showing up

One of the hardest things about having a chronic disease is making plans. You accept invitations reluctantly. It’s not that you don’t want to attend, in fact you are intrigued by how much fun it could be, but the fact is you just don’t know how you will feel the day of.

This is what I have been up against lately.

I am a very busy guy despite being disabled. I volunteer quite a bit. As Master of my Masonic Lodge I’m a very active Freemason in our many charitable endeavors. I have a small side business detailing cars that has supplemented my disability $ nicely and that can be as many as 4 days per week. I manage to juggle all of these things despite my health struggles. I occasionally reschedule things and sometimes outright cancel, but I get it done.
Just don’t ask me to make plans. There, despite my penchant for not breaking promises, I make no guarantees.

It’s an old cliche’, “life is about showing up.” In a nutshell, your attendance naturally implies a positive outcome. Chronic illness does not support this. Sometimes showing up is the worse thing that you can do. If it falls on one of those “listen to your body” days and you decide to push it and ignore the signs I assure you that the price to be paid is not worth it. So how do you know if the event you just agreed to attend won’t fall on one of those days?
You don’t.
As if I’m not neurotic enough, need I add the additional burden of guilt to the existing pile?

I pride myself in keeping my word. If I say that I want to do something I genuinely mean it. Unfortunately it’s a matter of the mind being eager but the body not being able. Some situations are less stressful than others. Many events that I get invited to are functions such as dinners and weddings, those are easier to miss because my attendance is not critical. But at many events my attendance is expected as a volunteer, often I am called on to lead. I will show up at those events 9 out of 10 times. Despite possibly feeling miserable. If I do show up, I will give the expected effort and I will make the most of the experience.
But I’ll pay for it the next day. It has happened multiple times and I have finally learned to take it seriously.

I’ve been declining more and more. The last few occasions I have been invited to I ended up canceling. One was a poker game, which I love, at my buddy Jeff’s house. He really wanted me to go, and I really wanted to go also, but day of I felt so off that I called and canceled. He understood, but it still bothered me. Yesterday I canceled on a motorcycle ride, which I almost never do, because in my sleep-deprived state I felt wouldn’t be safe.
It’s starting to be a trend. The only answer is to not accept any invites and make zero plans. I need every ounce of energy I have to tend to the commitments in the upcoming year as I lead my lodge as Master for another year. It is a monster commitment that I will be lucky to complete as it is.

I don’t know where to go from here. I suppose my good friends know better and don’t hold it against me if I don’t show. I’ve told some of them about this and they get it. I think it’s This all plays into a recent phase in which I fear deterioration above all else. I worry about my leg strength with relation to how well I can handle the Harley. I worry about my ability to do side work for extra money. I worry about my illness taking the ability to do those things that make me feel normal. I suppose I worry that I will stop getting invited to things.

One thing I do know, the situation is going to get worse before it gets better.