Planning is everything when you have an autoimmune disease. You plan and conserve energy and hope it will all work out. No matter what though, you add the following caveat or disclaimer with all your activities. *I may not be able to do this activity because of the disease* It really sucks because you would like to do all you plan.
I had this happen this weekend. I had several things planned. Friday fell through. Saturday I spent the whole day at a wonderful spiritual convention. Saturday night I was too exhausted to attend the class reunion I wanted to go to. Sunday I went back to the convention and spent the day again. I totally enjoyed the convention! It was what I needed for my soul! It gave me energy to go forward on the bad days. It made me happy!
The convention was great. However, today I guess the big bad wolf decided I needed to be reminded that HE thinks he controls my body. I literally spent the whole day in bed, in pain and swollen in my limbs.
I am blessed to have a wonderful husband who has taken such loving care of me today while I was bed bound. He fed me and made sure I was ok. He is a keeper!
Today went by with little fanfare, because in between pain meds and bed, I slept most of it away. Seriously. I hate when this happens. It takes me down and stops me in my tracks. In effect, I have no control over it. It is called toxic fatigue. Anyone who has lupus or fibromyalgia knows exactly what I mean. If I had tried to push through it and go ahead with the day, I literally would have fallen over and been stopped. It is that powerful. Those who do not have it, find it hard to understand how it can affect your life.
So this weekend I had major ups and major downs. Bumps in the road, as it were. Such is a week in the life of a person with lupus. You get to do some things and not others. You have to conserve energy. You have to decide how much it is possible to do. You hope for the best and prepare for the worst.
It is a dichotomy of emotions and actions. It is not easy. It is my life though, and I have learned to deal with it. I still get angry about the way I cannot do all I want to do. The realization is that I am the one who deals with it and lives it. I would not want anyone else to go through this. So, this is another week of the roller coaster! Indeed, I am daily living with lupus!