Martin aka paused||M.E.
Senior Member
- Messages
- 2,291
Hi dear PR Community!
I am having a big crash right now! So I am sorry I can't write very much. But I really need your advice, especially from the experienced members. But please no "That's how ME is... now you are worse AND WILL NEVER GET BETTER MUHAHAHAHA" - indeed, that won't help me now!
I am bed-bound for about one week now. That means I really can't stand up for long, only go to the toilet, and then back in bed. Usually I have a quite acceptable baseline, I would consider myself being moderate. That means I can care of myself, drive to the supermarket, work 2 - 4 hours a day (home office) and meet with friends in my house. Crashes usually mean staying in bed for three days. But this time, it just doesn't seem to improve.
My major problems are: OI (my heart rate while lying in bed is around 75 Bpm, when I stand up it is around 120 Bpm so that I have to lie down after 30 seconds). I am very weak, can't talk much or will get exhausted. Sometimes I have problems with breathing.
I am very lucky to live together with two friends. But I have to improve and since my baseline is much better than this and I often had crashes and have had many fluctuations every month, I think it should be possible. But: What should I do now? Except from lying in bed and rest a lot? I am experimenting with salt in water, but it doesn't seem to help... any thoughts? Or motivation?
:-(
Thank you all!
I am having a big crash right now! So I am sorry I can't write very much. But I really need your advice, especially from the experienced members. But please no "That's how ME is... now you are worse AND WILL NEVER GET BETTER MUHAHAHAHA" - indeed, that won't help me now!
I am bed-bound for about one week now. That means I really can't stand up for long, only go to the toilet, and then back in bed. Usually I have a quite acceptable baseline, I would consider myself being moderate. That means I can care of myself, drive to the supermarket, work 2 - 4 hours a day (home office) and meet with friends in my house. Crashes usually mean staying in bed for three days. But this time, it just doesn't seem to improve.
My major problems are: OI (my heart rate while lying in bed is around 75 Bpm, when I stand up it is around 120 Bpm so that I have to lie down after 30 seconds). I am very weak, can't talk much or will get exhausted. Sometimes I have problems with breathing.
I am very lucky to live together with two friends. But I have to improve and since my baseline is much better than this and I often had crashes and have had many fluctuations every month, I think it should be possible. But: What should I do now? Except from lying in bed and rest a lot? I am experimenting with salt in water, but it doesn't seem to help... any thoughts? Or motivation?
:-(
Thank you all!