Reacting is the worst. I hated reacting long before my body was compromised with MCS because I am a planner by nature. I can act spontaneously, improvise even, but those are situations where I am free to choose. Reacting implies something has happened to me and my actions are dependent on and limited by that. I analyze and track my reactions to chemicals in a health journal I’ve kept for years. A while ago I called on my inner planner and formalized my reaction process in some simplified words and charts. By summarizing my triggers and symptoms I’ve achieved four things. I know what to expect and some anxiety is diminished. I stay on track in treating my symptoms at a time when my brain is very off track. Any support person can refer to the document rather than relying on me right when I will be unreliable. Lastly, in combination with more detailed medical records my summarized version can be useful for health care providers.
As a caveat let me add that my MCS reactions have changed dramatically over the course of this illness and so these lists have changed too. For years, I was a severe reactor, then a moderate reactor, and now finally a mild one. I’m going to tackle some major travel this year and I suspect that will knock me back to moderate but for now, those reactions are feeling mild. I want to be clear for any non TILTed reader that the reaction process listed here is truly MILD. The severe reactor phase was severe and there are an unacceptable number of people who live with that all the time. Additionally, for many TILTed sufferers there is a period when the reactions are so constant and complicated with delayed timing, that it is impossible to isolate any cause and effect. Some critical healing must be done before any real analysis can be done.
I can’t imagine anyone really wants to know my personal details contained in the following charts but for any patients new to this illness, I want to demonstrate the usefulness of formalizing your body’s reactions in documents for yourself, your support system, and your healthcare providers.
My Reacting Triggers in everyday products (not by material or chemical)
Most of these triggers produce the same chain of reactions in me. It starts with cognitive symptoms, moves onto the nervous and cardiovascular systems, ends with gastrointestinal upset and multi-location pain, with some unbalanced brain chemistry lingering for a extra few days. Pesticides are a bit more insidious, causing a delayed flu-like set of symptoms for a 36-72 hours.
My Reacting Symptoms
These symptoms refer to chemical reactions. I have a wide range of food allergies and intolerances which also require avoidance. However, it is much easier to avoid putting certain foods in your mouth than it is to avoid breathing invisible VOCs into your lungs. So food intolerances don’t really require the level of reaction tracking that chemical sensitivities do. It requires extensive planning when eating away from my home; antihistamines, epipens, packed meals, little coolers, asking chefs for their ingredients, etc. It requires keeping a food journal and tracking symptoms in my GI, head, and skin for potential new intolerances. But it is a different type of planning, reacting, and need for support system so I am not going to include it here.
The most important document I can share with family or any support system is my reaction treatment check list because my first reaction symptom is cognitive dysfunction; foggy thinking, difficulty making decisions, and memory loss. A written checklist that can take the place of my own mental process is critical for a caregiver.
My Reacting Treatment Checklist
Phase 1. Fast response time with these steps can, depending on the severity of the exposure, ensure that the symptoms stay mild to moderate.
-Remove me or remove the trigger source
-Any critical life saving intervention; for me that might be anti-histamine or oxygen
-Buffered salts for some, I do an electrolyte mix and Vit C
-Fresh air and slow movement
-Twenty minutes in my sauna
-Then leave me alone because I can’t interact
Phase 2. Regardless of how successful I have been with moderating the reaction in Phase 1, there is no stopping the reaction. So the next steps are focused on moderating the symptoms that appear 2 to 48 hrs later.
-Calcium and Magnesium before bed to avoid muscle cramping
-Easy stretching to avoid same
-Probiotic to avoid gut cramping, fish oil to avoid joint pain
-Arrange for someone else to take over any upcoming activity I cannot do
My priority is always avoidance but when that doesn’t work out, I have this plan in place for reactions. I know what is happening to me and how to moderate it. I know to keep the reaction treatment materials on hand and well stocked. Rather than reacting to my reactions, my family knows to help me manage my reactions which is a much more useful role for everyone concerned. The plan in no way solves the debilitating nature of chemical sensitivities. In fact, it doesn’t even work every time; my body comes up with new reactions as often as our society puts new chemicals into our daily lives. The plan may be just an illusion of control, but it is the one that keeps me sane enough to move forward a little bit every day.