Hi, yesterday being unable to do anything(bedbound) really got to me. I've been to so many drs, been through test after test. I have been getting worse and worse with no hope given to me for improvement. The reality of it all has become overwhelming. Others in similar situations, has this happened to you? I think I've coped with it fairly well up to this point. Definitely my lowest point ever, right now. Thanks!
Sorry, it's hard. Some days (and weeks) are like that. Sometimes I have to do moment by moment. It's strange how sometimes one day it will get to me and the next day I will feel lighter.
The other posters posted a lot of really good ideas. I'm not sure what your abilities are. I know I can't do any crafts or spend energy on learning new things. It crashes me worst and I don't have the energy to spare for it. I'm mostly bed bound 23 hours or more a day and crash even harder from minimal exertions so mine is saved for necessaries, if I can I do something to try to change things, and when I can a little social on here, email or the phone.
I find looking at things on the internet helpful. I can't read too much. I like looking at pictures on instagram accounts of artists, art, places I'd like to travel to and more. This lifts my spirits and inspires me. Also, if I feel well enough I'll listen to some music on youtube. And, PR has been a life saver.
I've only recently started looking at accounts of interest on twitter. It's perfect for those times my brain can't take in much and I don't crash from reading a lot. It also helps me feel less alone, and several things I've seen or read have made me laugh.
I'm not sure if this might work for you. The braille library will send you a machine and books of your choosing you can listen to:
http://www.brailleinstitute.org/about-the-library.html or call them for more information 1(800) 808-2555 or (323) 660-3880, Monday - Friday 8:30 a.m. - 5 p.m. (PST).
You don't have to be blind, the service is for home bound people, too. It's free and a great service. They'll mail you the digital books or you can download them. They also have services where people can talk to you or read to you on the phone or ?internet. I haven't tried those yet so I'm not sure how it works.
Getting lost in series (binge watching) has been good too, movies or watching something good on TV. Not sure if someone can put you on their Netflix account or if you have one. Some things are available on the internet on Youtube and other places. The library you can check out DVDs for free. Here it's for a week and can be renewed up to 3 weeks. Maybe someone can pick you up some or they can deliver it to you.
I hope you find some things to make it better for you. There is a lot of hope in the air with the research that is being done. It's a very promising time for us. Don't forget we are here for you.