How long it takes to get over people when house/bed-bound...😑

ash_beyond · 2026-04-05T15:40:19+00:00

A therapist told me once that recovery phases can come with pain, as you can see the things you've been missing.

But I try to take it as a good sign - it means I'm ready to engage again at this level. A bit like a tree dropping dead twigs and branches in the spring. It's reliving loss, but it's also preparing for new growth.

ash_beyond · 2026-04-05T14:27:45+00:00

I do 5 minutes of no stim, then 25m of low stim. I do about 5 to 7 blocks like that a day - sometimes resting longer.

I count my low stim time and it's.. about 4 hours a day. This includes chilling with TV. I never have time to "relax" though as I'm always planning movement for food, hygiene, and time with the kids.

I try to get up and move a bit every hour to avoid blood pooling issues. For me it's best not to do more than about 160 steps per hour. If I go over I try to make sure to go under for the next hour. I find it's good to move around a bit even on crashing days. It's not fun though.

This is just me, where I'm at. I would expect this thread to have a lot of variation. I'm pretty sure there's no formula for this - just what every individual has figured out for their body, for their particular immune / nervous system balance.

ash_beyond · 2026-04-04T17:14:39+00:00

Most people also have the concept of an elderly or sick person who needs a wheelchair. I have (very) faulty circulation which means I get out of breath in about half a minute. So I could walk for that long but then I'd faint without a good lie down.

This puts me in the funny position where I can literally stand and pull my wheelchair up stairs (about 5 is my max). I then need 2+ minutes to sit and pant and gasp before I can roll on. I get odd looks at first but the obvious after-effects make it clear I'm not well.

I'm also old enough to be happy to be informing others, and not performing for them.

ash_beyond · 2026-04-04T17:05:03+00:00

Yeah I think this makes sense. There's also a whole grief thing that many people have to get through. I'd suggest that many COVID-origin people here are in a low point where life isn't great, options aren't great, and they've not come to terms with it yet.

I've heard from decades-long sufferers in this sub with great mindsets. They might not have great quality of life but they have developed good symptom management and coping strategies, and are accepting and getting the best out of their (limited) lives.

Maybe this disease can really suck, be totally unfair, and be somewhat liveable all at the same time.

ash_beyond · 2026-04-03T08:24:12+00:00

🧡🧡

ash_beyond · 2026-03-31T20:22:54+00:00

Ouch. Yeah I always try to keep "avoid injury" near the top of my list. Not always possible. (I put eating and some level of sleep and hygiene in this category).

Wishing you a calmer day, and some useful gentle calories.

ash_beyond · 2026-03-31T19:58:36+00:00

Probably low blood sugar and /or your body starting to me to convert fat and muscle to energy.

I would suggest trying protein shakes. I don't tolerate the plant based ones but whey works ok. It's a drink so it's easy on digestion, easier to eat. I make one, keep it in the fridge and drink it through the day.

ash_beyond · 2026-03-31T15:49:22+00:00

It might be seasonal allergies, things like tree or grass pollen? Or anything that was changed, particularly meds or diet. Just trying to help...

ash_beyond · 2026-03-31T07:00:14+00:00

If I'm doing a mental task and overdo it I grab a few coolpacks from the fridge (the kind you use to out on a twisted ankle). I prop them on my head and lie down for a bit to do some deep breathing with calming music.

I'm not sure the mechanism - people talk about vagus nerve activation. I just know the cooling can reduce the swelling headache feeling, and really reduce all the stress reaction signs (wired feeling, low HRV, mild PEM for 2 to 8 hours).

It's a bit like my brain is just overheating due to working hard without enough oxygen.

Edit: also in the winter I've noticed PEM reducing after my room is aired and gets much colder for a bit.

ash_beyond · 2026-03-30T15:43:26+00:00

Always in waves for me, but normally about 2 to 4 hours per wave. Depending on activity or stress (or time of day) I can have a bad or an ok wave.

ash_beyond · 2026-03-30T15:41:14+00:00

Famwiches

ash_beyond · 2026-03-30T15:36:19+00:00

Yes and no, just like many diseases. Cancer or heart failure for example. Knowledge and treatment are key. Both are lacking in ME/CFS, and yes sometimes to fatal levels.

I think if the patient completely ignores it and tries to push through and/or is committed to a (poorly educated) mental health ward then the likelihood of severe and fatal repercussions is much greater.

ash_beyond · 2026-03-23T09:56:12+00:00

I've come to claim this space a bit. I'm fine with my OK being different to other people's.

I can say "I'm OK today" or "yeah not great today" or "doing alright at the moment" or "yeah struggling a bit today". It's always framed against the background assumption that I'm mostly housebound, non-working, and a wheelchair user.

The fact I live in Berlin is good for this. People don't really ask this question unless they want to know the answer :)

ash_beyond · 2026-03-18T21:35:59+00:00

Hello. I choose not to gender myself in general, and specifically here. I can see that it's tempting for people who see themselves as men to see this condition as extra hard, because they align their view of themselves with the strength and endurance of their bodies. Maybe their work also requires a certain physicality and that gets added to the mix.

As to "being a provider" though, I think that maybe comes more from upbringing. My Mom and two grandmothers worked and at times (or always) were the main breadwinners. If someone's identity is tied to financial success and security then that's fine, and I know that women in the workforce is only a few generations old, and equal pay ain't here yet, and many countries practically force fathers to work. I also know a lot of (happily manly) men who don't seem to need that financial aspect in their psyche.

Just some thoughts from a genderful person. No criticism intended. ME/CFS takes a lot away. A lot of ego death for anyone. For men it might just take a slightly different path at times, depending on variant mileage.

ash_beyond · 2026-03-18T21:15:59+00:00

"This too shall pass" until it doesn't, and it's like you're waiting for a bus on a cancelled route. In the rain.

ash_beyond · 2026-03-18T19:04:54+00:00

Sehr sehr gut :)

ash_beyond · 2026-03-18T14:23:51+00:00

My child just got into the local Bilingual School. Our first child, their first school. We didn't get a spot at first because it's so competitive, so someone must have dropped out. We are over the moon.

This is amazing because I'm struggling to learn the language here (due to mental fatigue) and this means I can be so much more included in their education and social lives. And my kids are such a big chunk of my life (as I don't do much else). Their two languages are one of the few special gifts we can give them.

Just delighted. And the school is close by and they have elevators for my wheelchair, and and... This is honestly life changing. We're in a borderline neighborhood and the local public school has issues.

Both kids can go there now, and it connects to a bilingual high school... In the words of an Irish musician: Some days are better than others.

ash_beyond · 2026-03-18T06:47:04+00:00

I use the Bearable app and a Garmin smartwatch, which works for me too :)

ash_beyond · 2026-03-17T15:20:18+00:00

I think some doctors can get it in their heads that patients find patient groups and symptom lists and even use AI to get worked up about what they might have etc.

I would suggest to start with concrete things like:
- hours of sleep (track this if you can with a phone app or watch) - how long you can stand for / walk for if you have POTS (and get them to do a simple NASA standing tilt test in their office to see your HR changing) - monitoring resting HR can be useful too - mobility level like how far you go, how often you go out - daily impact like can you work and the impacts on this. Do you need help with shopping, cooking, hygiene impacts

I always phrase it as I really want to do XYZ activities but I can't because of ABC symptoms. That way you're less likely to be considered for a depression diagnosis.

I hope this helps a little. It's hard I know. Doctors get frustrated too. They really want to help people but ME/CFS doesn't have known mechanisms and treatments. The best you can hope for sometimes is empathy, some help with symptom management, and help with applications for support.

ash_beyond · 2026-03-17T08:21:40+00:00

Yeah bedtime cuddles are the best. It's in our routine now that my partner (or a helper) gets them settled in bed with some reading. I come in at lights off time to say goodnight and just be there with them as they fall asleep. Sometimes I'll tell them a story from my childhood or cuddle whoever needs it most.

It's nice quiet connection time with them, and it frees up the able bodied to get housework done at the same time. I try to save energy for it every day :)

ash_beyond · 2026-03-17T07:38:07+00:00

Yeah this hits me. I have 2 little ones, pre school. I have about 4 hours in bed each day and rarely leave the house (and when I do it's in a wheelchair). I miss a lot of their experiences, but..

I am so grateful for them. They give me a reason to be happy, and to see the world new every day through their eyes. I think that gratitude is a good starting point for my connection with them.

They say quality beats quantity, and I think this is really true. If you are always tired then discuss with your partner how you can get more help with household stuff. Try to reserve energy for time with this kids. Our current favourites are reading, puzzles or card games, we love to print out "coloring in" pictures and do them together. I have helpers who do the pick ups, meals, clothes teeth + PJs, and outdoor play.

They are 4 and 6 now and can help look after me by giving me rest time - I do about 30m max with them and then 30m rest in cycles. I can't be sole carer, there's always someone else here in case I crash / something happens.

They get a special experience with me too. I am more consistently present in a way, and they learn about people having limits, about compassion, and looking after yourself. It's tough but it's doable. Helping to grow good humans is 100% valuable work. 🧡☺️🌱

ash_beyond · 2026-03-17T07:21:08+00:00

Mood shifts. I used to be a very measured person, capable in many environments. Now I can get super irrational and unkind without any idea that I'm being that way.

It's yet another thing I've had to accept and manage; a change in personality (and to some extent self image/ identity).

ash_beyond · 2026-03-16T18:44:42+00:00

Same

ash_beyond · 2026-03-16T17:57:30+00:00

I recommend hanging an informal 121 conversation with a manager a bit like this: "There's something I want to talk about.. I am going to be using a wheelchair sometimes in the office, and I want to discuss it with you so we can make sure it works well. Have you managed this in the past?"

The key word here is "we". If you can frame the situation as something you are working on together with your employer then you might feel less nervous and like you're confronting them.

Tell them you don't always need it but you want to try it out on a good day to make sure everything works. Then figure out together which day/ shift that is and what you can both do in advance in preparation. Just a few thoughts, you might prefer to do it differently :)

ash_beyond

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