I haven’t posted in awhile, but I am still here. It has been a hard but fulfilling year in many respects. Both of my parents passed away within months of each other, but I had the opportunity to be with my mom in the days prior to her death and it was the single the most meaningful experience of my life (and I hope she was aware enough for it to be meaningful to her too). I just celebrated my third year wedding anniversary with M and we bought our first house together. We continued to grow closer as a couple and, with my step-sons, continue to grow closer as a family. I have been busy working and living, squeezing as much as I could out of life while the going was good. I have had these neurological symptoms progressing in the background but they were for the most part in the background. And I had made a conscious effort to be diligent about following them and keeping my doctors up to date on any changes but not letting troubling but manageable symptoms become the focus of my life.
That has become quite a bit harder now and I am back at home full-time. It appears likely I am having recurrence of Cushing’s. I have about 2-3 hours a day when I can putter around the house or read a book or answer email and then I am completely exhausted for the rest of the day. Some days, I have really extreme headaches and stumble when I walk. Doctors appointments, tests, and bed rest have started to play a more central role in my life.
This time, though, I am going to do things differently. I realize this is partly a luxury – I have doctors I trust now, I know the routine, and I have more realistic expectations about what can be figured out in a certain amount of time. I had major mental obstacles that I had to overcome the first time I got sick – how closely my identity had been tied to being an athlete, to being thin, and to my job. I have learned that I still exist when these things are stripped away.
I used to mourn the fact that years of my life had been lost to illness. Now I know that is not true either and this realization will hopefully make the next part of the journey easier. While my function has declined and I am not working or exercising or doing many things I love, time has not stopped. Today, a day that I will spend in bed, is the same fraction of my lifetime as any other day. I am committed to do each day justice, even if that just means being present when I curl up with a pile of dogs to sleep or to feel a sense of accomplishment when I carry out a small but manageable task I have set out for myself today. I am not losing life to illness – today counts too.
In addition to getting better, my big goal for the next chapter of life is to “do sick” better this time. I am going into this next chapter optimistic but realistic too. I am still going to have shitty days and rant and be impatient, but am aiming for a higher ratio of zen days to depths of despair days on this round. Let’s see how it goes.