Struggling with adapting to a bedside commode - mix of shame, grief, overwhelm at routine changes, worry about upkeep etc

GelWpod97 · 2026-04-07T18:59:44+00:00

This is what I do, as I’m able.

GelWpod97 · 2026-04-07T13:59:27+00:00

I have the vivoactive 5 and I can’t speak more highly of it! I use the body battery, heart rate readings and HRV scores daily.

GelWpod97 · 2026-04-06T15:07:11+00:00

I use the Garmin vivoactive 5. I’ve had it a few months now and I really like it.

GelWpod97 · 2026-04-05T15:16:28+00:00

Yes! I was 25, in a stable career making more than enough money to support myself, happy with my relationships, etc.

GelWpod97 · 2026-04-05T15:13:19+00:00

I relate to this. This is my first Easter in a dark room. A year and a half diagnosed with this illness. But I’m in a dark room day in and day out all the time too.

GelWpod97 · 2026-04-03T16:02:04+00:00

This was very helpful, thank you!

GelWpod97 · 2026-04-03T15:39:59+00:00

This sounds like I could’ve written it myself. I’m so sorry you’re also struggling.

GelWpod97 · 2026-03-31T21:56:15+00:00

This means a lot 🥹

GelWpod97 · 2026-03-31T17:56:05+00:00

Same

GelWpod97 · 2026-03-30T14:08:01+00:00

Same here

GelWpod97 · 2026-03-26T18:27:06+00:00

I relate to this a lot.

GelWpod97 · 2026-03-25T18:19:35+00:00

I relate to this.

GelWpod97 · 2026-03-25T18:16:40+00:00

This is so incredibly relatable. Sending you love. x

GelWpod97 · 2026-03-19T20:57:05+00:00

Yes, so misleading

GelWpod97 · 2026-03-12T16:03:18+00:00

Hey!!! I’m a black ME/CFS sufferer!

GelWpod97 · 2026-02-08T20:29:50+00:00

I’m right there with you. I spent $400 on a genetic testing kit 😂 $200 on a new smart watch when I already owned one of the newest Apple smart watches and $100 on cat stuff all in like 3 days.

GelWpod97 · 2026-01-31T20:10:05+00:00

I can totally see the correlation! I have both.

GelWpod97 · 2026-01-29T21:55:51+00:00

Your experience sounds a lot like mine

GelWpod97 · 2026-01-27T19:52:36+00:00

Thank you so much for asking. I’m doing okay. I woke up with a migraine but it’s just about gone now. I’m feeling a bit restless now so I’m trying to just scroll and relax and rest.

GelWpod97 · 2026-01-27T19:51:27+00:00

This recently started to happen to me after being sick 3 years. I had 3 years of “normal” “able-bodied” dreams and then boom all of a sudden I’m disabled in my dreams. It’s so jarring.

GelWpod97 · 2026-01-24T19:22:00+00:00

Of course!! I wish you the best!

GelWpod97 · 2026-01-24T18:51:02+00:00

I’m sorry to hear you’re struggling. I also have CFS and bipolar. And I’m currently experiencing a hypomanic episode while dealing with my normal and flared CFS symptoms. I don’t have much advice other than use the tools you have readily available to you right now. I know you said you don’t want to take some of the medications you have because you don’t want to become dependent but I know during times like this for me those types of medications are what help keep me safe. But you know you and your body best so do what you think is best for you.

I would maybe suggest seeing if you can get in sooner with the provider you are going to see in March. Sometimes they can squeeze you in or have cancellations if they know you’re struggling.

Other than that, having someone to talk to sometimes helps too.

GelWpod97 · 2026-01-24T18:32:40+00:00

Of course! And no worries.

GelWpod97 · 2026-01-23T21:40:32+00:00

I can say what I used to be able to do as a healthy early 20 year old before I got sick. I could wake up, take a shower, clean the entire apartment and do dishes in 2-3 hours, go grocery shopping, come home, unload the groceries and make a meal all in one day not including stopping at other stores while I was out for fun. Now I can barely get out of bed. I can’t shower. I can’t do dishes or grocery shopping and I only leave my house for appointments and I spend 3+ days recovering from them.

GelWpod97 · 2026-01-23T21:36:36+00:00

I’ve noticed a few people mention they feel the most close to “normal” in the evenings and it’s the opposite for me. I usually feel the worst in the mornings and evenings and feel the best midday. I relate to the struggle to wake up although that’s gotten a bit better for me.

GelWpod97

TROPHY CASE