I have a few friends who also have auto immune which really helps. We try to educate those around us to understanding our need for down time. And the unpredictability of our energy levels and disease issues ! When I have a flare up I just say I'm sick and disappear. I earlier wrote about the parkwood points plan from St Joseph's hospital in London. The second video on you tube has a brief outline of using a points system to help you gage your activity levels. It was meant for concussion patients. But has worked well for me. When I've used up my 15 points for the day I just say honestly points are done I'm going to bed !!! ( points for getting up and dressed, talking on the phone, making a meal, etc. ) it helped me realize how much energy these seemingly small tasks were using up of my energy to. It also was easy to explain to people I've used up my points and I was done for the day. liked the concreteness of it and my friends were educated as well. !! Following a very healthy diet has also been a big help for me. Wheat free, organic and as natural as possible has been the best. ! Learn to say I'm just not up to it and listen to your body has really helped me !! Leaning on this community has been very supportive for me too.

Hello again, @lillone43 ,

What great ideas! Especially your use of the "point system" I found some information (with videos) online at https://www.sjhc.london.on.ca/concussion-mild-traumatic-brain-injury/treatment-programs#abiweek1. I'm looking forward to looking at this. It will certainly be helpful to many people who are looking for ways of moderating their activity and rest level.

I'm also glad that you have found this community to be supportive of you. We are here and ready to listen.

Teresa