Rants and Silver Linings

Still TILTing

A large number of my virtual friends from the EI community (bloggers, HEAL support groupers, Planet Thrivers) are in the midst of serious health crises. They are in pain, confused and scared and really unable to function well enough to navigate their way through it. I feel awful for them; I empathize with them in the truest sense. I have been there. I was there for a long time.

There were many years where all I did was try to find food that I could eat without a reaction. On a good day I might attempt to walk a few blocks but would then need to come home and suck on my oxygen tank. The cognitive dysfunction meant that I couldn’t speak without sounding drugged. I couldn’t find the words I needed and even then they would come out slurred. Not that there was anything worth communicating; inside my head was a heavy, gray mass of pain and fog. Thinking was impossible, talking was ludicrous. Obviously I couldn’t work. My friends and family hovered, scared and frustrated for me. But they never wavered in their belief that I would figure it out, that I would find a way out of that awful situation. Some of them actively helped me, some cheered me on, some just believed. Those voices were critical to counterbalance all the medical establishment voices that were saying the opposite (this was the mid to late 90s and MCS was even more of a rare term then). The loudest voice of all was the one inside my own head that was very sure I was either dying, or going crazy, or both. Both were probably a little true.

Delivery of my first Heavenly Heat sauna 15 years ago.

Delivery of my first Heavenly Heat sauna 15 years ago.

My very sparse home from 15 years ago, note the deflated sofas as their outgassing foam cushions had been removed.

My sparse home from 15 years ago, note the deflated sofas as their outgassing foam cushions had been removed.

I did not find a way to silence the negative voices, mine or others.  I did develop a spiritual life which kept the panic at bay.  Friends and family reminded me of my true self, a self image that kept me anchored.  But there were no epiphany moments. Instead, I slowly accumulated the little things that made me feel a little better, like very small links in a big chain. After years of this, I had enough of lifeline that I could climb a bit out of the fog and pain. Then I could construct little steps forward and eventually paths for healing. I had to rebuild and redirect a million times. Eighteen years later I still have to.

Now you can see from my blog that I do things with and for my kids outside the home. I have a social life. I occasionally travel. I have hopes for work that would allow me to feel useful, even if that work cannot be outside my home. Most importantly I do not experience pain or cognitive dysfunction every day. I have recovered enough that my reactions are clearly linked to an exposure, not some endless stretch of pain and fog such that I can’t tell what caused it or what might possibly end it. That is a huge milestone for anybody with chemical sensitivities. It feels so much better knowing that I have a baseline of pain free health that allows me to function. Mainly it means that I am not crazy, nor do I feel like I am going crazy, which is how I felt for years.

Going places with my kids.

Going places with my kids.

Mind you, that is just a baseline. Every thing I do after I wake up in the morning is a calculated negotiation; what I eat, where I go, or what I do. Negotiations failed last weekend. I had to catch up on some insurance paperwork, so I opened some mail and filled out some forms and copied some receipts. The first two are a bit of a challenge but copying is more so, even with our exhaust fan in our printer closet. Strike 1. It is high season traffic here in FL (hello Spring Breakers) and so three times in two days I got stuck in traffic filled with car exhaust. Even with my trusty car filter that is Strike 2. Lastly, a co-worker friend of my husband spent the night with us. The next morning he took a shower in the guest bathroom and came out smelling like hair product which immediately made my whole house an awful exposure zone for me. This was my fault – for years there was a sign in the guest bathroom reminding users of my sensitivities and pointing out the basket of safe products for them to use (shampoo, bar soap, aftershave, hair gel, toothpaste, etc). The basket of products is still there but the sign fell and broke a while ago. All of our recent guests have been my family who know the rules very well so I keep forgetting to replace it. Without verbal or written instructions otherwise, of course he used his own products. It was a big Strike 3 and since it was all over my safe air space, it put me over the edge. Full on whacked out for 24-36 hours such that my husband had to cook dinner for us and the children had to put themselves to bed. This still happens. Like all the time.

The sign that would have saved the day.

The sign that would have saved the day.

To all of my friends who are in a very bad place, I can bear witness to the fact that it is possible to get to a better place, a place where you can function within limits.  I know I was very lucky in the friends and family that supported me through the worst.  So now I am very grateful for our online communities that serve as those positive voices for any of us in need. It is heroic work that we do – surviving, healing, advocating and supporting each other. As long as the loudest voices in our heads are the encouraging ones, then none of us will go crazy.

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