From the bitterness of disease man learns the sweetness of health. ~ Catalan ProverbMost of the time I feel like I am running a race, maybe even more like a marathon. There are hills and conditions working against me. There are people cheering me on. I am not running to win; I am just running to cross the line and finish. The problem with this race though is that there is no finish line. This race never ends.
I was driving back from an appointment with my rheumatologist today and these are the thoughts that came to me. After three exhausting hours at the medical center where my doctor is located, I was just beat. I have this autoimmune disease called Sjogren’s Syndrome (well they are pretty sure I do anyways) and just when I think I am winning the race to get better, I get pushed back to the previous mile marker. I guess it could be worse though, I am just grateful that it’s not back to the starting line.
As far as doctors go, this new one is pretty top notch in my book. There are issues with communication amongst her office staff and her, but trust me, there are more stressful things to deal with than that when it comes to doctors. I was doing pretty well physically there for a while, considering that about two years ago, I was having a difficult time even getting myself into the shower. But I get so frustrated when I do better for a while and then I approach the hill again in the race. It is even harder when the hill is one I have not climbed before.
I think I have adapted so well to the race that I sometimes downplay when I am struggling. I don’t want to admit that maybe things aren’t quite as good as I would like. Once the doctor and I got talking today, it was clear that things are hitting a curve in the road. My asthma is flaring up from the extreme heat here in New England. I have had issues with sun sensitivity and rashes. Joint pain, although well controlled during the day, wakes me up sometimes during the night. Sores in my nose from extreme dryness. And the big granddaddy of them all, a significant hearing loss which is not getting better. Maybe autoimmune related, maybe not. I have gotten the impression from this doctor that she does not get excited too easily and she seemed concerned enough to want to get my hearing evaluated right away. Then, I left the office with a prescription for steroids (again), labs, and an x-ray.
I know that so many people have obstacles much bigger than I do in their race. I am very well aware of the progress I have made in my daily functioning and health over the past few years but the bottom line is: I don’t want to be in this race anymore. I don’t think that too often because I have had a numerous amount of blessings come from this illness. For just a day though, I want to remember what it’s like to jump right out of bed and start my day without pain. I want to be able to go to a job. I want to not have to cancel plans when I am sick. I want to go sky diving and zip lining. I want to be well enough to care for my parents when they enter their more senior years. I want to be healthy and well.
I guess the problem though is that with a chronic illness, you cannot look at it like a race because as I mentioned a few paragraphs previously, there is no finish line. It’s not like when I had cancer and I got treatments; then I was cured. There is no cure for Sjogren’s. There is not even an approved treatment for it. The best I can do is to continue to live each day as fully as I can to the best of my ability. I can keep writing. I can keep cherishing my friends and family. I can keep laughing. I can keep trying to make a difference in the world. Most importantly, instead of treating my illness as a race, I must treat it like a journey. One that I must approach gently, yet with determination, courage and laughter.
Photo courtesy of Chuck Myers
Share
Every day is a victory!
Hi,
I am Mrs. X here. I've been reading your blog. I have been with anxiety and depression and other stuff all these years.
I can't say I know what you are going through.I can only say, I think I understand what you are going through and I think you are a very brave woman. You inspire us with your writings and yes you make the world a better place by being in it .If you were nearby I'd hug you and empathize with you and tell you You have so much to give to the world, follow your heart and the wisdom within you 9like you are doing with the accupressure). P.s. check out Jon Kabat Zinn's Cd's and books. Mindfulness is for people like us who have chronic illness and related issues.Yet again, in the midst of the turmoil all that brings,I have felt deep peacefulness by following his exercises.
Mrs. X ~ Thank you for your very kind words! Probably mostly because of some medication changes (i.e. steroids), I happen to be having one of those days where I don't feel like I have much to give to the world or to myself for that matter. Your comment touched me just at a time when I really needed it so I am grateful. I will check into that information you mentioned.