My name is Niki Ankylosing Spondylitis and I have a love/hate relationship. I have always thought of myself as being able to do anything I want to do. Not that I actually have done so much in my life but I always thought if I decided to find the motivation I could! AS has shown me that I definitely have my limits, it reminds me every day, but it has also shown me what I can overcome and what I am capable of in many ways.
I have always had a little back trouble and it got progressively worse as I started into my twenties but I ignored it and made excuses to myself. I am a little larger girl and have always been pretty heavy up top so I attributed the back pain to that. My downward spiral really started when I got pregnant with my oldest daughter at 24. Pregnancy for me was horrible. People always talked about how great pregnancy for them was and I thought they were insane. For me it was awful and I felt selfish and like a bad parent before I even was one because of it. I couldn’t sleep, I couldn’t move and I literally suffered through everyday of it. I have always been a very “keep your pain to yourself” kind of person and still am.
I don’t really talk about it and feel uncomfortable when someone else brings up my own pain usually. I feel like I am complaining and I HATE to see the look of pity and helplessness that comes over someone’s face so this is my disease and for the most part I keep it to myself. I have been told I have an extremely high pain tolerance which I think is true but also my secret is…. I kind of like it. I like talking my kids to school, cooking big meals, planning birthday parties, going to concerts, participating in PTO events, maintaining a greenhouse and large garden and thinking to myself “AND I did all that while being in pain that would bring most grown men to tears”. It’s kind of my own personal game I play to keep it hidden without anyone knowing. I heard a song a year or so ago and listened a little closer to it because of the irony of the title for me. It’s obviously about someone’s relationship and it’s to a chick but it describes how I feel about my own little relationship with AS better than I could have ever put into words and I literally sat there and cried after I listened to it a couple of times. It describes how I feel about sailing along smoothly and biting my cheek to get the through the day and then feeling myself flare up. Here are some of the lyrics.
Bones & Joints
by Finger Eleven
Cloud my eyes and tell me what to see
Every way I turn, the same disease
But I like it
Brace myself and hit the wall with ease,
I’m colliding, I’m not minding
I’ve been down here before, all my bones and joints are sore
Made my way out of the wreck again
I’ve been down here before, lost myself and so much more
Find my way out of the game again
Open up my head and take it in
Just like always, think about the ball and take a swing
Load the trapeze, what you need the most from me is yours
I’ll continue to deceive you, my friend
(and my favorite part)
You lost what made you you, or maybe you never knew
This describes so much of how I feel. I feel like every time I go into a flare-up it pulls me out of my world. My world with my two young kids, my husband, my job, everything. It’s like I feel it happening and literally have to brace myself mentally and change my meds. Then I as I am coming out of it, I feel like I have to work myself back into the game. I know I am lucky that I caught it fairly early and that I handle the pain well but it has been such a mentally exhausting and upheaving of my world and what I thought it was and would be. It took me a long time to get over who I thought I was and incorporate this into the person I am. I am working hard on doing that now. I have decided to embrace it as part of who I am. I am working on developing relationships with more ASers and letting people into my own personal world and all that comes with it.
Cumby Texas United States of America