Today I scheduled my infusions. The first will be a week from today; there will be four all together. This is all very good.
I am frustrated though by how stupid long this is all taking. The FMLA time off that I have approved runs out the Monday after the first infusion. Unless this treatment is super magic (I doubt it, most treatments aren't) I don't see how I can possibly go back to work at that time. That is frustrating and sad for a million reasons.
It's sad because, as I've mentioned before, I have the best job and I really want to go to work. I have great coworkers and I want to hang out with them.
It's frustrating because I've been stuck at home feeling sick and tired for ages, and have nothing to show for it. No matter how much I sleep, I'm still so tired. With all the rest I've been getting, none of it has been recuperative. I need external intervention and, yes it's coming and I'm grateful for that, but it has taken so long for it to happen! I've lost a month of my life for what feels like nothing.
Have you guys had enough of reading about me being tired yet? I'm afraid that is kind of my entire life right now. I've certainly had enough of being tired. I feel like the biggest slacker in the world because I literally sit on the couch all day, and when I do that, I actually feel ok. I don't get worn out, I manage to not walk in to any walls. I'm on just enough drugs that I actually don't feel that sick... as long as I don't try to do anything.
This is frustrating because I start to feel like I'm better and can do more. Some days I can do more. On Monday I has so many spoons! I did dishes and laundry and picked up the living room and even made dinner. Yesterday, I had fewer spoons. I was so encouraged by Monday though I tried to keep the ball rolling. I got a very harsh reminder that my body is running at very low capacity. Want to know what I did that sucked all my energy away, not only for yesterday, but for today as well? I did 20 minutes of yoga (super easy, yoga for beginners who are also old and have never done yoga before), went to the grocery store and watched a movie with a friend.
Today, I made Matt come home and make me lunch because I was too tired to feed myself. Thanks yoga. I tried napping this afternoon, and sleep didn't really happen. I know I mentioned in an earlier post that the prednisone-induced insomnia was getting better... yeah, that was a lie. Or maybe I jinxed it by writing about it.
I am determined to ruin my day tomorrow too: there's a free kung-fu movie playing tonight that I have been looking forward to going to for weeks. I'm honestly exhausted, but I really really really really really want to go to this movie. So tomorrow... who knows. I'm living on borrowed spoons.
The thing with Big Bad Sick like this, I guess, is that it really is ridiculously long term. A month lost to fatigue is probably something I should just consider par for the course. It is frustrating though. I have never been one to be very satisfied with stasis. I love doing things and going places - figuratively and literally - spinning my wheels and being completely unable to make progress is the worst thing.
I have more things I wanted to mention, but sentences are getting harder to string together. I really should concede defeat and give up on my movie tonight. I'm sick of being careful about my energy levels though. I know I'll pay for it, but this movie has hopping vampires. Totally worth it.
P.S. I'm working on a throat post to go with my nose post. I'm trying to make a video thing. I hope it's neat.