mywheelieweirdlife - Tumblr blog

[mywheelieweirdlife]

If you don't need a cane, but you get one to signal disability because sometimes you get faint and need to sit, or whatever, as a cane user for years, go ahead. Please, if it makes claiming accomodations easier for you, even if you don't need it to walk, I don't care. This is your permission if you needed it.

Can I suggest that you can get a foldable one at CVS (they're great) so it's there when you need it? Shits fucked up, do what you need to do. Just beware there are assholes that won't care about the cane. But overall, it does make things easier and is easily purchased. Go for it.

[mywheelieweirdlife]

Just realized I haven’t shared these here yet. My hand strap design! Crafted for comfort and accessibility. No buckle = no pinching. For anyone and any style of play :-)

In comparison to the thigh strap there is obviously no base but the big difference is the ring is fixed and cannot be swapped out.

Sex should be accessible and that is how I go into designing strap ons. Currently there are 3 different options. Who knows, maybe I’ll make more….

[mywheelieweirdlife]

time of year i remind every cane user to get an ice pick so you dont fall and die

[mywheelieweirdlife]

My first wheelchair (hell even my second one) was awful. Too big by inches, I fucked my shoulders and wrists using it, it was heavier than probably necessary, barely fit in my parents car, had really meh tread, the push rims were metal and got scraped and I would cut my hands pushing and breaking and the breaks were heavy and I pinched myself in them so many times…

But you know what else it was? Pure freedom.

I got outside for the first time in months.

I went to mount Tambourine for the first time in years.

I finally could go to the bathroom without army crawling halfway across the house so I finally stopped having uti's.

I could shower. I had baths. I was so so free.

And it's nothing compared to Victory (my current chair) that I love and currently need to get new tires for because I went over glass on Saturday and finally officially murdered the already on their last legs tires)... but it was heaven.

And apparently I can only find photos from the bulky bitch of a wheelchair that was honestly my worst wheelchair (I still have it as my emergency backup actually) and the photos from when I got my new one... but I think they say plenty about what heaven a wheelchair can be.

i saw a writing advice post today that contained the sentence "getting a mobility aid is not a tragedy (unless it's a standard hospital wheelchair)"

and i get it. except when the hospital where i'm being treated assigned me a bulky, creaky, heavy standard chair of my own, it meant that i could go outside for the first time in weeks. it meant that my girlfriend could take me with her to pick up a soda. it meant that i could catch the first snowflakes of december on my coat and in my hair. after spending weeks in bed, even a chair i can barely push myself in, that bruises my knuckles on every doorway, that skids on carpet, and that has the world's hugest bulkiest handles, means freedom

[mywheelieweirdlife]

unfriendly reminder: this is a sex worker positive space. I will not tolerate the disrespect of sex workers here, and if you cant agree with that without a doubt then you're not welcome here.

[mywheelieweirdlife]

anyone who take word " nonverbal " to describe " little bit anxious " or " shut-in " need actually learn what like live as nonverbal .

can not call and control appointments for self , people can refuse to help . sometimes places just refuse to see .

people do not see as individual . people do not see as adult .

people do not listen when call for help . was in hospital and several times nurses ignore when call .

people talk about , in same room , like not even there . people assume what want , and then angry when answer no .

people mock how communicate . people laugh about AAC devices , cards , signs .

be happy not actually nonverbal in this world ! imagine how much anxiety gwydion have , and be happy not need share !

[mywheelieweirdlife]

also idk who needs to hear this but if you have a chronic illness or are dealing with chronic pain and/or unbearable symptoms please advocate 👏🏼 for 👏🏼 yourself 👏🏼 because the the sad reality is that no one else is gonna do that for you, but you deserve answers and you deserve proper treatment, you deserve to be taken seriously, and just know that your pain is valid

[mywheelieweirdlife]

Having a seizure when you dissociate is wild

Oh I've only been having a seizure for a few minutes...

No it's been three hours and you're going to feel dead tomorrow

[mywheelieweirdlife]

i've said it already probably but ppl who don't use mobility aids. especially doctors. stop trying to get rid of other ppls mobility aid. stop making that a priority. stop it with the "we gotta get you off that [mobility aid]" "you shouldn't need to be using a [mobility aid]" "let's focus on getting you to where you don't need [mobility aid]" "a [mobility aid]? but have you tried [herb]/[medicine]/ [exercise]/[facebook hack]/[pseudoscience]/[meditation] instead?" "but you look old/cringe/weak/sick". shut up

i don't know why so many of y'all think my end goal is to stop using the thing that helps me. and i KNOW most of y'all wear glasses or contacts but you're not running around trying to find the solution to make you stop needing them. so quit doing it with every other aid just because it reminds you of old or sick people.

especially bc most of y'all don't want to have that reaction when it comes to chronic pain, fatigue or discomfort. i say "my joints hurt" you say "oh well :/". i say "i feel lightheaded all the time" you say "just push through it". i say "my stomach is at least a 7/10 on the pain scale every day" you say "are you sure it's actually that bad? maybe you're exaggerating".

but as soon as i pull out a cane, or a shower chair, or a spinny chair for when im cooking in the kitchen, and i say "finally, im getting really good help!" . that's when you care. and all you want to do is take that away as soon as possible.

you just don't want to fucking see disabled ppl be disabled.

you don't want to have to look at it. you don't want to have to listen to it. you don't want to have to be reminded of it.

but too fucking bad !! i don't care !! im naming and decorating my canes !! they will be the loudest part of my outfits !! the same will go for a rollator if i'll still need one in the future !! i'm going to talk about how i'm disabled regardless of if anyone else can hear me !! because i am !! why should i hide just because YOU don't like it !! close your eyes !!!!!!

[mywheelieweirdlife]

If there’s one thing I feel I can unambiguously brag about, it’s that I’m great with patients who are in pain crises. I’m tenacious and stubborn about lowering 10/10 pain to something more manageable. I got a patient in “25 out of 10” pain at start of shift down to a 4 by midnight and it only took opioids, Tylenol, muscle relaxants, ice packs, warm blankets, fresh coffee, repositioning, an abdominal binder I scrounged up, a phone call to the surgeon to get lidocaine patches ordered, and some serious chit chatting with the patient while we waited for all that to kick in. We didn’t end up needing IV medication, we didn’t have to increase opioids, we didn’t need to add any medication that would potentially delay discharge, and the majority of what I did is all stuff she can also do at home so it’s a sustainable pain management plan. This is my absolute favorite thing with nursing, I love love love managing pain, I know I talk about it a lot but it’s the most satisfying thing in the world. I love watching someone emerge from a horrendous haze of pain until they feel like a person again. Also I’m scheduling this to post well after my shift is done so that I don’t jinx anything, also while I was writing this post I had to take a quick break for two hours half way through because someone started having a seizure. My job is wild. I used to be a barista.

[mywheelieweirdlife]

Oh it's been almost a decade since my original symptoms that should have gotten me to a neurologist showed up and I'm still mad about it so yeah, I have feelings and opinions and some advice; so I'm absolutely taking this opportunity to vocalise them.

I have a handful of disorders linked to CPTSD and despite finally having full control of them for the first time in my life, they still get blamed for a lot of my symptoms. Which to me is hilarious because all of my therapists over the last few years have agreed it's not that.

Insomnia can play a part in my flares, but that tends to be chronic pain not so much mental illness.

The only part of FND I agree with (and I was diagnosed with it by Alex Lehn, who I do believe has the best intentions when it comes to the condition and the study of it and one of the points made was that whatever causes it, they probably just haven't got the technology right for it yet or don't know how to use what they have to find the cause, especially because it's probably a few things combined) is that there's something wrong with the way the brain communicates that isn't necessarily visible in the form of physical damage and it's lighting up how it should so there's something else in the neurological processes that is causing it to go wrong.

The real point is; they have no clue what it is.

So they just have to control whatever variables they think they can.

And when anything physical or medical is a toss up and no one wants to accidentally make it worse but they have such limited theories and there's not enough funding to keep studying it…

We just get left behind.

Personally I think mine is probably related to hypermobility and damage to my body from some injuries and potentially an adverse reaction to the tens machine when I was doing a course in beauty therapy.

Because that thing is linked to some of my early dramatic episodes.

On top of several other things that could have caused it.

But no one knows.

There's been discussions in community pages about if maybe the high link with autism and cptsd has to do with the pruning stage of synapses and that extra activity in the brain changes the bodies ability to process information and thus leads to abnormal development of neurological responses to certain pathways, if maybe the reason surgeries and injuries and other traumatic events have a similar effect is linked to that as well because of how it can potentially rewire how the brain responds to certain stimuli and that's why it's so incredibly random... etc.

My personal biggest concern with the medical model of treatment is that it neglects the fact that regardless of recovery rates and severity; patients need quality care and quality of life.

And doctors are really good at forgetting that, especially those who went into it with a 'fix everything' mentality.

If you're advocating for yourself with FND, I honestly would recommend saying 'I know there are limited options and understanding behind this disorder and that really there's only three outcomes and I can only control what I can; my concern is quality of life and maintaining as much as possible and I want to know my options for that and what support each potential route can offer.'

(The three outcomes are you get worse, you get better or you stay pretty much the same. And even better tends to come with relapses)

They're likely going to recommend physical therapy, a nutritionist, a mental health specialist and maybe something else if you're lucky and they're on top of it.

Ask what they can refer you to or recommend that's publicly funded and do it.

Because FND comes with so many other stupid complications that it's worth it just to get the knowledge and prevent something else developing on top of it.

Get the mobility aids if you need them, do the physical therapy because muscle loss will make the nerve pain worse and it's a bitch to gain back.

I developed gastrointestinal issues from lack of movement and dietary issues on top of a major vitamin D deficiency (and iron).

Staying on top of mental health does limit the flares, but let's be honest, you probably knew you had that first and you probably have it under control as much as you can because it sucks enough just to have a mental health flare. Losing control of your body probably triggers your mental health more than your mental health triggers your body (it does for me anyway) and it just is what it is.

Honestly, like most medical conditions; once you hit a point, they just don't know.

So all you can do is choose how you want to live with it and what path you want to take.

You can fight like a bitch with whatever they've got and more (I actually became super obsessive with treatments used for developmental delays, stroke victims, other nerve damage conditions; because the theory about brain re-wiring is the closest thing they've got and they kinda do it in physical therapy; but I am an all or nothing kind of person and refused to lose my life to this because I am in the 'my body likes to throw new challenges every few months and I would be consistent worse if I didn't adapt well' camp).

You can just adapt and go.

Or if you ever want to just live with whatever tf it brings, I would not blame you because fighting something harder than medical professionals can sucks ass.

But if your legs are going or gone; get the wheelchair, get the rollator. You want both and you want to use both if you can because like I said, losing the muscle and the weight makes it so much harder.

Get whatever mobility aids make your life easier, change everything you can for simplicity because the less stress you put on your body and the more you just move with it instead of against it; the better your quality of life.

And that's what really matters, you deserve to live and that's where the spoonie community comes in because they have better advice than any doctor could give because none of us are willing to just lay down and die when there's still enough joy and spite and hope to survive.

Just got diagnosed with FND and ngl it sounds like a bunch of gaslighting bullshit to not actually find whats going on with your patient. So what i cant walk bc of shits and giggles? The more research i do on FND and how it came to be the more I realise its fucking evil.

If anyone else has been diagnosed with FND, help?? I cant walk and doctors think its my schizophrenia and stress.

[mywheelieweirdlife]

Hi, so I also have FND and I use my wheelchair part time, I also have a rollator and a cane.

So here's the advice I can offer for fighting for one and potential options to give you support if the wheelchair is just a losing battle until you can move out.

Firstly; asking specifically what it is they're concerned about with making it worse. Normally it's muscle mass loss in your legs and damage to your shoulder joints. These and other common injuries for wheelchair users are things that you do actually want to think about because they are kinda right in having those extra injuries and changes can change how your FND presents and make it harder.

For me I was crawling across the floor army style because I couldn't control my legs and had lost so much weight from being bed-bound (I had also become heavily vitamin D deficient on top of other things from being in a dark room so long) that we had to have the initial basic wheelchair. From there for my safety and independence as I regained strength and needed to get out and into the world; I got my better quality wheelchairs and now use them on my bad days, or when I have a lot going on and have the extra support to get around.

It helps a lot. Do actually consider one when you move out if you're still struggling, but really look into your options and look at your situation and needs to pick your best possible options for your safety and avoiding unnecessary injuries.

For my everyday outside of the house tho; the rollator and cane both give me better access, allow me to continue following physical therapy advice with support and my rollator is seated so it gives me a break when my tremors or dizziness gets to a point where I need a break (and technically I'm not meant to be pushed while sitting on it bc it's not that style, but I have been known to do it occasionally).

The rollators with seats and baskets honestly give so much independence and take the pressure off having to full on focus to keep your body balanced, I use my cane for when I get it worse in one side, I've dislocated a hip and/or want stair access, but the rollator is more supportive than the cane and provides the best protection from falling or tripping over from tremors, getting fatigued really quickly and is also sometimes a great way to be a little visible but not majorly visible; most younger people using a rollator in non-spoonie understandings are recovering from an injury and retraining their body (because they associate it with hip replacements and car injuries) so they also notice but don't treat the leg tremors as weird and move out of the way more often than with say a cane or wheelchair because you're visible and at the right height to look them directly in the eye.

Also FB marketplace. Take your own measurements, compare them to actual mobility aid measurements online, and look at your options. List your favourites and their specifics, especially for the sizes that are closest and best to you. And then start searching mobility aids on fb marketplace and check semi-regularly. I got an amazing $500+ rollator for insanely cheap that way in perfect condition because a woman who was basically my height and weight had recovered from an injury and was selling it cheap for someone else in need. I've got my eyes on some beach wheels that should fit at least one of my two wheelchairs for when I have money for them.

That and sites like gumtree/craigslist/other second hand sites and groups, they're the best for them. Church groups will also source them for you if they can, but they tend to expect things in return so it's not a route I go.

#wheelchairusers I want some advice on my situation because I feel like I need a mobility aid but I keep getting denied it because “it will make your FND worse” or “it’s for people who can’t actually walk” I feel like I would use it part time but that option is basically nonexistent. I think I might want to get one once I move out but I hate having to struggle to walk when I feel extremely dizzy, nauseous, fatigued and when there’s tremors in my legs. I feel so tired of pushing for one because I’ve been given the same answer and I’m just tired atp. Feel free to give me advice or really anything. 👍🏽

[mywheelieweirdlife]

This is a scream into the void that I would love to give the Australian Government right now for a thousand reasons that I'm not mentioning...

But I had a terrifying episode about a month ago where it looked like I had a stroke.

I went and did the testing and haven't been back to my GP.

Why? Because the water bill came on top of other expenses and I lost my medical funds and no longer could afford to spend $75+ to see my gp.

I could barely afford the $12 for my meds.

Oh and you know what else is super fun?

They're about to up the cost to see my gp again.

Australia wide, it's now going up to over $100 to see your gp.

(And they wonder why the ER is flooded with 'non-emergency' cases.)

But I am literally going to have to search my ass off for a cheaper and closer gp or hilariously, switch entirely over to the private clinic that's cheaper but further away and realistically gives me better care tbh.

But it's exhausting. It's exhausting looking at my budget every month going 'fuck I overspent on food again, but if I didn't buy these very specific things I would be a fuckton sicker' and questioning what's worth it.

I end up spending at least $102 every time I have a general appointment and spending $80-90 for my private ones. Including meds.

Like, at this point, it going up another $30 when the cost of living is rising so fast we can't keep up as is and I am not making income yet and am terrified that I won't make enough fast enough anyway when it does start coming in because I am dreadful at sales and it's a job that I fuvking hate but is a good portion of my job…

I'm just exhausted and bordering on mental health crisis just from financial stress alone. It's so hard and just so stressful and shit.

Also, fuck the liberal party, the Labour Party needs to pull their shit together, and shout out to the greens for actually doing something politically when Dutton is being a racist ableist pig and Bill Shorten is going down a eugenics route.

Honestly, these old white abled bodied privileged white assholes in parliament are making me lose my shit more and more every day and I would like to remind everyone that calling your local members and being a voice that is loud and stubborn in both public and private makes a world of difference and we have to fight together.

[mywheelieweirdlife]

I wanted to go to bed comfortably and be a happy sleepy thing.

But nope; something is wrong and my body chose violence of the cruelest kind and now I'm here researching ibs and gastrointestinal issues and looking for how tf I even start working out what my new trigger is because I hate this.

[mywheelieweirdlife]

Chronic illness problems: is it gastric issues from connective tissue problems or is it stomach ulcers as a side effect of medications?

Don't know, I could make a coffee and see if that helps but that's scary because if it doesn't that's extra pain, some dehydration and also right now coffee is an autistic sensory nightmare.

But I am in pain, I want to do something because if I don't, we're going to have bigger issues; like being a really shit housemate because my flare is kicking my ass so hard.

[mywheelieweirdlife]

Ugly Laws. Cripple coming from the word creepy. Freak shows. Fear of clowns. Bearded ladies with PCOS & intersex variations. Contortionists with EDS. Little people. “Missing links” people with Microcephaly. “Snake man” people with limb differences. Lack of welfare programs. Disability rights. All of these things are connected.

[mywheelieweirdlife]

Me: literally in a wheelchair

Me: has written some of the most circulated wheelchair posts on Tumblr

Some fuckin’ rando on Tumblr: you’re just sad because you’re not crippled enough to be CripplePunk