#edsiii

[queenlokibeth]

I wanna talk about something. Or not talk about it just mention it. Actually idk i just need to share this.

It often happens that awareness about certain topics... remains amongst the people who directly experience that topic. I'll elaborate. I'll use the disability example, but this can apply to gender, race, queer issues etc.

The term "invisible disability" started making its way around a while back, raising awareness about "hey there are people who don't LOOK disabled but they still are! Because that's a thing" which is GOOD. But who did this awareness reach? Who knows about this term? It's majorly just disabled people, abled people with disabled family members/friends, and maybe a handful of other really woke people.

But that's not really the people who NEED to be aware about invisible disabilities. A visibly disabled person doesn't NEED to know about this term because out of their own experiences they will already approach situations and other people from a lens of "disabilities exist, accessibility is an issue" for example. Abled people don't have those experiences so they just forget that disabilities exist if they're not seeing them. THEY need to know the term "invisible disability" and THEY need to be actively aware of this.

I don't have a solution for this and i don't have a well formed point besides the fact that frequently a lot of "let's raise awareness" content never makes it to the people who do need to see it, who need to be actively aware.

There are exceptions, such as BLM which did reach white people, but even such a massive movement has trouble fully educating white people about Black issues. Same with these trends of like "ladies show ways in which you protect yourself when going out" on like tik tok and stuff, because sure, SOME men are seeing it and realising the shit women face every day, but those videos often mostly reach only other women, and most men are still unaware of the extent of the challenges that we face.

I started thinking about this because I was working with some people on a project, and one of them mentioned that they received feedback from someone saying that our product should take accessibility into consideration, and the team was like "great point!" And the girl who mentioned this immediately went "well i don't know anyone with a disability but if you guys do we could talk to them? Maybe get like an accessibility consultant?" And i had to unmute myself and "come out" as (invisibly) disabled to all of them bc hey! Your accessibility consultant has already been in the team for 10 months! But it was awkward for everyone bc some probably thought that they offended me, others probably didn't take me seriously, and I was left to wonder if they're going to treat me differently now.

So, abled people of tumblr, just as we are all woke enough to, for example, not assume that someone is straight, please don't assume that there ISN'T a disabled person in the (virtual) room!

[theremightbecupcakespodcast]

Squinty Slouncypants is proud of her podcast, and getting her autumn on! 🍂 The one I chose is this one in asphalt: https://bit.ly/2B7Wqgk 🧁There’s something really special about wearing my own artwork. In April of 2017, I put on @cyndilauper’s “She’s So Unusual” and played that beloved album straight through while sketching in my bullet journal. When it finished, I had the logo for my podcast. And today, I wore it proudly to go buy apples for baking and to pet farm animals owned by proud FFA kids. Cane not pictured. :) I limped out of the car really quickly to get this picture at the pretty front office after we finished. #invisibleillness #invisibledisabilities #autumn #autumnvibes🍁 #beyourownheroine #theremightbecupcakes #ladypodsquad #society6 #art #bookpodcast #readingpodcast #horrorpodcast #spooniepodcast #zebrapodcast #homebound #chronicillness #chronicpain #carla #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong (at Saunders Brothers Farm Market) https://www.instagram.com/p/B3iGcL6Jz-N/?igshid=po2f0k3o9upq

[sick2fit4u]

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A post shared by Diane Vich MSN RN (@orgazmikhealing)

One of my secrets in my Holistic Health journey is Chiropractic Care. My chronic pain took time to reduce the inflammation, build musles, reduce tension and correct chronic misalignment issues. Dr. Quintana was an integral part of my receand healing. At the time in 2014 I had: #hiptear #sciatica #neuropathy #numbness #tingling #chronicpain #lowerbackpain #cervicalspine #thoracicspine #lumbarpain #plantarfasciitis #headache #neckpain #shoulderpain #armpain #legpain #fibromyalgia #edsiii #chronicfatigue Currently my flare up is headache and cervical neck pain which began this week. Before that my pain was well undercontrol since my last visit in March. Lack of excercise and stretching was bound to lead to a flare up. My goal is to get back into my fitness and yoga routine and follow up up for preventative treatments. https://www.instagram.com/p/BrY0lNMFrae/?utm_source=ig_tumblr_share&igshid=gdl6t11yitc2

[zebraiswhatiam]

Swimming!

So in the end, I did not go to swimming yesterday. The pool was to close at 7. I returned from my piano lesson (yes I take piano lessons again and love it!) at 5 and created myself a very VALID excuse regarding having to go grocery shopping so alas missed the closing time of the pool. Reality? I was a bit intimidated to go by myself and lets face it, first times are always scary. But, considering my resolution, and the fact that I cooked and baked and did pretty much everything I needed to do yesterday, today I had absolutely no reason not to go.

So, I wore my swim suit and made my way to the pool (first hurray!) today evening. I will admit that considering this was the first time I got to inspect closely what happened to my fitness levels, it was a little disappointing; but there was one thing that was told to us at the EDS lecture I went to that I mentioned at my last post. The physiotherapist woman said to us "It does not matter what fitness level you were at your best. What matters is that you accept this new beginning as your new starting point, set yourself goals and never look back." So I took her advice and I did just that. So here is my log from today:

Time spent in the pool: 18 minutes

Laps done: 5

Most difficult swimming technique: front stroke

Most painful technique: backstroke

As to why backstroke was painful: turns out my shoulder joint finds the resistance of the water rather difficult and I tend to hyperextend my elbows. So, next time I tried backstrokes, I only opened up my arms to about maximum 90 degrees and I concentrated on not hyperextending my elbows. It actually worked rather well and there was no pain as long as I did all that.

I have to say, apparently I had forgotten how one's body feels after exercise. That run down feeling was rather fulfilling. Yes, 18 minutes, 5 laps sound rather appalling for an outsider, but actually I am proud of it. This was my beginning and I will only strive for better. I have to say, I felt a teeny weeny bit proud of myself today :)

[meorfmsowhat-blog]

"Trying to figure out what its all about Cause we're one in the same Same joy, same pain And I hope that you're there when I need ya Cause maybe we need amnesia"

[queenlokibeth]

Let's talk about mobilty issues! As someone with a condition/rare illness/"thing" that can be considered an invisible disability, i tend to look fully abled. I have good days, meh days, bad days, horrible days. Sometimes it's longer than a day, like when i've gotten injured (however many times you think that has happened, triple it, at least) and i get stuck in a cast, crutches, wheelchair, whatever.

I get to see both worlds, so when i'm acting in a "functional" way, when it's a good day, and i mention the lack of a ramp somewhere, or "hey i dont think that this is very accesible" i get stares from abled people, not all bad, the majority probably don't mean any harm, but their confusion is in "why did you notice that", "how would you know", "oh i've never thought about that".

And that's the issue. It shouldn't have to take a person to go through the ordeal of not being able to navigate your every-day space for them to be a BIT more aware. When you are disabled, have an injury, have any sort of mobility issue, i'd say that 90% of the pain, annoyance and tediousness that you might experience has to do with how others treat you and how welcoming or unwelcoming places physically are to you, not the condition itself.

Why am i writing this? Because yesterday i was coming back into my building and through the glass i saw a guy fumbling with his crutches trying to pull the door open. There is one of those buttons thst you press to get the door open for wheelchairs on the inside... but it's broken. When i saw him i immediately pressed the button on the outside so that the door would open. I didn't open it myself on one hand so that I wouldn't be an obstacle as he walked out, but also because those doors are so heavy that they fuck up my shoulders whenever i try to open them manually. I stood to the side to give him space to move and practically rushed out and went "thankyouthankyouthankyou im so sorry" and i was like hey don't apologise take your time, don't worry.

He was thankful, embarrassed, and apologetic. Whenever i'm physically able to, i always go out of my way to help people struggling with their mobility devices and stuff (you know, in a respectful way, asking, and not grabbing their shit without permision). The reaction is always the same, and one that i have also had. People rush you, let doors slam in your face, make invasive comments, leave you behind if you're in a group, and if they try to "help", more often than not it's to satisfy their own curiosity.

When i help someone they probably think that i'm just some random abled person who knew what to do, and i don't mind that. When i have been in those situations i have NEVER received help from an abled person who wasn't my dad or a medical professional.

What i'm telling you all is that, if you are a physically abled person, please try to be actively mindful about these things. You don't have to do anything big, it quite literally is the just the little things. Don't be overbearing or condescending treating people with disabilities as if we were useless or weird (i WILL deck you) but that doesn't mean that you should basically pretend that we're on the same playing field.

If you see someone with crutches, offer to open the door. If you see someone in a wheelchair in a crowded place, try to clear up the path ahead by asking people to move aside for a bit. If you see someone with some sort of splint or brace on their hands trying grab or open something without success, politely offer to help. AND, that's for people you don't know. For your friends, be even more considerate. Don't make plans to go play footie or go on a rollercoaster when you know you friend can't do that.

Just, please be aware.

[theremightbecupcakespodcast]

A treat for myself. And a gorgeous book cover to boot. Sally is my soul sister. Her body doesn’t work—her joints fall apart!—but she puts herself back together and keeps going. #ehlersdanlos sister-in-arms, pun intended. #homebound #chronicillness #chronicpain #carla #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #books #amreading #bookstagram #beyourownheroine #horror #readersofinstagram #bookstagrammer #acolorstory #acolorstorygolden https://www.instagram.com/p/B2iFg4tABad/?igshid=11d59bx99ekes

[theremightbecupcakespodcast]

Worked on episode 53 of @theremightbecupcakes. Now it’s time to work on me—with more pumpkin spice. This time it’s a cold brew, my first, with more pumpkin spice sprinkled on top. I am a new cold brew coffee convert. First pumpkin spice latte and pumpkin cream muffin! It’s already autumn in my head. Ready to write and read post-physical-therapy. #psl #pumpkineverything #pumpkinspiceeverything #homebound #chronicillness #chronicpain #carla #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #autumn #pumpkin #starbuckslove #coffee #latte #therapyhomework 🍁 🎃 #amreading #psychology #cptsd #cptsdrecovery #cptsdwarrior (at Starbucks) https://www.instagram.com/p/B1w89IaARgW/?igshid=1a9xhovy2ufiz

[theremightbecupcakespodcast]

First pumpkin spice latte and pumpkin cream muffin! It’s already autumn in my head. Ready to write and read post-physical-therapy. #psl #pumpkineverything #pumpkinspiceeverything #homebound #chronicillness #chronicpain #carla #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #autumn #pumpkin 🍁 🎃 (at Starbucks) https://www.instagram.com/p/B1wLo9CgiWz/?igshid=9dd5ephmxq5b

[theremightbecupcakespodcast]

So, I am official. Here’s my prescription that my doctor has written for a wheelchair. Yet another before and after. I do use a wheelchair for going out—for unstable EDS joints and the risk of fainting from POTS, and therefore the high risk of fall from both—but it has been my choice. Now it is medically official. And that is both empowering, in that I am heard, understood, and supported, and a little sad. Another door closes between me and my old life. Oh well, chin up, and Stash investments open for nifty new ergonomic wheelchair. Hopefully insurance will play along with prescription. #milestones #wheelchairs #assistivedevice #assistivedevices #prescriptions #homebound #chronicillness #chronicpain #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #griefjourney (at Virginia) https://www.instagram.com/p/Bw5hV3Egqmf/?igshid=sdd1fj6dxmpa

[theremightbecupcakespodcast]

274/365 10.1.18 prepping for a hospital visit. Early morning colonoscopy tomorrow. Which means today’s pretty awful. Thank God for podcasts and books. Catching up on fascinating things helps distract from the cramping—and the things I want to eat. #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #CBC #cults #nxivm #podcasts #selfcare (at Virginia) https://www.instagram.com/p/BoZ17uPHoxR/?utm_source=ig_tumblr_share&igshid=owcw5mmq9zgp

[theremightbecupcakespodcast]

265/365 9.23.18 #first movie by myself in five years! I used to go to horror movies alone all the time (no one else in the family is as much of a fan as I) but with the pain, confusion, weakness, and now syncope (I do not want to fall out during a screening of Hell Train or some such), I haven’t been by myself since I was employed. (Don’t get too excited; Mom and Dad were in the Glass Half Full Alamo Bar, and Mom saw me to my seat. 😃) I was lucky enough to sit with one of the bartenders on his day off, Hunter (hi, Hunter! @alamocville hope I see you at the Halloween showing) and we talked horror in general and Argento in particular until the film started. If, like me, you’ve only seen #suspiria on VHS, you don’t understand the full impact of the sound as well as the soundtrack. Goblin’s music hissing “witch!” in surround sound was something to behold. The 4K restoration is amazing. #horror #horrormovies #suspiriamovie #suspiria1977 #darioargento #goblin #ballet #horrormovies #horrorclassic #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla (at Alamo Drafthouse Charlottesville) https://www.instagram.com/p/BoHbx4pAV1d/?utm_source=ig_tumblr_share&igshid=ya1jja4wmnd4

[theremightbecupcakespodcast]

9/365. Have had tremendous fatigue today—been asleep for most of it—so the day’s pic is my #cpap mask. I have obstructive sleep #apnea, likely due to #Ehlers-Danlos. EDS is a disorder of the body’s collagen—no structure or connecting tissue works quite right. Up side: I get to pretend to be “Major Tom”. Going back to sleep now. Again. Night-night. 💤 #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #apictureaday2018 #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla (at Virginia)

[theremightbecupcakespodcast]

2/365. Days like today are why I started this #apictureaday2018 project. So much pain and brain fog that everything becomes an extreme exercise in patience. I have put in the good fight, checked off a task or two, and now am putting the notebooks and planner aside for meds and a book—a good mystery that I hope distracts me from the agitation that the high levels of pain cause (fight or flight) The #owl is a Christmas gift; he’s actually an #assistivedevice, the cutest heating pad ever. Going to go put him in the microwave and try to read. Any name suggestions? #amreading A Door in the River, #hazelmicallef series no. 3, #ingerashwolfe #homebound #chronicillness #chronicpain #2018project #carla #apictureaday #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #apictureaday2018carla #bookseries (at Virginia)

[theremightbecupcakespodcast]

I’ve written thousands of words today in #watchingthedetectives my novel, at my favorite office. The baristas here always look after me and make sure I am safe and well-taken-care-of while I write. I have a Cheers. 🍻 #NORM #amwriting #acolorstory #acolorstoryhighroad #writingworksheets #cursiveismagic #charlottesville #virginia @starbucks #homebound #chronicillness #chronicpain #carla #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #youdontlooksick #dysautonomia #birthdayweek (at Starbucks) https://www.instagram.com/p/B81_iL8APps/?igshid=1j7igh14jixgh

[theremightbecupcakespodcast]

Recovering from the first stage of my #myocardialperfusion test yesterday with my pups. Ellie (l) and Arlo have been staying close and following me everywhere. It hit me hard and my babies know it. So today is my doggies and my cozy @americaneagle cardigan and my jammies. Working on the podcast as able and enjoying the snow flurries ❄️. The pharmaceutically-induced stress test was truly frightening—it felt like a #nearsyncope (POTS episode) mixed with a #panicattack. But the nurse and the technician were both really knowledgeable about POTS and saw me through it, and then had me quickly chug a mini soda so that caffeine could help dilate my blood vessels quickly. #haveacokeandasmile First and best soda in over five years. Then I sat with a crackers and juice snack in my wheelchair while the radioactive juices surged through me ☢️, and then they took their pictures. The device was like a very open, reclined MRI; I just had to lie with my arms extended and the heart sensors on for fifteen to twenty minutes while the imaging thingy circled over me. Mom and Dad bought me @bojangles1977 (Southern medicine) and brought me home, I took pain meds (test caused a major flare-up), and crashed. I woke up about 9pm for evening meds, then fell back asleep again until 10 am this morning. I think I slept 18 hours. And yes, according to my husband’s old Geiger counter, I was radioactive when I came home. ☢️ #homebound #chronicillness #chronicpain #beyourownheroine #EDS #EDSiii #hypermobility #fibro #fibromyalgia #POTS #spoonielife #spoonie #zebra #zebralife #spooniestrong #zebrastrong #dysautonomia #medicalprocedure #medicalimaging #cardiology #disabledlife #acolorstory #acolorstorycozy #acolorstoryinteriors #snowday #wintersweaters (at Amherst County, Virginia) https://www.instagram.com/p/B8AaEAfAM5K/?igshid=dejnjt2roxu6