Wednesday, September 22, 2010

Narrative Note

Well it was a week ago this morning that I was discharged from my local hospital, after 20 hours of IV Dextrose.
I felt absolutely terrific the morning I left the hospital. I came home and took it easy. As the day went on my nervous system became increasingly more irritable. I wasn't scheduled to work again for 7 days so I decided to manage by resting at home and maintaining carbohydrates orally. It has been a week of moderate turbulent nervous system activity coupled with the discomforts of chronic flaring thyroiditis.
Today I find my mind catastrophizing... I am anxious and intolerant of my family members... I am scheduled to work tomorrow... what if I am still having "neuro-turbulence" ? What if I can't manage it at work... if I miss too much work I could lose my job. I am also scheduled to teach a 5 day Certified Medicine Aide class for my local community college. That means that between the two jobs, I am working full weeks, for the next 3 weeks. Then I am scheduled to go on vacation with my mother, back to my home town. Oh how my heart has been set on that get-away with mom... I feel overwhelmed, over-booked, and anxious about how things are going to turn out in the midst of uncontrollable "neuro-turbulence" and the lurking potential of AIP escalation.
I tell myself to stop. Calm Down! It is hard to do, especially when I never know when AIP will "turn-up the volume" and "sucker-punch" me when I need to be at my best. Ativan helps in these situations, but I am a, "pill-phobic" person by nature (I absolutely hate taking medication). This morning, I took the Ativan and I am beginning to calm down.
I need to remember that when I am at peace with my disease I feel better. It seems that when I have an extended period of relative, "neuro-calm" (like this summer) I like to forget that my disease is part of who I am and how I need to manage my life. When considering life: I need to take a less intense perspective. I need to look at my date book and avoid long stretches of back-to-back obligations. I need to schedule "Rest Days" to give my nervous system a break. If the day comes and I am feeling great, it becomes a happy gift. My family and I can take a spontaneous adventure, or I can do a project that I have wanted to do. If the, "Rest Day" comes, and I have been struggling to get through each day prior, it feels as though I have finally crossed the finish line! Yeh Me!!
I rest, I eat carbs, I try to keep sensory stimuli to a minimum, I even take medications to help sometimes. Then after a few days I usually feel well enough to go through another cycle. This plan works well for me when I stick to it and when my family supports it. When I veer from the plan it becomes a gamble... a roulette of sorts...occasionally it turns out alright, but the majority of the time over the last several years... it has turned out very badly.
Fortunately I had a fairly "neuro-calm" summer. I was faithful to "the plan". Then as the end of summer approached... I veered from the plan...I took a gamble... I over booked and under-rested myself. I gambled and I lost. The added stress of being frustrated at my disease is a vicious cycle... It is really my own fault for having magical thinking... these situations don't just disappear.
As a nurse I have seen it with many many diseases... Diabetics, Bipolar patients, and the list goes on. When you feel better you think...I don't need this "treatment plan" anymore... and boom there we all are with a BIG reminder that, "Oh Yes we do"!!

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