Like others I don't have a magic answer. I have MCTD which is lupus, scleroderma and polymyositis and have a large spreadsheet to document all my tests, procedures and doctors appointments over the past 5 years....too many to remember. If it isn't bad enough to have 3 major AI diseases all the secondary conditions make it even harder to cope.
All I can tell you is that I decided in 2005 when I was near death that I wasn't ready to die and that I was going to get better. That seemed kind of ridiculous at that time because my PM was out of control and not responding to treatment. Fortunately, the docs treated me with IVIG and saved my life. I was a bag of bones at the time.....lost 40lbs of muscles and was a quad and could not swallow. Again, I decided not to believe what the docs told me. I would be active again and, as improbable as it seemed (actually delusional given all the damage and problems), I did recover and now lead an active life.
All through my illnesses I just believed I would get better. I did not know how or when and was willing to accept my disability if things did not work out but would try like hell until then. The second thing that helped me was to take one thing at a time. Much easier said than done. In the beginning when I was so disabled and things so hopeless I took it one hour at a time and somehow got through it. I am still in that mode 4 years later and wish I had learned this 50 years earlier...my life would have been happier and easier.
Of course, you do have to accept what you have first which I am sure you know. That is not so easy for many.
Having told my story I also get sick and tired of dealing with things. My body lost 35-40% of muscle cells and I have to keep working out or I will go backward quickly....nothing in reserve with such losses. It is tiresome but everytime I think I can't do it I think back to where I was in 2005-6.....and then I think of something fun I really want to do. So, I play all kinds of mental games with myself to keep me going. The past few months has been tough and I have been focused on my wife's cancer and been neglecting myself. She is doing better now and I am refocusing on myself again. It helps to have a partner who reminds you to take care of yourself.
Don't know if this helps you at all. My "magic" is simply optimism, a certain amount of stubbornness and a somewhat carefree attitude of dealing with problems one at a time. If I had thought about all I faced I would have been overwhelmed emotionall and would not have made it.
Hang in there and hope things get better.
PS - One last thing. I help run a couple of support groups, help on the internet, and volunteer in a rehab hospital. I see people all the time who are MUCH WORSE than I and it helps to level set my emotions. It was difficult to do this at first because it brought back a lot of bad memories but now it really helps me and is rewarding when I can help someone.
MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.
Remain optimistic and you can overcome the odds.