friend to myself have been the biggest things.
• Friends, the public, etc. -- 95% of people are utterly clueless about long covid and chronic illness and they just don't understand, no matter how well-meaning.
• Meditation. Now I say this as someone who's a fan of meditation and has had profoundly calm, deep, euphoric experiences in years past. But with the LC my concentration just isn't want it is normally so I can't "force" meditation like I used to be able to do. That said, I do still have a routine I do and it does help a little when I'm able to settle down and do it. But just as I don't think you can purely rest your way out of LC or exercise your way out of LC, I don't think you can breathe / meditate / yoga your way out.

tl;dr: I am feeling (slow) progress. I am noticeably better than I was at my worst. But I still have LC. I still have brain fog and still can't work full-time. But I do have a little bit of hope that I am gradually healing.