babewithamobilityaid disabledandcute ehlersdanlossyndrome spoonie chronicillness disabled chronicallyill chronicfatiguesyndrome chronicpain fibromyalgia spoonielife wheelchair invisibleillness wheelchairlife zebrastrong butyoudontlooksick chronicallyfabulous disability disabledlife dysautonomia pots potsie spoonieproblems chronicillnesswarrior cpunk cripplepunk fibrowarrior hypermobilitysyndrome dollykei
∙ Ad ∙ Introducing, a truly wonderful clothing brand: @kintsugi_clothing, pioneers of inclusive fashion. Not only are their clothes gorgeous (this may be my dream cape!), they truly believe in universal design and both represent disabled people in their work and make pieces that can be worn by as many people as possible, regardless of ability. They’ve cut out fiddly fastenings and itchy labels and thought about true functionality, making sure their clothes work in a seated position.
Kintsugi is a Japanese art and philosophy that sees broken pottery repaired with gold lacquer. It reminds us that our scars are what make us truly unique, strong and beautiful.
My elegant Rosa May Cape is named after a Suffragette and designed to look good whether standing or seated as it’s longer in the back so can be tucked underneath yourself in a wheelchair. I have a big struggle getting into a coat in the days after I’ve dislocated my shoulder (which happens every few months!) so here is the perfect stay-warm solution.
@cloudfoz is wearing their Pin-Up Girl Tee, a style I absolutely love: this Rosie the Riveter is rocking an excellent headband, tattoos and a prosthetic arm.
Which of these two best fits your style? .
: @ferrisandsloane
#kintsugi #kintsugi_clothing #ootd #1950s #vintageclothing #modernpinup #pinup #vintage #retro #pinupgirl #vintagestyle #deaf #hearingaids #lookoftheday #ootdsocialclub #chronicallyfabulous #spoonie #invisibledisability #vintagedoll #fblogger #vintagelover #alltheprettythings #vintageglamdolls #babewithamobilityaid #lookafteryourself #sharethelove
COMPLACENCY & LONG-TERM MANAGEMENT OF CHRONIC ILLNESS⠀⠀
⠀⠀
my collab with @thisthingtheycallrecovery⠀⠀
⠀⠀
I initially had a different thing written for this image, but after posting about my flare in PoTS symptoms & my struggle to manage to them as the weather gets warmer, I'm going to slightly shift this to talking about fluctuations in my ability to manage conditions.⠀⠀
⠀⠀
I've been living with EDS for as long as I can remember, & I'm about 5 years into my PoTS going from an annoying niggle making me think I was just weird, to a full-blown condition in its own right.⠀⠀
⠀⠀
I'm really lucky that a lot of my PoTS symptoms are more manageable now, but I think with having a condition for a long time & symptoms not being as bad as they've been in the past, a level of complacency sets in. I see this with things like REALLY making sure I drink enough water in the day, keeping on top of my salt intake, doing my stretches, and doing the 'self-care' things that I know help my mental health.⠀⠀
⠀⠀
Part of the problem, I think, is that I had a number of years where I wasn't able to work at all, and now that I'm working part-time in a job that I love but struggle with, running my Instagram (I don't think y'all realise how much time goes into this!), and living with someone (which is the best thing but does use up more energy day-to-day!), I simply have less time and energy to focus on my health stuff. When I'm exhausted or my energy NEEDS to go somewhere else, I can neglect the simple things. Which is a slippery slope.⠀⠀
⠀⠀
Ultimately, the sheer amount of stuff we have to do every day for our bodies is a full-time job. It can be exhausting and boring and sometimes we just want to live our lives and not think about it (or we don't always have the time/energy to). It's partly why I never consistently tracked symptoms unless a medical professional told me to - it can be too much of a focus (disclaimer blah blah if it helps you that's great blah etc).⠀⠀
⠀⠀
But this change in weather is a remind that I don't have the luxury of complacency. As wanky as it sounds, in order to 'live my best life' these things have to come first. Or I'll not be able to do anything full stop.
For today’s Disability awareness week post I wanna talk about mobility /accessible aids and how they can make life easier. There‘s a lot of stigma and shame attached to using aids for those with invisible disabilities. I want to talk about my personal experiences today. It’s been a real struggle for me to accept the use of two of my mobility aids. Especially my mobility chair. My fear that people may think “Why is she using that, she can walk? I’ve seen her walk!”. I use my mobility chair in situations when a lot of walking or standing is involved. It helps me preserve my energy, and keeps my pain levels from sky rocketing to unbearable levels. It took me a long time to come to terms with using my mobility chair. When I do, I notice a huge difference in my ability to get things done and go places I normally wouldn’t be able to go. For example, I’m really excited to take a trip to Hopewell Rocks Park this summer. They have built an accessible path/ramp that goes ALL the way down to the water. I have never been able to go all the way down to the water before. But with the use of my chair and the newly built accessible path, i will!
I also use an accessible parking placard. This helps me to park closer when running errands and going to appointments. Helping me to perserve energy and control pain levels, making it possible for me to achieve those tasks. It also means I can swing my car door all the way open, helping me swing my feet out from my pedal extensions to exit the car. These two mobility aids make life more accessible for me. I’m working daily on the stigma and all my personal feelings surrounding it. Talking about it empowers me. So my message today is, if you see someone using a mobility aid, please be kind and don’t judge. They are working really hard to make life more accessible for themselves.
Images by @natashalipman @thisthingtheycallrecovery @hystericsblog
Move aside insecurities, it’s time for some real talk! Scrolling through social media it’s easy to assume that everyone is a little more confident, put together, or doing things a little bit better than you. Being a disabled 20 something girl with multiple conditions, health aids, surgery scars, stretch marks, a service dog, and much more can easily be a cause of insecurity. 2 years ago when I had my first port placed, I made it my mission to always keep it covered. What would other people think when they saw it? I was acutely aware of how my port, Medical devices, stretch marks, medical mask, and service dog made me look different. The truth is that everyone has insecurities in the way that they look or in who they are, but what makes us different is also what makes us so special. Fast forward to today and I have gotten to a place where I am so excited to celebrate my differences and answer others questions about them. All of my scars, stretch marks, and devices, are the outward sign of how hard my body and I have fought to be here today! It’s easy to take those insecurities and feel like you are not enough, but I am telling from the other side of the fence that you are so uniquely strong and beautifully you. I hope that more brands will follow the genuinely fantastic example @aerie has set with #aeriereal , so that we can continue to celebrate all of our differences and represent everyone! P.S. thank you for putting pockets in your leggings, they allow me to finally not have to hold my diaphragm pacemaker! The future is accessible!
Love, Cienna xx
Also if someone is parked in a disabled space and can walk with no aid please know that disabilities are also present in outwardly seemingly healthy bodies. Someone who’s upright at the time you see them can be disabled too - Neve Xx
••••••••••••••••••••••••••••••••••••••••••••••••
#MillionsMissing #ChronicPain #Spoonie #ButYouDontLookSick #BabeWithAMobilityAid #MyalgicEncephalomyelitisAwareness #MyalgicEncephalomyelitis #ChronicIllnesswAwareness #ChronicIllness #MEAwareness
Does anyone else with FA/ chronic illness/ disability ever purposely take the more difficult route? I could’ve taken the ramp or my friend would’ve gladly carried my walker up, but my stubbornness and pride stood in the way ⠀
⠀
(I’m sure it was hard for my friend to keep from stepping in )⠀
⠀#curefa
Collecter les statistiques #BABEWITHAMOBILITYAID effectuez une recherche à l'obtention des statistiques (Aller à la sélection).