Monday, April 6, 2015

Chronic Life

A few years ago this space went quiet. My mother-in-law received a terminal diagnosis- from nothing to diagnosis in 1 appointment, to talking about "time left" with an oncologist just a few days later. I wrote just a bit about it in this space (here, here, and here). She passed away 6 months after the diagnosis and we spent her last month essentially at the hospital and then moving her to hospice. Our boys were so little then and it was hard to decide what to share and what to keep back for when they were older. It led me to a major block creatively. I couldn't write, I couldn't knit, I couldn't make anything because everything I had was trying to hold everything together for myself and my family

That is basically what has happened here again minus the cancer. Since my autoimmune diagnosis over a year ago, I constantly weigh what to share, what to hold back and the result has been dead space for you and stagnation for me creatively.

 {Purple toes are VERY important when you are almost 3.}

I know that a part of this problem is my own preference to hold this space as a place for happy things. Laundry doesn't exist here, nor dishes or piles of sports gear or the fact that chronic illness is taking up all my brain space.

This space is a virtual representation of my creative life both in thought and deed, where I choose to celebrate the work I do with my family and beautiful fibers, editing out the forgettable things like sleep and quick meals and time spent chauffeuring kids to one activity or another. (And laundry. I totally edit out the laundry.)

With those goals in mind, chronic illness has no place on these pages, but I need to be able to write again and get all the backlogged words out so that I can start to process forward instead of sitting in one place. This post is made out of things that don't generally fit here, some ugly and raw, but a definite part of my story.

I am tired y'all. I want to do all the things. I have known for a long time that I am NOT superwoman, nor do I want to be, but I want to still do the things I love. I want to continue my creative work, my music career, writing, podcasting, and homeschooling, but... the energy.

Oh, the energy.

I spend much of my week borrowing. I borrow spoons on Monday which leaves me deficient for Tuesday, so I borrow more and by Thursday night when my work/school week is done I crash for the next 3 days. My "off" days are being spent on useless things like sleep and recovery instead of all the cool things we used to do all together.

That recovery is even needed is an insult to my old life.

I cannot go out for a run anymore. A lot of favorite foods are off the table because of how much inflammation they cause in my body. My hands swell and ache and I can't knit or spin or braid my daughter's hair. My alarm goes off 20 minutes early in the morning because that's how long it takes to get my stiff body out of bed. My evenings are built around my med schedule, and I have to leave knit night early to get home in time for my box of pills.

I built my life quite purposefully over the last  many years around God and music and books and homeschooling and creative things, and it is hard to see much of it being dismantled.

So now I've hit a reconstruction phase. Navigating a path that gives me creative space with enough rest built into my day but also the ability to work is tricky and full of misdirects. I'm knitting whenever I can knit and I've been overwhelmed with the feeling that every stitch is precious.

So there will be an occasional series here called Chronic Life. I'll label the posts that way and if you aren't interested in posts about life with chronic illness you can skip that particular read. This is a thing I need to do in this space- bring it all out and put it in words.

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