For the better part of a year or more my weeks have had to revolve around appointments. With 14 separate specialists each handling a different aspect of my health, you can imagine how the calendar filled up. Most of these doctors have done me well, and helped me cope with the different challenges of having a degenerative neuromuscular disease, but the past several months have left me exhausted each time I’ve had to leave my home, and resenting the several times a week that I had to spend my daily energy on seeing a doctor. Helpful, yes, but the truth is there is no cure, and they’re all just doing their best to help me be more comfortable and handle the unpleasant side effects of my condition.
My husband and I had a very honest conversation about all this, and agreed it was time to get hospice involved. Instead of running all the time from doctor to doctor, I wanted to spend more time at home with my loves spending what energy I do have on them. I needed all the doctors consolidated into one master plan. It was the /best/ decision.
The palliative care people? They’re a different breed. I remembered this from my days working on the ambulance, but it was reaffirmed to me the first time I met my new team. They aren’t out to find me a cure; their goal is to keep me as comfortable as I can be with what I’ve got, and that is exactly what I needed. I was met with such kindness. They weren’t rushed and bothered like so many; they took the time to see and understand me. They acknowledged and affirmed everything I was going through and feeling, and they committed to only do what I needed most.
Our days have slowed down. I have found myself with more energy because there is less running around. I’m so deeply grateful to shift our goals and focus on loving each other even more. My doctor is so kind, and readily available when I need something. When I landed in the hospital with septic pneumonia recently, my palliative care team was there, and they were the ones who stayed extra in my room and laid comforting hands on me while we spoke, asked me how I was feeling, and truly sympathized with the pain I was experiencing and wanted to help. I am learning a whole new level of compassion from these people, and I can’t help but wonder if I show the same love when someone needs me. I sure aim to, and I’m thankful to have such incredible examples showing me the way.
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