Reality Check: Fun with Fiber… and Fibro

When I first started this little sewing and knitting blog a while ago, I never imagined getting particularly personal on it. I figured blogging would serve as a fun way to showcase the things I was working on and meet other makers who love to celebrate their own handmade wardrobes, sharing the occasional funny anecdote here and there among the pictures of prized garments fresh off the machine/needles. But here’s the reality: I’ve managed to create and photograph fewer things than I would have liked in the time since I bought this domain, and that’s okay. I’ve made quite a few big discoveries about myself along the way—some pleasant, and others… not so much.

In the summer of 2018, I had been at my kitchen table working on a garment (a little yellow romper that never got photographed or posted, by the way, because frankly I sort of hated the finished product—also okay!) when I began to feel a lot of discomfort in my left shoulder, which soon escalated to weird tingling and numbness in my entire left arm, which then gave way to a wave of exhaustion followed by pain in my chest. You’re probably thinking what I was thinking at the time, and, after I came very close to fainting when I tried to walk and expressed shortness of breath, my husband rushed me to the emergency room, both of us convinced I was having a heart attack.

To summarize a very long, agonizing night at the ER (8 p.m. to about 7 a.m., during which the hospital was actually locked down due to an active shooter in the general vicinity): It wasn’t a heart attack. In fact, nothing was wrong with my heart, or anything else, so far as the doctors and nurses could tell. I was poked, prodded, and tested, and the best solution everyone could come up with was that it was anxiety. As someone prone to panic attacks and who has been treated for anxiety for years, I was skeptical that this alarming episode was caused by garden variety anxiety. Spoiler alert: It wasn’t just anxiety.

Fast forward a year later. I began experiencing similar pains, plus chronic fatigue, plus a weird variety of additional symptoms (scalp hurting too badly to wear a ponytail or even style my hair with hot tools, extreme sensitivity to light and sound, inability to so much as hold a conversation at times due to “fibro fog,” the term coined for the cognitive difficulty that plagues those of us with this delightful condition). I described what was happening to my mom one day when she visited from out of state, and she responded with a grim tone, “That sounds all too familiar.”

I knew my mom had fibromyalgia, but since she was diagnosed (after many years of seeking medical help and being dismissed because doctors are only just starting to acknowledge this very real condition) once I was living in a different city, I didn’t really know exactly what fibro was or how it affected the mind and body, other than it caused aches and pains. I’m glad she recognized my symptoms, though, because sure enough – following a series of tests to rule out some other scary things – I was referred to a neurologist who confirmed that good old fibromyalgia had blessed me with its presence.

During all this, I was doing physical therapy and had preemptively started a new medication used to treat both anxiety and fibro pain, both of which took some getting used to. Between not being able to keep my eyes open once I got home and being physically exhausted from doing what were not objectively difficult exercises, suffice it to say I was not exactly cranking out handmade garments at my sewing machine left and right. And you know what, that is okay.

What I was able to do was get a bit of easy knitting in from time to time, given that my obnoxious hand tremors allowed it. It proved to be a lifesaver during long waits to see various doctors and on bleary-eyed nights when I was too tired to function but still couldn’t sleep due to pain or insomnia (thanks for that, too, fibro). I wasn’t making any elaborate garments or things I was particularly pumped to share online, but it kept my hands moving and gave me a sense of accomplishment when I could barely manage to get in and out of a shower or drive to and from work. Plus, it gave me a sense of calm in the midst of getting accustomed to this isolating and, frankly, often somewhat soul-crushing disorder.

So, how does any of this relate to sewing or building a homemade wardrobe? The point is, when I took on the challenge of making my own clothing, I was pretty hard on myself. I’d fret over my cutting mat or fight with my machine late into the night and, honestly, drive myself (and my husband—sorry, Zach!) crazy trying to get everything just the way I wanted it or to meet impossible deadlines I’d created for myself. I overlooked the concept I’d initially embraced that makes building one’s own wardrobe so appealing: the mindful joy of slow fashion, of piecing together garments with care and thoughtfully crafting items meant to bring calm and a sense of accomplishment to the wearer while enjoying each moment for what it is worth—not to impress others or to mimic the wardrobes of “influencers” who can afford to buy piles of clothing en masse.

If you take nothing else from this (lengthy) post, leave with this cautionary tale: I let flawed motivations take the joy of a longtime hobby of mine, and it took a debilitating illness for me to get it back. I also sacrificed time with friends and family to chase after goals that were not serving me, and I beat myself up in the process until my body forced me to slow down and get myself back to a place where I could consider what mattered most to me, and what I could realistically accomplish. 

To those of you who are also battling chronic illness, you’re not alone! Let’s be friends and get through this together. The same for those of you who aren’t dealing with constant pain, etc., because sharing in this community of amazing makers is far more important than the ideas of “productivity” that insist we must be creating something tangible every second of every day. Let’s all slow down and remember that love for fiber that has brought us all here!

 

Are you stopping by for the first time? Do you also have to schedule time for beloved hobbies around a chronic condition? In any case, introduce yourself and tell me about your blog below – I’d be happy to check it out! – or drop me a DM on Instagram. I look forward to chatting with you!

3 thoughts on “Reality Check: Fun with Fiber… and Fibro

  1. I’ve tried to schedule things I want to do and it only ended in disappointment. In order to have some sanity left, I just try to sneak it in between the “stuff of life”. I don’t get to do what I want often, but at least I don’t have that “scheduled time” taken from me by simply not scheduling the time. It does light a fire under me to organize and get things done and out of the way so I can have some time for me. Just like blogging…I would like to post more. I know many schedule and do a post every week. I wish I could. I love connecting with other bloggers and reading their posts and writing posts of my own, but life really does have a way of taking over. It’s okay. I know there will be times it slows and that is when I fit “me” in. I’m happy your heart is good! I find mediation, a simple mantra, and lots of one person dance party throughout the day helps me stay sane! 🙂 I hope this finds you well and you are having a fabulous day! Koko 🙂

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    1. I couldn’t agree more with all of the above! That self-care time is sacred—we’ve gotta do all we can to squeeze that in first and foremost. Meditation is a beautiful thing, plus yoga for me, though I don’t do my stretching as often as I’d like. Oh, and I find myself engaged in all kinds of solo dance parties! I at least get a solid head bop jam session in there when I’m feeling bad, haha. This has brightened my day, and I hope you’re having a great one, too. Take care, new friend!

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      1. I squeeze in stretch time while watching t.v. or just before a shower or while I watch my dogs outside. Dance parties happen even during washing dishes! I try and sneak in those mini exercise sessions throughout my day. I find that it’s easier on my body than getting in that 1-2 hour session at one time. I’ve not been kind to my body in past years. Worked too hard. Now the mini sessions i’ve found to really work and keep my body, spirit and mind lifted! Oh and find moments to smile for no darn good reason. Hope the sun is shining wherever you are! 🙂

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