That Damned Toilet – A Pain Flare Story

That Damned Toilet – A Pain Flare Story

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.

Kerry Smith

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.” (http://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”(http://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.

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Authored by: Kerry Smith

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19 Comments on "That Damned Toilet – A Pain Flare Story"

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Multiple Chemical Sensitivity (MCS) often goes hand in hand with Electrical Hypersensitivity (EHS). Better explained as hypersensitivity to low intensity radiation frequency electromagnetic radiation (RF EMR) that is emitted from equipment such as mobile phones, Wi-Fi, Smart Meters, etc. AKA “idiopathic/environmental intolerance (IEI)” . You will find that many more than the percentages quoted here suffer these, but, like yourself, many who suffer in the presence of these toxic emissions/radiations, just haven’t linked their symptoms to these exacerbators yet. MCS and EHS are suffered by a very large number of CFS and Fibro and other immunocompromised sufferers. And the numbers of those who are not sufferers of Fibro or CFS; yet who suffer MCS and/or EHS are rapidly on the rise, due to the widespread deployment of these dangerous wireless/microwave, etc. radiations all around us now. Overexposure to these radiations and bio-toxin/mycotoxin exposure caused through being subjected to a MOULDY Wet damaged Building (WDB) are two of the main causes/triggers. The nastiest part of this is that RF EMR also spurs on the proliferation of mould and fungus spores and makes more virulent the dangerous substances and toxins these produce, thus, is the reason mouldy houses and the illnesses this causes are also heavily on the rise. Many are also not aware that their chronic health conditions such as CFS and Fibro, etc are often caused by living/working in WDB’s, usually over prolonged periods of time and/or by Vector-borne disease (VBD) resulting in Chronic fungus and/or bacterial Infections. so they never see the right doctors or treat the core of their illness, thus, suffer horrid pain and conditions for decades.

Mr. Smith, I would like to introduce you to the cause of fibromyalgia. Watch the video on https://www.doctorsofcourage.org/videos/ Then if it fits, understand that the disease can be cured.

Mr. Smith: I would like to introduce you to the cause of fibromyalgia, and the cure. Watch the video on https://doctorsofcourage.org/videos/ and see if the cause applies to you. Then if it does, understand that you can be cured.

I understand! Next time use baking soda and vinegar. Although vinegar definitely has an odor, hopefully it won’t affect you so severely. My husband used wintetgreen tobacco (dip) and when he opens the can I have to cover my nose if we’re in the car or leave the room we are in at the time. He thinks I’m exagerating but I’m certainly not. Hoping you feel better! Btw, I’ve been suffering with fibro for many years after having brain surgery.

Acute porphyrias are also very reactive to cleaning chemicals–in fact MOST chemicals used in our environment–air fresheners, scented candles, room sprays, pesticides, cleaning agents, solvent-based products–not to mention MEDICATIONS. An easy out for cleaning toilets? Drop in 2-3 denture tablets a couple times a week. Because my daughter has an acute porphyria, instead of manufactured cleaning products, I use VO5 shampoo to wash down shower, tub, sinks (and yes, the toilet). When things build up, I use baking soda and vinegar when a scrub brush or old, used toothbrush. I hope this helps some!

I have the same problem, so I started using seventh generation. I get mine on Amazon. Works like a charm.

Can I suggest that you try something with out crazy chemical’s? Young Living Theives cleaner is made of essential oils and cleans wonderfully. I started using it about 3-4 years ago and love it.

A quick way to learn about MCS is the Process of Elimination. Work with different cleaners one at a time. Observe how each one affects you.

Pine trees make a toxin that protects their bark from insects. That’s what PineSol is. The same toxins are in a lot of so-called “natural” or “Green” cleaning products, because pine trees are natural and so are their natural toxins. If you naturally react to them you have to avoid them. If you can use them, great.

Clorox gives off odorless chlorine vapors. What you smell when you open a Clorox jug, is molecules of your own nose protein that the chlorine vapor is decomposing.

Mixing anything that releases chlorine, with anything that contains ammonia, is quite dangerous. Ammonia reacts with chlorine to make Chloramine, a toxin tried as a war gas for poisoning enemy soldiers, that turned out to be too unstable and exploded occasionally. The German Army worked on it some more, and by World War II came up with hydrazine made from chloramine, which got used to power the propellant pumps of V-2 missiles.

Not to be ignored: The toilet itself. The bacteria and fungi that live in a dirty toilet can spray around when we scrub them. Scrub brushes make a fine mist of particles when we use them to scrape gunk off of any surface. The particles contain the liquid cleaning chemicals you are using, along with some of the gunk. Worst-case scenario: You inhale a mixture of liquid Clorox and gunk particles from brushing the toilet. The proteins in your nose burn away by reacting with the traces of Clorox. Live bacteria that didn’t die yet from soaking in the Clorox, are now inside your injured nose, instead of on the toilet. The bacteria land on traumatized nasal membranes and start growing. A couple of hours later the bacteria are making you feel noticeably bad.

Keeping a window open when cleaning is usually a good way to dilute the fumes and reduce their impact on you.

So is wearing a dust mask, if you’re going to fool around with scrub brushes.

I learned early on that there are things that I just cant do very well. Cleaning the house is something that I hire people to do for me. Every ten days I have maids come into my home and it is worth the expense. That way, I save those spoons for when I really need them.

Pain “flares, at least for me can come any time, unexpectedly, and now being undermedicated, a pain flare is more devestating. NO where to go for relief, no method to regain control over the flair, life is NOT a beach for us. I am so tired of contacting my state reps and all federal agencies that have an input into pain management and only receiving “information” about the stated “opioid crisis”. WHAT about our pain management patients that suffer far worse now with ineffective medication dosages? It is reported that the average number of substances found in the body at the time of overdose is six! Six different substances all possibly capable of causing death, individually if abused. WHAT are the number of overdoses with patients prescribed medication with ONLY the medication professionally prescribed for the patients recorded pain management problems present at the time of “overdose”? Again, it is NOT the responsible pain management patients, using their tailored pain management medications, using them responsibly to manage everday life whether still attempting to pay their bills or just complete daily tasks that have to be done in order to simply survive. I am so tired of receiving a letter back from the White House, my state reps, or federal agencies that regulate opioid medication only to read that the “opioid epidemic” takes precedence over the millions of patients through no fault of our own that have contracted pain generating disease or injury that will generate pain for the rest of our lives. The vast, vast majority of pain management patients use our opioid medication responsibly in fear of our medication that enables life even at the molecular level to be terminated. WHY can these perfect people, our elect and appointed that are in place of authority not understand that an effective, tailored dosage of opioid medication is beneficial to FAR more millions of patients than it is harming? What will it take to convince our “representatives that we, the prescribed patients have and are using our medication responsibly, have rights too?

Wonderful article.
Vinegar may be the “solution” (no pun intended).
Be well and have a pain-free day!

Kerry, in your kindness, you learned something important about your health. Nasty way to learn to stay away from strong cleaning products. You can experiment with cleaning the toilet a little bit and only using something like vinegar. Google options for cleaning products. It is definitely “a thing.”
We all do this game all the time, playing with how many spoons we have. For me, I was expecting my daughter home on Christmas afternoon. She hadn’t seen my new condo yet. It had snowed and there were maybe 2 inches of powder. Being in a condo, they clear the snow, but she was expected, they hadn’t cleared it yet, and I LOVE to shovel. Even though I know I can’t do it anymore. It was even warm. I was in a sweatshirt. So yes, I shoveled the sidewalk, and that was so fun, I did the driveway. The sun did the rest. Then I paid for days and days of back pain. Damn.

Hi Kerry! So good to see you have once again surfaced 🙂 It’s been awhile. I am sorry about your awful flare and as you now I understand it very well. I go into flares every time I do housework.
I smiled as I read about how you wondered if the ‘cleaning chemicals’ could have brought it on.
I related to that ‘thought’ too! Been there, done that also, and each time I end up researching, ONCE AGAIN, on my computer.
It’s like we can never believe that the simplest of things can actually bring on more pain. Especially since in our ‘lives before pain’ we did not have reactions or flares. We try ever so hard to get to know our broken bodies even more so every single time something goes awry! We want so much to just be normal for day! So back to the ole’ saying we go “Live and Learn”.
Hang in there, one day at a time. I will send you an email… Maureen

Hi Kerry, have you looked into the “green” cleaning items without the chemicals? Might be worth the investment. I am the “woman” of the house and since being disabled in 2006 I felt since my husband was out working all day, the least I can do is some cleaning. I do have Fibromyalgia but don’t remember if I would get flare ups when cleaning without just thinking it was “from cleaning the house” exertion and pain that would last for days, so I starting doing one room a day which would take 90 minutes to vacuum and about the same to dust. It’s a big room, but when you move like a turtle, 3 hours is a lifetime. Three years ago, I had to be convinced to hire someone to come in and clean. I wanted just every other week, but DH said every week, which is $500/month. Can we afford it, no, but can I even move a vacuum or dust an entire room anymore, absolutely not. Having someone come in to clean my home that is my responsibility and was the last thing that made me feel worthy to have this beautiful home and not make me feel like I “laid around all day doing nothing.” I was devastated as it really was the last thing I had that made me feel I “was pulling my weight.” Now, just a shower and washing my hair can exhaust me. I too am a “Spoony” but just getting out of bed takes a spoon, shower and washing at least one to two spoons and most days, either depression of being in pain or just feeling like I haven’t slept in a month takes the rest, so I understand and feel your pain. For your wife, see if you can order natural cleaning products (but research their ingredients first) and see if you can give it go one more time for her. One thing I did purchase at Walmart or Target is that they have “cleaning wands” for toilets and tubs so you don’t have to get down on your knees or possibly even no need to bend over. I hope this helps.

Why are we all so reluctant to hire cleaning help? I spent several years agonizing over the decision, convinced that it was too expensive, it would be creepy to have someone cleaning my house, or that I would feel ashamed to admit I needed help. I finally hired someone to clean twice a month and a cleaner now seems as vital to my well-being as heating pads, pain meds, and supportive friends. If money is an issue, you can customize which tasks you want done and how often. I can dust and wipe counters, but I can’t do floors or bathrooms, so my cleaner focuses on vacuuming and cleaning bathrooms. Seriously, anything that reduces suffering is a good thing and we all need to get past our reluctance to hire cleaning assistance!

We got a high toilet so my husband has an easier time

Although I have never had a pain flare as a result of a chemical and I can certainly relate to the house work. I live alone yet every morning I know there are things in the home that need cleaning or maintenance. I also know that I have about 3 hours time that I can fulfill these needs. I don’t quite use the “spoon” analogy. I use time. I know on most days I have 3 hours but there are days where I have 0 hours. On the other hand on other days that seldom come around, I have 5 or 6 hours.
Thankfully I live alone and do not have to concern myself with others and the faces they may make. I do understand where you are coming from because I am hardest on myself and get frustrated when I cannot complete the errands or chores that I want to do in a given day.

I feel for you. There are many things I will never do anymore: vaccuum, clean toilets, carry groceries—my list is endless.
But there is help!
You mention that you’d “give anything to hire someone to come in on a regular basis and clean our house. ”
I do just that.
Since I cannot afford a cleaning service, I’ve found a steady and (semi-) reliable source of labor in neighborhood teenagers. They want the work, I set the price. Their parents are thrilled, the teens love any cash. They get good references for their next jobs. Win-win-win.
This has really helped my life!

For me, it is usually a gallon of milk. An extended arm picks up something of a few pounds while the arm is extended and the back muscle lower left side seems to twist and snap and the cycle begins. Usually about 3 days. I get it that this isnt quite your point but the feeling, regardless of source, is probably well known here on this site.