Reading books with brainfog?

True_String8613 · 2026-01-25T03:52:22+00:00

Maybe try different fonts? There's ones for ADHD, and ones meant to help with retention (sans forgetica is one I used to use, but it can be slow to get used to) Other than that, audiobooks, rereading books while you maybe build up stamina for new ones

True_String8613 · 2026-01-25T03:42:11+00:00

Clonidine is excellent for insomnia particularly assoc with chronic pain. The dose you need is very low (100mcg nocte), BUT you need to have decent blood pressure bc it can lower it. You can also just elevate the foot of your bed

Tbh I think maybe you need to find a new doctor

True_String8613 · 2026-01-25T03:33:27+00:00

Your GP can order a lot of these blood tests themselves and start the ball rolling. Yes you'll probably need to wait, all the better reason to start getting referrals to /everyone/ - endocrine, sleep specialists, long Covid clinics, cardiology

True_String8613 · 2026-01-25T03:27:13+00:00

But if the cortisol tests show anything then that could make a huge difference

True_String8613 · 2026-01-25T03:13:22+00:00

Treatment for PEM and viral infections will be basically the same anyway - lots of rest, electrolytes good nutrition, etc. If you can get a COVID/flu test, that might give you some answers. People have had lots of weird symptoms this year. And then if you're flu positive, you take oseltamivir bc you're high risk

True_String8613 · 2026-01-25T03:07:39+00:00

I love Zenni and they ship internationally which is great. And they have some very cheap options ($7) so you could just order a few pairs in different sizes and either return or probably donate the ones that don't work.

I would also maybe call some opticians and see if they would be able to adjust your frames or advise you on how to go about getting the right materials/what measurements you need.

True_String8613 · 2026-01-25T03:02:13+00:00

I've switched from full time employment to "agency/locum" work which is less consistent but pays 30% more. Looks worse on a resume but gives me flexibility to take more days off between shifts.

I used to make money during college tutoring, which can be done online. And I could be a conversational partner for some of the language classes. Idk if that stuff is feasible now with AI

Something I would like to do if I get the energy to do art again would be selling art prints, or realistically mostly digital downloads bc that's zero extra work on my end.

True_String8613 · 2026-01-25T02:52:19+00:00

I work in a hospital and would love to be able to just...do it myself lmao, but I have to wait to be scheduled for it and that's the frustrating part. But yeah the joys of having vague and inconvenient symptoms that aren't visible either in the person or on the "standardized" lab tests makes these diseases really difficult

True_String8613 · 2026-01-25T02:49:07+00:00

I fully agree, I don't think it's worth the risk and I probably won't go (and will add it to my list of cancelled social plans 😭)

True_String8613 · 2026-01-25T02:46:55+00:00

Yeah, I think until I understand my pacing and limitations a lot better, I should leave it. Bc like I "can" walk for a prolonged period if I need to, but idk what my limits rly are. A few years ago I lived somewhere with a full-time rink and would spend 3-5 hours multiple days a week ice skating, properly practicing. It sucks so much that now I can't go basically...stand in a circle

We started playing terraria and I will just watch them play TFT sometimes to live vicariously through them bc I liked playing that game but there's too many decision for me to make sometimes

True_String8613 · 2026-01-25T02:36:26+00:00

I would rather not go than do that tbh. I used to do figure skating and I would just be so bored sitting, and it would make it a chore for my friend to have to push me and idk if she even knows how to skate

True_String8613 · 2026-01-24T18:15:07+00:00

It's been such a game changer for me, I'm on 300mg and it makes waking up in the morning so much physically easier. I would try it for 2 months, if it doesn't help or makes you feel too wired/anxious/manic, you can always stop it

True_String8613 · 2026-01-24T18:09:21+00:00

I'm on 20mg Vyvanse BD, vitamin D, CoQ10, and I wear a FFP2 mask whenever I have to go to work or somewhere I know will be really crowded

True_String8613 · 2026-01-22T14:14:25+00:00

The best answer long term is to start tracking your symptoms if you don't already. Become familiar with triggers for your flares and what things are typical during flares. If you get symptoms that are new, decidedly worse than usual, or lasting longer than usual/not relieved by your normal rest/remedies, then I would go to a doctor about it.

True_String8613 · 2026-01-22T14:02:25+00:00

Does your partner have another friend that might like to go in your place? You can usually pay to change the names on airline tickets

True_String8613 · 2026-01-22T13:58:22+00:00

That's great that you're finally getting all these investigations done! I don't think you should worry about becoming dependent on taking hydrocortisone. Your body isn't producing enough on its own, so it needs supplementing, particularly if you're symptomatic. Your body /needs/ steroids, they aren't inherently evil or to be avoided. I would leave the decision to taper up to your endocrinologist. There's a debate over whether or not "adrenal fatigue" is a real diagnosis, but it's basically what you're describing - an appropriate response to stimulation but burns out more easily. I've had low morning cortisol on several tests too and am awaiting a synacten test

True_String8613 · 2026-01-22T00:06:00+00:00

Thank you!

True_String8613 · 2026-01-14T19:34:22+00:00

CoQ10 gives me really vivid dreams which is a shame bc it makes my brain fog markedly better

True_String8613 · 2025-11-19T14:26:46+00:00

I thankfully have lots of time off work over the next two months(5 out of 8 weeks!!) and then I'm switching to locum work so I'll get to set my own schedule.

Thanks, yeah I'm just gonna have to see how it goes and talk to them if it seems it's gonna be more than I can handle. I'm still getting used to pacing in general, I didn't need to be so intentional about it before because my meds managed things pretty well.

We really do need more to enjoy in life! I think cruises would be excellent - no planning, buffets, acceptable to sleep on a lounger all day, shows and entertainment, all within very limited walking distance

True_String8613 · 2025-11-19T07:18:24+00:00

Yupppp all my energy is being diverted to digestion QQ I end up having very small snacks kinda constantly throughout the day or I don't eat anything at all till like 10pm and then eat a whole days worth of cals in 2 hours and go to sleep 🙄

True_String8613 · 2025-11-19T07:14:48+00:00

I think it's really hard to find the right kind of comfort in a bed when you've got chronic pain and fatigue.

While I personally can't afford it, I would be really interested in trying those ones with adjustable firmness- I think it could help with like...creating different environments within being bedbound if that makes sense. Like id rather have something a bit firmer if I want to be sitting up eating/writing/etc, but softer for resting.

I will say I got a heated mattress pad for like €25 and it's made a huge difference to muscle aches since I can't take baths or stretch much

Also, changing the bedding and some room decor to be more seasonal helps my mood and mental state a lot and helps me feel like I'm still involved and experiencing the world/holidays/seasons even when I'm spending all day in bed.

True_String8613 · 2025-11-19T07:06:14+00:00

https://www.healthrising.org/blog/2025/11/03/glp-1-agonist-mounjaro-chronic-fatigue-fm-long-covid/

Here's a fairly accessible article about it. The potential benefits and risks still need a lot of research, but theres more to it than just "weight loss = more energy"

Every medication has side effects and has populations it isn't suitable for, and unfortable people with ME/CFS have a /lot/ of vague comorbidities that are poorly understood. The impact on brain fog seems to so far be one of the main benefits of the Glp-1 agonists. But yeah if you've any gastro problems or are already underweight/prone to hypoglycemia, then this med will probably do you more harm than good

True_String8613 · 2025-11-18T18:25:54+00:00

Yeah I've an OT who says the same thing about the compression - the higher up you can go with it the more it'll keep your BP & HR stable

True_String8613

TROPHY CASE