As Tammy Strobel points out, social media gets more and more problematic. With the idea of turning an eye back to blogs/blogging, I logged into Feedly tonight, apparently the world’s most popular RSS reader (after Google killed theirs, I still don’t understand that move). But oops, I realized I’d logged into an old account, and needed to log out and back into the newer one. A simple task, right? NAY.
Feedly would have none of it. I actually could not log out of my account, there was nothing on the screen that would allow me to accomplish this (save for emptying my cache and reloading the page, which I finally tried – that worked). I was in Feedly’s little green grip. I had to Google, “How to log out of Feedly,” never a good sign. Turns out I’m not alone. There are even complaints about this. Next thing to get Googled: “How to cancel my Feedly account”. Oddly enough, they make that easy. Done!
First time was the charm with this one, I signed up and loved it immediately. You can sort feeds manually, something I appreciate. There aren’t acres and acres of options and ways to organize the way there is with Feedly, something I find overwhelming and useless. With Inoreader I have enough organization power to keep my content in focus, but not so much that the organizing sucks up all my time on the site (Feedly, you have a long way to go, here).
According to that Wired article there is also The Old Reader, which I admit I see in my head as Ye Olde Reader. It looks worthy of a second look, however in my first look I found some errors with feeds (repeating images), and the interface didn’t please my eye. So, check it out if you want, but I’m going to spend a few weeks with Inoreader and see how it goes.
Several years ago I fell in love with these travel skirts, called Macabi Skirts. They’re made of Supplex nylon, weigh practically nothing, and dry very quickly. I wear them spring/summer/fall with t-shirts or tank tops, and in the winter with leggings underneath. I wore my black one to the Seattle opera once, with plan black mary janes and a rayon top and a fancy scarf (I looked great). The pockets are so voluminous and yet slim-profile that I often don’t even need a purse (there’s even a secure zipper pocket for your wallet). They also have a nifty way of clipping up until pants or shorts, via a strap. It looks weird, but I don’t care, and honestly, after the first year I stopped noticing the staring. It’s so handy to walk beaches or be on the boat with the skirt hitched up. It’s also great walking trails, although I haven’t done that in awhile.
Basically, they go anywhere and do anything, and I’m a devoted fan.
So devoted, that I’ve collected almost one of every color. But over the years I haven’t felt too fond of the new purple, the green and the light blue.
Here’s the green (that isn’t me, it’s a product photo from the Macabi Skirt website):
Unfortunately, this photo of the green skirt looks darker and richer than in real life. It’s actually a pretty light color, and not as saturated as I’d like.
Similar problem with the purple:
It’s so lovely! But in real life, lighter and less saturated.
The old blue color doesn’t seem to be on their website anymore, but I’d describe it as a dusty blue. It’s a nice color on its own and I’ve worn it a lot, but I’ve often found myself wishing the color were more indigo and (you’ll notice a trend here) deeper and more saturated.
I was looking through Dharma Trading’s website, you know, as you do, and came across “acid dyes”. I don’t know much about dyeing except for doing tye-dye jobs to t-shirts and socks and that sort of thing, so I was interested to learn that acid dyes worked on “protein” fabrics: wool, silk, some leather, and….nylon.
It never occurred to me that you could dye nylon. Since it’s a man-made fabric, I figured the color was just intrinsic to the material somehow. I suppose this line of reasoning breaks down when you consider how they must come up with all those colors of nylon (dye must be added at some point in the process), but I figured it was largely a technical process done in manufacturing, not something you could tweak later in a finished garment.
Well, turns out some nylons you can dye. I emailed Dharma to ask about dyeing Supplex, and they weren’t sure what my results would be. But I’ve had these skirts long enough that I felt okay with screwing one up. If I needed to replace it, I could. And the truth was, I rarely wore the green or purple because I just wasn’t into them anyway. Might as well take the risk and try the dyes.
I started with the green. It came out beautifully! Since I had no idea what would happen, I decided to just make it easy and simply dye each skirt to be a darker, more saturated version of itself.
Forgive the mess that is my sewing/watercolor/aromatherapy room. LOOK AT THAT SKIRT. It’s a luscious forest green, just perfect, exactly what I wanted. I was thrilled.
And then I saw the purple and it was just…..looooove. I loooove the purple sooooo muuuuch.
It’s just a PLUM BEAUTY, I can’t wear it enough. I’m wearing it as a type this. I’m visiting family in California and I was supposed to wear pants today because I traveled in the purple skirt yesterday, but I had a really bad panic attack this afternoon, and I literally put on the purple skirt because that color comforts me so much. Color is therapy.
The one thing to be aware of with dyeing things (these skirts or anything else) is that the thread used to hold garments together is often polyester, and won’t dye with the garment. The thread remains its original color. So in the now-forest green skirt, the thread is a pale lime green. In the purple skirt, it’s a pale lavendar. I don’t mind, and even like the look, but others may not. YMMV.
The blue turned out similarly, deep blue indigo, and I LOVE IT, but I wasn’t able to get a picture of that one, I’d packed it already. I’ll try to add a photo of that one later.
In preparation for this trip, where I knew I’d be at the pool in the sun a lot, I bought a rash guard from Lands End to protect my tattooed arms and keep my back from burning to a crisp. I bought a white one:
Material: 91% nylon/9% Lycra® spandex.
It isn’t that I love white, it’s that I wasn’t a fan of the other colors. White was the least bad.
Well, it’s now purple. But it didn’t turn the same shade as the skirt, it had a little more pink to it. It looks great!
Again, note the white thread – most threads won’t dye. You really have to dig that look if you want to do this.
I hope this helps other intrepid dyers and Macabi skirt owners! I’m so inpsired by this, it took hardly any time on the stove to do the actual dye jobs. I did have to pull up a stool to stir the pot, with the CFS I can’t stand and stir for hald an hour. But after it comes out of the dye bath you just wash and dry, and that’s it!
A couple of months ago I discovered the joy of spin pins.
They can apparently “do the work of 20 bobby pins”. I shudder at the thought of any hairstyle that requires 20 bobby pins so I haven’t tested this claim, but I can say that these spiral pins are amazing. There are so many things you can do with them, and they hold hair tight and pain-free.
While everyone else takes joy in the pixie, I’m growing out a pixie from 18 months ago. It isn’t Officially Long yet, it’s at that really annoying length. Long enough to get in my way, not long enough to do anything useful.
What’s saved me is two things: my summer discovery that I could use my copious store of knit fabric and a serger to make very comfortable headbands, and spiral pins. I don’t like ponytails, I have a sensitive head and elastics hurt. I don’t even own any hair elastics anymore, I just don’t need them. After experimenting with spin pins, I found I could go pain-free for hours and hours with two buns on either side of my head.
They aren’t quite as close to the ears as Leia’s, but they’re close-ish. I love channeling her, and I highly recommend the experience for any spoonie (person with a chronic illness). When I get up in the morning and put up my Leia buns, I feel a little bit of her strength. Just enough.For extra fun, you can pull a little bit of hair out of the center, and you let it artfully fly around (you can channel Leia and Phoebe Buffay at the same time, if you’re so inclined).
In the last two months, this bullshit illness has worsened. Tonight I realized that it’s reached the point where I need my shower bench every time I use the shower. I bought it a year ago, because my hips and low back would seize up with severe pain, and holding onto the stool as I stepped over the side of the tub would give me the extra balance I needed. But it was a convenience item. It had novelty. I only used it for one or two showers out of ten, and if books or magazines were stacked on top from my last bath, I could just hold the side of the tub and be extra slow and cautious. The stool was nice to have around, but it didn’t make the difference between whether I got a shower or not.
My therapist is a great person that I’ve been seeing off and on for a few years. Off when things are calm, on when the panic disorder is blaring for whatever reason. He’s fantastic at his work, a real gift to the profession, and I just stumbled into his office because his address listed him close to my house and I was too anxious to drive any farther. For a couple years I saw him every two weeks, with frequent longer breaks, which, much like the shower stool, felt like something I kept around because it was reassuring to have, but I told myself it wasn’t like I absolutely needed it.
In the last six months, we’ve shifted to every week. I need the therapy. I absolutely receive measurable benefit from those hours. I wish I could say I have to go because I’m a little extra anxious, but all we talk about is coping with CFS. It has come to dominate everything. I hate it for that.
It’s probably going to dominate this blog. I had intended to write mostly about sewing, and then it shifted to where I hoped it would be half sewing and half sailing adventures: a reflection of what I believed would make a pretty great life. But I haven’t sewn in weeks. The work of cutting everything out and getting it together is too tiring, and I’m in the middle of a flare. In the calendar year of 2017, I think we sailed twice. Once during my birthday, when we thought the herb andrographus was turning everything around and we were so full of (mistaken) hope. Now we’ve started talking about selling my little Elska. Greg isn’t pushing for it, he still loves sailing. But he’s said, “I think I’m finally ready to talk about it.” It feels like I have this big, beloved dog, that I have to think about rehoming because I can’t give it exercise.
I’ve been very lucky in some big ways, and it’s felt overwhelmingly important to acknowledge that. I’ve been married for twenty-two years to someone I love more every day. Cheesy, but true. We managed to have two great kids (who I won’t write a great deal about to respect their privacy). And in this ridiculous, unfair, punishing economy, I have access to general financial stability and excellent health insurance. As a non-working disabled person. I mean, come on, that just seems like so much (knock on wood, kenahora). What is there to be upset about? A little fatigue? A little exhaustion? Waking up in pain every day? Not getting anything done? Never feeling like a good parent, wife, or friend? Being unable to finish your degree or have any kind of professional life? Big deal. There are worse things.
I’ve internalized this train of thought. I actively avoid my own negative feelings related to living with CFS, because it doesn’t even seem fair to have them when I live with such good things, too. Those feelings have been piling up for years. Today, in therapy, I accidentally walked right into them (he would probably say it wasn’t an accident). I don’t even remember the conversation beforehand. It was like wandering through the woods, looking up at the trees, and then tripping over a log and stumbling a few feet forward into a clearing, looking up, and realizing you were surrounded by wolves – except not wolves because I love dogs. Maybe bears. But they don’t really hunt in packs. Okay, pretend bears hunt in packs. And aren’t furry, or cute.
Whatever. The point is: doom was inevitable. It was too late to back away. Here it was, and I was meeting it. “Ohhh no,” I thought. “Well, here we go,” and there I went. Within 45 minutes I’d gone through an entire box of Kleenex. As the first wad was rolled up, my therapist pulled the wire trash basket out from under his desk and set it in front of me, without missing a beat. Good job, man.
You see I am used to saying, “Hips and back are really hurting today,” in a friendly, nonchalant way, to explain why I’m not bending over to get something off the floor, or why I need help lifting something. I’m used to saying, “I’m sorry, I’m just too tired right now,” when I get invited to something. Sometimes I say, “It’s been a hard day.” And sometimes I just need to cry because I’m so tired and in so much pain and I hate being so tired and in so much damn pain, and it’s been days since I did anything useful like washed a dish or ran a load of laundry, and I just point to the ceiling (meaning I’m retiring to our bedroom) and say with a cracking voice, “I think it’s time for a let-it-out session.” Greg nods and follows me up the stairs, and holds me while I cry.
What I’m not used to is saying, “I can’t do ______, and it hurts.”
Look at that sentence structure. Doesn’t get much more simple than that. Right in front of me all along, under my nose. I went through a list of things. I can’t do this, that, the other thing. On and on. Big things, small things. Parenting things, life goal things, education things, professional life things. Things that are gone. Plans, dreams, deep desires. For every one I thought of, I cried so hard that my therapist, sitting on his chair in front of me, became a blurry haze of navy cable-knit with a head-shape on top and loafers sticking out the bottom. “Am I even looking at his face?” I wondered, through all the water pouring down my cheeks.
I don’t want to write them all down, the things. My things. It will be different for someone else. The things I treasured doing, the things that made me feel alive, it’s easy for someone to dismiss, and I won’t sit for that. Fuck dismissal. We all come alive with different things. For me, the big things that made me come alive, aren’t accessible to me right now. I don’t know if they ever will be, again. And that hurts.
My therapist said this was great work. I laughed and told him I’d bring him a new box of Kleenex. We talked about how hard it can be to sit with emotional pain, especially when we have within ourselves (and are aware of in others) so many judgements about it. Saying it hurts doesn’t mean you’re proclaiming it will never end or is hopeless. It doesn’t mean you’re wallowing. It also doesn’t mean you’re saying it’s the worst thing ever, worse than anything anyone else has ever gone through. It just means: it hurts. And it’s okay to cry about it.
I must have been on a roll, because later tonight I got home and took a shower, and realized while I was sitting there, my head full of shampoo, that I can’t not sit there. If I stand up, I get too dizzy from fatigue and exhaustion. I can take showers without the bench if I’m very careful and I make them very fast (and I don’t wash my hair that well), but it takes so much concentration (and forced optimism) and when I’m done, I’m three times as exhausted than if I had just used the stupid bench.
I got out of the shower, got dressed, went downstairs, and told Greg about it. I said, “I can’t take a shower without sitting down while I’m doing it.” And then I cried a little. And it was okay. No one judged me, and if they did, I think I’d have felt pretty okay telling them to feck off. I didn’t feel a need to judge myself. This illness is hard. It might get better. It might not. Living with it isn’t easy. It is what it is.
I sat with that awareness for a minute, and then I got up and went into the other room, and sat down with Jason and our friend Claire, and watched Pride and Prejudice. Nothing better than celebrating the acknowledgment of difficult emotions than by watching a love story set in a society actively constructed to avoid the unchecked acknowledgment of nearly anything.
“I think a ball is a perfectly irrational way to make new acquaintances.”
Oh, bookish little weirdo after my own heart. Mary and I are the INFPs in the corner at parties, petting the dog and reading the spines of the books on the shelves.