longlostdiaries - Tumblr blog

[longlostdiaries]

when you’re mostly fine while distracted but as soon as you try to rest w/o distractions the pain and exhaustion hit you like a truck 😐

[longlostdiaries]

[longlostdiaries]

most trans people who people like to call "non transitioning" actually do transition, but people don't want to acknowledge that not all transition is medical

changing your hair is transition

deciding to shave or grow your body hair is transition

doing something different with make up is transition

changing your new wardrobe is transition

changing your name is transition

changing your pronouns is transition

coming out to people is transition

even just accepting your own transness without telling anyone else is transition, as it changes how you see yourself

it's almost impossible to be trans and truly non transitioning, even if that transition might be non medical, non visible or entirely self contained

all kinds of transition are valid.

there are also things that aren't necessarily associated with transition that an individual may consider to be part of their transition, like working out to make their body look different, getting piercings and tattoos and so much more

there are so many ways of transitioning besides surgery and hormones

"non transitioning nonbinary/trans person" is just code for "i don't consider your transition to be real because it doesn't fully fit into what cis people expect"

"some parents would rather have a non transitioning trans child than one who does" like yeah no shit. a non transitioning trans child is a trans child who doesn't come out, doesn't change anything about themself. not their name, not their pronouns, not their hair or wardrobe. a non transitioning trans child is a trans child who never talks about being trans so their parents can pass them off as cis. a non transitioning trans child is a trans child that is in the closet. of course a lot of parents would rather have a trans child who stays in the closet so they don't have to deal with their transness. but you all mean "non transitioning" as in "not medically transitioning" and that's not true either. trans people get kicked out of their house for doing as little as changing their pronouns. and if you say you're doing literally anything as part of your transition/because you're trans, people will absolutely give you shit for it, while a cis person can do the same thing and it's no biggie. social transition is not accepted at all.

there are some weird trans people out there who will completely dismiss people's life saving transition steps as "non transitioning" because they don't fit cis ideas of transness, it's disgusting

when i say "transition" i'm always including medical transition and social transition, as well as anything else an individual may consider part of their transition that doesn't necessarily fit into the two boxes

also can we stop acting like social transition isn't also constantly under attack

[longlostdiaries]

[longlostdiaries]

something i find really frustrating is the way able-bodied people seem to struggle so much to understand that, when you're disabled, your abilities can fluctuate from day to day.

"but you could do that thing yesterday-" but today i can't. what my body can & can't do isn't a constant, reliable thing. i don't get to pick and choose when i do what. and i PROMISE this is just as frustrating to me as it is to you (if not more).

it also really bothers me that, rather than trying to understand and accept that my abilities change from day to day, the default assumption tends to be laziness. if i could do a task last week but can't do the same this week, it's because my body physically will not allow it, not because i'm being lazy and just don't want to do it.

before i became disabled, i never questioned whether i would be able to shop every week, or whether i could go on a daily walk, or whether i would be able to get out of bed in the morning. since having a disabled body, all i do is question whether my body will be able to handle the most basic tasks.

i plan ahead for things i know need to get done, and i often have to rest for days before things like a trip to the grocery store, or a doctor appointment. it's endlessly frustrating, not being able to know what i'll be able to do on a given day.

i just . really wish that able-bodied people would try to be more understanding and forgiving of disabled people when they're unable to do things. we're not being lazy. we're not doing this on purpose. we're just living our lives with bodies that can't always do what we want, when we want.

[longlostdiaries]

notes for my impostor syndrome:

• no, it's not painful to walk for abled-bodied people

• no, healthy people don't usually use every chance they get to lean against walls or sit down

• no, ableds don't dream about shower stool

• no, ableds don't celebrate days when they're not in pain. because usually they're not in pain

• no, ableds don't want to stop walking mid-way, lay down on the ground, curl up and cry and whine from pain

• no, ableds aren't exhausted by their own bodies 24/7

[longlostdiaries]

i feel like for abled people who don’t have to spend a huge portion of their waking life in bed, it’s really easy for them to imagine it as some sort of constant relaxing vacation from ‘real life’ or from effort and feeling and working or whatever else

when in reality it’s like. im so restless. im so tired of being in bed. it isn’t comfortable. i Hurt. im hurting all the time and if i could not be in bed without being in huge amounts of pain, i would!! i miss being able to do things!! laying in bed helps the most, but a lot of the time it feels like a trap, not a comfort. a lot of the time it hurts too much to be doing anything else

i miss when laying down was a choice i could make for relaxation, when napping was an indulgence and not a necessity, when i could spend time and energy being upright and it didn’t even feel like effort !!! i don’t want to do this. this isn’t something relaxing or fun the majority of the time. it’s painful & frustrating. i wish people understood that better :(

[longlostdiaries]

To those who also deal with chronic pain:

I want to remind you that it doesn’t matter how “minor” your pain seems. The reality you need to remember is that most people don’t live in pain on a regular basis. You’re allowed to be drained and bothered by your pain.

[longlostdiaries]

Please do not answer if you are not a physically disabled person who uses a mobility aid.

[longlostdiaries]

mannnnn until we all get okay with the idea of people needing other people to get them water/food/etc like. idk we’re just never gonna make it

[longlostdiaries]

The other day I told a friend of mine that I never forget to take my ADHD meds because I fucking love my ADHD meds. I'm in my late 30s, I didn't finally get a diagnosis and meds until less than two years ago, and they have changed my entire life.

And he raised his eyebrow at me. We'd been discussing addictive medications a few minutes before, like the Tramadol I finally got from the pain specialist to take once a week or so to give me a break from my chronic pain, so I reassured him that methylpenidate (Ritalin/Concerta) is not addictive (at least not in people with ADHD).

His response? To raise his eyebrow even harder and say "Well it sure SOUNDS like it's addictive!"

And I had to explain to this man - who works in a healthcare related job by the way - that just because medication makes you feel good and helps you, just because you look forward to taking it, that doesn't make it addictive or dangerous. And he wasn't convinced.

The simple fact that I was excited to take a daily pill that has literally changed my life, after decades of fighting to get that medication, made him think I shouldn't be taking it so often. That it must inherently be dangerous.

I'm not even in America, but I'm pretty sure this attitude began there and then spread over here to Europe. This Puritan idea of "if something feels good, you must beware of it. Pleasure is dangerous, it is sinful, it is addiction, it is evil."

I know too many people who subconsciously believe that pleasure = addictive = dangerous = bad. Joy is a slippery slope to hell.

So here is your reminder for today that you don't need to be afraid of feeling good. If something improves your life, use it. Even if it is addictive - learn what that addiction means, whether the addiction is inherently dangerous or not, and whether the benefits outweigh the drawbacks and risks.

My ADHD meds are, in fact, not addictive. But I will take them every day because they make my life orders of magnitude easier. I will enjoy them every time I take them.

My tramadol is addictive. I will still take it. I will keep it on a schedule to avoid becoming addicted, primarily because addiction in this case would mean reduced effectiveness. But I am not afraid of my painkillers. They are life changing.

Take your meds, everyone. Don't let anyone scare you away from doing something that improves your life.

[longlostdiaries]

Sometimes I think dealing with my pain is far, far easier than dealing with the doctors that treat my existence as something made to personally annoy them

[longlostdiaries]

personal observations made by a new cane user:

you do not need to be in constant pain to own a cane.

folding canes have a clasp or band to keep them folded. losing the band is a pain in the ass.

you will get dirty looks

it does not matter what age you are. you will get dirty looks.

you have to hold it in the opposite hand as the disabled leg. this is fortunate, as I am right handed, so i hold it in my left hand to support my right leg.

people will try to steal your cane from you.

when standing still, I hold it in my right hand unless i need to do something right handedly. this does not work as well as i thought it would.

being visibly physically disabled is difficult. having a mobility aid will help with pain and movement, but some people don't get them because visible disability is treated with disgust.

if someone meets you for the first time, and you don't have your cane, then they will like you more, but they will not believe you are actually disabled.

if someone meets you for the first time, and you have your cane, they will not treat you the same.

the majority of other cane and mobility aid users I have met are homeless. I live close to a big city.

People do not want to see you being disabled.

you will not hear of the benefits of using a cane from anyone who does not use a cane.

no one will prepare you for the world of being visibly physically disabled. however bad you think we have it is usually not from the disability at all. I can deal with pain and I can deal with an indisposed left hand.

the hardest part of being disabled is the fact that no one will care until you make them care.

the disabled seats on trains are a suggestion

the disabled seats on buses are a suggestion.

you will have a different experience with using a cane than I have had.

your hand will become tired. you are using it as a leg.

your cane is legally a part of your body. this will not stop some people.

you are not your disability. but it will affect you.

i love you

theres always an invisible someone who has it worse. that person will not be affected or offended by your use of a cane. take the damn ibuprofen. put the folded cane in your bag. ask your friends for help. gd knows they need help sometimes too.

you will have to learn that things will be impossible to you. you may not run as fast anymore. you may not become a skater, like you always wanted to be. you may be left behind when everyone else runs ahead.

you deserve better.

your cane handle gets dirty. wash it.

some days pain is worse. some days you will feel it the moment you wake up.

no one deserves pain. the human condition is not to suffer. we deserve better. we deserve to be loved and not tolerated. we deserve to be seen better than from the corners of eyes. we deserve to be heard better than an afterthought at a meeting.

be quick to care for yourself. I love you.

[longlostdiaries]

[longlostdiaries]

Physically disabled folks, tell me about your favorite disability aid(s)! Mobility aids, medication, strategies, apps, other disability aids, whatever helps you most/is your favorite.

[longlostdiaries]

idk who popularised the narrative "i don't let my disability stop me" but it needs to be stomped on, pulverised by a meat grinder and then thrown into the depths of the sea never to be seen again.

it is by far the most popular ableist narrative and i see it so much and immediately just think i'm a bad person for not being able to 'get over' my disability despite the fact it's an incurable, permanent and severely disabling disability.

stop stop stop stop pushing the mindset that people have to persevere despite their disabilities in order to be a worthy person

leave me alone and let me be disabled in peace