@Seven (formerly lnester7) That’s good news to hear. Even 3 months totally bedridden would of left you very deconditioned. How long did it take you to be able to walk a few steps? Were you able to get on to a commode beside the bed or were you using a catheter while unable to leave your bed? How did you build up your muscles to be able to walk? I know the recovery from totally bedridden would be a slow one but when did you notice the meds starting to help?
Well, I am a very over over overachiever so when I felt good, the first drug was Florinef, I walked about 2 miles day 3, suffice to say, that I crashed myself.
See the thing of OI meds dengerous is even though you feel normal at times, your AT is about the same or baseline.
So it is a complicated thing to figure your limits on meds vs off meds.
I learnt the hard way, to increase slowly no matter how well you feel, once you are on a bed/ house bound stage.
I don’t let myself diconditioned. Even on my worst I always tend to my muscles.
I ahve POTs so I am very conscious of doing something vs doing more, I prioritize my muscles ( over cooking let’s say). Now this days I ahve more issues because my joins are coming out. So I will need a PT to help me figure out new type of excercises to keep me from decondition ( I have the worst PEM ever!!!). So I have to balance PEM not crashing myself vs POTs. Not easy but doable.