“Knowing others is intelligence; knowing yourself is true wisdom. Mastering others is strength; mastering yourself is true power.”
-Lao Tzu
I lost June somehow…
Somewhere in between sunrise and the fireflies, the moonlit nights and the meteorites…
Vague dreams take shape, struggling, dragging, then thriving and flowing into tangible, achievable goals… and ebbing into self-doubt and insecurities.
Becoming. What am I becoming?
This remains to be seen! A reluctant blogger to be sure. I am not even comfortable calling myself a blogger, honestly. But here I am, trying.
I am an absent-minded dreamer, yet absent doesn’t mean unaware, vacant or devoid of all thought; I just need time to sort it all…
An old idea takes shape in my mind as if it was newly made. It is a goal, an ideal: the only way to be successful is to succeed at becoming oneself.
A feeling that I have to hide what I am in order to be tolerated must be dismissed.
This, I believe is the source of my reluctance. I’m weird by society’s standards, and I am happily so.
Here, I recall: my journey is my own, and I am what I am, as you are what you are. Likewise, we have an incredible power to shape our lives and our perception of life itself.
Leading a life uncommon is a tricky business. It confuses people who cling to an archaic man-made recipe for fulfillment.
Funny thing, all of the world’s most disturbing problems are 100% man-made at the root…
I digress.
June has been productive, painful, and enlightening! I pushed myself to release 2 of the patterns I’ve been working on (longer than I’d like) this month. If I’ve set it up correctly, you should be able to click on picture to view the pattern listing.
The Granny Grid:
And the Diamond Mesh:
All worked in one piece from the bottom, these reusable bags are durable and machine washable with super stretching capabilities. And they’re cute! Well, I think they are. Just say no to plastic grocery bags- they are worse than pointless, they are harmful.
The Harmony Market tote series means a lot to me, and I mean to see it through. There will be at least 3 more of them, and I will take some time to write about my motivations for this series at some point.
I can confidently say I’m a crochet designer now! That giddy feeling of seeing the product a stranger made with my pattern for the first time was enough to set me straight. Reinforcement, though unnecessary, arrived when I made my first few pattern sales.
Now I’m, a little more confidently/hopefully, looking forward. I want to be able to write patterns that are easy to follow with helpful hints for beginners and those who don’t like reading patterns.
Some crochet things I aim to work on are photo taking/lighting, and pattern naming. I’d like to have people test my patterns in the future as well. I’m going to try to release (at least) one pattern per month for the rest the year. I’ve gotta get at least a couple of the mermaid tails written up, and I want to finish my first mandala Afghan design too. There will probably be some tea cozies, a sweater, and a shawl, maybe more mandalas.
I need to get back to the marvelous summer beverage cozy for some minor edits, too. Not really a priority but I hope by writing it here, I won’t neglect it for too long.
I might sneak in some more recipes here too. I’ve been fussing with my lemon blueberry scone recipe, and it’s almost ready to share. 🙂
Lastly, as I aimed to do from my first post, no sugar coating. Time for some honest, confessional spoonie talk. With healthcare issues being a topic of much debate, I feel compelled to share at least a part of my story.
I don’t feel sorry for myself, and I don’t want others to feel sorry for me either, so I avoid talking about it. There are worse things, but this is a piece of my reality, and not, I imagine, uncomparable to the reality of others who live with autoimmune diseases/disorders or chronic pain.
I overworked myself this month… We tackled our first home improvement project together, re-finishing our deck. I got enthusiastic, and it was fun.
Definitely not something I ever saw myself doing! Decks are such a weird luxury. And a lot of work. Cleaning, washing, filling, sanding, staining… My partner did most of the work, but I chugged along at my slower pace, and it was a good time. Just a little bit stressful.
A dear friend of mine came over and helped us push through the final leg.
Now we can get back to our potted garden and stargazing on the deck without fear of splinters!
And now I am suffering for it. I don’t mean muscle soreness from more than average physical exertion. A flare, or something akin to one. They don’t happen often anymore, because I am usually careful about controlling the things I can control, like diet, exercise, and limiting my daily activities- budgeting my spoons, so to speak. But sometimes I relax a little because I feel ok, and I take on projects my doctor would frown upon, because I let myself forget what it’s like… or because I choose to forget/ignore? I don’t know. I get carried away.
My partner told me to take it easy, but I was too caught up in the moment to bother or to really hear and comprehend.
So here I am glued to the couch, narrating this post to the cat through the microphone on my phone. I’ll have to go back and insert some pictures and links when I’m done, check for typos…. but anyway.
What’s a flare you say? What’s wrong with me, anyway? Rheumatoid Arthritis is not Osteoarthritis; it is a different, fiery beast. I don’t know how it is for other folks with RA because, though I have spoonie friends, they, like me, don’t like talking about it. We like unrelated, therapeutic subjects, like crafting and art and music.
However, in a lot of the RA/Spoonie groups on Social networks, many express sorrow at the lack of understanding, the lack of empathy from their loved ones and close friends. They feel like people think they’re faking or are just selfish and lazy.
For my part, I always did my best to walk normally, to not let people see what was going on inside, right up until my invisible illness stopped being invisible. Did that make me strong or stupid? I still don’t know.
When that happened, I marveled at the attitude of strangers toward the visibly deformed version of me. Everyone suddenly became very friendly and accommodating; it was very confusing. That strange, encouraging yet piteous look in their eyes took me a long time to classify. Random people at the grocery store go from grumbling at my slowness in the produce section to asking if I need help reaching the zucchini!
Today, I don’t care what people think.
Today, my joints pulse with heat. It radiates from so many places at once that it’s difficult to pinpoint. Fingers, wrists, elbows, hips… neck, back, shoulders, knees, ankles… everywhere. My muscles struggle through the fire, swelling, and stiffness to do what needs to be done. I am utterly zapped. It feels like gravity is cheating, like an invisible force is working against me. Getting out of bed is the biggest hurdle…
Seeing these words, I’m reminded of my days of working full-time, days I wouldn’t get out of bed at all, save to use the bathroom.
I was not medicated; After my initial diagnosis, in my early 20s, I went untreated for more than a decade. My mental health issues were no doubt partly responsible. I could not afford insurance, and I was not eligible for medical assistance because I worked full-time. Free clinics could do nothing for me other than prescribe naproxen sodium(aleve) because RA drugs need to be monitored by a specialist. I gave up.
So… Flares used to be worse. Like real flares. I could never get enough sleep, I could never stay asleep, drifting in and out of pain and dreams. Unrelenting pain, involuntary vocalizations…
Memory lane…
Getting stuck in bed, getting stuck on the toilet, the cat yowling at the bathroom door. I felt impossibly weak with pain shooting through my knees when I tried to stand. It was like gravity had changed, throwing a heavy unseen blanket over my whole body, and I was helpless against it. I had no future and no past, just one task. Get up. Yelling at the cat to shut up so I can focus on standing. Crying and apologizing to the cat. Chiding myself for drinking the water that made me have to use the bathroom…
Well, today’s flares are different. I got lucky in meeting the love of my life, lucky enough to not have to work full-time anymore, and lucky I am now eligible for medical assistance. I take Humira injections and aleve sparingly, I see the specialist 3-4 times a year, and I take much better care of myself.
Nowadays my Kikabeast needs her medication in the morning, so I get up, and my love for our little family here carries me through the motions. Quality may vary, but every day is a gift.
Now my feet… what can I say. I keep drinking tea, and waiting too long to pee. This way, as I limp at speed, I can focus on getting to the toilet on time instead of the sensations responsible for my strange gait.
My partner offers massages and biofreeze, he brings me my tea and takes care of me best he can, when I let him. (Honestly, the biofreeze just makes my skin cold- it can’t touch the source.)
As my doctor noted early in my treatment, medication can only do so much. He warned in my very first appointment, “I believe I can make you at best 50% more comfortable.”
And I am much more comfortable, but I suppose I’m not ready to accept that I have to constantly talk myself out of doing the things I want/need to do because of RA. I don’t know if I ever will. How often do we do home improvement projects together anyway? We’ve been together 8 1/2 years, and this was the first time. How could I miss that? I know this disease will continue to progress, and I know the deformity will get worse. But it is what it is.
So, mind over matter, this too shall pass. And it will. I could sit here with my head in my hands calling myself stupid for overdoing it, but it was my choice. I think in the grand scheme of things, decks are kind of silly, but oh the joy of stepping outside on a good day, barefoot with tea in hand, to serenade the dawn with a choir of birds and a purple sky. Sometimes flares are random, at least I have the weird/awesome luxury of a new deck to show for it.
I’m deciding it was worth it, this time.
Chronic pain has been my greatest teacher in philosophy. It demands a strong adversary, that is to say, a diversion that will be enough to forget the pain or at least to put it in the corner. It implores me to rise above, to avoid the path of self-destruction and to create, to love.
That’s the gist anyway, and all I care to say on the matter at the moment.
Thank goodness for yarns and musics.
💜
PS: If you haven’t checked out the original spoon theory post, find it here. My RA is no longer invisible, but I still find the content extremely relevant.
Note to self: Rest days provide me with the opportunity to reflect, so I attempt to figure out the source of the flare, or what could have prevented my present discomfort. Yes, I over did it, but why? I believe it is here: My unwillingness to stop what I was doing when the symptoms began. It is hard for me to say I cannot do a thing a me without RA could do. So I must edit and say the deck experience was a good time, mostly. It became a little frustrating when the symptoms started creeping in, and the spiteful and jealous RA creature I sometimes slip into when I’m in pain peeked out a little. It wants me to be jealous of all the folks who handled life better and all those who life handled better. I got a wee bit snappy, but checked myself. I am grateful to be with someone who understands me so well.
And one without coaster in Stained glass- works great for my taller glasses and only 11g! 🙂
Jackie Blues 