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.



Join me on:   Instagram  ::  Twitter  ::  Ravelry  ::  Pinterest  ::  Facebook

9 comments:

  1. You are on my daily prayer list since you were being diagnosed. Please be patient with your body and celebrate all that you CAN do. If you think of what is no more it will crush you. I was diagnosed at 33 yo with RA and Lupus mix and it took months for the meds to kick in and be adjusted, it took years and years to listen to my body and rest when it needed rest, and to stop certain activities that make a flare arrive. I threw away the thought of remission and no drugs and that saddened me as well. I'm now over 50 yo (yikes!) and celebrate what I can do: I can knit, take daily walks, and do some super simple yoga. I know I need to sleep and rest when it's time and I know that this is a part of my life forever.

    email me if you need to vent, I think you are doing well and it's a journey.

    ReplyDelete
    Replies
    1. Karen, thank you so much for your thoughts and kind words. I'm trying to focus on all the CANs right now. What I do know is that I need to get back to writing again, and this seemed the best first step forward.

      Delete
  2. Oh my dear, I second Karen, focus on what you can do and give yourself time to adjust to this new way of life. I was diagnosed with Graves Disease when I was 23 and it has taken years to learn what I can and can't do. Some days are good and some not so good, but I always try to stay positive. Continuing to pray for you.

    ReplyDelete
    Replies
    1. Tracey, thank you for your prayers and advice. I'm sorry to hear you've had your own illness to deal with. It does make me feel better to know from both you and Karen that it has taken quite a long time to figure out limits since it is taking me a long while as well.

      Delete
  3. Pooja Roy Like To Read your Post Because Your Post Is very interesting thank you so much give us information keep posting good luck ……………….
    mahipalpur escorts
    aerocity escorts
    Independent escorts in gurgaon
    Call girls in dwarka
    karol bagh escorts
    call girls in delhi

    ReplyDelete
  4. โพสต์ของคุณมันน่าสนใจมาก!ฉันชอบ
    คาสิโนออนไลน์
    maxbet
    m8bet

    ReplyDelete
  5. Like To Read your Post Because Your Post Is very interesting thank you so much give us information keep posting good luck ……………….
    andheri escorts
    escorts in Andheri
    call girls in Andheri
    romantic mumbai escorts

    ReplyDelete

Please add your thoughts to the conversation!

Related Posts Plugin for WordPress, Blogger...