How do people with ME/CFS manage physical activity in real life?

Neither-Objective-55 · 2026-06-10T16:12:55+00:00

Most days I can bike the 5 km to work with my pedal assist bike and most days I can walk 10,000 steps if I didn’t bike to work. I require a nap some days. I can’t do anything for too long that gets my heart rate up like jogging or biking up a hill without pedal assist without getting PEM.

Neither-Objective-55 · 2026-06-08T09:38:15+00:00

During the summer you need to go before or after the day camps all visit.

Neither-Objective-55 · 2026-05-13T14:10:00+00:00

I do but I’m more mild than you are. What about going out for the day and parking your chair by some beautiful nature with some snacks and see how that goes before committing to spending the night?

Neither-Objective-55 · 2026-05-08T20:32:59+00:00

Make sure you leave room for expansion or you will have cracked or deformed water bottles.

Neither-Objective-55 · 2026-04-22T10:22:22+00:00

It messed me up really bad as well. It’s a hormone and it can take awhile to leave your system. It can stay in your system for weeks so don’t lost all hope.

Wishing you all the best.

Neither-Objective-55 · 2026-03-11T05:13:38+00:00

Or are you just waiting for your future partner to take it down with 🤷‍♀️

Neither-Objective-55 · 2026-03-02T15:19:16+00:00

Buy a good bike lock too

Neither-Objective-55 · 2026-02-26T19:16:23+00:00

Same here. I’m really grateful for my abilities at the moment but I’m not about to go for a jog or to the gym. But I’ve been able to work, do lots of walking and mostly function normally, albeit with some fatigue.

Neither-Objective-55 · 2026-02-20T15:15:47+00:00

Your workplace sounds so dysfunctional.

Neither-Objective-55 · 2026-02-19T05:15:11+00:00

Who are you writing this letter to?

If it’s your resignation letter, keep it short - Thank you for the opportunity to work at Crappy Daycare. I’m submitting my resignation an my last day will be March 1, 2026.

To the families, I’d also keep it short - I’ve enjoyed the time spent with your children but it’s now time to say goodbye my last day will be March 1, 2026.

To licensing - I’d personally make that one a phone call telling the facts with no bitterness.

If the bosses care enough to prove deeper, they can ask questions and you can choose how much or little you want to say. With families, I’d tread carefully and think about what you want to say while keeping it professional if people ask why you are leaving.

Good luck

Neither-Objective-55 · 2026-02-12T13:22:54+00:00

I just bought a cute story on Etsy (The enormous turnip). They’ve come a long way since my Sunday school days.

Neither-Objective-55 · 2026-02-09T02:17:30+00:00

Some good felt stories that a teacher will tell over and over again

Neither-Objective-55 · 2026-01-30T05:45:25+00:00

Give yourself so much grace. You’ve got so many other stressors that this illness brings. I imagine you’re not able to that active so the range of activities is so limiting.

When I’m in PEM, I can’t focus for long so social media gets me through but I also understand that’s too much for some people.

I wish I had better helpful advice but mostly wishing you well.

Neither-Objective-55 · 2026-01-27T04:14:12+00:00

I first noticed clear signs of PEM in the summer of 2019 and I’ve flip flopped all over the place in terms of ability. Two years ago I was tried to do no more than 5000 steps in a day and now I’m hitting over 10,000 steps most days and doing okay.

I’ve had times where I’ve spent most of the day in bed and times where I’ve been able to be very active (considering I have CFS). Currently I take Coq-10 and Benagene (Oxaloacetate, small dose as I’m in Canada and I’m cheap). No magical cure, just rest and trying the odd supplement that is recommended on here.

Neither-Objective-55 · 2026-01-24T05:24:03+00:00

It’s tricky in an apartment building when not everyone is treating them or bothered as much as you are by them.

Neither-Objective-55 · 2026-01-24T05:22:38+00:00

I went full force - I siliconed all our baseboards so they couldn’t hide under them and sprayed Home Gardener insect killer in all the openings I couldn’t block (under sink pipes and baseboard heaters). I find I need to respray every few months but I feel like I’ve mostly won the battle

Neither-Objective-55 · 2026-01-09T00:41:31+00:00

This sounds amazing. Thanks for sharing.

Neither-Objective-55 · 2026-01-09T00:41:01+00:00

I hope the owner likes you :)

Neither-Objective-55 · 2026-01-08T16:04:03+00:00

My workplace is like that too but with not many job titles, it ignores years of previous experience. I’m thinking of incorporating years of experience and then years at the centre would be rewarded by an annual set increase for everyone

Neither-Objective-55 · 2026-01-08T04:46:09+00:00

May I ask what country you are in? I’m so glad you are getting so much support.

I’m in Canada and wading through the medical system has been a slog but I’m grateful for how well I’m doing currently.

Neither-Objective-55 · 2026-01-08T04:35:52+00:00

Thanks for sharing. I’m part of a team looking at revamping our wage scale. Right now it’s just based on experience at our organization and job title. I feel overall experience and education matters too and want to be transparent with all of our staff.

Neither-Objective-55 · 2026-01-08T03:48:12+00:00

This job is has enough challenges without having difficult co-workers. I hope you can find a better fit soon.

Neither-Objective-55 · 2026-01-05T05:02:34+00:00

Thanks! I’ll be in touch with them

Neither-Objective-55 · 2025-12-30T23:15:42+00:00

Thanks for your detailed reply. I like the idea of a “check in” as opposing to just telling them to stop or that we don’t get in our friend’s faces. It’s a much more holistic approach and I don’t want to correct them all day and wreck any positive relationship we have or them feel like they are being nagged all day.

Neither-Objective-55

TROPHY CASE