I am sick of being sick. I have been sick since January 2020. I have been unable to sleep a full night and have been in pain daily and nightly since February 2020. And I am only in for more. And I am sick of it.
Every night it’s the same thing: I fall asleep around 9:00 p.m. and I am awake around 10:00 – 10:30 p.m. I am in pain and my legs are restless and I cannot fall back asleep for hours, constantly shifting position and trying to get comfortable. I typically sleep between 2 and 4/5. Then I am up. I am in bed due to pain/discomfort most of the morning and fall asleep without even trying for 1/2 hour stretches, sometimes a little longer. I have been a lifelong 9 hour a night sound sleeper. This is torture.
I don’t know if my colon is getting better or if the bowel meds are making me sick. I need a doctor I can call. The team approach that I mentioned earlier in this blog was one that involved over a dozen residents, PAs, and doctors whose names I never knew – a constantly rotating cast. In my view, as a patient, it was a disaster that provided me with conflicting information and no point of contact. A team approach that I would appreciate would be a doctor from each specialty that I need (i.e., medical oncology, gastroenterology, urology, etc.) who confer and whom I can call.
Most importantly, I don’t know what’s happening to me. Are my symptoms normal? No one told me what to expect when I left the hospital. So I am in the dark. A very unpleasant place to be.
I need to change my focus but that’s hard to do when suffering physically. I need to force myself to think ahead, to dream, to want, but I just can’t seem to believe that picture. Maybe I need to believe it whether I really do or don’t. I need to pretend until it feels real. I will try …
Goodnight for now,