I'm not sure whether you have noticed or not, but I do not relax well. I never have. Relaxation is laziness. Resting is wasted time. I could be doing something "productive". I advocate resting and relaxing for other people. I totally realize that it is necessary to keep the body's batteries charged in order to keep the machine running. And yet for me, for some reason, it is not ok. I've never had to accept that I wasn't able to do anything I wanted to. I probably should have, but never did. If I tried harder, or maybe just differently, there is nothing I can't do. I may do it slower or much worse than others, but I could still do anything I wanted to do. Now there actually are things I cannot do and that really sucks.
One of the best things about being here at the NIH is the wide variety of research, treatment and interest that goes on here. I am not only in the care of the best Doctors in the world in the field of Endocrinology and Cushing's Syndrome, but also a gaggle of Occupational, Recreational and Physical therapists all engaged in making my fight against the condition a success. This morning was filled with a pituitary MRI complete with dye being pumped into it, and multiple timed blood draws after drinking a bunch of glucose goo. But this afternoon, I was able to focus on the half of my situation I am not any good in handling - accepting and accommodating the limitations that Cushing's has put on my body. I am realizing how much my focus has been on how I'm going to get back to normal after they solve the Cushing's problem (which, since April, I've assumed would be "any day now"...) when it should be how I'm going to get through until they solve it.
Getting back vs. getting through. Getting back is proactive. Proactive is good. Getting through is surrender. Surrender is bad. See where I'm going with this? I have some (ok, alot) of headwork to do.
I had a second meeting with my wonderful Occupational Therapist this afternoon who is helping me with looking at my energy level as a checkbook. My balance is unpredictable these days, but I still can't wait until I'm overdrawn before I make a deposit. It is detrimental to my overall health if I do. Pushing through is not a good option. She is giving me resources on energy conservation, helping me organize what I'm doing to minimize wear and tear on my body, and generally affirming that this piece of the puzzle is just as important to my overall health as the others. My mantra for now is to implement everything I can, work on my mindset, and learn how to accept and accommodate my limitations for as long as I have them. Fran is in for a lot of work with me!
I also had a second meeting with my fabulous Recreational Therapist this afternoon. We took the opportunity to walk around the 1st floor of this Clinical Center building that contains beautiful artwork on the walls, garden atriums, and activity areas as we discussed the importance of meditation, sleep, and holistic healing options. She has given me a great listening tool to help me fall asleep (cortisol tends to disrupt sleep patterns) which I used to great effect last night, scheduled relaxation therapy and massage sessions, and encouraged the appreciation of the art and beauty in the building as I take my walks. Not to mention, I'm signed up for the afternoon bus tour of Washington DC on Saturday!
I'm not sure exactly what my point is here. Just know that this stay at the NIH is the absolute best opportunity anyone could have to heal. Granted, you've got to be in pretty piss poor shape to get into the program, but once you're in, you couldn't be in better hands. I am taking every opportunity, whether it be traditional or non-traditional, put before me to beat this thing called Cushing's and get healthy again. And I'm trying to shift my focus from getting back to getting through. And that's a good thing.
On a completely different note, I have seen some of the best haikus from you guys!!! I have been smiling all day as I read the emails and comments on the blog! You all are awesome! I'm thinking of compiling all the happy little haikus into a post so you revel in the creativity of my family and friends (and dogs) as I am. So keep those haikus coming and I will definitely keep smiling!!
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