Tiara’s Tuesday Talk – by Sara Sheibley
This week I’m going to discuss exercise in a different manner. For most patients with Ankylosing Spondylitis exercising increaseS our mobility, flexibility and decreases pain and depressions. Many studies show this to be true however, the question is, what if we over do it? What if you set a goal but fail to meet it?
Usually the side effect of this is feelings of inadequacy and depression which then increases our pain. Also, you can put yourself into a cycle of exercise, required rest, depression and then a lack of interest to restart again. How do we avoid this? What can we do to stop this cycle from causing us to stop something that we know helps us?
This past weekend I watched the movie The Words. It was a good movie, a story within a story. However, it left a bad taste in my mouth. All week I have been trying to figure out why this bothered me so bad and how does it relate to my health?
(I love Bradley Cooper btw)
So I thought about it and thought about it and thought on it some more. Why did I dislike the ending? The movie was excellent. As I said it was a story within a story with another story to go with those two and I was caught up with every detail. Then came the ending, which was an “open” ending. It left me wanting something… Closure.
Entertainment is to forget life for a little while and become wrapped up in a distraction. Movies became popular in the depression era. They charged very little for people to go sit in the dark and watch stories of other people’s goings on. It helped them forget what they were going through. When I watch a movie, tv show or read a book I want it to be tied up in a little package, bow and all. Shows that constantly leave me hanging, episode after episode generally don’t stay high up in list of “things I want to do”. Why? Because LIFE is open ended!
Life doesn’t come wrapped up with a bow or fit into a neat little box at the end of the day.
It goes on and changes, flowing like a river and etching who we are into the landscape of our lives. For people with chronic illnesses, especially when you are undiagnosed, you can spend what feels like an eternity chasing down elusive diagnoses. Every appointment, every test, every scan they do gives you hope that they will finally be able to tell you exactly what’s wrong.
The hardest part with Ankylosing Spondylitis is that no 2 patients have the same symptoms. We all have ones that are similar, but my path is different than your path. I know how this feels because as many of us had to, I also had to chase down the doctors and reports and tests until someone finally said, “This is what you have.” Did it make me feel better? In a way it did. I was happy to finally have a diagnosis and to get treatments for it, but it didn’t change how I felt, physically or emotionally?
Emotionally I went through all the turmoil. I was happy to have a label, sad that it is incurable while feeling relieved to have someone that understands what I was going through. I’m not just “lazy” or it wasn’t “all in your head”. And this isn’t the only illness I have gone through with this and many of us have new things that have popped up. Neuropathy, fibromyalgia, lupus, osteoarthritis, bursitis, iritis… The list goes on… There isn’t ever any real closure.
We seek closure through other means. Setting goals, advocacy, participating, blogging, keeping our mind and our bodies busy as we work through things in that go on not just in the mind but also in our bodies. Suddenly we are wrapped up in the same cycle. Is it worth it? Why do I bother? Our minds go through the same type of cycle our body does. Depression causing pain, or mental anguish and we question ourselves. Why? Here we are back at square one. Why?
Sometimes there is no answer to why. Sometimes the answer to why is inside of us. Why did we start (exercise, blogging, advocacy, insert whatever here)? For me, I had set a personal goal of 10,000 steps per day for this walk. I have only met that goal maybe 4 times since the start. Is it getting me down? No. Why? Because I am stepping for a cause and it’s a great cause at that!
When you have someone with chronic illness it is easy to get on this cycle of ups and downs, but hard to get off. We are programmed to be let down. By doctors, by friends, by family… But there are people there also to lift you up. Why do we participate in advocacy? To raise awareness. If what we do has helped ONE person then I say it’s a SUCCESS, but remember…
Is your heart in it? Yes. Are you happy with what you are doing? Yes. Did you make your goal? Maybe not. Are you helping people? Yes. Are they learning more about AS? YES! Are we making a difference?
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.
Tiara’s Tuesday Talk – by Sara Sheibley