There are way too many canaries who are completely off the radar because this illness has driven them there. There are misdiagnosed people who are slipping farther through the cracks of medical care every day, as they are unable to advocate for themselves in their weakened condition. There are some MCS patients who have managed to carve out a semblance of a life but must remain reclusive just to function well enough to take care of themselves and advocate online. They are all unobserved by mainstream society.
I was feeling a bit sorry for myself because I’ve had a rough few weeks.But as always, once I sit to write, I am reminded how fortunate I am to have recovered as far as I have. My awareness problem this month is nothing like the ones I just mentioned. My awareness issue is only in the degree of how little people see me struggle.
Because I don’t work outside the home, I like to spend some of my precious hoarded energy and health points to volunteer in my kids’ schools. But the end of the school year brings a lot of extra commitments for families; award ceremonies, plays, and extra chauffeuring. The combination of normal volunteering and additional school year wrap up has resulted in a total exposure load that has me very TILTed. To top it all off, I am easing into some new diet and supplemental protocols which brings in one of my worst enemies – unpredictability.
There are more low level but chronic symptoms to manage during the day as I work my way through the tedious necessities of running a busy family and my own demanding health needs. By the end of the day, I am in more pain. As a result, something has to give and since I won’t give up the mom gig, writing here on my blog is what is not getting done.
I have been though this TILTed ride for enough years to trust that it is just a down dip. Some of the external demands will end when summer begins. I will figure out which part of this diet and protocol is beneficial for me and what isn’t. I will rest, recover, and soon enough have the energy and clarity to write something useful. But in the meantime my acquaintances are unaware. They might observe that I am opting out of things I would normally do. I am doing a sloppy job of things I am usually meticulous about. I am frantic and frazzled over what seems like everyday challenges. Even if they know I have chemical sensitivities, no one will be aware enough to make the connection. Short of wearing a sign around my neck that says “My chemical sensitivities are acting up since I am doing more. Please excuse my glazed over expression.” That’s too many words to put on a sign.
Here is my very small plan of action. Tonight is the elementary school’s book fair. The school is an ok environment for me but a room filled with new books and decorated for the event will not be. My husband is out of town so I need to figure this out my self, despite the fact that my current toxic load is brimming over, with no health points left to trade in. I could send my daughter with another family or take my kids but not enter the room itself, trusting my older son to handle the financial transaction part of the evening. Instead, tonight I will wear the mask, which will not solve the exposure problem completely though it might moderate it some. I am going in there with the mask on in hopes that a few people will ask me about it. And I can drag them outside where I will take off my mask and explain what TILT is. Maybe, just maybe, one more person will be aware. Baby steps. And considering how badly my head is hurting and my eyes are burning, that is a sufficient goal.