By Kerry Smith.
I think by now most of us have read about the Spoon Theory and if you haven’t, it is worth a “google” and some application to your life. It sure as heck, after 17 years now of wrestling with chronic pain, helps me to explain this God awful pain and the effort it takes to simply survive.
One would think that after all this time, I would know better than to over exert myself, to use energy that I don’t have. But I just can’t help myself when I see all that needs to be done in the house and in the yard. I lay in bed early yesterday morning and thought about all that faces my wife concerning her work and her dealings with me. Lord knows, she has a lot on her shoulders. House work is one of those never ending tasks and I would give anything to hire someone to come in on a regular basis and clean our house. She works full time and when she gets home, on top of everything from her day, she has to deal with me, and life is just not easy. I work very hard to not lay the burden of my condition on her shoulders but the reality is that I am not able to do some things that I used to do either. Yes, most nights, I do prepare supper and have become a pretty darned good cook, but bending over and cleaning something like a toilet is one of those things that is tough. So, I thought, I could contribute on this day to the house work chores by doing something that is a dirty task: cleaning the toilet.
So, with the wisdom of an elf owl and the energy of a turtle, I crawled out of bed and went straight to the cabinet that housed the cleaning supplies, gathered what was needed, and went to the “loo”, as our British friends call it, and began the task of cleaning that sucker. I used all different types of cleaners and scrubbing pads, and I cleaned it until it was shining. And I cleaned so well that as I was just getting finished, it hit me like a bolt of lightning; A FREAKING PAIN FLARE!!!
Granted, I did bend over and I did get on my hands and knees, but I knew that I was going to go to my chronic pain silverware drawer that held my spoons of survival and I was going to withdraw about all of my spoons for the day But this effort causing a danged pain flare? Really? I figured I would be sore and maybe even have to lay on the heating pad for half the day, and use ice, and use the tense unit, and take an extra pain pill, and use anything I could find to ease my pain. But a pain flare?
I am sure, if you have these damned things, that you know how to identify the beginnings of these events. For me, it starts with the pain bolts of lightning on the outer parts of my hands. One shock on the outer parts of hands, then a jolt on my thumbs, then my arms, and it quickly turns into a storm where the lightning is hitting the outside of my legs, my feet, my toes, and finally an attack of fatigue that knocks me off of my feet. All of this over cleaning a damned toilet? Really? Was it the physical exertion? Or was it something else? Could it be the result of inhaling the Clorox and the Pine Sol cleaners?
It wasn’t adding up. Who on here in our pain community has ever had a pain flare from inhaling cleaning solutions? Sounded crazy to me so I googled the possibility of this actually being a thing and low and behold I found it; Multiple Chemical Sensitivity Syndrome (MCSS).
This condition was found in connection with Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS). I have never been tested for FMS but the conditions of FMS do overlap with conditions of Chronic Pain, CFS and which I deal with daily, and many sensitivity syndromes. Both Chronic Pain and Fibromyalgia are “sensitivity syndromes which is where the nervous system starts to overreact when certain stimuli are brought into the environment that you are in. In the case of Multiple Chemical Sensitivity Syndrome, a reaction can happen when certain chemicals are in the air. Then, your body reacts negatively by giving you a headache or making you suffer from nausea.” (https://www.fibromyalgiatreating.com/multiple-chemical-sensitivity-syndrome/). Or in my case, causing a pain flare, firing off nerve endings, and, making me cuss. A freaking pain flare!!! Scientists have discovered that “40% of patients with Chronic Fatigue Syndrome and 16% of patients with Fibromyalgia suffer with Multiple Chemical Sensitivity Syndrome”(https://www.fibromyalgiatreating.com/multiple-chemical-sensitivity-syndrome/).
So yes, my pain flare certainly could be traced to inhaling the cleaning solutions over the small amount of time it took to clean the toilet. MCSS definitely IS a thing! I so want to support my wife in our battle with chronic pain, and it is a battle; an hourly, daily battle. I can do some things in the house, use some spoons , and then rest. I am thinking however that using cleaning solutions will probably not be something I will use spoons over in the future. Damned be our toilet!!!
Kerry Smith is an accomplished artist who lives in Tennessee. He has suffered from chronic pain for nearly two decades and is a contributor to the National Pain Report.