It was my first day of what I think will become my new routine of: getting up early, driving to the hospital (Isaiah drives, I'm not allowed yet), paying a ridiculous amount for parking, being stabbed for my precious blood, scarfing down some food, taking my medication, suffering through physio, driving home, and collapsing on the couch for the rest of the afternoon.
I was fairly tired by the time we got home but happy that I survived physio. I had gone on Friday and it was like a shock to my system. The tiny amount of stamina and muscle that I had built up post-surgery seemed to all disappear after the seizures and the last two weeks in the hospital. How does the body lose muscle mass so quickly but yet take forever to build?
I felt slightly better today but was still really tired at the end. And I didn't even do the full 15 minutes on the bike and walked super slow on the treadmill. I don't know if it's my body still getting use to the new medication or if I just need to build more muscle but I just feel a general exhaustion a lot of the time which is worse when I'm trying to push myself. My 10 "sit to stands" made me feel as though I was going to fall over and that is literally just standing up from a chair 10 times. It shouldn't be that hard. I seem to have left my leg muscles in the hospital bed during the last two months.
I guess I had this super romantic idea that when I was post-transplant the physiotherapists would have to be trying to get me to not push myself as hard for fear of overdoing it. If only. Ah, the delusions I had on how post-transplant recovery was going to go. While I tried really hard not to imagine the post-transplant world in fear of building it up too much in my head only to be later disappointed, I did see other people post-transplant at physio and was encouraged by how much progress they always seemed to make. But, of course, even for the little that I did expect, nothing has gone as I would have ever imagined.
It is hard when I see people who have had their transplant a month ago and are already killing it back at physio. I have to keep reminding myself that they don't have CF and they probably weren't as sick as me going into surgery or hadn't been as sick as long and most likely didn't have all the complications I had. I have come up with a million reasons why other people are doing so well at physio when I seem unable to progress past a three pound weight.
I know, I know, it will come with time, and it's still early, and I need to do everything at my own pace, and I need to be more patient, and I need to stop comparing myself to the other people who don't have giant wounds in their incisions or who didn't spend two months in the hospital. I've heard it all and I do keep reminding myself of all of those things. I know rationally that this is only the first step of a long recovery process and that at some point I'll be able to look back on this and say "wow, that sucked, I'm glad I've progressed from there." But just like a whinny child, I want to be at that point nowwwwww.
Okay, I'll stop complaining about my lack of energy. I'm not sure why it feels so different than when I was pre-transplant. It's not as though I had a super amount of energy and could do much then. But it does feel different somehow. Maybe it's because previously I was use to it being my lungs that were my limiting factor in how much I could do and it just feels different now that it's my legs? Maybe it's because I feel like I should be doing more whereas before I was okay with not being as capable as I knew there wasn't any room for physical improvement? Or maybe it is just because I've lost a bunch of weight and muscle and am actually less physically capable than I was pre-transplant despite the fact that I can breath comfortable while in this current state.
Whatever the reason, I'm very happy to be returning to physio on a regular basis even though I'm sure I will constantly complain about it. It really is the only chance I have to coax my muscles out from hiding. It's also nice to be back into a semi-familiar routine even though I'm still waiting for my movie montage part to happen that always skips over any the long tedious painful process.