Ankylosing spondylitis

The Beginning….

People keep asking me to share my story, so I thought I would follow in the steps of my fellow bloggers, Juliette Wills and Jane Lark, and start writing.

“There is nothing to writing. All you do is sit down at a typewriter and bleed.”
Ernest Hemingway

The year…. 1989

“The pain, it’s so bad, why does it hurt so bad?” These thoughts woke me from a dead sleep around 2 a.m. I couldn’t move, I tried to roll over but the pain shot through my back like an electrical current running through a breaker. I started to cry because I couldn’t figure out what was wrong with me. What did I do to make this pain so unbearable? As I was able to finally roll off my bed and stand up the pain began to ease. I walked around my bedroom and through the kitchen and back and tried to lie down, but as soon as I did the pain returned. “What the hell!” I cried as I tried to get comfortable. I had to get some sleep, I have a test in the morning, what did I do? Please pain go away, I need to sleep…..

That was the day that my life changed forever.

Over the next couple of days the pain would wake me from a deep sleep. I tried hanging from the door jamb, walking, putting pillows under my knees but nothing worked. I finally started sleeping in my recliner as this was the only way the pain stayed at bay.

I made an appointment with my doctor and when I went in to see him he just shook his head saying “I don’t know why you have this pain just at night”. Doc being a D.O., doctor of osteopathic, manipulated me and said “let’s see if that works” and sent me on my way. That first night after seeing him I slept like a baby, no pain. The next night I wasn’t so fortunate. I made an appointment to see the him again and this time he put me on some anti-inflammatory and sent me off for an x-ray but when the results came back he said “Joyce, there is nothing physically wrong with your back; I don’t know why you are in such pain.” The anti-inflammatory helped some, but there were those nights that sleeping in the recliner was my only option.

During this time I was in college, taking 18 hours a semester, and was not getting any sleep. Everything the doc gave me, from anti-inflammatory to antidepressants, did not work. I tried to meditate, sit in hot baths but those 2 years were hell to say the least. The funny thing was once I got up and got moving the pain just went away. “Why was this happening?” I wasn’t doing anything different from what I normally do. I didn’t overexert myself, I wasn’t a workout queen. I had two kids who I took to their activities and sat on the sidelines to watch. I wasn’t jumping up and down, twisting and turning, so why did my back hurt? And why does it only hurt at night?

For 2 years the pain would come and go, more coming than going and nothing but sleeping in a recliner would help. The pain was so severe at times that I literally woke up crying. It hurt so much I couldn’t get out of bed. Some nights it would take me an hour to roll to the side so I could sit up and even that was hard. I finally stayed in the recliner at night because sitting up was the only way I could get sleep. I finally came to the conclusion and the realization that I must have drawn the short straw because I knew my life would never be the same….

Next week… The Diagnosis

5 replies »

  1. Oh……flashbacks to those early days. I remember just writhing on the floor and crying from the pain and not understanding what was wrong and having a doctor who said I couldn’t have AS because I was a girl. Arrgh! Looking forward to the next post!!!

  2. Oh Joyce, I’m so glad you are doing this. I am anxiously awaiting the next post!

    I’m glad you enjoyed it, and will say you were my inspiration as well! :0)

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