Living in the Land of "Or"

Having mitochondrial disease is a daily challenge--balancing what I would like to do with the amount of energy I have available. Some days, opening my eyes and sitting up takes a tremendous amount of energy and seems worthy of a gold medal. Other days, I can go to the grocery store, come home, eat some food and check emails.

I live in a land called "Or". I can do this activity "Or" that. If I go to the grocery store today, I will be too tired to go to church tomorrow. I really desire to go to church, so I must turn down the request to go grocery shopping. Welcome to the Land of Or.  When I converse with people, I often find it difficult to convey to them that everything I do is always a cost-benefit analysis. What will this activity cost me (in terms of energy today and having greatly reduced energy in the next days to come)? Do I have enough energy today to complete the task you want me to do? Do I have other commitments today, tomorrow or in the week to come?

I sometimes grow very frustrated with people when they do not understand the Land of Or. If I am too tired to leave the house, enticing me with my favorite food will only cause me to feel twice as bad about having to turn down the offer. I also feel very sad because people often think I am turning them down when I decline their invitation. I have not figure out a way to make the rejection process easier. If I do not know the person very well, I sometimes find myself making up vague excuses like I have a busy schedule this week. I feel bad not telling the whole truth. But, living in the Land of Or, it is sometimes easier to have people think you are busy than trying to explain mitochondrial disease.