Now that my OI is a small bit better I get restless lying or sitting down, which I guess is a good sign. Trips to the grocery store or having to stand still upright for more than a minute is still really uncomfortable. I find I'm doing a lot of pacing around, which is much better for the OI and I think gets blood flowing to my head. I used to do it a lot when I had more energy, but then when I got worse, I always had to default to sitting reclined or lying down.
Still, there's no way to pace in the grocery line-up where you have to hold your spot. Also I think most people really don't understand how someone they see walking down the street looking well (ha ha, if only they knew) could possibly have trouble standing. Standing still or sitting with feet down is really not a good thing for me, and makes everything worse!
So I'm trying to pace and keep moving whenever I am not sitting with my feet up or lying down. I consider myself lucky to be able to pace around again. It may even be helping the brain fog a bit.
I also get restless leg syndrome if I stay up past 11pm. It goes away after I've slept and never starts before 11pm. It is really uncomfortable and a strong deterrent from staying up, even occasionally. By staying up I mean staying awake lying on the couch watching a movie till 11 or so and then moving to bed, not actually being up doing things.
Anyway, just sharing some of my experience about OI. Take care all!
Still, there's no way to pace in the grocery line-up where you have to hold your spot. Also I think most people really don't understand how someone they see walking down the street looking well (ha ha, if only they knew) could possibly have trouble standing. Standing still or sitting with feet down is really not a good thing for me, and makes everything worse!
So I'm trying to pace and keep moving whenever I am not sitting with my feet up or lying down. I consider myself lucky to be able to pace around again. It may even be helping the brain fog a bit.
I also get restless leg syndrome if I stay up past 11pm. It goes away after I've slept and never starts before 11pm. It is really uncomfortable and a strong deterrent from staying up, even occasionally. By staying up I mean staying awake lying on the couch watching a movie till 11 or so and then moving to bed, not actually being up doing things.
Anyway, just sharing some of my experience about OI. Take care all!