I recently opened the website for this very walk and saw “walking to raise awareness” because that is all that fit in the tiny window of my mini-computer. Of course the end says “of Ankylosing Spondylitis” which we are. We are also raising awareness in ourselves. In these 341 million steps we have walked I’m sure you have learned a bit more about the AS community, the people walking it, running it and literally running it (the people behind the walk) and even a little bit about yourself.
First off let me say a huge “WAY TO GO!” for all these steps!
Way to go.
I think everyone has done a fabulous job of contributing every step, no matter how big or small. We’ve also learned how far we can go and some people can go pretty far! We have people who can run marathons and some of us who need a nap after the grocery store and then there are some of us who can’t even go to the store. Some of us are in remission and some of us aren’t (sadly I fall into the latter) and some of us have had AS so long we don’t remember the difference anymore.
Either way, we have made an impact. We were a little splash in a big pond and now we are so big we almost fill that pond. I know a lot of us behind the scenes (I know personally for myself and I’m pretty sure about Jenna from her post) wish we were way more involved this year but… We’re chronically ill. The problem with being ill like this is we can’t predict when we will feel well enough to do… Well frankly, anything.
One thing that I keep having to learn is that I AM SICK. Not like when people get a cold or when someone says they are achy but sick to the point I can’t keep my eyes open and every fiber of my entire being hurts. My hair hurts. My eye lids hurt. The joints are a given ya know???
Tonight I felt bad. I felt bad that I came home from work and fell asleep on the couch. I felt bad I didn’t help with dinner and I felt bad that I wanted to go lay in bed. Why? Because, I’ve been told, it isn’t normal. Wanting to go to bed at 7 in the evening when there are shows on TV apparently makes me bonkers.
Well bonkers I am and bonkers I am going to need to stay because if there is one thing this walk has taught me over the years is that taking care of myself when I’m feeling like this is way more important than anything else in the world. Don’t feel guilty! Don’t feel guilty if you haven’t walked. Don’t feel guilty if you haven’t gotten out. Heck I know someone who was going to do it but still hasn’t bought her pedometer yet. Life happens. It happens to all of us. It just so happens that when life happens to those of us with AS, it’s usually our AS happening.
So, to all of you from myself and my pooch (in my bed, no less!)… Walk on brave soldiers, WALK ON!
Sara Sheibley is a wife and mother of four. Through out most of her life she has dealt with chronic illness. Born with small fiber axonal polyneuropathy, she had aches and pains early on but wasn’t diagnosed with AS until 2008. Since then she has had to champion her own cause after she developed hemalytic anemia from treatments. Although she suffers with more than just AS, she feels that this is her primary illness and wants to be active in helping the cause. Sara & her Tiara’s Tuesday Talk will discuss a myriad of topics from assistive devices to walking help when you have other illnesses to consider.