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Knitting Equals Pleasure, Despite ME/CFS

Discussion in 'Phoenix Rising Articles' started by Jody, Sep 2, 2014.

  1. Jody

    Jody Senior Member

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    Jody submitted a new blog post:

    Knitting Equals Pleasure, Despite ME/CFS

    Jody Smith loves knitting. Again. She thought her days of knitting and purling were long over but ... she's back ...

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    A dozen years ago I was so decimated by ME/CFS that I couldn't read, watch TV, or flip through a magazine. My days were spent zipping back and forth along the spectrum of waking and sleeping.

    I was wide awake staring at the ceiling, undulating with a seasick vertigo and parasthesia. I was fitfully in and out of sleep. I was sleeping deeply for long and irregular hours, waking sometimes in the middle of the night, in the middle of the afternoon, in the evening ... interesting that rarely did I wake at a "normal" hour of the morning.

    And then there was the so-called waking state that was so typical of that time for me, where I was conscious but devoid of conscious though, unable to have or understand a conversation, unable to do anything. Anything at all.

    After some months of this I became more awake and aware of my surroundings. And I became so bored during the empty hours of the empty days that I sometimes wondered if this was any better than the mindless days of somnolent existence I'd just left.

    I really needed something to do but the big hurdle was coming up with something I could do without crashing after 10 minutes and losing the tiny, precious ground that had taken so long to gain.

    Reading had always been my habit when I needed something to fill my time. Couldn't do that now. Had tried crossword puzzles -- which was a hilarious idea when you think about it. Why would that be easier than reading? It wasn't.

    Television and radio was out. Just completely out of the question. So now what? I stared out of the window from my chair in my bedroom, but I live in a quiet cul-de-sac and the only activity I saw most of the day was performed by the squirrels running from tree to tree.

    One day it occurred to me that maybe I could knit. Fortunately I'd learned how some years before. One thing was for certain, I was in no shape to try to learn anything new. It had to be something that (hopefully) would be automatic, a skill I'd already mastered. As long as I hadn't forgotten how, knitting was a real possibility.

    I dug out needles and yarn and started knitting, or actually I started purling. For those of you who knit, you'll know this will create a different kind of texture than knitting. For those of you who don't knit ... forget about it, it won't affect the story.

    I could not have followed a pattern, didn't bother with a guage (again, non-knitters, forget about it). I just started in, and hoped that it wouldn't end up as a tangle of snarled yarn. A couple of false starts, though, and I was in business. At first I could only do it for a few minutes, then had to go to bed. Worn out brain, and sore hands. Had to recuperate.

    Over the next month, though, my body and brain made their adjustments and I was knitting (okay, purling) for hours at a time. By the end of that winter I had created eight panels that were each six feet long, which I stitched together to create an enormous, lumpy blanket.

    Nobody ever used it, to my knowledge. But that had never been my intention in the first place. My goal was to do something that helped quell the mess in my head and made me feel like I was making something happen, and that my time was doing something more than just leaking away.

    Eventually I unravelled most of this blanket and used it for other projects when I was feeling better a few years later. I kept one panel which I made into a scarf for my 14-year-old daughter at her request.

    I have knitted off and on since then. There would be years when my hands and arms were too sore and crippled and my supplies gathered dust. The last time that happened, several years ago I was afraid I was done for good.

    But last winter I made over an old sweater of my husband Alan's for our dog Cleo. She'd hurt her hip, which is especially unnerving when it happens to a dog with only one remaining back leg. I'd read that keeping it warm when outside in the winter might help.

    So Cleo ended up with two doggy sweater vests that were long enough to cover that hip. One was brown, made from Al's sweater. The other was dark green, revamped and reknitted (knitting and purling, this time) from a sweater I'd started five years earlier and had become too crippled to finish.

    All of this was enough to make my fingers eager to get creative. I was careful to start out (as I do with everything) only spending 5 to 10 minutes in a day, with a day or two in between. Within a few weeks, I was spending a good bit of my evenings with needles clacking.

    Since last winter I've made myself a hat and scarf, and an infinity scarf for a friend. My daughter Sarah and son-in-law Jordan are having a baby later this month. They live a province away so I am not going to be there with her when the baby is born. I wanted to do something special for them so I knitted a sweater, hat, scarf and blanket for my new grandchild.

    The hat has a pumpkin stem, blossom and leaf on the top, and sweater has a leaf and blossom, and so does the blanket. I call it her Pumpkin Layette. I also just mailed her what I called a chakra shawl (named for the colours in it) and a hoodie for the baby with two heart-shaped pockets. One pocket holds a bunny finger puppet and the other has a teddy bear finger puppet stuffed inside.

    I'm presently working on hats and scarves for my grandson's birthdays in the fall.

    I'm having a ball, I have to say. The odds have been against me for a long time. I can't guarantee that there won't be another cave-in down the road, but so far so good. I have contacted a local group that knits hats for NICU babies in hospitals around the area.

    I just heard about knitting club meetings held in my town twice a month. I might even go to one, maybe even more than one.

    If you have ME/CFS you know how monumental that really is. I haven't gone to something like that in years, though I used to do that and far more before I was sick.

    I'm toying with the idea of selling some of my knitting. We'll see how that goes.

    So you never know how something might turn out, even if it started badly. Or kept stopping, starting and stopping again. Even if you only started doing it in the first place to save your sanity as you slumped in your rocking chair or flopped in your bed looking down into the abyss.

    As I worked my needles that winter 12 years ago, with no more thought than that I wanted to finish the next row, then the next ... I could not have hoped that it would lead to the joy and satisfaction I'm finding today.

    Have you been surprised by unexpected results that brought you great satisfaction?




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    Continue reading the Original Blog Post
     
    Wayne, rosie26, PennyIA and 4 others like this.
  2. Jody

    Jody Senior Member

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    Wayne likes this.
  3. mermaid

    mermaid Senior Member

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    Thank you for sharing your knitting story. Although I have not been as ill/disabled as you were, I too have restarted knitting and crocheting since I developed ME, and make hats mostly as they are not too big to manage.

    I have even been able to sell some of them over the last few years, but want to also make hats for homeless people. I am thinking also of going to a local knitting group where they knit for charity.

    Thank you for the link to the FB group too.
     
  4. Jody

    Jody Senior Member

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    Thanks mermaid.

    Knitting is great, isn't it.:)
     
    mermaid likes this.
  5. AndyPandy

    AndyPandy Making the most of it

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    The joys of knitting (and crochet) :). I've been a fan since childhood, but haven't been able to do any for a few years until just recently.

    I now do tiny amounts when I can manage it. A few minutes every once in a while and soon a baby beanie is finished.:balloons:

    It's finding the small things that bring joy to my life that help me get through the succession of long difficult days with this illness.

    Best wishes
     
    Wayne likes this.
  6. Tammy

    Tammy Senior Member

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    I do not know how to knit but I was just telling a friend of mine that I have got to do something to help pass this time of boredom. I think I could learn at the senior citizen center and would eventually like to make booties, caps, etc. for premie babies........I used to work as an ICU neonatal nurse and there were never any small enough hats or booties for the really wee ones. So glad Jody that you have found a pastime that you enjoy................great! Would like to see some photos if you ever wanted to show some of your work...........especially would like to see what you made for your grandchild.
     
    Last edited: Sep 2, 2014
    Wayne, Little Bluestem and AndyPandy like this.
  7. Jody

    Jody Senior Member

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    AndyPandy,

    It's wonderful to come back to something you had to leave and didn't know if you'd ever reclaim it. Makes it that much more sweet. :)
     
    AndyPandy likes this.
  8. xxRinxx

    xxRinxx

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    I knit and crochet too! I just made a hat for my friend, and now I'm knitting a hat for myself when it gets chilly. I got myself a whole lot of yarn last week for christmas projects I have planned. I love knitting and crocheting..it makes me feel like I can accomplish something and not tire myself out, that and you get to give people presents, which is a bonus! I did stuff like this a bit when I wasn't disabled, but since getting ME/cfs and POTS my crafting corner has exploded since I can do everything sitting down. Knitting, Sewing, Crocheting, embellishing clothing, even little house projects. I don't know what I'd do without little hand projects!
     
    AndyPandy likes this.
  9. Jody

    Jody Senior Member

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    Tammy,

    I'll be happy to show you photos. As soon as I figure out how to get them to show up on here.:)
     
  10. Jody

    Jody Senior Member

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    xxRinxx,

    I know exactly what you mean. Happy knitting.:)
     
  11. IreneF

    IreneF Senior Member

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    I love knitting and crocheting, but my hands have been hurting too much. I have a history of carpal tunnel syndrome. Very frustrating, because I can just sit in a chair and listen to the radio while knitting. I esp. love socks.
     
  12. JAH

    JAH Senior Member

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    I really enjoyed this article, and would welcome other stories in this vein. I think boredom is an under appreciated part of chronic illness. Though knitting isn't my thing, thanks Jody for your well written chronicle of finding a creative outlet to channel the tiny amount of energy you still had.
     
  13. Bob

    Bob

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  14. SDSue

    SDSue Southeast

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    I love this, Jody. I'm not up to knitting or sewing yet, but I've just regained enough oomph to begin a little painting again.

    It isn't about the finished product; it simply feels amazing to produce something.

    Unraveling your blanket felt sad to me. It seemed such a tangible reminder of progress. But then again, maybe it was more a remnant of the darkest days of ME - the days to which none of us wish to return.

    Here's to more creative endeavors!
     
  15. PennyIA

    PennyIA Senior Member

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    I loved this. I, too, found knitting and crocheting again after becoming ill with ME/CFS. There are flare ups where I have to set it aside... but I've learned to really REALLY love how it forces me to stay seated when I'm feeling better and feeling guilty over the undone chores - that if I attempted to do them would just cause a crash. But it engages so many skills - creativity and handwork... and yet, if I need something simple, I can do something simple. If I need a challenge, I can do something more challenging. All from my spot on my bed where I can lay semi-propped up.

    If you haven't spent much time on Ravelry, I invite you to check it out. (Think of it as facebook for knitters). www.ravelry.com.

    If you search for the word 'chronic' in the groups, you'll find a few groups of ill members (some with ME, some with EDS, etc) who support each other while also being knitters.
     
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  16. Jody

    Jody Senior Member

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    Irene F,

    I sympathize. My hands used to be so bad I couldn't hold a pen or take off a tupperware lid. A few things I found helpful --
    Long term, omega-3 (fish) oil (expect to wait at least several weeks for improvement)

    Lymphagen ointment (mostly for lymph-related things but sometimes it would ease the pain in hands and arms (often within 20 min of a first use, or after using a couple of times in a day or over two days. If it didn't do anything by that time, I figured it wasn't going to)

    Castor oil wraps (use once early in the day, once late in the day, an hour each time. No improvement for the first day but subsequent days, if it was going to work it would be noticeable by the second day. just keep going till the pain is gone)

    I was totally crippled, my hands and arms at different times were completely useless. I have been very fortunate to have been restored as much as I have.
     
  17. Jody

    Jody Senior Member

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    JAH,

    The boredom is horrific. People who have not experienced it can't know what boredom is like when it goes on for months and years.
     
  18. Jody

    Jody Senior Member

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    Bob likes this.
  19. Jody

    Jody Senior Member

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    SDSue,

    Painting? That's fantastic. I couldn't do that BEFORE I got sick, let alone now.:)

    Unraveling it was not a sad thing for me, it just felt like it had served its full purpose. It didn't get unravelled until I needed the yarn for another project (a few years later when I could knit again) so It was just being reused. I was delighted to be able to reclaim the yarn for another (more useful) project.:)
     
  20. Jody

    Jody Senior Member

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    PennyIA,

    You described how it can work for us really well. There aren't many activities that can roll with us in whatever condition we're in that day ... or month ... not like knitting and crochet can. Very comforting, and stimulating when we want it to be ... then when that wears us out, comforting and simple again.:)

    I'll check out Ravelry. Thanks.:)
     

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