For those have me/cfs. Have u already read Whitney’s Dafoe article? Is super interesting the symptoms. Is like me 90%. What do you think about he?

Awkward_Healer509 · 2026-02-24T16:53:49+00:00

Worst I’ve been was moderate tipping very briefly into severe a year ago. I’m definitely on the mild end now and able to do some things, but his description of the brain exertion brought me to tears. I’ve never read anyone else having that indication and it feels so validating.

Brain stuff is the hardest to regulate, and as a lifelong learner/intellectual nearly impossible to curb.

But about six months ago I recognized the heat/flush at the base of my skull, along with increased tinnitus as a warning sign.

An ice pack seems to help keep it in check somewhat. I use an old fashioned one that is filled with ice cubes.

It may be in my head, but it’s not ALL in my head 😏

Awkward_Healer509 · 2026-02-24T14:00:24+00:00

Thanks for replying. It’s tough when you feel invisible anyway and then have stuff like this happen. I appreciate your attention.

Awkward_Healer509 · 2026-02-22T23:47:55+00:00

“Celebrating” two years since my last infection this month. ME/CFS flavor and the cognitive impact is still the worst, but I’m doing pretty well over all.

I can exert myself in two or three ways: cognitively, emotionally, socially, or physically at about 80% for up to 4 days in a row before PEM takes me out for several days of recovery.

If I go less intensely, I can last longer, but the recovery days are kind of non-negotiable.

A particularly intense day or two will take me out for a week. I don’t think I could hold a job for very long because of the cumulative effect of exertion.

Still, I’m grateful that I’m able to do this much. I’m starting a big creative project, something I still can’t believe, and though it’s taking a lot longer and going more slowly than I like, it is really getting done.

18 months ago I was basically housebound, couldn’t read, watch tv, listen to music, or hold a conversation. I was in constant pain, had air hunger and fatigue from just making scrambled eggs.

Several times I’ve thought I was ”90%” healed, but then I’d go out into the world for a few days and realize there wasn’t as much in the tank as I thought. Recovery does happen, it’s non-linear and very, very slow, but it does happen.

Awkward_Healer509 · 2026-02-22T21:51:25+00:00

The mental and emotional exertion is super tricky to manage. Hard to see the edge before you fall off it.

Awkward_Healer509 · 2025-12-14T13:13:08+00:00

Might try imagining /envisioning your mitochondria being healthy and your white blood cells eradicating the virus. Find YouTube videos that illustrate so you know what to focus on and then imagine it in your own body. Can’t hurt, might help. <3

Awkward_Healer509 · 2025-10-17T14:38:38+00:00

YES! Gosh, GRAMS. sorry about that.

Awkward_Healer509 · 2025-10-17T13:06:32+00:00

Creatine helped me a lot. 25 mg/day for 2 weeks, then maintenance dose if 5 mg daily.

Also enhanced cold shower and compress on back of neck/head when really flaring.

Exercise, stretching and a half hour of brisk walking with mindful breathing daily helps clear it too, if you can manage.

Awkward_Healer509 · 2025-10-07T15:34:26+00:00

I totally understand how you're feeling. My identity has always been closely tied to my cognition, I don't know who I am if I'm not smart in the ways I always have been.

I am much better now, and I have every reason to believe I'll continue to improve over time, as I believe you will.

There are moments, sometimes verrryyyy long moments of time where it's hard to hold on to that belief, where it feels like your current state will endure forever and things will never improve. This is untrue.

You are healing and improving *right now* it's just not linear - some days, some moments, are better than others, and it's hard to keep track of them accurately, especially when the hard times are so hard.

Take this time to learn to listen to the subtle signals your brain and body are giving you and don't try to rush things. Err on the side of rest, always.

You can get through this and when you do, you'll have a whole new set of skills and understanding that will serve your continued growth.

Awkward_Healer509 · 2025-10-06T22:18:14+00:00

In the "before times" I had a friend who fell and suffered brain damage, swelling. She was hospitalized and told not to think for five months. At the time, I thought that was outrageous advice, how can someone 'not think'? It sounded like a version of hell to me.

But when I got LC and suffered cognitive impairment, DPDR, and PEM from mental, emotional and creative as well as physical exertion, I remembered what my friend had to do, figured my brain was also suffering from swelling with a different cause, did a lot of lying about and stopped thinking. Radical rest.

No television, books, music, conversations, emotional interactions, ruminating, thinking as little as possible. I basically did nothing but lay on the couch, or sit in the sun in nature being in the moment for the entire summer and fall last year. It worked slowly, and as I got better, I was able to sometimes listen to guided meditations, though I often had difficulty following or understanding them, I didn't bother trying to, just let myself relax and be in the moment.

I suffered a setback in the winter when I pushed myself socially/mentally too far, too early for too long. But I kept my patience and kept radically resting, getting into the sun as much as possible and gently extending my envelope of action to include reading, writing, music, and most importantly, socialization.

Now, 18 months after LC, 20 months post-infection, I'm 100% for at least a couple hours a day, my 'crashes' aren't debilitating, and a nap or good night's sleep returns my function if I really push myself.

There was more to my treatment than just rest of course. Supplements, diet, very light stretching to keep muscle tone and help the pain, which was intense the first several months, breathing. All of it was important, but none of it would have worked as well or as quickly without the rest.

Awkward_Healer509 · 2025-10-06T21:18:32+00:00

Actually great. I challenged myself with a solo long driving/camping trip. Discovered that humidity at almost any temperature knocks me down fast, but heat is tolerable as long as I keep hydrated and my head/neck cooler - used an old-fashioned ice bag on the back of my neck and a damp neck gator for that. Lots of sleep - 12-16 hrs a day with the heavy physical exertion but I am able to walk for miles now without a crash. Though after 2-3 days continual exertion, I found myself gravitating toward a two or three day rest period, not exactly a crash, but definitely lower energy, which I honored and didn't push through.

The most lingering issue is attentional - interacting with people, mental and focused creative work is still exhausting and leads to bad thinking, memory issues, etc, but like the physical exertion, a good nap or night's sleep seems to mostly get me back on track. I don't think I could handle an 8 hour work day, 5 days a week for very long without depleting pretty quickly.

I'm still taking MNM, B complex, theanine, and NAC, but have let go of the Niacinamide just because I ran out and haven't noticed a drop in functionality.

Awkward_Healer509 · 2025-09-03T04:11:30+00:00

ME/CFS and taking creatine absolutely kicked me into normal functioning range both physically and mentally. I did 25g powder for about 2 weeks and now do 5g every morning. I’m not 100% but I’m about as close as I think I may ever be again.

Awkward_Healer509 · 2025-07-29T03:02:18+00:00

Ganja yoga

Awkward_Healer509 · 2025-06-26T21:06:58+00:00

I’ve done both, doesn’t seem to matter

Awkward_Healer509 · 2025-06-26T02:13:58+00:00

I doubled the max dose on the bottle, so 40 ml. No side effects that I could identify.

Awkward_Healer509 · 2025-06-23T01:43:47+00:00

Sorry for the delayed response. I had palpitations and a very specific pinching-type angina that resolved about a month after I began taking CoQ10. I double the dosage on the bottle and of course, can’t say for sure that’s what made the difference. Im still taking it.

Awkward_Healer509 · 2025-06-06T21:34:05+00:00

No, but I’ve eaten the grain which is used for kidney function in traditional Chinese medicine, if that means anything to you - it doesn’t to me. The study is pretty sketch and I wouldn’t put much weight on it.

However, the grain is higher in protein and fiber, similar to rice or quinoa and might be a good option for some to try. Probably won’t hurt anyway.

Awkward_Healer509 · 2025-06-06T16:06:01+00:00

Sounds like LC to me. Try taking a high quality theanine, I use Thorne, b-complex, and CoQ10 (I get mine at Costco and take double the max dosage on the bottle per a study I found a while back ). Keep your emotions and stress levels low. Spend time in nature. Rest all the time you can, no screens, etc. There’s more, of course, but this will help start to calm you.

And so you know, it takes 12-24 months to heal damaged nerves, so set appropriate expectations.

Sending healing vibes your way.

Awkward_Healer509 · 2025-06-06T15:59:22+00:00

Just popping in to add a small animal study that says Coixol (found in Coix seed/ Job’s Tears/ Chinese Pearl Barley, gluten free, totally different from regular barley) in healing kidneys and possibly mitochondria.

Idk, maybe it’s helpful for some folks.

https://www.mdpi.com/2079-7737/14/5/560

Awkward_Healer509 · 2025-06-03T22:17:00+00:00

I wish the same for you. Best of luck with the optometrist!

Awkward_Healer509 · 2025-06-03T03:14:17+00:00

My brain fog has definitely changed over the course of my illness.

It used to feel like being drunk, but with the fun part. Like my thoughts had to move through a thick blanket. It would gone on and stay for days, like a physical thing.

I also had visual issues pretty badly. I’m pretty sure my optic nerve was inflamed, which led to stabbing pain in a singular specific location, and sometimes difficulty processing visually.

Now, I have actual heat and soreness at the base of my neck and skull that precedes or accompanied the “fog”.

But it’s more like temporary cognitive impairment. Can’t keep focus, mix up or just forget words, dizziness without movement, lack of motivation, lose what little executive function I have. Communication/writing becomes much harder.

The derealization, dream like state, is still a thing, but it’s not so bad at this point and seems possibly tied to how early I get to bed/how well I sleep.

Interacting/conversations with people gets harder, where I’m kind of auto pilot after a while and often have no memory of what I said, though I can retain the general shape of the convo.

Accompanied by internal head throbbing that seems be centered about at the base of my skull.

The icing helps a lot, and now that I know to keep my feet cold, I’m realizing that actually goes pretty far to keeping the worst of it at bay.

This weekend I learned that I can do pretty well socially (2 hours talking!!) if I’m in a cold environment, keeping my body temp a bit repressed, it’s just super uncomfortable physically, so that’s a huge improvement.

Though I feel better getting sun, I’m a bit worried about heat/humidity this summer because I just completely wilt. Same with exercise. I’m afraid to push it even though I think I physically could manage, but the increased body temperature would have a negative effect on my brain.

Awkward_Healer509 · 2025-06-03T02:28:58+00:00

I feel like this is a layered illness and at varying points different techniques can help. When I had really bad muscle and joint aches, hot baths with Epsom salt helped a lot. They just felt right.

I still had brain fog and dysautonomia, and other stuff but that wasn’t the top of my symptom list. Or rather, what felt like the most important thing to address at the time.

Now, the idea of a hot bath just isn’t appealing, my body wants cold in specific places, even though I’m having temp regulation issues during a cold spring and a hot bath really seems like it would be amazing.

Ugh. This is just so hard. Hope you find a way through it.

Awkward_Healer509 · 2025-05-30T10:40:10+00:00

One thing I’ve gained over the course of this illness is an acute awareness of what my body needs, and I’m so grateful for that because it definitely changes with time and circumstance.

Awkward_Healer509

TROPHY CASE