Sunday, February 23, 2014

a whole new world

I'm trying to process my world now.

Here we are at a four day unschooling convention - a nice small one with only about 30 or so families in attendance.

Because my health has been challenged with FIbromyalgia, Chronic Fatigue Syndrome, chemical sensitivity, I have had to learn to be extremely careful in the world, and my world of late has been limited to mostly my own home and the occasional trip to the grocery store or to see a movie, and really not much else.

I thought that this would be a better convention for us, because it's fewer families, and I would be able to manage the smaller amount of people (compared to the other one we've attended that has over 700 families and is completely overwhelming). The hotel is smaller, there aren't many people, and my son's BFF, who lives outside of Seattle, is here with his brother and mother.

I overestimated what I can handle.

Once upon a time, the word 'convention' meant me and a big group of friends in a hotel with thousands of people, walking the hotel ALL weekend long. The room was for 1) storing our stuff, 2) refilling our drinks, 3)changing our clothes and 4)sleeping (well, napping really). We were rarely in it, and if we were, there would be a dozen other people with us. I almost never stopped. Three days straight. We barely packed anything, sometimes even forgetting to bring a change of clothes. We brought alcohol in spades. If we ate, it was out at whatever fast food place was nearby. (I'm talking about science fiction conventions, these were our home away from home, and we looked forward to every single one that happened, several times a year).

Fast forward to now: we packed half our kitchen because eating out anywhere can be fraught with foods I'm unable to eat without reactions. Brought all of our own food, and the crockpot, an induction burner, a pan, dishes, our own beverages (NO alcohol), all my supplements. We have all the clothing we could need, toys to play with, our computers, my CPAP machine, my fan for white noise, my sleep mask, the toaster oven, and our own bottled water. Oh, and all our own bedding, including sheets for the bed, because we are sensitive to the bleach and petrochemicals in detergents. Packing the car, which my husband had to do alone because of my not having any spoons to help him, was like a live action game of tetris, because we have this small sedan and still had to fit three people in it after filling it with all of our stuff.

Once we got here, all we really wanted to do was recover. The first room they gave us had apparently just been cleaned with some kind of toxic chemicals, because within ten minutes of being inside it, I was lightheaded and felt sick. A friend across the hall let us smell her room, and it smelled much better, so my husband went to the front desk and asked if we could switch rooms. Luckily they were really understanding about it, and switched us to one that "hadn't been sanitized" that day, and she said they have other guests like that, who call ahead and ask for no chemicals. she even offered to go get us linens that were different, but we said no worries, we brought our own. So we opened the window, which looks out to the mini-golf course, and we were good.

We saw kiddo's BFF for awhile, then bed, and yesterday was the first full day. We went back and forth between their room and ours. Their room is upstairs and in another building - above the pool and down the hallway from it. You can smell the chlorine in their room. After the first visit of only a half hour or so, I couldn't be in their room anymore for the chlorine smell. Again: dizzy, nauseated, room spinning.

We went to see The LEGO Movie at 2, and when we got back I was completely spent for the rest of the night. Just - ZERO spoons left. I spent the time in the room while the boys visited friends. I was just WIPED.

So today I'm here in bed again, in the middle of the day, watching hotel cable and typing this. Noticing that although I can hear the people playing mini-golf outside, and the kids playing in the hall, and there is a whole convention of people out there, and I WANT to go meet with them and interact and play....I just need this downtime right now. I need the recuperation time between events, because there is just NOT the energy in my body to handle being ON all day, even for one whole day, let alone two in a row.

So instead of reaching out and making new friends, I am choosing self-care, and just trying to make peace with my needing this time in the room to rest until we maybe go to the beach today (we're on the coast right at the ocean) or whatever we end up doing that does require my moving and being up and around. And even here, as far away as our room is from the pool (it's actually in the other building, so down the hall, out one door, across a 5 foot walkway, in another door, and there's the pool), I can smell the chlorine - it was burning my eyes last night until I realized Husband had closed the window while we were out, and I opened it. In addition, I was having pretty intense brain fog - within a half hour of opening the window, I could think again. It was noticeably different. amazing, right?

So I'm the canary in the coalmine. And until I figure out the way to healing (believe me, as I sit here I am working on THAT), this is my life now. There are some things that sadden me about it, like the part where I don't get to connect with the people I want to connect with, or do things like stay up talking to people until the wee hours. It's lonely. An there are other things I am glad about, like that I WAS able to make it here, so my son could be with his friend, and my husband is here to accompany him and is a great support.

And hopefully later today, we WILL be able to go to the beach.

1 comment:

  1. greatly respect the determination, perspective of gratitude despite the limitations of chronic illnesses, and the sharing you guys give...


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