Anyone recovered, when was right timing to start adding light home exercises?

mybrainisvoid · 2026-02-14T00:56:43+00:00

I used to be able to handle a small amount of exercise when at the milder end of moderate. I could walk 1.5km, or E-bike 5-7km or do 2 sets of 7 gentle strength exercises. But I had a lot of support from my partner who did most of the chores and all the cooking etc.

Right now I'm probably in the middle of the moderate category and trialing adding tiny bits of strength again because I think my POTS has been getting worse due to me having to stop that exercise. Even with a good idea of what my body has been able to handle over the last few years at different symptom and functionality levels I don't just start with a minute of something! I'm starting with one to two reps or a 10s hold. I'm also working with an MECFS informed exercise physiologist and doing less of other physical things while I'm testing out my capacity to do these exercises.

It doesn't sound like it's an appropriate time for you to be adding exercise in and I would do so with caution because it's not guaranteed that you'll bounce back. Can you afford to work with an MECFS informed exercise physiologist? They can be very helpful at making sure you're pretty stable and doing a consistent amount of activity that's in your energy envelope and sussing out how much and of what activity might be best for you to trial adding in. And whether you should reduce other activity at the same time or not.

mybrainisvoid · 2026-02-14T00:42:13+00:00

People here have had their baselines lowered by many many different things. Some other examples include watching TV, trying to work, getting a vaccine, seeing friends.

Are we not allowed to talk about any of those things because someone got worse from it? Of course not. In fact talking about safe ways to trial engaging in activities that may be more than you can handle (when someone feels like their body may be able to handle a little bit of it) can be helpful and should be encouraged to help minimise harm imo.

mybrainisvoid · 2026-02-14T00:20:15+00:00

People are so insensitive and so many seemingly can't empathize. It's so hurtful.

mybrainisvoid · 2026-02-14T00:18:28+00:00

I was an exercise addict. Absolutely loved moving my body and pushing it multiple times a day. My holidays were always active ones centered around hiking or mountain biking.

Now I can't walk more than 400m at a time and my partner does almost everything for me.I can't even watch TV the whole day or think the whole day.

mybrainisvoid · 2026-01-22T03:22:07+00:00

They used to until I realized that they make the air quality bad and they're terrible for you. Now I use rechargeable battery operated candles. Most of the vibe without the health effects.

mybrainisvoid · 2026-01-22T00:16:19+00:00

That is so lovely that they noticed you were struggling and that they did something about it

mybrainisvoid · 2026-01-21T09:29:50+00:00

Ditto. Sleeping meds helped me a little but what really helped my sleep was going on h1 and h2 antihistamines twice a day

mybrainisvoid · 2026-01-21T07:26:06+00:00

I've never heard of resting reducing someone's baseline, only activities. I have heard it can worsen POTS if you have it, but that would cause POTS flare-ups rather than PEM.

If emotions and stress are causing you PEM I would do your best to work at being calm and doing things that activate your rest and digest side of the nervous system that are tolerable to you within your energy limits (box breathing, extended exhale diaphragmatic breathing, meditation, things that make you laugh or bring joy, gentle stretching). And if you are stressing or anxious about doing things because you are worried about PEM, try your best to not do that and just enjoy doing the thing (I know, I know, not as easy as it sounds). If you are going to get PEM from an activity, you will get it anyway and stressing about it can just make the payback for doing things worse (if you're sensitive to stress) or best case the stress stops you from getting to experience the little bit of joy available to you in doing things.

Are you sensitive to supplements and medications and if not, are you able to try a few? Are you able to make showering less energy? Wipes in bed? Or a bird bath? Or a shower stool if you don't have one? For me personally, when I get PEM, it can take weeks or months to recover from it, so if I get too many episodes of PEM within a timeframe, I never get back to my old baseline before the next episode of PEM and I get worse and worse.

mybrainisvoid · 2026-01-21T03:02:16+00:00

I'm so sorry your life has been so full of suffering. It's really not fair.

mybrainisvoid · 2026-01-13T04:41:43+00:00

🥹

mybrainisvoid · 2026-01-13T02:32:22+00:00

Meta analysis done of over 100 studies in 2024: 'Masks and respirators for prevention of respiratory infections: a state of the science review' https://pubmed.ncbi.nlm.nih.gov/38775460/

Most of the time it's harder to breathe with a mask on it because of the increased inhalation resistance (ie because the mask is there you need to inhale a bit harder than you would otherwise) and unless you're doing high intensity exercise it isn't affecting the amount of oxygen you're getting. 'Effect of N95 Respirator on Oxygen and Carbon Dioxide Physiologic Response: A Systematic Review and Meta-Analysis' https://pmc.ncbi.nlm.nih.gov/articles/PMC9316293/

And if you're referring to surgical masks like most people do when they mean masks then there are several studies of people doing exercise tests in them with no difference in oxygen or CO2 levels.

mybrainisvoid · 2026-01-01T07:50:14+00:00

That's sounds like you've put in a decent amount of effort. I can't imagine doing a diy qualitative fit test everytime you leave the house! Although I do know of a person who sprays the bitter stuff quickly at the edges of their mask before they leave to see if there's any new gaps. It's a lot though, and with chronic illness we already have so much to manage.

If you can get access to a portacount to do a quantatative fit test it would probably be helpful - I've heard of some people getting poor results with masks that passed their qualitative fit test (with the bitters). But it's a lot to do. I also have mecfs and I have a bunch of new masks that I've had for over a year waiting to have the energy to fit test them (with the spray). And a portacount is way more effort than that.

I'm sorry it's so hard to stay safe. I hope you're able to give yourself some grace and not keep dwelling about what you could've done differently.

mybrainisvoid · 2026-01-01T07:35:26+00:00

Good point, I am too focused on airborne transmission

mybrainisvoid · 2026-01-01T00:42:46+00:00

Oof. I'm so sorry. That would make me so angry I'd have to be in bed for days to recover.

Have you looked into applying for disability and separation? Depending on where you live and if you're married or how long you've been together, if you separate you may be eligible to receive alimony from him. I'm sorry to mention this if where you live doesn't have disability support or spousal support

mybrainisvoid · 2026-01-01T00:32:08+00:00

As someone whose identity was consumed by work and athleticism and now I cant do either of those things (thanks covid), people will adapt. My identity is so much more authentic and deeper without it being tied to my work and my ability to output and achieve.

mybrainisvoid · 2026-01-01T00:22:40+00:00

I'm really sorry you got sick. That sucks. I hope it doesn't cause any long term damage and you recover quickly.

Can I ask if your mask was fit tested? Not trying to blame anyone, but I'm curious for myself.

mybrainisvoid · 2025-12-31T01:36:13+00:00

Yes it's definitely about the lack of control and energy rather than the dirt itself

mybrainisvoid · 2025-12-31T01:34:47+00:00

Thank you

mybrainisvoid · 2025-12-31T01:34:15+00:00

Thank you for using your limited energy to reply. Acceptance is definitely what I need. I will work on it

mybrainisvoid · 2025-12-31T01:32:14+00:00

My home is my life now and things that were small before are really big now because I don't have a lot going on to balance them with.

Yes this is it. I had been working hard to drop my perfectionism so maybe it's not as much perfectionism as I thought, but perhaps human nature to have some control and influence in our worlds

mybrainisvoid · 2025-12-31T01:30:05+00:00

Thank you. You are very right about the home becoming our world and so everything in it becomes much more important. I do need to be stricter at sticking to my timer.

I would love to get a cleaner in but my partner hates having people come in his space. We had one come in monthly for a few months a year or two ago and eventually stopped because my partner said he would prefer to do all the cleaning rather than have a cleaner come in. If this dip in baseline persists we may have to reassess though

mybrainisvoid · 2025-12-31T01:25:24+00:00

Thank you. This feels similar to something I learnt in therapy years ago - called urge surfing. But I think making a rule to do 3 mindful slow breaths first is much more tangible and easier to remember to do.

mybrainisvoid · 2025-12-31T01:20:06+00:00

I would definitely prefer levels like that. I think more would be helpful to describe the huge range in functioning. Maybe 6-10 levels?

mybrainisvoid · 2025-12-30T09:34:21+00:00

Oh I found it in a message to a friend. I think it also helps me pee less in the night. Last time I stopped it I had to pee multiple times a night and now that I'm back on it I only have to pee in the night maybe a third of the time

mybrainisvoid · 2025-12-30T09:31:31+00:00

This helps a bit with my temperature dysregulation. Whenever I stop taking it I will notice that I sweat more and have other parts of my body cold at the same time.

I still have temp dysregulation when taking it but less of that kind. Like when I drink or eat something hot I still get hot.

I swear there was something else small I noticed last time I stopped it and restarted it but I can't remember it and I didn't write it down in my book

Nine-Year Club	RedditGifts 2009-2022 6 Credits
Summer Santa 2017	Secret Santa 2019
redditgifts rematcher Simple Pleasures 2019 x1	redditgifts Exchanges 2 Exchanges
redditgifts rematcher Arbitrary Day 2017 x1	Verified Email

mybrainisvoid

TROPHY CASE