Jay and I are making a friendship sweater

If I don’t start writing this now, imperfectly and rambly, it will never get done. I’ve come to see how this is a combination spoonie/ADHD problem – I’ll have an idea for a blog post, and I’ll write half of it in my head (perfectly!) but then never get to writing the actual post at my laptop because I’m too tired or in too much pain. Or I’m completely out of executive function because of the ADHD or because of the chronic fatigue – which worsens executive function (that’s why they call it “fibro fog“). “I can’t write in that state,” I’ll think. “It’ll suck.” Maybe it will. But, as they say, perfect is the enemy of the good, and waiting until I’m clear-headed and full of energy means I’ll never get to anything.

So here we go, with imperfect blogging.

It’s SWEATER TIME. 

I’m knitting an entire sweater! Rather, I’m planning on making an entire sweater. I don’t want to get too far ahead of myself, as the whole point of blogging this process is to encourage myself to keep at it. Telling the internet your goals is usually a bad idea, but I’m making an exception here because the goal isn’t a deeply personal one, and because I want to connect with other knitters (HI! I’m Direcorgi on Ravelry).

If we’re going to get technical, I have knit sweaters before, but only a couple of times, and they were very tiny. It’s not that they don’t count, it’s just that my current venture will require a lot more commitment and attention to detail. I’m a slow knitter, made slower by chronic illness issues and a lifelong devotion to novelty.

Here’s the one I made for our daughter way back in 2005. I’ll replace this shot with a better one of the whole sweater, when I can find that album of pictures (see future post, “How I decided between Flickr and Smumug” to be written after I’ve made my decision). The pattern I used is a paper one I picked up at my LYS (local yarn store) when I lived in Portland. I can’t remember the name of the company that produced the pattern (does it help if I say it was printed on yellow paper?), but if I find it I’ll update this post. 

I know other babies are cute, but dang.

We’re making friendship sweaters!

We! Jay and me! This was all Jay’s idea. She texted me one day and said she’d bought a sweater kit from Bluprint (an offshoot of Craftsy), and would I want to buy the kit too, and knit it with her, and we could make friendship sweaters? She is so great. I loved this idea, and immediately said yes and bought the kit. It arrived, we spent the evening with my ball winder and swift winding up all the yarn into ready-to-go balls, we swatched and we got started……and I just couldn’t get into it. It’s a simple pattern in theory, but following it required too much attention. I like patterns I can mostly memorize and just refer back to every now and then. This wasn’t that. Every row I knit I had to watch the directions carefully or I’d make a mistake, and I just didn’t have that kind of mental energy.

I made a joke about wondering how many pairs of socks I’d have to knit Jay to make up for her taking over this project and knitting my friendship sweater herself. Halfway through a discussion of a totally different topic, she leaned over and said, “I think maybe 3,” and I laughed out loud. Can I just say: having spoonie friends is wonderful. Friends, in general, are wonderful, and my connections to the people in my life are definitely the best part of my life, but when you can feel safe to just have your struggles around someone, it’s so big. Sometimes when a friend is like, “Hey, I see you, I see that struggle, let’s just put that down,” it’s like, thank you.

Finally, I had to put this struggle down, and admit I wasn’t enjoying it. It was so slow-going, such a painful slog, that I knew I wouldn’t keep at it over time, and I really wanted our friendship sweaters to get made. I explained why I was struggling, and Jay suggested we try a different sweater pattern. One where I could just knit without having to refer back to the pattern for every row.

Enter FLAX!

Jay had knit a couple of Flax sweaters, from Tin Can Knits, already. She said the pattern is really simple. It’s actually designed to be a person’s first sweater pattern! YES!

It’s a FREE download, and it comes in a great range of sizes! YAY! And they have tons of tutorials about both their patterns and other knitting skills!

I could not download fast enough. I put the pattern on my iPad. My favorite iPad app for PDFs is PDF Expert by Readdle, I just highlight patterns as I go along. I can add notes and stuff, without worrying about damaging the pattern or losing the copy I’m highlighting.

Step 1: Swatching

Swatching has been….a little tough. I used the same yarn I got for the first sweater, it’s the right weight. But while both swatches seem to give me 4.5 stitches per inch, the swatch that was knit on 8’s (size of needle called for in the pattern, not that that matters much), came out to 3.5 inches, while the swatch on the size 9’s came out within a hair’s breadth of 4 inches wide.

Since 4 inches is the correct gauge, I ought to just use the 9’s, but I had a bit of stress about this because, for whatever reason, knitting with the 9’s was harder than the 8’s. There shouldn’t be that big a difference. If the 8’s feel okay, I don’t see why the 9’s would feel so wrong, but they did. They felt disproportionately bigger and clumsier, and I was struggling with them. It was weird, I’ll admit. When I blocked both swatches, I thought the one on the 9’s would be all huge and hole-y, but it looks just fine. You can barely tell the difference, in fact the only way I could differentiate between them was that the 9 swatch is a half inch bigger. I guess there’s my answer: learn to adjust to the 9’s. Or end up making a sweater one size smaller than I am, and……shrink? Unlike wool, I won’t felt up in the wash (with the number of hot baths I take in a month, I’d know by now). No, better make the sweater to actually fit me.

Jay, for her part, is finishing the original sweater (she’s so speedy, it’s amazing), and then she bought her own new cache of yarn for her Flax. Only this time we took it one awesome step farther: she got the same color as me. Sitting at the table, gleefully planning the new friendship sweater, she points at my ball of yarn and says, “You know, I almost got that moss color, it’s a really beautiful green.”

Me, immediately: “Yes! Get the moss!”

“Do you think that’s okay?” Jay asks.

“It’s perfect! We’ll be twinsies! And then we can get a picture of us together with them on!”

“And I’ll make us matching hats!”

“And I’ll make us matching socks!”

Our voices were pretty high by this point. Jay’s spouse was hilariously rolling their eyes.

Jay already made us cowls!

Okay, now to get those first stitches on the needles. Maybe a bath first. It’s snowpocalypse here in Seattle, so I’ll have a good few days to get started. Hopefully by the end of the weekend I’ll be able to post an update more exciting than, “Look! I got to Row 3!”

No pressure, future me!


Pertinent links:

Inktober Days 6 and 7 – “drooling” and “exhausted”

I missed yesterday, I had some mysterious illness and was on the couch sick for hours. That means I missed yesterday’s Inktober prompt, which was “drooling”. But when I saw that today’s prompt was “exhausted”, well, hello fellow fibromyalgia/CFS sufferers! It’s our word, eh? I knew this had to be my first self-portrait.

So why not put exhausted and drooling together? Here’s me, asleep and drooling.

I took a reference photo of myself, and used a pencil to do some line work before I went in with the ink:

This was really fun to do, because I gave myself enough time! I worked at my little table upstairs, not on the couch with my corgi half in my lap and the TV on to something distracting. Instead I got a snack, I came up and cleared off some space, and I sat down  to do some art. Being intentional about it made for an entirely different experience.

Last night I watched a video on Skillshare from Yasmina Creates about pen and ink. It was great, I was surprised how much information she packed in to just a half hour video! One of the things she went over was hatching and stippling, which I really need to practice but that’s fine because I love it, as well as how to take care of ink nibs, and brushes that you use with ink, and a bunch of other things. I tried to use some hatching in today’s piece, and I’m moderately pleased with the results. I can see how I need to get better at it, but for a first go, I’m liking it a lot. I get the little zing of happiness from this one (that I sadly didn’t feel from the chicken, lol).

My forehead is also way bigger than I thought it was! Proportion, it’s a thing. And the upper left side of my forehead isn’t actually so squared off, but that falls under, Oh Well, I’ll Do Better Next Time. Such a nice heading that is. I put everything under it these days.

What really matters is how much joy I feel when I draw and paint, and I felt that tonight. I was having a hard day before this. The pain continues to be awful (I feel like it’s a fall/winter thing, but taking loads of Vitamin D don’t seem to be helping, and I’m not yet willing to move to California), and there comes a point where I just feel broken down by it. Being in pain all the damn time is the most distracting thing I can think of, and I hate it, so much. It interrupts my thoughts, my sleep, my every waking moment. It like a Pac-Man in the brain that just looks for any happy chemical your body produces and rushes over to it, gobbling it up.

When I draw and paint, it puts more of the good chemicals out there. Oh sure, Pac-Man will eat them up, later. I know. I’ll wake up tonight and have to walk to the bathroom with this crazy stiff spine and hips, gripping the end of the bed, trying not to exhale from the pain so loudly that Greg wakes up. But tomorrow I can draw and paint again. I can make happiness happen, with a tiny little sketchpad and a set of paints and a brush and a glass of water.

Stanford’s fatigue scale in a questionnaire I was sent

I’m putting this here just for the sake of interest. If you have CFS or Fibro, or wonder if you do, and you have a hard time describing your fatigue to others, here’s a scale that I found in a questionnaire sent to me from Stanford (where I went for some treatment a year ago).

It might be useful for you if you’re having trouble describing what you mean when a doctor is asking you, “What do you mean by ‘really tired’?”

The blue dot is my score. I look down to the bottom of the page. I love that: normal. I really miss normal. I miss being able to exercise.

I loved dancing. I would dance for an hour or more, every day, just bopping around the room to music. Worked up a great sweat, kept all the joints lubricated, and it was just awesomely fun. The last time I tried to dance like that was about two months ago, when Greg got a new wireless speaker and I was testing out its capabilities while everyone was at work/school. The music sounded great. I started moving…carefully. I got into it. Memories came flooding back! I loved it. By the end of the second song I was exhausted. I had to stop everything I was doing and go sit down, and stay there until evening. I slept the whole next day.

It’s scary knowing that I’ve been sick for about 11 years, and slowly moving down the scale every year. Will I hit 1 this year? Next year? What about 0? It’s terrifying.

Another CFS & Fibro Awareness Day is here

I’ve been sick now for about eleven years. It started for me in the summer of 2007. Chronic Fatigue Syndrome. Fibromyalgia. I’ve been diagnosed with both. They’ve already ruined my morning, and I’m going to try not to let them ruin my day.

I woke up this morning to the International Day of Awareness for these disorders being all over my social media feeds, which meant I was in tears before I got out of bed. Fine, whatever. It’s just exhausting.

And you know what else is exhausting? Not having anything to point to, that communicates anything about this part of my life to anyone. What do I point to? The couch? You can’t point to an absence of things. I don’t have a broken bone, or a malfunctioning organ, or a torn muscle, or anything else that I can point to and everyone can make a fuss over – or that CAN BE CURED. Nobody gets to nurse CFS for attention. No one wants to hear about it. It’s exhausting to have, and it’s exhausting to listen to, because it’s hopeless. There is no cure around the corner. You aren’t waiting for your operation that will solve everything.

You can’t give anything for anyone to rally around, and people love things they can rally around. If they can’t rally, guess what?

You fade away.

People with this disease are invisible. My oldest group of friends, people I’ve known twenty years, made a book group and never invited me. Took me months of feeling devasted (and stabbed in the chest every time I had to listen to members talk about it) to finally screw up my courage to ask why I wasn’t included.

“Because we assumed you wouldn’t come.”

We are invisible.

We do not exist anymore. We’re photos on Instagram. We’re people you used to know, people you used to socialize with. We’re Facebook posts you “like” but we aren’t people you actually talk to anymore. You don’t invite us over. You don’t include us anymore.

My dreams, the ones I don’t have any decent odds of achieving, are invisible, too. I won’t be traveling out of this country, or even across the country to visit my family, anytime soon. I look normal. No one sees that I can’t shower without a stool to sit on, that my stepdad picks up my daughter from school every day to save me the 20 minutes of energy that driving there would take. No one sees that I just sent my boat to my dad because I can’t go sailing anymore or take care of her maintenance. That I sit inside my house all day because if I drive myself out somewhere, even just to a local park, it’s possible I won’t be able to drive myself back. Or that when I do, I will be so exhausted that when my daughter gets home from school, I’ll be unconscious on the couch, which isn’t how I want her (or her brother, who comes home later, with Greg) to remember me later.

Today I need a shower. But I have to put it off until the end of the day (if I have any energy left), or until tomorrow, because the family wants to go see a movie today and I can’t do both. Important note: many people with CFS/ME couldn’t even go see the movie, and this wouldn’t even be a question for them. I’d love to be one of those back-to-college success stories, but I don’t have the energy to finish my degree. To do that would require getting in a car, driving to a school, parking, walking into a building. Sitting for a few hours, having the mental energy to follow a lecture and take notes. Get myself home. These things aren’t currently possible. I talk to friends like those things will be soon, but the fact is, they were possible a few years ago and haven’t been since then. And I get worse every year.

Those tasks are very similar to what’s required for a job. Can’t do that either. I had to leave a great job at Tom Bihn, that I enjoyed very much, because I was just too tired. My shifts were actually quite short, only four hours or so, the staff were so wonderful about working around my illness. My work was enjoyable, not stressful. Despite that, my energy tanked. I’d find that on the drive home I’d be dangerously tired to be behind the wheel, and when I got home, I had no energy left to interact with my kids. So I begrudgingly left a place where I got to talk about buying and making travel bags all day with customers, sewers, and designers (if you know me, you know that this was basically my workplace heaven), and returned to being at home. I have some amazing bags that would love to take me around the world. If I’m lucky, they take me on the train down to Portland.

 

I know, I’m smiling. You know why? Because despite what you may have heard, complaining all the time isn’t that fun. But for the record? I hate that I have to do this. Sailing was my life. It was the thing that gave me the greatest joy. I’ve obsessed about it for years, in the most glorious way – read about the concept of “flow” to get some idea of how sailing made me feel. Nothing makes me feel like that. And now my fat little twenty-foot tub is gone. I got three years of doing the thing I love most. My relatives in their sixties and seventies have been sailing their whole lives.

I don’t shower or bathe alone, because those things can sometimes trigger attacks of weakness that make it hard to get out of the tub. I don’t move around the house when I’m here alone, without carrying my cell phone with me everywhere, so I can talk to my husband if I need to or call for help if I’m crashing.

Everyone makes fun of me for carrying around a heavy bag, jokes that “This is why you’re so tired,” but I carry that bag because I’ve found myself out in public too many times, too tired to get up from the table, or to leave the bathroom, or to walk to my car, and I need that bottle of water and that bag of snacks. I carry that extra battery in case my phone dies and I have to call a ride. I carry that scarf because if I have a bad panic attack, wrapping it around my head is one of the few sensory tools (carrying that bottle of essential oil is the other) that will really make a difference in how much calm can be regained while I’m waiting for my Ativan to kick in.

You want to know what’s really beautiful to me? Every time we’re out, my husband Greg says, “Want me to carry that for you?” He carries this bag wherever we go. He knows I need it. He doesn’t tease me about it anymore. He stopped. I just realized it’s been months since he said anything about it. Come to think of it, half the time he doesn’t even ask. He just takes it off my shoulder and slides it onto his.

There are so many good things in my life, too.

But those are the visible things. And we tend to get assessed on the visible things. So, I’m assessed as Very Fortunate, which I am – that label isn’t wrong. I’ve been married to my best friend for 22 years. I’m more in love with him now than ever. I (and we) have great relationships with our kids, and they are truly funny and good people. Is there some kind of karmic bank that says I can have these things but I can’t live a normal life? Am I supposed to just know that this is enough? I shouldn’t want a career, or the chance at a degree, or the ability to find out what I’m capable of as a human?

Is this all I’m capable of? Blogging about being sick? Sewing a few things?

I miss the person I used to be.

When I first started sailing. The pain and fatigue weren’t as bad, then. I wasn’t a very energetic sailor, but I could do it safely for a couple hours at a time.

I miss the person I could be. I think she’d be pretty cool. I think the world would be better off for her.

I texted my friend this morning. She has chronic pain issues and has struggled with the cycle of feeling hopeful, then burned when something didn’t help, or didn’t help enough. She’s used to us talking in a more hopeful way, but this morning when I wrote that I just needed someone to say, “I see that you’ve gotten worse, I see that it’s happening,” she said it. She saw it. And that helped me so much. She knows what I meant. I don’t need to dwell on negativity (we both find that tiring and draining), and I don’t need to wallow. Every so often I just have a day where I want the bad stuff to be noticed. Acknowledged. It doesn’t have to be every day, or even most days. Maybe one day a month? Would that be okay?

If you’re so inclined to do anything else…

  • You could watch Unrest. It’s on Netflix.
  • I met a great person through the interwebs (they are good for something besides dog photos, it turns out), Siobhan, and she has a great blog you should read. She even has a post about this awareness month we’re in.
  • While you’re at it, please read this post from Siobhan where she talks about different kinds of fatigue. Just in case you think that all I need is to “go walk more” or something.

As for me personally….

If you want to help me, Hollie, just say you see it. That’s it. That’s all. If I post about this somewhere? Just tell me you see it, and it sucks, and you care about me and you wish it were different. That’s it.