Yet, I'm still easily fatigued and basic things tend to wipe me out quicker than they should. On a bad day, a trip to the grocery store is hard on me and if we end up there during rush hour, I am totaled. A vacation takes months to recover from. The past few days Vijay and I have been visiting with his family from India and my throat is getting sore and I can feel feverishness coming on.
On the other hand, I just have just enough energy now that I'm angry about my situation more so than sad or disenchanted. I'm pacing in my cage now. I am still not ready to go back to the school of my dreams, which has me disappointed, restless, frustrated and angry. I am 31 years old and no where near where I think I should be. I do everything I can to avoid talking about myself in social situations because my lack of achievement without the context of this bloody health crisis simply smacks of failure. This is on my mind constantly. I heard a Zen saying the other day: "The obstacle is the path." I am currently meditating on the immensity of this statement as it applies to my life. As my youth fades and I am forced to eat my big life expectations, there in the rubble perhaps I will find the material with which to build a paradigm for my new life. Taking the plunge will involve completely letting go of the expectations that I brought to this place. The expectations that continuously haunt and undermine me.
Despite the anger, the frustration and the sense of being trapped, I am still secretly a glass half full type of person. Every time I gain a fraction of the function I had before all of this, I accept it with voracious gratitude. I am continually stunned by the kindness and selflessness demonstrated by my partner for never acting like any of my limitations are a burden to his life. I am happy to have a new plan. Even if it too falls apart.
Speaking of a new plan, the doc. is having my cortisol levels checked again. I have to collect saliva samples and send them to a lab where they will measure the cortisol fluctuation through out the day. The last time, Dr. Weiss said that they were, "as low as you can get" which is bad. He also found me to be suffering from an autoimmune illness, hypothyroidism, very under active adrenals and viral infections (mono & HHV-6).
My most recent tests say that my viral levels and my thyroid levels as well as their antibodies are normal. After I find out about my current cortisol levels he may want to put me on low doses of cortisol because he thinks that the remainder of my ongoing fatigue is from adrenal issues. Hopefully getting the next step out of the way will assist in getting me even closer to normal, whatever normal is. Will I remember once I get there?
I'm going to close with my new goal. I haven't figured out yet how to do this. I realized the other day that I have been hiding the extent of my illness from much of my friends and family. The new goal is to start talking openly about the obstacles that I have come up against over the years. I have been so afraid that people will assume that I am making excuses or that I talk about being sick too much or that "it's all in my head" (which is the worst thing you can say to someone suffering from chronic illness, the runner up being that you're just making up excuses). I have accidently, unknowingly created a place where no one understands my situation entirely or what happens behind closed doors. No one (aside from my partner) sees the days of being bed ridden that stretch into months punctuated by moments where I summon enough energy to go out into the world and pretend to be well, only to go home and collapse again. The other day I was thinking, "who is this actress that I have become?" I have to start talking about this now or else for anyone anywhere experiencing similar obstacles and keeping it quiet, we are actively creating our own prisons for ourselves and each other. I think it's time to start taking responsibility when and where we can, when we have the energy to do it. No one else will be our advocates.
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