I emailed my endocrinologist on Monday, telling him I’d really like to get off the steroids as soon as possible.
So as of this past Monday, with his blessing, I have gone down from 15 mg of hydrocortisone to 12.5 mg each day. Until today, I was feeling pretty good. Today, I’ve been tired since I woke up. But fatigue is a common symptom of weaning off steroids, so I don’t think it’s any big deal.
I am currently reading The Tao of Pooh by Benjamin Hoff. It’s pretty good reading for someone with cancer, I think. The chapter “Bisy Backson” is a particularly good chapter for people who are trying to wean off steroids. Being tired so much for the past couple of months, I am learning how not to be a “Bisy Backson,” which is Christopher Robin’s misspelling of “Busy Back Soon,” and a perfect description of Rabbit’s character – someone who is always busily heading somewhere and nowhere at the same time. All at a frantic pace.
When you are tired, it’s hard to be a Bisy Backson, but it is easy to fret over not being well enough to be one. I am finding the trick is to enjoy not being able to be a Bisy Backson. It is a change in perspective. If I don’t have the energy to get anything done during the day, I just sit in the sun a bit and watch bugs and birds fly. And I enjoy – or try to enjoy – not being “bisy.” I have to say, it takes some getting used to, but it can be very, very nice.
The trick seems to be to accept both myself and the day as they present themselves, not as I might wish them to be. It is much nicer not to fight against what is, but to go with what is. Allow it. Become part of it.
Still, I’d like to not feel so tired!
The plan is for me to stay on this 12.5 mg dose of hydrocortisone for another week and a half – two weeks total. And if all goes well, I’ll taper again, per my endocrinologist’s instructions.
Hopefully, today will just be a one time, little dip in energy. But also hopefully, I will decide to continue to not always be a Bisy Backson, even when I have loads of energy to spare.
It’s nice just watching the world go by.
And being part of it.