A weighty problem!

[Geoff]

Now the initial euphoria of at long last having a diagnosis has worn off, the bravado :

I can associate so closely with this remark, I had to smile. Good Luck Jules with going back to work, please listen closely to your body and dont be 'afraid' to step back and rest up when you need to. I found that high pred made me feel a bit like superman and the temptation is to overdo it. My wife has just retired as a school teacher after 27 years and I know what stress and strain you are going thru. Some very interesting posts here with excellent advice.

[NanTom]

I think it was a little better when he was in remission for several years! If he had a very good night of sleep during remission it was easier. We even took grand kids to Disney last year. It still wasn't what it was before Wegeners, but better than now. (That ended in May and we are seeking a new drug since Cellcept no longer works and he spikes a very high fever every time he tries Immuran). Wonder if any other Weggies have comments about this? Did anyone reach a level of not experiencing the extreme exhaustion or give us help as to how to "work thru it" if you have a special event to attend? Good luck/health Dee!

[Sangye]

I schedule extra resting time before and after a special event. If I know that Saturday will be a long day somewhere, then I stay home Thursday and Friday and don't do much. I also know that I'll be unable to function much on Sunday and Monday. I haven't been able to get past the 2-day bumpers on either side of a special event day. Sometimes it's even longer to recover. Three day bumpers are tough, because it means I can only get out of the house once in 6 days.

[Jules]

Thanks Sangye - I wasn't aware of that side effect of the pred . . . will aim to take it easy to start with! Jules