I have learned so much from all of you so willing to share that I thought i might be able to help some also along the journey. Here are some things I know now that I didn't know before. Take what you like and leave the rest.
1. I don't put myself in situations where I may have to hurry. My brain doesn't function that way right now. It stresses me out and then I can't think and get irritable.
2. I know that I can't remember things so I write down and date everything or delegate the remembering to someone else.
3. When I know I have good brain power I work on the important stuff like finances.
4. My first response to any thing asked of me is usually no until I can think about it.
5. I suspect that people around me would really like me to be well and really don't want to know how it really is so I limit my sharing when asked how I am doing to "about the same or better or thanks for asking, how are you by the way" I have a nurse friend who likes the details and another friend with a chronic illness so they enjoy the details.
6. I save my energy for doing what I really love and feeds my soul. Right now it's gardening and I forgo other things to be able to do that. I ask for help, pay for help or make changes so things are more manageable. I am very careful not to hurt myself or overdo.
7. Don't be surprised if you end up seeing lots of doctors. I guess many of us are at the stage where we have a lot of different things happening in our bodies. It has taken 8 medical professionals of different types to diagnosis and help a painful arm and shoulder that I've had for a year. I have a bulging disk in my neck which I just got a steroid injection for and arthritis in my upper back which I also got an injection for. The upper back injection has taken care of rib cage pain which I had attributed to PMR. Sorting out these other issues I hope will help me lower my steroid dose which is currently at 14.5.
8. Surrender and let your life change for the better. I will be retiring at the end of the next school year, as well as shortening my day to 6 hours per day. I simply can't do the job anymore and I love what I do but I can't. This is 3 years earlier than I intended but I have tried everything to manage it and it is what it is. My life has consisting of working and resting so I could work again and that is just not good enough anymore. I believe that there will be good and exciting adventures ahead where I can be of service to others, so all is well.
9. Try not to beat yourself because you are not doing it "right". This is very much a do it yourself journey with not many guidelines to help. Hence the excellency of this group. When we are fatigued,,did I do too much, should I rest, should I exercise, is it the medicine? Am I doing it right? ( that is what lingers in the back of my mind and the answer used to always be no, but I am getting free of that mindset and reaffirming to myself that everyday I am doing the best I can for me)
10. I finally went to see a dietician after trying multiple dieting ideas. I think she has found what will work for me that I can live with forever. I also feel full and my weight is now trending down instead of up. Hurrah!
11. When I am out with people and start to swear at them in my head, it is time for me to go home. Red flag for me
Sorry for the long post but I have been carrying this in my heart and hope it is helpful to someone out there.