mywheelieweirdlife

[mywheelieweirdlife]

E: *looking at my CGM tracking results* 'Wow, you've managed to keep this really consistently in the green.'

Me: 'Yeah, I can't afford blood sugar chaos while at work. I have been doing this in the unhealthiest way possible tho.'

E: 'Oh god, what have you done.'

Me: 'I learnt really quickly what drinks make my blood sugar peak and roughly how long, so I have just been drinking my chaos coffee and occasionally snacks. I also learnt that I spike and crash super fucking fast from cordial.'

E: 'You're an absolute nightmare and I need you to know that your peaks are still under a non-diabetic's peak blood glucose levels after a normal meal. You are allowed to and supposed to have higher blood glucose levels than that after meal times. It's when it stays that high for prolonged periods that you have problems. Please stop fucking up your pancreas more with this method.'

Me: 'Look, I am what I am... also, yeah no, I have full intentions on learning how to balance it with real foods just not what I'm at work and teaching all day.'

E: 'Thank fuck.'

Me: 'But if I end up in the T1 diabetic gang, you have full permission to say 'I told you so.'. I will have earned it.'

[mywheelieweirdlife]

Reblog this to ease the back pain of the person you reblogged it from

[mywheelieweirdlife]

Just random stuff I find annoying

[mywheelieweirdlife]

sorry for letting my disability disable me it WILL happen again

[mywheelieweirdlife]

[mywheelieweirdlife]

For years my family has gone nuts over my episodes of selective mutism and the fact that I don't talk/can't talk when I'm anxious and overwhelmed and just beyond overstimulated.

And I am realising that the urge I've had most of my life to learn sign language and just not really talk again outside of my safe spaces is incredibly real.

Like it's never going away.

And honestly, if after the contract I'm currently doing is over, I think I will do that.

I'm going to learn sign and not talk where I don't have to.

Which yeah, is a privilege in a lot of ways and I will acknowledge that. That for me this can be a choice I make.

But also, I am in pain every day from forcing myself to speak when realistically I am fighting my entire brain to because all I want is nonverbal communication.

When I can't get the correct words and I suddenly have an even worse stutter and I have a migraine because speaking is so fucking hard.

And the only reason I learned to force myself to speak through these moments where it's physically painful and practically impossible to do so... is because I experienced abuse for my silence and using alternative communication.

Which didn't actually solve the problem because part of the problem was that I felt extremely unsafe and hurt.

And sometimes I feel like I'm ruining my relationships because while my housemate and I will talk over each other and banter special interests....

With my partner I feel a different kind of safe and secure and I just crash into them.

They make me feel safe in a way where I don't have to speak.

But also I am still anxious to infodump where things aren't shared interests or even enough of an interest to feel heard and seen.

I just want to accept this part of myself and feel safe choosing alternative communication methods.

[mywheelieweirdlife]

SAY IT WITH ME: MEDICAL GASLIGHTING IS MALPRACTICE

[mywheelieweirdlife]

What if I just want to see physically disabled characters as tops and Doms, huh. What if I want to see us being allowed to be comfortable in our bodies, take authority, and be sexy. What if I want to see myself in a sexy physically disabled top and/or Dom. What if I want people to acknowledge that we have so much love to give and not just receive. What then.

[mywheelieweirdlife]

destigmatize stds and the people who have them.

normalize talking about stds (both in terms of awareness, prevention and treatment) without shaming people who have them.

stop framing catching an std as a matter of immorality rather than simply a medical condition that can be passed on from one person to the next like any other.

stop implying or outright stating that someone having an std makes them “dirty” or worth less as a person.

stop shaming people who have stds rather than having compassion for them and trying to figure out how to help them.

end the stigma against stds – shame and silence only hurts people, it helps absolutely no one.

[mywheelieweirdlife]

Hello, I am alive.

I haven't used this blog, or tbh most of my blogs, in a while. Particularly since getting my current job because when you're disabled and teaching, you regularly have no spoons.

But I saw this tiktok: https://vt.tiktok.com/ZSj6DAMkH/

And what it brought up for me was hella interesting in terms of disability advocacy and relying on (more) abled bodied friends.

I have one friend I trust with my wheelchair when I'm in it.

It's not the friend I live with. In fact I am incredibly stubborn and will put myself in pain and danger at times with a 'No, I've got it' to avoid him pushing my wheelchair.

And it turns out; Sunshine Coasts Aquarium is not independently wheelchair accessible and those ramps were way to steep to be safely navigated without help. (Despite the website saying it's accessible. It was not. SeaWorld is more independently accessible tbh)

And I only had one friend I was willing to let help out of the three who were there I could technically ask. (I realised afterwards I probably could have asked my cousin more, but I didn't at the time)

That friend had essentially paired off with my cousin and was not with me most of the trip.

I was also in my Karma wheelchair not my normal one bc my normal chair has tire problems.

*photo below bc it won't let me type under it*

It's a heavy wheelchair that is not easy to push from within it and fucked up my hands by the end of the day.

I didn't have walking spoons thanks to pain in the morning, but I was physically fucked by the end of the day in this.

And part of that is; I struggle to ask for help but also, when the only friend I can fully trust to ask for it is the friend who worked in disability services and ran wheelchairs around the airport for years as a job.... because that's the only person who won't cause me more pain or almost knock me out of my chair bc they don't understand cut curbs.... (My day started with almost falling out of my chair bc someone else didn't understand cut curbs). It's not a shock that I don't use my aids when I should (like at work) bc it's just too fucking hard.

I need my wheelchair at work, but I can't get it there. I literally can't get to work in it. Buses magically 'Don't see me', ubers and taxi's cancel, unless my coworker is picking me up (and I don't want to ask that of her if I don't have to), I'm not able to take my wheelchair to work so I take my cane and rollator.

And to an extent; that is a privilege that comes with being ambulatory.

But it also means I burn out so fucking hard because I'm so often in pain and I don't admit as often as I should the amount walking fucking hurts.

I stopped telling people that it still feels like lightening and glass when I walk bc most people don't care if I'm doing it all the time and they see it as dramatic… meanwhile I'm here like 'I feel it through my entire spine sometimes but I just ignore it now until it's time to take meds for the other kinds of pains and pray I get some extra relief.'

When you're disabled, sometimes 'I live with higher chronic pain' becomes part of the job description just so you have a job.

Meanwhile I'm working on teaching teens to 'Not do that bc it'll fuck up your body and brain and we will advocate for you to not have to do that if you need'. (I work with neurodivergent youth in employment services in my day job now, hence my lack of online presence for the last while)

Knowing fully well I'm a hypocrite who's burning out bc of chronic pain 99% of the time.

I don't have a lot of disability supports anymore.

I traded pain reduction for being further from toxic family and a hope of having a job history that isn't entirely self employment in sex work or sex worker adjacent categories that I don't put on my resume anyway.

But if I created anything educating truely on the hidden sides of my disability?

I would probably die inside a little acknowledging how much work it is to maintain living like this… while also having to actually confront how much help I don't have despite having lost friendships over how much work it feels like.

And a lot of it for people is the mental toll.

Because internalised ableism is a bitch to everyone. And I don't like how the way I'm looked at changes when I'm honest about how bad things are; because depending how the way I'm looked at changes tells me wether or not I'm about to lose someone.

I'm fully aware that despite knowing I don't need to at all, I still avoid telling my partner things about my disability and it's daily impacts on me because more than knowing they'd worry… and despite knowing no fucks would actually be given and the way they look at me wouldn't change bc they're one of the only people I fully trust wouldn't be weirded out by the full impact of FND on my life bc they've read some of my tumblr things about it before, he knows more than most tbh… I am terrified of that anxious feeling that is entirely trauma of 'Will I become too much after this one'.

I no longer ask things of my abled bodied friends.

I can actually pinpoint the exact interactions I stopped asking as much and I think my actual final straw was after my previous relationship ended and my ex (who is still one of my best friends) started dating someone who is also chronically ill but differently… and hearing the comments made by his family and friends about the 'Relief he was dating someone he didn't have to take care of'.

And he tried to shield me from a lot of the comments, but shit still makes its way back to me and fucked me up a little.

It's weird knowing the two reactions from abled bodied friends would be a mix of 'why didn't you tell me?' and 'I don't understand what you want, you seen fine.' if I ever opened up about how bad it is.

I actually miss living with my cousin bc it was the only place I didn't have to lie about the pain I was in and would get the help in the ways I needed it most without fighting for it.

And tbh; I don't really know if I have a point other than it's fucking hard and the people in my life who aren't disabled have actually made it terrifying to tell even my closest also chronically ill friends how bad it actually is.

Because it got easier to pretend I'm not struggling in pain than admit that I am and ask for help and feel unwanted/rejected.

And abled bodied discomfort is infuriating when it makes you feel so alone and impacts your relationships because they're uncomfortable.

[mywheelieweirdlife]

I'm just over 6 months seizure free and I've been cleared to finally at 25, get my learners.

So I was 16 when the first episodes started and honestly, after so long, I just assumed that I would probably never get a license.

So the 'Yes, you're cleared to drive' is amazing and has made me cry already... but it's not just a car.

I can use machinery now.

I can use forklifts, I can use professional coffee machines, I can use anything as long as it's accessible in the other ways I need.

It's so much freedom and I am honestly... overwhelmed.

For the last several years I have made every precaution around my seizures and passing out episodes and to think about building a career it had to be something I could maybe do at my worst.

I never thought I would be able to legally hold a drill in a professional setting again.

I have never been so happy to think of using tools.

I can potentially work in theatre again.

I can do anything technically because I don't have legal risks on my mind constantly.

I'm free.

And honestly, it's a bit much to consider what I can do with the new perimeters because I had never expected the seizures to go first.

It's like the wheelchair; I assumed that and the seizures would be permanent and I am pleasantly shocked they aren't my biggest barriers anymore.

Fucking confused tho. Because damn now life is going to be incredibly different.

[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 !