Based on the percentages that I am seeing of the population that suffer from auto-immune diseases, it will resonate with many readers as I describe my recent journey with my own AI buddy. It was suggested that I name my auto-immune terror and perhaps give it a personality of its own as it will continue to be my life long companion.
At first, admittedly, I did not really appreciate the concept of playing with something that I find much less than a laughing matter. In fact this life-time auto-immune monster has made a dark blotch in my life which has left me hiding, deeply frustrated, and at times even embarrassed.
Looking back a few years we begin my AI story when I was a toddler and my three year old body first decided to try to kill itself with an asthma attack. While that particular AI has been identified it paved the start of my yellow-brick-road experience to the land of AI and the various joys that came with it. Asthma was something that I struggled with in my youth and various times as I have aged.
About seven years ago, however, my body sprang forth a new exciting reaction which tied together more symptoms rather out of the blue with something that looked like a TIA stroke. This event, as absolutely painful and life changing as it was, necessarily provoked a binge of testing in hopes of finding the cause, as statistics were made known to me that my chances of a repeat stroke were very high. Test after test after test, then a few more tests, and a great many tears shed chasing this ghost through my body.
My Ghost… MY GHOST
This damn ghost that I knew as an auto immune ghost because of the fun reactions it tickled my body with, the interesting pokes and prods here and there that did not seem to tie together in any way shape or form.
Slowly I was embarrassed to continually tell my family that yes I did in fact get another negative test, and yes there will be another round of testing next week. My food sensitivities are an annoyance, and trying to describe my sleep patterns make me seem more like an odd duck than someone who as just conformed to the way her body exists. I tried to explain my relationship with many things since my stroke but trying to explain how much the level of things have changed is difficult when it is the nature of people to wish to relate to each other.
I was gifted an article, and I do say gifted because reading and relating to other’s passion is something that helps me get through my day, by the man who is helping me cope with my ghost, as he has his own ghost. This story is one that resonated with him when he was doing early research and putting a name with his AI buddy. I am including the link as a means of storing it, sharing it with those who suffer, and as a way to help those who have no way of relating to this story to better understand what it may feel like to have an auto immune companion travel with you for whole of your life. Please find the Spoon theory here.
In a way the kind of embarrassment my ghost has brought me is similar to the black lace underwear you keep hidden under your less exciting bra and panties in your “unmentionables” drawer. You know very well it is there, and once in a great while you put them on and wear them to work, keeping a straight face even though you just feel a bit different today. That is how my ghost made me feel for years.
Sadly, Mr. Ghost no longer feels like being behind the curtain or buried under the cotton briefs. Tuesday October 4, 2016, of last week he made his full debut a full frontal attack, one in which he reminds me of himself every few minutes. A glorious moment in time where My Ghost has altered my life, the way my children can hug me, how I can or cannot use my hands, how close I stand next to people, how I open bottles, how long it takes me to find a comfortable spot to sleep, how my body regulates temperature, and I have no way of determining if or when this will ever find a medium again.
Once again My Ghost went in for more blood testing, the difference this time is that he was put into a family and pre-diagnosed. He has a general name. But this time, the major difference is… he doesn’t need one for me to start to accept what he is doing to me. This time he doesn’t have to come back with a positive for me to let go of the embarrassment and finally tell my family that yes there is a problem and I need to stop hiding from it. This time as My Ghost has made himself center stage I will not hide from the world, I will recover for me; I will not be frustrated at my body, I will learn to count my spoons better; I will not be embarrassed, This is NOT my fault.