Wednesday, November 25, 2009

thank god, i know some things ...

Our Grand Ave encampment is reminding me of the progress I'm making living with MCS. Pete and I lived at this address in Everett two years ago when both our health and our spirits were stretched to a fine thread. With little to believe in and hope at its lowest we had the love and support of two friends who helped us through. Between times mawaina the harsh reality of what it can be like living with a chronic illness whose only cure is to live without exposure to toxic chemicals, and toxic attitudes (external and internal). It's been a slog, and the stuff of nightmares or fairy tales. We have traveled many more thousands of miles since that two year stay on Grand Ave, and have made progress since those debilitated times. Living with this chronic illness demands being aware nearly all the time; that can be an exhausting job. Thing is though, in a very meaningful way exhausting or not it's my job, and my life and by the gods I'm finding the joy in really knowing how to do this job ... a bit, a moment, an experience, a day at a time. Rather than focus only on the woe of it all, there are real successes to this nearly invisibly journey of victories.

Pete is out shopping for a few things for Thanksgiving. Our friends are going to another friend's for Thanksgiving. I bought a free range turkey the other day thinking maybe we'd gather for the celebration even while I knew I couldn't sit, and eat with my friends or be in the house without a mask. Well, we, Pete and I, will be the gathered and there are gifts to celebrate anyway. The basement kitchenette we've set up is plenty enough to season and stuff our turkey. There's an oven in the house that Pete can turn on (it's gas) and then vacate while our turkey dinner cooks. He tolerates being inside a lot better than I, so who knows, there's always a ball game on for Thanksgiving and he has been known to watch them games. I'll putter in the vardo during the cooking, and maybe go for a walk with my mask and scarf. The progress is ... we know what we can do and know what we can't.

Here are a few of those small and real improvements, and sequential learnings that have come over the past two years. These are in a random sort of stream that is like one of my favorite ways of praying.

When I am having a particularly low-down day or night and have little energy to recall a prayer I can say/chant, I am usually able to say the alphabet. A, B, C, D, ..... and end by thinking "God, you put them together you know what I'm saying better than I can at the moment." Then, I start over until I fall asleep.
  • i know being inside a house is like being in a store (even the best of non-stinky stores is a 30-45 minute experience) ... short doses of house time works.
  • i know it's best for me to braid my hair and tuck it under my hat/cap when I'm out of the vardo (house smells-store smells-neighborhood smells collect in my hair and then ... {the sequential learning}i have a choice to wear my mask to sleep until my hair off-gasses or wash it with baking soda.)
  • i know my twitchy nose is telling me something (i still need to learn the distinction between a full-on red light twitch and a milder alert)
  • heart palpitations are an indicator that something's put me over the top. The year and a half of working with my NAET practitioner has taught me that my thyroid and heart are intimately connected. When my heart starts to flutter or race it may be my thyroid (and my heart, too) that needs attending.
  • i can be in the vardo with a book Pete's reading now (i just need to be on the other side of the futon or have Pete read from the floor)
  • NAET treatments i do for myself help boost my body-mind's ability to reach equilibrium (my muscle-testing confidence and objectivity is much improved over the past two years)
  • living with other people who are not fragrance or chemical free doesn't mean I can't love them. (this is a daily experience in setting workable boundaries, tolerance, forgiveness and letting go)
  • i know what worked yesterday might not work today (like the Tropical Traditions Unscented bar soap that has been my toothpaste, shampoo, bath soap for two years is now making me itch) ... there's a hot shower with a shower head filter and that's big~
  • i know i can wash my clothes and me/my hair with lemon juice or baking soda
  • i know writing is one of my best forms of healing
  • i find comfort through connection with others learning to live a new quality of life with chronic illness (see our sidebar for links to those connections)
  • i know when i am worn from the everyday dance of avoidance i must find ways to comfort myself. I found this article on Planet Thrive written by Susun Weed, Master Herbalist, about dealing with the anxiety that comes from living with chronic conditions, and especially like the description of "unfreezing" ... I do this one often.
Unfreeze yourself: Curl up in a fetal position (on your side with knees drawn up), breathe deeply, and hum. You may want to rock back and forth. Concentrate on what feelings want to emerge. Do not be surprised if grief is what you are really feeling. (Click on the link above to read the entire article)

  • i know the value of love and ancient ways and give thanks for ti leaves my son has brought from Manoa to clear the way ... and pray for the righteousness of the gathering in spite of harvest during an 'ole moon.
Small changes, real changes, creating a new set of normals. Sending blessings and gratitudes. Happy Thanksgiving Day.
Mokihana and Pete

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