A few things to expect...
Expect fatigue. Expect a slow recovery - but do expect to get better. I was very very sick and now I am doing very well - so keep the faith.
Rest before you feel the need to - do not puch yourself, do not over-do it. If you do, you will have set-backs and a slower recovery. If you take losts of naps and rest between naps, you will get better faster, IMHO.
Expect people to not understand how sick you are.
Expect to stay closely monitored by your docs the rest of your life, including lab work every few weeks - even in times of "remission."
Expect all of us to be there for you. Come to us with all of your questions and concerns. We are not dcotors, but we are WG survivors and caregivers with a wealth of experience, knowledge, research and support to share.
Hang in there - you will get better. Many have returend to full-time work and pretty much normal lives again! My life is very busy, full and back to normal, except I have lab work done every 6 weeks & drive 200 miles to see my docs every few months; and I take meds, which I am tapering now - and I eat anti-inflammatory foods & supplements to help the meds along - which I have had miraculous results with!! Others have had good results too - improved labs and they feel better!
But that is my new normal life. There was a time that I couldn't walk 15 feet without having to stui down and recouperate from a racing heart and massive sob - shortness of breath and now I can walk 3 miles plus without getting sob or my heart racing. I couldn't excersize in the beginning but now I can do so much! The pace I have been keeping lately, I think I am making up for lost time!
So keep the faith - expect a slow recovery - but take your meds, drink your water, rest a lot, and expect to get better.
Rest before you feel the need to - do not puch yourself, do not over-do it. If you do, you will have set-backs and a slower recovery. If you take losts of naps and rest between naps, you will get better faster, IMHO.
Expect people to not understand how sick you are.
Expect to stay closely monitored by your docs the rest of your life, including lab work every few weeks - even in times of "remission."
Expect all of us to be there for you. Come to us with all of your questions and concerns. We are not dcotors, but we are WG survivors and caregivers with a wealth of experience, knowledge, research and support to share.
Hang in there - you will get better. Many have returend to full-time work and pretty much normal lives again! My life is very busy, full and back to normal, except I have lab work done every 6 weeks & drive 200 miles to see my docs every few months; and I take meds, which I am tapering now - and I eat anti-inflammatory foods & supplements to help the meds along - which I have had miraculous results with!! Others have had good results too - improved labs and they feel better!
But that is my new normal life. There was a time that I couldn't walk 15 feet without having to stui down and recouperate from a racing heart and massive sob - shortness of breath and now I can walk 3 miles plus without getting sob or my heart racing. I couldn't excersize in the beginning but now I can do so much! The pace I have been keeping lately, I think I am making up for lost time!
So keep the faith - expect a slow recovery - but take your meds, drink your water, rest a lot, and expect to get better.
posted by Cyndi Olsen @ 7:39 AM
9 comments
