This entry is difficult to write, and it may be difficult for some of you to read.
What I have been living with for many months now - mostly pertaining to health matters, but also filtering down to everything - has been so incredibly difficult as to be emotionally
unbearable most days. There aren't enough superlatives, upper case letters or bold fonts
to express the jeu ne sais quoi the place in which I find myself.
I am anxious and depressed. I am tired in body, mind and soul. I am isolating myself from people because just making conversation takes
too much effort to think about let alone to do. Few people know my "day-to-day," and while I know I need more people to be aware, to be among my circle of support, I have not been able to bring myself to open up.
My life - and the lives of many others living with cystic fibrosis, double lung transplant and an exhausting list of all the things that go with it - has been incredibly difficult. I have the tiniest capacity to tolerate or deal with all of the little fucking things that comprise my life, both on a regular basis and ones that pop up at steady, obnoxious intervals.
Additionally, in the last several months, my mind has settled into my decision to not go through another double lung transplant (assuming I could get approved with a so-so kidney and the new super bacteria I'm culturing in my lungs) so it's not likely that the future gets easier.
What this means is that every ailment, symptom, bad test result and subsequent treatment recommendation is a choice that I am weighing differently than I may have in the past. Is it really worth it? I have come to realize that my capacity for illness, feeling bad, and other bullshit that life throws at you is finite.
The New Weekly Routine
This past week, I completed my third week of photophoresis and my first week of pulmonary rehab. The photophoresis has gone smoothly. I got a port, the treatments are a little over two hours long, and I haven't had any noticeable side effects. I get these done on back-to-back days twice per week at the bone marrow and blood cancer infusion clinic.
Pulmonary rehab, which I'm doing three days per week, has overall been easier than I expected. There are definitely challenging aspects, like when I'm five minutes into riding the exercise bike, cannot conceive of how I'll make it to 10 mins, and feel the urge to grab for oxygen tubing even though my oxygen sats are nearly perfect. Rehab seems shorter and more streamlined than the program I went through both pre and post double lung transplant. I am in a medical group with people who have all kinds of issues. So far, I've met a man who had his esophagus removed and a woman dealing with nephropathy (nerve damage) in her feet due to a side effect of chemo treatment. Every class, we walk on the indoor track, ride the bike, and do weights, balance, and stretching exercises. Each session the time, difficulty, and resistance is increased.
It's not difficult to imagine that having five regular appointments per week, three of them involving physical exertion, would be tiring. I expected that. What I did not expect is for my muscles to take so much time to recover. I'm not talking about being tired after a workout, I'm not talking about being sore the next couple of days. I'm talking about an internal fatigue in my muscles in which my legs feel deeply and undeniably exhausted and out of energy. It feels like, "maybe if I rest for an entire week doing absolutely nothing my legs will feel normal again." I try to remind myself all the reasons that my body is taking its time recovering from physical effort, such as chronic lung rejection and super bacteria hanging out in my lungs. In addition, I know that processing the emotionally charged decline in my health takes an enormous amount from my body, too.
So, there you have it.
