mobile ed

“You’re too young to be so sick!”

“You’re too young to be using a mobility aid!”

“Why do you rest so much? You’re so young!”

Originally posted by georgetakei

[gif: Hades from Disney’s Hercules saying “I know! I know. I know. I got it. I get the concept” while his hair flares from blue to red]

[image description: a graphic featuring text laid over two boxes of different shades of blue.

the first box is smaller and contains two headings, “So your buddy’‘s disabled:” followed by “How Can I Help?” in quotation marks.

the second box is larger and contains a list of five subheadings and descriptions, which are as follows:

1. Pity parties are boring. I don’t need you to tell me how awful my life must be or how sorry you are that I have to deal with it. I don’t care. I’m doing exactly the same as everyone else - managing with what I’ve got.

2. Don’t assume I’m incapable. I can still open doors for myself and hold a conversation. Even with a crutch. Blind-blowing, I know. It’s frankly a little insulting how quickly people will rush to ‘help’ me when I’m using a mobility aide. If you’re not sure, then ask first! Or alternatively, wait for me to ask you.

3. Let me grab you on the stairs. Stairs fuckin’ suck and I may have to grab something very quickly in order to avoid collapsing. Sometimes that something may be you and I am always very grateful for your presence in this situation.

4. Meet in accessible spaces. If you choose to sit somewhere I can’t get to, i.e. upstairs, then I’m left with three options: a) I kick up a fuss and make you move, b) I get hurt by forcing myself to join you, or c) I sit on my own. None of these options are ideal for any of us but they could all be avoided if you’d sat somewhere else.

5. Listen to me. My condition and how I’m feeling with it changes from day to day, and what was fine yesterday might not be today. I will always try my best to communicate what I can and can’t manage; all you need to do is keep an open mind and listen to what I’m telling you.]


Not all of these points will apply to everyone with a disability, but certainly the 1st, 2nd and 5th should apply to almost everyone. I often find that nobody really knows what to do when they discover that I’m disabled, and I’m often asked “how can I help?” but never have much of an answer, so I finally thought I’d put together a masterlist for my friends to take a look at.

6

Shadow and I had a day of appointments Thursday. It’s official, I’ve been diagnosed wth postural orthostatic tachycardia syndrome. This syndrome is a form of dysautonomia which means my autonomic nervous system doesn’t regulate my blood flow, heart rate, blood pressure, and temperature properly. So I get really high heart rate spikes accompanied by pre syncope episodes caused by BP drops which put me at risk of falling or fainting (though I’ve only ever had two actual syncope episodes). I’ve been prescribed a medication to see if we can regulate my system better. I’m hopeful we can get things back on track.

I am however being referred to the University of Washington’s genetic medicine clinic to do testing for ehlers danlos syndrome a connective tissue disorder which would explain a lot of “random” childhood issues, and would explain the POTS, costocondritis, and GI issues that I have. I hope we can get that aspect figured out.

Friendly PSA

If you see someone in public with mobility aids (cane, crutches, walker, wheelchair, etc) or other medical stuff (braces, splints, tensor bandages, etc)…

Do NOT run up to them and exclaim “WHAT HAPPENED?!”

Because nothing happened. This is just what I am. And it’s really irritating and awkward to explain that all the time. I can’t even just say “I have EDS” because they won’t know what it is, and they’ll want an explanation, and then they’ll go “Wow! Must be nice to be so flexible!”

I just want to buy this cat food.

Made my mixtape cover (if I were to ever make a mixtape) today. Apart from it being possibly the best thing I have ever created ever, I am also using my cane in it? and I have posted it publicly without a care? I have gotten so used to using my mobility aid when I need it I have forgotten why I was so anxious about it in the first place. I am so so proud of where I am today. 

So...

I’ve been thinking about this for a little while…I have fibromyalgia, celiac disease, arthritis, EDS, possibly POTS, and almost all of my joints are hyper-mobile, and I have several very necessary tips to pass along in regards to being in a relationship with, coworker of, close friend of, or family member of someone with chronic illnesses.

- I’m. Tired. All. The. Freaking. Time. Please remember this.
- Regardless of what I tell you I’m always in pain of some kind.
- Please stop getting offended when I don’t want to go out in the freezing cold on smoke breaks with you, you have no idea how painful it is for me.
- Please don’t poke or playfully hit me because 9 times out of 10 you’re probably going to cause me ungodly amounts of pain.
- Please stop getting offended if I refuse food you’ve offered me, I promise I have a great reason for not eating it.
- Just because I fake having energy to make it through the day doesn’t mean I really do, you should probably help me out more with chores.
- If I tell you something hurts, believe me, instead of questioning me because you think “there’s no way that could hurt.”
- Don’t ever say to me “there’s no way that hurts the way you say it does.”
- Stop letting me carry heavy things, it makes my joints feel like they’re going to fall apart.
- Stop complaining about how long it takes me to shower and remember that it takes me longer because I constantly have to rest so I don’t faint from the hot water, bending over, and putting my arms above my head.
- Stop harassing me for walking slowly.
- Just because I can bend my joint that way doesn’t mean I should.
- I’m sorry my hyper mobile joints freak you out, but you need to remember it’s not something I can help in regards to them bending, cracking, and popping.
- If I ask for help, I honestly need it, please just help me.
- Stop telling me I’m just “too sensitive.”
- Don’t tell me fibromyalgia is a “fake disease.”
- Because it bears repeating, don’t touch me, unless I’ve already told you where and how it won’t hurt me.
- Sometimes my brain literally is a foggy mess, please be understanding if I seem to be having some cognitive issues.
- Don’t ever grab me.
- Don’t rub my skin, that hurts too sometimes.
- Don’t get mad at me if you do accidentally hurt me.
- If I ask to rest for a moment, whether it’s during sex, while walking around the mall, or while doing chores let me. I wouldn’t ask if I didn’t need to.

Feel free to add your own!