Hey Sweet Lady,
I can somewhat relate to your dilemma. I was diagnosed last year in March of sle. Up until the August before I was a healthy 49 year old that was always on the go and never afraid to take on new projects, help out my neighbors, have weekly gatherings at my house and holidays and now I've had to pretty much give up many of the things that brought me so much joy. I was PTSO President for years at my kids school and had to resign after last year and pretty much don't volunteer to do anything for them anymore cuz of how I feel. I use to walk my dog about every morning and now it's about once a month because everytime I try to get back out there, even in little spurts, it always comes back on me. Everytime I start to feel good, something else seems to crop up unexpectedly, and that, of course, is how this disease is. If you want to take a vacation, you're afraid to plan anything to far out, because you are not sure if by then you will be in a flare. It really sucks, cuz you will get that phone call inviting you to go some where or be a part of something fun, and you are afraid to commit. All I know is that I take it a day at a time and hope for the best, and make sure I get plenty of rest because that seems to be a big factor on how I feel from day to day. We all have different levels of pain and various parts of our bodies that are affected by the disease, but one thing is for sure, we all have to be supportive to each other and take it one day at a time. I always try to think that somewhere out there somebody has it worse than me and pitying myself doesn't help anything. Hope you find what works for you and hang in there, after all, that's all we can do!!
Hugs and Angels
DX- sle and carpal tunnel
RX- plaquenil, prednisone, lisiniprol, etolodac, hormones, darvocet when needed and multivitamins