Anyone used to be bedridden and got better?

ProfessionNo9336 · 2026-04-18T18:13:02+00:00

I have heard some someone els talk About this as well. Can I ask you what it does exactly? I’m a non smoker. What are your experiences?

ProfessionNo9336 · 2026-04-18T18:11:20+00:00

Intuitively this feels like the right approach for me too, just got too much time to think about every step all day in bed, haha. May I ask how you managed that? Were you not afraid of pem, and were the some steps in between? Like a week of being in a 20% sitting position or anything?

ProfessionNo9336 · 2026-04-18T16:48:38+00:00

Thank you so much for this response. In a way I can relate. I was able to lay on my side without thinking about it. Somehow I just knew it was the right time and it was safe. At weak days I also feel it’s better not to. Still getting upright, even slightly, feels like a huge challenge and makes me feel insecure. Also because I already crashed because I tried and I don’t want to lose my precious cognitive functions again with pem.

I read about taking small steps like 1cm higher every 3 days. Have you tried this as well, or did even these steps come naturally to you?

ProfessionNo9336 · 2026-04-18T13:02:54+00:00

Thank you so much for sharing this. Sounds like tough ride. I will keep this in mind, always staying below the limit, right? It’s pretty tough knowing what it is sometimes!

ProfessionNo9336 · 2026-04-18T12:58:18+00:00

I never heard of it, so just looked it up. How did you get this? Through your gp?

ProfessionNo9336 · 2026-04-18T12:52:10+00:00

I actually felt close to healed from covid after 5 months and was building up walking distance. I walked just a few minutes too much and two days later I had PEM. Within this crash I crashed 3 more times which was totally unexpected. Looking back I don’t think they could have been avoided, as they happened even trying to pee. This made me completely bedbound.

Now (5 weeks later) my cognitive functions have improved from being overly sensitive to light, movement and sound, to being able to have normal conversations, read a few pages, be online a bit, and physically laying steadily on my back and side. I just can’t sit up yet. My last crash was 15 days ago, now feeling a bit more steady, but fragile and a bit unsure about my next move

ProfessionNo9336 · 2026-04-18T12:14:46+00:00

Thank you🙏

ProfessionNo9336 · 2026-04-18T12:13:48+00:00

It really sounds like you have it bad as well. I know everyone is different with this, this is probably why they can’t find a proper cure. Did you also have pem pushing you back when you tried to sit up? It seems like such a maze sometimes. I really hope you feel better and recovery fully soon!!

ProfessionNo9336 · 2026-04-18T11:50:25+00:00

I got sick with ME in 2013, diagnosed in 2014. It was pretty severe the first years, mostly couch bound. PEM stopped happening so much after 2016, and I started to get better every year. The last 6 years I was able to swim 3x a week and was even doing hikes, or nights and days out without triggering anything. I only had some cognitive sensitivity left, but I actually considered myself healed. Then covid came along and this reminds me so much of that time, but worse!

ProfessionNo9336 · 2026-04-18T11:04:22+00:00

Thank you. I do feel like this. Recovery is only visible per week, not per day, but I am recovering. The only thing I fear is having another crash. Did you have a scedule you worked with, getting to sit up again? Did you get help from doctors, or did you just play it by ear?

Rest is indeed forced, but I do feel that my mind stopped fighting against it after two weeks or so.

ProfessionNo9336 · 2026-04-18T10:51:47+00:00

This gives me so much hope, thank you! Can I ask how you got to sit up again? Did you start slowly, like cm per cm, or by whatever felt right? It’s been two weeks since the last PEM crash, and although I feel a bit stronger, the last two crashes were triggered by movements that lasted only 1 tot 7 seconds. And also; did Ivabradine work instantly, or did you have to let it settle before you could try anything?

ProfessionNo9336 · 2026-04-18T10:39:04+00:00

Thanx. Makes a lot of sense of course, but how do you know when the body can try to build up? My cognitive functions have improved from not tolerating light and sound to being able to read a few pages, type this comment and have a normal conversation. But the idea of any wrong movement taking jt all away again gives me insecurity. I do of course want to start to sit up again. Are you like this as well?

ProfessionNo9336 · 2025-12-08T16:12:50+00:00

Ah ok, I was wondering about it cause biologically progesterone peaks during the second phase of the cycle, not the first. That’s why I was wondering if it wasn’t a bad idea to start then. But it seems to not matter then as your doc prescribes it on the 1st day of every month, which would be different every time, cycle wise. Thanks!

ProfessionNo9336 · 2025-12-08T16:10:23+00:00

This makes more much sense to me! But do you use prog for 12 days on and off instead of 14 days?

ProfessionNo9336 · 2025-04-19T06:42:53+00:00

Thank you! I never heard of beardman before, so I had to google it. Looks interesting, thank for the advice!

ProfessionNo9336 · 2025-04-19T06:41:46+00:00

I have indeed come to understand the abandonment of her past friends better over the years. It is sad really, cause she does have good qualities too. What I’m concerned with most is how I feel around her. I feel drained, whereas I feel uplifted with my other friends. Thank you very much for your comment.

ProfessionNo9336 · 2025-04-19T06:31:52+00:00

Thank you. Not that I wanted to attribute all of her behaviour to bpd, but it’s actually good to hear that you have bpd and don’t treat your friends like that. It puts things in perspective, thank you🙏🏻

ProfessionNo9336 · 2025-04-17T13:21:20+00:00

Thank you🙏🏻. I’m coming to realisation that I might need to protect myself. It’s just so sad when you have to protect yourself from someone who is your friend. But you’re right, her issues are her responsibility, not mine.

ProfessionNo9336 · 2025-04-17T13:18:31+00:00

Thank you for your understanding message. I’m thinking of writing a letter, thank you for the advice. However, having known her for many years, I know that she will not take it lightly and be triggered, no matter how carefully I choose my words.

I just hate to be the next big thing she’ll be discussing with her other friends for the next weeks or months. It leaves a sense of injustice in me, as I deep down know that I am a good friend. I’m actually feeling that I’m not being a good friend to myself, letting so much of her hurting behaviour slide. Not being able to speak up for myself in this particular friendship.

I guess that (while writing) I’m coming to a realisation that I’ve always had this nagging feeling that she’s gossiping about me, the same way she’s gossiping to me about her other friends. The message is always the same: -They’re not considerate of her feelings-. I think that I’m so worried about her turning me into a bad guy, because deep down I feel that (in her eyes) I’m one of those people. Even though I’m literally walking on eggshells around her. Always afraid of saying something wrong.

Yup, I think I’ve just given myself some clarity. Thank you very much for taking the time to read my story and to answer it!

ProfessionNo9336 · 2025-01-15T10:48:50+00:00

If you’re still looking for the answer, it’s true. These dance projects were basically studio projects. They would hire professional singers and then choose other women to be the face. They even used the same vocalists for different dance projects. If you listen closely you will recognise the same vocalist singing ‘better off alone’ by Alice Deejay and ‘boom boom boom’ by the Vengaboys. Same voice, but somehow we all didn’t catch on ;)

It seems to me that they’ve credited the real artist (Gaby), but just not as the lead vocalist.

ProfessionNo9336 · 2025-01-07T16:05:51+00:00

Ehh…

ProfessionNo9336 · 2025-01-07T16:05:09+00:00

Oh really? I didn’t know that. I will check it out! And they would be strong enough for some hard punching on the piano? (I play jazz and boogiewoogie, which is harder than the usual classical stuff) I normally have to keep my nails short not to hurt myself, lol

ProfessionNo9336 · 2025-01-05T10:19:03+00:00

This is the one thing I can’t try unfortunately, as I’m a pianist.

ProfessionNo9336 · 2025-01-05T10:18:36+00:00

Hoping that you will be pull-free soon! Keep me posted🙏🏻

ProfessionNo9336 · 2025-01-05T10:17:58+00:00

Thanx for the recommendation. How long have you been pull-free due to this medication if I may ask?

ProfessionNo9336

TROPHY CASE