Hi Lindy,
Sorry to hear you have this terrible disease. It takes some getting used too like any chronic illness.
I am 45 and I haven't worked in 6yrs. Just last year i was diagnosed with lupus and it got so bad i couldnt walk. Now with the help of a couple of good doctors and understanding husband and a boat load of meds i'm walking around and doing what i can, day to day.
To answer your question about day to day living, I do what i can. Wash dishes and that hurts my back so i usually sit after that. I usually sit after doing any chore or activity as it wears me out easily.
I've bugged the docs enough so they have given me the right kind of meds (non narcotics) to keep my pain level down to a 3 and that's only if i'm not flaring.
So, I've gotten to the point where i have to do something productive all the time.
I find inventive ways of doing things, ie. I sit in a chair with wheels while i sweep or mop my floor. I took up crocheting so i'll listen to the Bible on my computer while i crochet when i'm really tired or just take a nap for a few hours.
I have 2 dogs so i'm constantly cleaning, dusting vaccuuming etc. But they are my protectors and my cuddle buddies. I don't leave the house much as it takes a lot out of me just to shower and get dressed to go somewhere most days, never mind getting there and do anything. Thats something i have to prepare myself for regularly.
I just take one day at a time and do what i can. If i can't then so be it. I'll plan to sit and surf the net or crochet and listen to the Bible or sleep til am rested enough to do something.
But I don't worry about it and i don't beat myself up about it.
I walked on the treadmill for 30mins yesterday at the slowest speed. Cuz even with my 2 slipped disks my fibromyalgia, leaning towards diabetes and long time high blood pressure, joint pain and anti depressants,, the docs say i have to exercise. I love my doc,, but times like these i just want to grab him and shake him! So i walk on my treadmill as much as i can.
Yesterday I went around the house and threw everything away that we had not used in 6mos - year. Little things like that can make a big difference.
Our quality of life has changed drastically and we have no control over that. The only control we have is, what we do with, what is left with our lives. I plan on making it interesting and fulfilling somehow,, i'm just getting used to walking now,, so it will take me a minute,,, but i'll get there.
Good Luck