orthostat

anonymous asked:

are you comfortable sharing how youre disabled/mobility impaired? its ok if youre not, i was just wondering because physical disability is very varied and affects different things for different people, and if i could offer insight for my own disabilities if they were different enough from yours/others. i hope this message makes sense!

i have scoliosis and plica syndrome. i dont currently use any mobility devices but i’m planning on getting a cane w my next paycheck to correct my lean/posture when i walk! i also have orthostatic hypotension.

i cannot walk more than 25 minutes on an average day w/o very bad pain; good days that can go up to 45 if we’re walking at a normal pace. on hot, humid, cold, or rainy (or before rain) days that gets cut down to like 15. i can’t walk uphill for more than like 5 minutes w/o needing to stop and sit/lay down, and the hills have to be pretty flat. also any time i walk (but especially on hot or cold days), my legs become painfully numb as well, which makes walking harder. i also cannot bend down to pick stuff up w/o getting lightheaded/almost blacking out.

i would love input from others who are more severely mobility impaired than i am!

-Mod Finn

6

Having Ehlers Danlos Syndrome sometimes feels about the equivalent of being composed of jello and wet spaghetti. Nothing stays where its supposed to. Literally every single cell in the body is floppy, so fingers are definitely an issue for many of us. I can almost guarantee that for the majority of us, writing is not only slow and painful but nearly impossible at times. FIne motor skills? What even are those? An EDSer surely doesn’t have any of those. Even typing which is far easier than writing, is painful and daunting at times. But last year I joined the population of shiny zebras by getting fitted for a set of Silver Rings Splints and they are beyond magical.

For those of you who have not heard of The Silver Ring Splint Company, they are a company that custom makes finger splints that look like elegant pieces of jewelry. Don’t believe me? Well I can’t even tell you how many compliments I’ve received for them. Nobody even suspects that they might possibly be medical. But more importantly, they work amazing! I still have hand pain and finger dislocations when performing fine motor skills and writing is definitely not something I look forward to but I have saved myself thousands of painful dislocations, I can open doors easier, type faster, write longer and hold objects in my hands without looking like an alien from a sic-fi movie. With the rings on my fingers actually look like fingers rather than tentacles!

The company is also family owned and the people are so sweet and helpful!

If you are having trouble with hand pain, clumsiness and dislocations please check out this amazing company!

http://www.silverringsplint.com

No one ever teaches you how to mourn your health. You just realize one day that it’s gone, and you are not the same as you were before. Most days, it’s all right, but then something happens: you can’t go to dinner with your family because you’re nauseous, you can’t go hiking because fatigue and pain. You can’t you can’t you can’t, and then it hits you: you are irreversibly changed.

shoutout to people who spend tons of time on their phones because that’s all they can physically and mentally handle on most days.

don’t let anyone shame you for that. you’re doing the best you can.

I hate that post going round that’s like “haha you wouldn’t tell a disabled guy he’s using his crutch as a crutch” ecause that very thing literally happens to people that use mobility aids.

I can’t count how many time people (including physiotherapists who’re supposed to be understanding and help me) have said “you need to stop relying on your crutches” and the like.

I literally had a physiotherapist remove my crutches from under me without my consent and tell me to walk.

And it’s not even a rare thing.

Wheelchair users get told they need to stop relying on their wheelchairs, cane users get told they shouldn’t rely on their canes etc.

I’m just so bored with the depression-centric ableism rhetoric, erasing the ableism people with physical and visable disabilities experience

5

Hi Taylor!!! PLEASE If you have a minute, could you stop scrolling and read this?

I’ve never taken the time to stop and make a post telling you my “story” since you started following me. My name is Abby, & I’m 17 years old. Now my whole life I have never been the girl everyone wanted to be friends with, I was shy and awkward, a little overweight, I had lots of acne, and “squirrel teeth” as everyone so kindly named them. These things made me a target throughout elementary and middle school. I felt so alone most of the time, I just couldn’t understand what was so wrong with me, the reason I was treated the way I was. But you know some of the most vivid and happy memories I have from my childhood are of you Taylor.
The first picture was taken Christmas of 2006, The day I got your first album. I was 8 years old. As soon as I got it, I would not stop singing it. Everywhere I went I would bring my portable CD player (REMEMBER WHEN THOSE WERE A THING) and my Taylor Swift CD. I related to “The Outside” and “Tied Together With A Smile” the most. I found someone just like me, who wanted so badly to just fit in. The second picture was taken in 2010, I was 12 years old, Just starting middle school, trying so hard to be someone that somebody could love. I would dance around in my underwear to Fearless every morning getting ready for school. Then we have the 3rd picture taken in 2014, This was about 2 years after I got sick at one of my many stays at the hospital. My freshman year of high school started out like anyone’s, just wanting to make friends and fit in somewhere. That all changed when I was plagued with extreme body pains and dizzy spells. I went to doctor after doctor praying for answers as to why I could hardly walk most days. No one had any until my sophomore year, I was diagnosed with 2 rare illnesses. Ehlers-Danlos Syndrome, a rare genetic connective tissue disorder, and Postural Orthostatic Tachycardia Syndrome (POTS), an autonomics dysfunction disorder. There are no cures for either disease. The 4th picture was taken on July 19th, 2015, The day of my 1989 show in Chicago. The first time I was ever able to get tickets to see you in person. I am now a senior in high school, The 5th and final picture was on my first day of school this year. Since I got sick in 2012, life hasn’t been easy. But that’s okay. I think I’ve gotten so much more out of my illnesses than they’ve taken away from me. I mean sure, I walk with a cane now, one day I might be in a wheelchair but it doesn’t matter. My illnesses do not define me. I am more than they are. In finding out my illnesses could be life threatening, I learned to love life, every single second of it because we never know what the future holds. I learned to love myself and became completely unapologetic of who I was. I have come so far from the little girl who got Taylor Swift’s first album when she was 8 years old. And you have been there with me every single step of the way. We grew up together, you have been by my side and that’s something I cannot thank you enough for. You followed me back in January and I am still thankful for that every single day. You may not like my posts often, You may not even recognize my blog/who I am but I feel as if every time I am posting something I am speaking directly to you. Thank you for being apart of my life Taylor, for 9 years (and counting) now. “Everyday is like a battle, but every night with us is like a dream.” Every day is a fight against my own body to live how I want to live, but I have bigger dreams and refuse to let my health stop me. Thank you for providing me with not only music but a love and friendship that will stick with me throughout the rest of my life. I hope one day I will be able to meet you, to talk to you, and to tell you how much you mean to me in person one day. Until that time comes, I love you so much Taylor. Thank you. See you soon okay? Love always, Your Friend, Abby 💘