spoonie fashion

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    Young people and Mobility Aids

    Have to use my cane again. I feel extremely self-conscious right now, because I’m young and don’t “look sick” 😷 how do any of you spoonies 🥄 who use mobility aids cope? At least it’s got cute stickers on it ;) #MobilityAids #FunctionalNeurologicalDisorder #SpoonieFashion

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    What is your favourite grunge hit?

    I’m currently watching the series High School based on musical duo Tegan and Sara’s memoir, and the 90’s soundtrack is giving me major nostalgia… I now have Blister In The Sun by Violent Femmes stuck in my head—which will probably take several days of listening to it on repeat to get out, because my brain gets OCD like that!

    So far I’ve listened to old favourites like Smashing Pumpkins, Hole, Björk, The Pixies, Tori Amos, Greenday and I’m sure there are many more to come. It’s got me reminiscing about my sisters and I spending hours winding coloured cotton around our hair—why? And trying to dye my hair green with food colouring—also why—but more importantly I can confirm this only works if you’re Prince Andrew 😉

    And then there’s the clothes… the flannel, t-bar shoes, knee high socks, kilts, all the black eyeliner, floral dresses with ankle socks and of course DMs. I had a practical black pair but always secretly coveted a second pair in shiny oxblood. I did have a pair of custom made shocking purple bell bottoms, that would have other girls at clubs coming over to me to ask where I got them from, which made my nerdy ass feel smug for maybe all of 5 seconds.

    But back to the music 🎵

    After considering all the greats—of which there are many—I think I would have to narrow it down to Soundgarden’s Black Hole Sun because it was both a great video, and an enduring song. Army of Me by Björk because I love the backstory about it apparently being about her brother, and it still gets me wanting to move more than I should to this day.

    And for my final pick I would have to go with Today by Smashing Pumpkins with a special mention for Drown, which is a close second because I still love the dreamlike composition. What sets Today apart in my opinion, is that Billy Corgan wrote and composed the song to juxtapose the darkness of his suicidal thoughts, with the upbeat melody—creating two levels on which to enjoy the song, And conceptually I think it was an equally brilliant music video, with the band driving around in an ice cream truck—which quite literally puts the cherry on top for me 🤓

    Share your favourite 90s grunge picks in the comments, and feel free to partake in the nostalgia of what other strange things we did in the name of “fashun”!

    #Music #MightyMusic #justforfun #DistractMe #Fashion #SpoonieFashion #MightyTogether #CheckInWithMe #obsessivethoughts #thisistrying

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    Team Gryffindor!

    A selfie from my trip to the doctor yesterday wearing a vintage jumper that reminds me of the Gryffindor house crest, which is convenient seeing as that’s my house!

    I’m slowly growing accustomed to doing more waiting, and less pushing myself to do things that result in PEM. And since my body sort of screamed at me to do less, I find myself noticing the small things around me I used to take for granted with renewed appreciation.

    I also find myself caring a lot less….so whoever was sat next to me smoking in the car with black tinted windows so I couldn’t see them, got treated to me singing along to The Fray (Happiness), Amy Winehouse (You Sent Me Flying / Cherry), Sia (Breathe Me), Sarah M (Adia), Coldplay (We Never Change), and Lou Reed (Perfect Day).

    I stopped short of Wild is the Wind by Nina Simone, because I feel like it’s a late night song that requires me to be pretend drinking red wine, in a Margo Tenenbaum state of mind.

    Now that I’ve made things potentially awkward, let me know what your Hogwarts house is and what some of your favourite Sing-It-Out-Loud-DGAF soul songs are 💛

    #HarryPotter #Fashion #SpoonieFashion #Postexercisemalaise #ChronicFatigue #ChronicIllness #CardiovascularDisease #Music #MightyMusic

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    Socks Are The New Manolos

    Sex and the City’s Carrie Bradshaw may have spent much of her time running around New York City in her Choos and Manolo Blahniks, but she also wisely once said “Maybe the best any of us can do is not to quit, play the hand we’ve been given, and accessorize the outfit we got.”

    Taking these words of wisdom and applying them to my limited spoonie life: I’ve found that the best accessory to pyjamas and lounge wear, is socks.

    I have fun socks. Socks with cats and dogs on the toes with which serve as playful, friendly greetings to front door visitors. Cutesy socks, put the doorstep world at ease.

    Then there are my colour block socks that look just as good on their own or peaking out of a pair of high tops. Colour block socks need no explanation. They announce to the world with the same brazen hutzpah as Samantha Jones, “Hello. My name is fabulous.”

    I have sparkly socks too. To misquote Charlotte York—before she became a Goldenblatt—these socks say “I’m not dead. Let’s Disco!” Unfortunately these aren’t the most practical of socks, so I wheel these out only on special occasions such as Christmas and New Year’s Eve.

    Occasions that call for a little extra sock game.

    I have no idea how to wash them so I’m going to step into the confessional box and pretend you can’t see me when I say this: I simply rinse them in cold water and air dry them for a few days, before nestling them in my sock drawer next to a bar of soap in the hope that the fresh soapy anti-miasma will do it’s thing.

    As an aside: I’m happy to discover that there is an actual song called “You’re Dead. Let’s Disco!” which I am adding to my funeral playlist, because 1) I’m a control freak, 2) when you’ve been sick for over a decade, you tend to think about these things, and 3) I don’t trust my other half to get it right… some things never change, like my cynical Miranda Hobbes personality.

    But back to socks. I also own the gold standard, the Manolos of the sock world if you will; the pure cashmere sock.

    You know the kind. They adorn the feet of influencers lounging around their houses looking effortlessly chic clutching large glasses of red wine while daring to wear white jeans, while cute young offspring wander around wearing matching outfits. And there’s just enough mismatching design elements that you just know they and their interior decorators put many design hours into making it look like this too was effortlessly thrown together so that everything—chicly of course—oozes with just the right amount of enthusiasm “Look. I’m not that different from you. If you buy these things tagged in my post that have been gifted to me, you too can look as effortlessly cool and chic as I do.” Basically what former socialite Laney Berlin from the baby shower episode would be doing if she was on Instagram.

    Alas, like the mythic Mary Jane Manolos that Carrie found in the Vogue closet that were a size too small, I too discovered that washable cashmere socks are an urban sock myth. After ever so gently coaxing them into a lingerie wash bag—and putting them on a cold wash as instructed—they still emerged a size smaller, covered in a pox of pilled wool.

    The irony was not lost on me: my costly cashmere socks as with all my other expensive endeavours to improve my health—like supplements, infrared sauna blankets, treatments, and that one time I built a four cornered shrine dedicated to Manon, willing him to take my ailments and inner scars, had failed miserably. Okay, I may have made up the Manon part, but the rest is all true.

    Sadomasochistic that I am, I still have some cashmere socks lined up in my sock drawer like little ladies in waiting in anticipation of the day a spoonie royal like Lady Gaga, Sia, or Venus Williams should decide to pay me a visit, I will be suitably prepared.

    For as Carrie Bradshaw never said, but might have if she were chronically ill, “When your life is at a standstill your sock game benefits.”

    #SpoonieFashion #Spoonie #chronicallyill #Fashion #GravesDisease #Fibromyalgia #sjogrens #ChronicFatigue #ChronicFatigueSyndrome #bedbound #thisismetrying

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    How has chronic pain affected what you wear?

    So many things have surprised me about living with 24/7 chronic migraine pain, but one of the strangest tweaks I’ve had to make in my day-to-day life is in the type of clothing I wear.

    I’ve always loved fashion — not that I’m especially cool 😎 — but over the past five years or so I’ve had to sacrifice style for substance. I’ve shifted away from most things with sturdy seams, denim of any kind, favoring very soft fabrics and bigger fits.

    Even though the majority of my pain is of the brain variety, chronic illness makes my entire body sensitive. It often feels like my nerves are on fire so I have to dress as gently as possible.

    It’s a small tweak in the grand scheme of things, but just another thing chronic pain has made me sacrifice to accommodate it. Thanks so much for coming to this E! special on spoonie fashion. 🥄

    Have you had to make any adjustments in what you wear?

    #Migraine #ChronicPain #ChronicIllness #Disability #RareDisease #Fibromyalgia #mightywithmigraine #SpoonieFashion #Spoonie

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    Disability and Gender Expression

    Hey everyone I’m back! With that being said, what are your thoughts on balancing disability and gender expression? How do you accomadate your needs while expressing yourself in a way that feels right? What kinds of clothing, what changes do you make, etc? #ChronicIllness #SpoonieFashion #Spoonie #Disability #LGBTQ

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    I need an opinion on setting something up on Amazon

    First i dont intend to make money off of this...but I pretty much lived in thread bare yoga pants and a few shirts on my couch.

    I ended up gaining weight due to a medical condition and moved to a new climate.

    I cant make it to a store to shop & i searched online for someone that had compiled non medical clothes tgat were as comfy as PJs but actually looked like you werent wearing them.

    I ended up doing a bunch of shopping on Amazon, a mb d if it is worth the spoons (people are interested. I could compile everything i purchased on a (something) tgat i could post on support boards or people could pass a link around...something like Stylishly Sick and then the results of what i found worked.

    I wouldnt mind it looking like a store, but i dont untend to ma kn e money like affiliates do (you have to have a blog 500 followers & i dont have the spoons for it) but if people could benefit from my list (or whatever) then I can dig deep.

    So, is this something that you think the spoonie community and chronically ill could benefit from, or am i just buring spoons for no reason.

    All clothes are super comfortable and non polyesther & dont need special care instructions and most are under $25

    Thoughts? #Clothing #Shopping
    #SpoonieFashion

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    Fashionable clothes for badly bloated belly?

    I can no longer wear my regular jeans or any restrictive clothing near my stomach and I am so bummed out. Just another thing #Gastroparesis has taken away from me. I love fashion. I love clothes. I don’t want to wear leggings everywhere. I’m 2 1/2 years into my diagnosis and it still makes me cry every day seeing (and feeling) that bloat. It’s hard to move, sleep, get comfortable. I’ve started looking at maternity clothes even. Any suggestions of stylish, trendy, bloat friendly fashion? Going to tag some folks who
    I know deal with the bloat. #IBS #Endometriosis #SpoonieFashion #Spoonie

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    Made myself a #Spoonie bracelet

    I want to start making more pieces for other spoonies in my shop <3 #Pain #SpoonieFashion #warrior #handmade #ArtTherapy #Art theknottyratsnest.etsy.com

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    Describe your current fashion in two words.

    Picture this: We each get up in the morning and head to our closets. What will we wear today? 🤔 A dress? 👗 A suit? 👔 A uniform? 🦺 Given current world circumstances, possibly none of the above.

    Let’s make each other smile with how we’re dressing right now for our quick commutes to the kitchen, the bed and the backyard. All comfy wear is fair game and highly encouraged! 🩳🧦

    #MightyMinute #DistractMe #MentalHealth #ChronicIllness #RareDisease #Disability #Cancer #ChronicPain #Anxiety #Depression #MightyFashion #SpoonieFashion

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