My elbows. And the tip of my nose. What do those body parts have in common?
They are the only parts of me that don’t hurt (right now any way). I have been in one of the hardest flares of my life. Too exhausted to stay awake. Too much pain to fall asleep. Too fatigued to text (so grateful for voice-to-text software). Overall functionality at a minimum due to pain and weakness.
Oz has always said he wants to understand as best he can what fibromyalgia is like. I told him that one day I will put stickers on him everywhere I hurt so he can kind of understand. But right now he is getting all his information online.
I love the fact that he researches so much. My family got so overwhelmed with my fibromyalgia that they gave up researching–and even discussing– it with me. He has even found some new theories to explore, in particular Lyme disease.
But I want more than theories found online.
I want to feel human. Sometimes being sick trumps being human. All of the sudden you become homo diseasis or in my case homo diseasis fibromyalgellan. The focus becomes pills. Treatment. Insurance. Trying to fake being well and minimalizing others concern for you. Trying to remember what tests and medicines you have tried, while trying not to admit that you cannot even remember the details of yesterday.
But do you know what I really want to remember? What it feels like to sleep peacefully. Dream daringly. Try fearlessly. Hold hands until they get sweaty. Fall in love with a movie. Sing my heart out to the stereo. Drift off to sleep listening to someone you love’s heartbeat.
My brain is on such a high pain alert, it is hard to even imagine those things, let alone the memories that hold them.
I told my best friend that I am finding it hard to validate this kind of existence. This subhuman lifestyle. Take it for what you will.
I was supposed to study abroad twice this summer. I am not sure that will happen. I am supposed to start a new job Monday. I am also unsure this will work out.
That is the worst part of feeling like I am a homo diseasis fibromyalgellen: loneliness. There is a unique quality to the loneliness that comes from not being able to rely on your own plans for the future.
I want to be a homo sapien again, where the pursuit of happiness is an undeniable truth, not a myth or fantasy. And where… funny, I didn’t mean that to come across as a place.
Homo sapien, as a geographic/spiritual location. Has my visa been revoked (exceeded the legal pain limit, I presume)?
Is it the place where people create their own unhindered, beautifully failed, adventurous destinties?
And if it is purely a state of mind, would someone please draw me a road map?