My daughter is in a severe crash now for over a month and completely bedbound.
She thinks or knows that her thoughts worsen her PEM. She describes it as her head is burning.
@BrightCandle if I somehow gave the impresission that I don't believe her, this is not the case
It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months. She crashed first week of November
If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?
Watch out for the suicidal thoughts this level of pain will cause because the messed up brain chemistry combined with this level of suffering and inability to move its a dangerous period from my own experience.
This is the painful question. Just my opinion here; take it if it helps and leave it if it doesn't. Being a couch spud isn't healthy, mentally or physically. @hapl808 described the darkness quite well and @BrightCandle described the physical pain. But, and here's the big but, being inactive is much, much, much less dangerous than the harms of overdoing anything when you have ME/CFS, much less when you are severe and also in a crashed state. That's just the very mean way the disease works. There are just so many wonderful, healthy, and life affirming things that we are no longer able to do because they make us worse.If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?
If by yt, you mean youtube, some of the videos available are smart, educational and just plain funny (and laughter is good for what ails us). Some of my favorites of late are from The Hornet King, a young man who removes hornet nests for people professionally. He digs them out and takes them home to feed his beloved chickens. Sweet guy; lots of fun. No pesticides needed!"mindless yt", though she will probably say this is not possible
Yes, it's absolutely possible! I was couch-bound and considered serious for almost 2 years before I began to get some function back. Several decades later, I'm now considered moderate.It is strangely comforting for me to learn that you can still "recover" from a severe crash after 10 months.
I think you are right to be concerned about this, since our bodies need a degree of movement "on the outside" for things (like our lungs and GI tract) to move properly "on the inside." For this reason, gentle stretching, range-of-motion sequences, energy-appropriate weight-bearing sequences and shifting of position are VITAL for future physical and psychological strength. Have you consulted a good physical therapist and occupational therapist about this? They were both a godsend for me! The best of PTs and OTs know how to pace things so bedbound patients don't feel pressured to do more than they can. At the same time they know how to replace destructive behaviors and practices with supportive ones that keep weak patients from being their worst enemies. Just talking from my own experience...Another thing that's starting to worry me...If you're lying there day in day out, without all but necessary movement. She won't develop any other probems because her muscles will weaken over time?
She likes to know what you did to get from severe to moderate
If others have an answer, please do