Living with Ankylosing Spondylitis can be difficult but I manage one day at a time!
You wake up in the morning and your stiffer than a bone. You roll out of bed, try to get slippers on and stumble to the bathroom, and this is your good day! Have you ever thought, while lying in bed being stiff that your body must have had a good night sleep? Stretch out, move them footsies, take in some deep breaths and say “Today’s the first day of the rest of my life.”
No, probably not. First thing you felt was pain and discomfort so how could you possibly “believe” that something good is going to come out of waking up?
Every morning, save for a few, I stretch and say out loud “Yes, I made it through the night, now let’s get this party started!”
Before AS decided to take over my body I was like many of you. It hurt to get out of bed, it hurt to lift my head to roll over. It hurt to walk to the bathroom. But that pain made me realize “I am alive!” Without pain we do not feel, now with pain we are always feeling, but what are we feeling?
I bet everyone with a chronic disease woke up one morning and said “I think today I will give myself a disease!” Around six months your body began to torture you to no end. The doctors can’t find a reason so it must be in your head. We didn’t ask for this to happen, we didn’t ask to have a grand party where AS, Crohn’s, fibro, bone fusion, degeneration, pain and aches (fill in the blank with your party crasher) were the guests of honor. And how many of you attended one of these parties when someone you know got an illness? Not many I’m sure.
The first thing we have to do is tell ourselves that “we didn’t ask for this” and then we have to deal because it’s not going away we have to “fight back and fight back hard!”
Yes I have learned that having AS might have been the proverbial slap across the head letting me know I wasn’t doing what I was meant to do.
Believe it or not before my AS came out of remission, because we all know it doesn’t get cured, my whole life revolved around my job. My life revolved around treating others, fixing them, and on most occasions I was successful. But did I really SEE what they were going through. No, not really.
The first thing I have learned is empathy. Doesn’t matter what the pain is, I can now understand what they are going through. From the patient after a stroke who cannot swallow to the patient with a traumatic brain injury, I now feel for them and find myself wanting to help them more even though my body won’t always let me.
The second thing I have learned is patience. Having a chronic disease make us all a little batty especially waiting for test results, doc to give a diagnosis, family members who give us crap about faking all our symptoms and the list goes on…. Now even if I waited in line for meds, traffic light or fast food, when the waitperson says “sorry for the wait” I look at them and say “no thank you for giving me this time for myself.”
The third thing I have learned is gratitude. I’m grateful every morning I wake up. I’m grateful I can get out of bed and walk to the kitchen to make my coffee. I’m grateful I have enough strength to work an 8 hour day. There are many of us with AS who cannot do the things I listed. Many need aids for functional mobility without them they don’t get out of bed let alone walk. I read on the support pages the pain and suffering my fellow Spondys go through day in day out and honestly am grateful that hasn’t happen to me yet! There are many times I read posts and cry, to see the suffering that people with AS go through and even though I don’t want to share in their pain and grief, I cry for them silently and pray that their pain is relieved soon.
Finally, I have learned that there is a reason I have this disease and have gone through all this pain and suffering. Without this disease I would have never gone looking online for support, I would have never started this blog that helps so many and I would never have met so many new friends who get me, who understand me, who have empathy and patience for those of us just like themselves. Each of us have this disease for a reason you just have to figure out what your supposed to do with it.
If this disease had not happen to me I wouldn’t have had the time to finish several certification courses in holistic healing. Wouldn’t have had time to write articles, speak with other professionals or participate in awareness projects. I know I’m supposed to share my gifts and help other so yes I love having AS!