For reasons I will never really be able to truly understand or describe there are somethings about my Autoimmune diseases that is utterly, completely, unbearably intriguing! Yes… I said it. Intriguing.
Don’t get me wrong, I don’t LOVE being sick, having my body attack me, being in terrible pain and all the weird, frightening, unpredictable, embarrassing and heart breaking symptoms that go with it. I HATE those things with a passion beyond description. But still… you have to admire the biology of it. The medical mystery of it. The incurable beauty of it. The way the body that worked with me, helping me to work, play, dream, live, laugh, explore, learn, my life long partner has slowly stopped doing the things that it did all day, every day, without me ever knowing or thanking it, and it started attacking me! Some genetic misfire caused a chain reaction and more and more of my beautiful immune cells that protected me and cared for me started attacking me; no longer being able to recognize the difference between my tissue, bones, muscles, brain and a hostile virus.
Every day and night, in a ceaseless attempt to do its job, the job it has done since I first started folding DNA and growing inside my mother, it keeps battling and fighting away… at me. Beautiful. Marvelous. Amazing. Broken. Like blind little ninja’s unleashed inside me. The only thing I can try and do is slow it down so that there are so very few of them that they can not damage me so much. I do this with medications called Immuno suppressants (Methotrexate, Orencia, Prednisolone). And for now they are my only ally in the war, but it is like trying to stop two armies fighting each other by standing in the middle of the battle. I am constantly being hit in the crossfire and it hurts. It hurts me and it hurts the people I love too.
I used to understand my body and I used to be able to predict how it would feel, look, behave and respond, with a degree of certainty. That is a relationship that we no longer share. At best, I hope that we will learn how to like each other again. I no longer feel betrayed by it (this took many years to overcome), but I am developing a far healthier respect for it. I now know that when it is cranky and misbehaving I must listen. I cant ignore its little warnings or I will be reminded how bad things can get AND I have learned that it can be a cruel, surprising, scary and an unpredictable bully sometimes. But I still must love it. It lets me spend some time playing with my fur kids, husband, friends and loved ones. It lets me have some time in my garden. It lets me do some drawing, writing, laughing, watching movies, and go for the odd drive with my husband. If I get to do anything at all its all because my body is still trying to help me. Trying to do some of the things we used to do together.
This may seem quite a strange post. Since I started out writing about how amazed I am by the diseases that inhabit my body. I still AM amazed. I am still in awe of what is happening inside me and how after all these years we still can’t cure or stop it. After all the research and all the ‘breakthroughs’ over all these years. We still can’t master something so small that it is ‘invisible’ to everyone else, yet enormous to me.
What I find so amazing about this is the science, the biology and the humanity of it. As we look into the cosmos and watch the destructive force of an exploding star and try to understand it with our humble and limited intellects, in the same way I also look at the chemistry, the biology and the complexity of the human immune system with the same ignorant wonder. We can’t possibly ever hope to understand a thing until you first learn to respect it. And I do. I respect it very much. It has my complete and undivided an attention!
Where we go from here, my body and me, is unknown to me today and it probably is best that I don’t know because like all relationships, its good to have a little mystery and a lot of hope.