The Perks Of Being A Wheelchair @crippleperks - Tumblr Blog

Hello beautiful humans! Life update, ADHD - Tell me your thoughts!!

You all know that I am a human who uses a wheelchair but what you might not know is that I am a human with ADHD.

That ADHD was managed with medication from when I was a kid (8-9) until I was 16 when I was discharged from youth services. I was so desperate to just be normal and I’d just left home. I didn’t understand.

“You mean... 🥺👉👈 I’m cured???!”

So I was left totally unmanaged for over a decade, and I struggled. I really struggled. I’ve done my absolute best, and I’m proud as hell of myself, but I’ve been revving the engine with the clutch not fully engaged for that entire time.

However!

This week I finally had my Adult ADHD intake assessment, my diagnosis was updated to “Adult ADHD” from “ADHD in childhood” and today, beautiful day, I started my medication.

My question to you, oh beautiful followers, is this: would you be interested in me posting about this journey on my instagram or here?

I think many things may change, I will surely be having many Thoughts™ and Revelations™ and it would be both a Delight and an Honour to share this journey with you if it would help or interest you in any way.

And being back in the habit of posting here, I will, of course be keeping up with general cripple discussions and physical disability stuff - including

ADHD and physical health

Mental energy vs. Physical disability

Motivation and managing health

A wheelchair & Covid Christmas/Channukah

POTS diagnosis process

So what exactly even is M.E?!

Dating?? On?? Wheels? But I’m Tired™

So that is what I hope to do! My Instagram handle is @crippleperks and I think I will be updating my story there a fair bit and perhaps writing blog posts here as well and hopefully now that I’m having some treatment I will be organised enough to keep all these plates in the air <3

Love you xx

#adhd #disability #me/cfs #fibromyalgia #pots #actually asd #life update #crippleperks #wheelchair user

I really dislike it when people come up to you thinking you’re someone else. It has a weird dynamic now.

It never really happened to me much before I used a wheelchair, and over the past 4 years it has happened not infrequently.

The first thing I dislike is that they can’t really know the person they’ve mistook you for that well. You might have the exact same wheelchair (unlikely) but it feels very much like they just see a chair and that’s it. That must be the Wheelchair Person™ that I “know”.

The next thing I dislike is that more often than not, rather than just going “oops” and walking away, the person will then try and start a conversation with you. It always gives off a vibe that the whole thing has been a way to start a conversation with “I know other people like you!”. They rarely react the way a person making a genuine mistake would (apologise and leave). Whether that’s because it’s not genuine or because they’re just genuinely awkward around wheelchair users is anyone’s guess.

When I wasn’t disabled this did happen to me once or twice but they were such non-events that I don’t really remember them. They almost always couldn’t see my face, maybe they tapped me on the shoulder in a crowd or their friend ducked away and I was standing where their friend had been. “Carrie! Can yo- oh sorry I thought you were my friend!”

Now that I use a chair, this happens to me on empty streets. Sometimes people even argue with me when I tell them I’m not their “friend”. One day I will tell you all the Bermondsey story.

#disabled #wheelchair #wheelchair user #disability #ableism #cripple #crippleperks #fibromyalgia #cfs/me

hey! i was wondering what your process was like getting diagnosed with ME/fibro. ive been chronically fatigued around 8 or so years, was diagnosed with dysautonomia but nothing further and most blood tests are negative. i have very low energy and go to PT to try and strengthen myself since my muscles are super weak. i also have had ongoing joint pain (elbows knees hips wrists) but no explanation. ive been to a lot of doctors but its so hard to get any answers. makes me feel like a hypochondriac

Your story sounds just like mine tbh. My doctor did thyroid tests, lots of bloods, I had monitoring for a while and after 9 months of investigations at one appointment she just said “yeah, M.E. , I guess?” and that went on my notes. Later the next year after developing chronic pain she did a pressure point check on me (not even supposed to be done anymore) and went “yeah, fibro, I guess?”. Both those went on my notes and I’ve had 0 interventions besides symptom management since. By symptom-management I mean that I get painkillers and vitamins, I have carers to help me functionally, I have a power wheelchair and I have been moved to an adapted home. So like. I’m helped to manage my symptoms, but I don’t really get anything to cure my conditions (there is no cure or treatment supposedly, besides rest, time and some specific supplements, maybe). After a long time deconditioning I started to get POTS symptoms and I’ve had appointments for that lined up but because of the current situation those have been pushed back some. They won’t give me physiotherapy because of the evidence base that exercise makes M.E. worse and the Hippocratic oath of First Do No Harm (which is a good thing, ultimately - too many M.E.patients are forced to do graded exercise that makes them sick)

In what ways does your disability limit you ? Obviously people uses wheelchairs for different reasons, you’re not paralysed are you ?

#bad anon #wheelchair #disability #wheelchair user

I recently had ankle surgery and i am non weight bearing so my papa brought me an eletric wheelchair (i could use a manual but we cant afford to rent one and we already had this) i am going to band camp soon and i feel pretty nervous about using the chair for it because i could use a munual should i use crutches or is this just internalized ablism

I hope you had a lovely time at band camp and were able to use whatever mobility aids helped you most and gave you the least anxiety! <3

Cripple Perk: depending on your set up, between your feet/on your footplates can be a handy shelf when you have a box to carry around. I've had everything from a new build a bear to a couple boxes of chips stored there 👍

I use this one a lot too! If I’m carrying anything long, big or heavy it rests there!

I just started using my wheelchair a few weeks ago due to POTS and nerve damage due to Wilson's disease... My arms are SO. SORE. ALL. THE. TIME. Any tips?

Honestly? I’m friends with an 75 year old woman who started using a wheelchair at 36 after a spinal injury and it’s her opinion that no one should ever self-propel in a manual wheelchair as their primary method of mobilising.

She speaks with regret at the many years she spent pushing herself manually, at her many rotator cuff injuries which now cause her chronic pain and at those of her friends who now suffer the same.

“Why did I do that to myself? Why? Back then we only had the two options, a huge powerchair or a manual chair. I couldn’t have got into my friends’ cars in a powerchair. The environment back then didn’t allow for any other way. For some it’s pride. The idea that we must constantly struggle in order to be valid. If we want to keep fit, we could lift weights, we could swim, could do exercises appropriate to our musculature. Independence? How is a powerchair user any less independent? Only in the eyes of people who primarily place value in physical prowess - ableists.”

She now advocates solely for power-assisted manual wheelchairs, so a high-quality, lightweight manual with a battery pack to push power through the wheels and joystick control*. Indoors on smooth floors you can self-propel but for any distance or outdoors, utilise the power function.

Lots of people want to continue self-propelling, and that’s a personal choice, but it’s definitely not the right choice for many people (our arms are not meant to move that way especially not repetitively). *It’s worth mentioning that she’s against e-motion wheels for this same reason - despite the additional power you get from the wheels, you are still setting yourself up for rotator cuff injuries.

I thought I’d answer this one from the perspective of my friend as I personally cannot self-propel and she has had 40 years of experience in the matter.

Saw your post about doctors who diagnose psychosomatic disorders before doing any tests being trash and I just wanted to thank you. My first ever neurologist asked me a few questions (like 5min top), saw I was autistic with gad(caused by the chronic pain) and concluded I was making it up without one test! Because of that I am constantly self doubting and untrusting of medical professionals, every once in awhile I need the reminder that he was wrong to do that so thanks (love your blog btw)

He was wrong! And you are awesome!

Hi, I got a holiday job working with disabled kids. I will be doing things like art projects with them and accompanying them on field trips. The kid I will be working with the most is a little girl in a wheelchair. Are there things I should know that wouldn't be obvious to someone like me, who isn't in a wheelchair? Thanks :)

There’s probably lots of things! I think you’ll probably become way more aware of access stuff - I find the biggest shock for people can be realising that we depend on drop kerbs, of which there sometimes aren’t any. Route planning becomes very important. I’d also say things like table height for arts and crafts is also something that lots of able bodied people don’t consider. Usually tables are set heights or they come with chairs designed to match them. In a wheelchair your chair doesn’t always match the table height so sometimes it’s easier to transfer out of your wheelchair and use a regular chair. People often assume you want to stay in your wheelchair and just hurry all the chairs “out of your way”.I’m aware that I’m answering this ask about a year too late - how did it go? I’m interested in what you actually learned from the experience and if any of the things I’ve suggested came up!

So, my girlfriend is paraplegic, and since we only started dating a few days ago (and im thrilled!) im sort of new to a lot of this. I'm noticing people come up to her a lot, move her chair around, are just generally creepy and don't give her boundaries, and it always ruins her mood. What can i do to help this, without accidentally overstepping any boundaries myself?

Hi anon! As a matter of coincidence I have just started seeing someone so this is a good question for me to answer.The only thing I can say is to talk to her and ask her what she’d like you to do. The fact that you’ve noticed this and want people to not treat her weird will probably mean a lot. Because of awful horrible lockdown I’ve not yet experienced ableism in front of my new date, but I’ve assured them that it’s gonna happen. I expect it’s a conversation we’ll have in future.

Okay, so I know lockdown has SUCKED but I think this has been the longest I’ve gone without ableism in public since becoming disabled. Mostly due to not being in public, and when I am, people having to keep 2 metres away from me. FINALLY safe from people rushing up to me and grabbing my wheelchair!!!!

#disabled #wheelchair #wheelchair user #coronavirus #lockdown

Yo we’re back I guess?