There’s always something. Fifteen years ago during my second and worst health crisis, there was not always something; instead it was many things all the time that were terrifying. See the difference? Now that my chemical and food sensitivities are distinct symptomatic reactions, I shouldn’t be described as having chronic symptoms. And yet…there is always something.
It might be a rash on my scalp, which is a polite term for oozing sores covered by thin hair. It could be swollen finger joints or heart palpitations. There are any number of mild complaints that come and stay for a few months. Then they resolve without my ever having discovered their cause or making any intentional change to fix the problem. I think of them as floater symptoms and I get the sense that everyone with a chronic illness, especially environmentally linked ones, know what I’m talking about.
Having lived with them for so long, I tend to not get alarmed by these transient symptoms anymore. They may curb my life but do not completely derail it. And having been derailed for significant parts of my life, I have some perspective on the matter. There is no need to panic over a rash, even when it is on my eye lids. Unfortunately a rash on my eyelids is more noticeable than a scalp rash. Suddenly the vast invisible illness that permeates my life, lurking under the surface, can now be seen by others. Like the tip of an iceberg. Some friends and family don’t understand my cavalier attitude towards these issues. “Your eyelids look like they have leprosy! Get some medicine on that!” I can’t turn to prescription medicine for that kind of little thing. If I did, I would be on the vicious cycle of treating drug side effects with more drugs forever. I’ve got to save my prescription drug usage for the really bad stuff.
Occasionally however, a floater symptom will really mess with me, the iceberg tip rising way above the surface and becoming impossible to get around. My son just turned 13 and for his birthday he wanted to take two friends to do an elevated rope course facility nearby. I was thrilled! Adventures are a better gift than stuff and this adventure I could actually participate in. The facility’s rules required an adult chaperone and for once I was an option. There have been so many years of museums and award ceremonies and shoe shopping that are handled by my husband and mother-in-law while I stay home. But I could do this! Unfortunately I woke up that morning with crushing vertigo. This was truly a surprise; I hadn’t had vertigo for ten, maybe fifteen years. But there it was. The room spun crazily and I walked with my hands on walls and furniture to steady myself but still ran into other walls and furniture. It was actually comical. For hours I insisted that I was still doing it. I figured I would try some tricks; some supplements, food, extra water etc, and be feeling better. Who cares if I was truly TILTed up there on the ropes, they’d have me roped in for safety. I couldn’t actually hurt myself. But I didn’t feel better. Then my husband expressed concern about my ability to drive and he was right. Then my son shifted from birthday boy goofiness to responsible son will look after his sick mother. That sealed the deal. Birthday boys need to be carefree. So my husband took the boys on that birthday adventure while my daughter and I made gluten, dairy, soy, nut free cupcakes (after I cried in the bathroom for a while). BTW, crying does not fix vertigo either.
I changed some supplements around that night to ensure a really good night sleep and woke up the next morning without any vertigo at all. A 24 hour floater symptom of exactly the wrong kind at exactly the wrong time. It doesn’t matter in the big picture. My son had a great time with his dad and friends. My daughter and I had a great time baking. I think I will be the only one who remembers any disappointment. Of the many issues facing MCS patients, a little parenting disappointment hardly rates. Yet in my continued attempt to describe the extent that chemical sensitivity limits my life, it serves to illustrate how the TILT is always with us, even if we are the only ones to feel it. Like vertigo, it allows us to look functional from the outside, while the inside is left with all the uncontrollable spinning.