Tuesday, March 25, 2008

Questions, Concerns, and Worries

I did work out again tonight, but I'm not feeling quite so confident...about anything. Yesterday was Easter, and amazingly, I was able to play the keyboard at both of the morning services, with just rest in between. Normally, I actually fall asleep and cannot be woken up to play. It makes it hard to decide if I should keep the job or not. I'm certainly not in it for the money. But I don't want to abandon everyone. But I'm not really capable of doing the job right now. Anyhow, I guess I got lucky yesterday. After services, I went right to bed for about 2 hours. Then, I went to lunch with the family, which I also made it through. Gus took me home a little early. I spent the next 24 hours in bed, many of them sleeping. So of course, I did eventually pay for my over-doing it. Luckily, tonight I made it to the gym. But I felt pretty awful afterward.

I saw someone at the gym who I've seen only a couple of times since high school. That made explaining about my continuing illness very complicated, considering I was at the gym. It's one of those moments where I actually feel like I'm lying or exaggerating about my illness, which is really not fair. As soon as I got home (barely), my symptoms were horrendous. And even while I was at the gym, I was watching my heart rate very carefully, as it tends to skyrocket with all of the upright activity. My trainer has helped me learn to exercise safely by mixing supine exercises with upright ones. I only really exert myself if my body is near horizontal. This makes it a little easier to handle. But it is still such a challenge.

I feel so lazy when I'm spending 90% of my time in bed. It's hard to explain the reason for this, even to people who know about my conditions and see me quite frequently. I still get asked "Why don't you get out of bed?", "Maybe it would help to get dressed and ready", etc. It just makes me feel guilty for being lazy, when really, I don't feel like my body gives me a choice. Believe me, lying in bed is boring. This is not the life I want. But it is the life I have.

I've been questioning surgery a lot lately, after talking to some people about less successful outcomes to these operations. What if I get worse? So many things could go wrong with such invasive surgeries. I've dealt with recovery before, and I know that things don't always go as expected. For example, the muscle spasms in my neck and shoulders haven't ended since my fusion. What if the tethered cord surgery creates permanent lower back pain? It seems like a definite possibility. And if it doesn't help other problems, it certainly wouldn't be worth it. But on the other hand, it could prevent the deterioration of my bladder control.

Well, my mind has been so busy. I feel like I never really think about anything else. Because it is such a huge decision on my shoulders. Maybe I'll feel better after talking to Dr. B. If only May 15th would come a little sooner...