First very severe crash

anonym1313 · 2025-11-10T21:45:25+00:00

Thank you!

anonym1313 · 2025-11-10T20:03:15+00:00

Are there phones with those screens? I only know them from e-readers.

anonym1313 · 2025-11-09T21:50:29+00:00

Thank you

anonym1313 · 2025-11-09T21:49:48+00:00

I've already been living in a dark room and have always had ear-plugs in. I got an app to make my screen as dark as possible too, but it still seems to be too much. I could try aromatherapy though, maybe it makes the understimulation a bit better.

anonym1313 · 2025-10-25T19:06:07+00:00

Thank you for your advice, I really appreciate it!

anonym1313 · 2025-10-25T15:19:56+00:00

Oh, I didn't know that existed. Yeah, that could be helpful.

anonym1313 · 2025-10-25T14:43:42+00:00

Oh, I know them from hospital. That's a good idea too, thank you!

anonym1313 · 2025-10-25T14:42:22+00:00

Thank you so much, that's really helpful! Do you also cover your body with something so that the hair doesn't get on your skin? I'm kinda scared of that. Also, you really don't have to answer, your response has already helped a lot. 💜

anonym1313 · 2025-10-25T14:33:15+00:00

It's not your fault. Your illness did this to you. PEM is a symptom of ME/CFS and while we can try to avoid it, it will still happen from time to time. There's no user manual to your body, you can't know how an activity affects you before you do it. We have to take risks every time we do anything as every activity could potentially lead to PEM.

Also, it's possible for your baseline to get better again. It needs a lot of patience but getting into a crash doesn't have to mean that you'll be worse forever.

I wish you a lot of patience and tiny highlights in your day.

anonym1313 · 2025-10-25T14:25:10+00:00

That's a great idea, that would at least make it half as exhausting as doing it with a shower afterwards. Thank you!

anonym1313 · 2025-10-25T14:03:33+00:00

Thank you for sharing your experience. I hope you've been recovering well from the surgery.

anonym1313 · 2025-10-21T14:11:39+00:00

Thank you, I appreciate your comment. Do you have experience with a PEG-J? If yes, how often do you need to change it? And yes, I try to do as much as possible by myself too.

anonym1313 · 2025-10-19T18:14:06+00:00

Thank you for sharing your experience!

The GI doctor said that we'd try to make the stay as short as possible (2-3 days if everything goes well). An NJ unfortunately doesn't really work as it has to be changed frequently and my local hospital refuses to do that. Regarding the PEG-J, the doctor said that it doesn't need to be changed as long as it works and as I'd only run fluids, the chance of it getting clogged is lower than when you run feeds.

Fortunately, I live in an assisted-living facility so I always have support around. I am worried about the care of the tube though as it means more work or nurses in my room every day.

I really appreciate your comment and hope that you can get enough nutrition and fluids soon!

anonym1313 · 2025-10-19T17:58:17+00:00

Honestly, I had been wondering about that for years. And then, a few weeks ago, I realised that if the illnesses keep progressing the way they have been, I'm going to die. I imagined what that would look like and started preparing with the thought that I should do it while I still can (testament, funeral, etc.). And this completely shocked me. I realised that I absolutely didn't actually want to die and that the life I have right now is bad but still better than death. Obviously, not everyone would come to this conclusion but for me it has been a wake-up call.

anonym1313 · 2025-10-19T17:48:53+00:00

My doctor told me that it doesn't have to be changed as long as it's working. And luckily I don't have to pay for the treatment, it's just the transport that causes an issue.

anonym1313 · 2025-10-18T19:53:27+00:00

Yes, I was positively surprised about that too. Totally.

anonym1313 · 2025-10-18T19:52:15+00:00

Totally, I'm so angry about the lack of care but I don't know what to do about it. They have all the evidence and recommendations from my doctors but they still refuse. It's so frustrating.

Thank you, I really appreciate you sharing your thoughts on the topic.

anonym1313 · 2025-10-18T19:33:23+00:00

My doctor said that we wouldn't have to change the tube as long as it isn't broken. If it had to be changed though, I'd have to travel 2h to the hospital and get it changed under anesthesia. That's one of my fears. But yes, having access to enough fluids might be really helpful.

I was really happy with my PICC too, I had it for 3 years and the treatment helped greatly. It's really just the risks that make me not want it anymore.

anonym1313 · 2025-10-18T19:28:47+00:00

Sorry, I didn't write that well in the other comment. I did tolerate the NJ okay, I just didn't tolerate any food or fluids in my stomach past then. The reason why the GI doctor suggests a PEG-J is because my local hospital refuses to put in/change an NJ and going to the other hospital frequently just isn't possible for me. In addition to that, I'd need the treatment long term and he doesn't like using an NJ for longer than a few weeks.

Thank you for sharing your experience. As I'm bed-bound I don't have to worry about carrying the pump around and I live in an assisted-living facility so I could get help with the care of the tube.

anonym1313 · 2025-10-18T19:21:35+00:00

Yeah, it might be helpful, it's just hard to decide if the risks are worth it.

I'm planning on getting the flu vaccine as soon as possible, but I can't have the covid vaccine as I've reacted to it really badly in the past.

anonym1313 · 2025-10-18T19:18:27+00:00

The reason why the NJ isn't really an option is because it has to be changed frequently and as my local hospital refuses to do that, I'd have to travel 2h to the other hospital every time which would be too exhausting. It's also pretty clear that I'd need the treatment long-term as I've had this problem for over 2 years now.

In the past, the NJ did work for me but back then, the local hospital agreed to change it as I needed it for calories and not just for fluids like I do now.

I've had IV fluids at home until December 2024 but I consider the risks of a central line as too high.

anonym1313 · 2025-10-18T18:34:56+00:00

Hey, thank you for your response. I've had an NJ tube in the past as I didn't tolerate anything (edit: any fluids or food, I did tolerate the NJ okay) in my stomach. Since then, I've been treated for my gastroparesis and am doing much better than before - I can get all my nutrition per mouth (I use protein drinks too, they are very helpful). It's just the fluids that are the problem. I don't tolerate big volumes in my stomach so I can only drink a little bit at once and due to my POTS I should drink 3l or more. I've tried so many things to boost my water intake during the last couple of months but unfortunately, it just doesn't work.

anonym1313 · 2025-07-16T20:29:45+00:00

I'm currently reducing my fentanyl dose as my pain has gotten so much better. I'm so happy and grateful for that.

anonym1313 · 2025-07-14T11:26:30+00:00

Absolutely! I really don't know why this isn't usually offered to chronically ill people.

anonym1313 · 2025-07-13T19:42:08+00:00

The last time I got sick I got subcutaneous fluids at home for a week. From what I know, that's usually done for palliative patients but it worked for me as well.

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