@lisalucier That’s generally the idea of it. People ask what she does about her fatigue, yet there is no answer. When she runs out of gas, this is the end for a while. No nap will help. At best just lay down and rest without sleeping.
It is a rotten disease with no cure and no end. Best we hope for is no further damage.
We plan life day to day. She might ask about going to visit the UK but the reality is, she doesn’t have it in her for the time zone change and the lines at customs. We often settle for a long car ride somewhere with frequent stops and unplanned overnights. That can be a fine adventure in itself. No sense crying about what could’ve been. Make the best of what we have left.
You have a difficult group to work with. There is no fixing anything here. Only we must learn to cope.
As for me, she doesn’t hold me back from going to the horse park or stopping by the plant to check on things. But I don’t go far or for long because I know what it is to be the patient as well.
Good place to end. Courage.