Sarah Tee Posted February 4, 2021 Report Share Posted February 4, 2021 Today I am doing an experiment – reclining or lying down for as much of the day as possible to see if it affects my symptoms. I'm only getting up to go to the loo and to eat (keeping legs elevated while sitting at kitchen table). I can't lie completely flat because then I would fall asleep and I don't want to disrupt my sleep patterns (or add sleeping as another factor) so I am slightly propped up on a pillow. Can't knit though. What do you do to pass the time when you have to rest? Cheers, Sarah Quote Link to comment Share on other sites More sharing options...
Pistol Posted February 4, 2021 Report Share Posted February 4, 2021 @Sarah Tee - I can pretty much predict the outcome of your experiment: spending a day in bed definitely minimizes the symptoms, since they are of orthostatic nature. However - the next day you will be much more symptomatic due to the inactivity and spending the day in a supine position. That is why it is recommended to get up several times an hour and do exercises when bedridden. Most of us have to spend days in bed during a flare b/c we cannot get up ( in my case not without passing out ) and recovering from the time spent in bed takes a lot of effort and patience. Good Luck!!! When bedridden I usually spend a lot of time feeling sorry for myself. If I can I read a bit or knit or watch TV, but most of the time I just lie there, not able to do too much, just waiting for the flare to be over. what little energy I have I spend on exercises in bed or trying to be upright as much as possible. Quote Link to comment Share on other sites More sharing options...
Sarah Tee Posted March 12, 2021 Author Report Share Posted March 12, 2021 On 2/4/2021 at 9:36 PM, Pistol said: @Sarah Tee - I can pretty much predict the outcome of your experiment: spending a day in bed definitely minimizes the symptoms, since they are of orthostatic nature. However - the next day you will be much more symptomatic due to the inactivity and spending the day in a supine position. That is why it is recommended to get up several times an hour and do exercises when bedridden. Most of us have to spend days in bed during a flare b/c we cannot get up ( in my case not without passing out ) and recovering from the time spent in bed takes a lot of effort and patience. Good Luck!!! When bedridden I usually spend a lot of time feeling sorry for myself. If I can I read a bit or knit or watch TV, but most of the time I just lie there, not able to do too much, just waiting for the flare to be over. what little energy I have I spend on exercises in bed or trying to be upright as much as possible. In the end, I wasn't able to spend the day in bed so I didn't get to finish my experiment. I hope I can try again another day. It might seem bad to spend the day in bed when I don't have to, and other people have no choice, but I am still unsure whether my symptoms are related to being upright or simply to the time of day or eating (can't eliminate those!). I spend a lot of time sitting on the couch feeling sorry for myself too, so I can sympathise. Sorry that you have to stay in bed. Quote Link to comment Share on other sites More sharing options...
Ashc Posted March 19, 2021 Report Share Posted March 19, 2021 Reading a book has always been my favorite when resting. Sometimes, I watch the TV or write.. Anything to pass the time really. Quote Link to comment Share on other sites More sharing options...
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