illonwheels

[illonwheels]

The night before last night I woke up in whimpering, sobbing agony with my right hip, knee, and ankle. I sleep on my right side with my left knee drawn up, a pillow between my legs, then my right leg slightly bent. I can't sleep on my back for risk of pressure sores, or on my left side because of my shoulder, or my front because I just can't.

My right hip still really hurts at what feels like a bone deep level, with radiating pain down the outside, worsened by any twisting motion.

Not what I need

[illonwheels]

i did the lamp thing just now. why?

Let me ask you something: when you smashed that lamp, how many times did you think “this is a waste of my fucking time?”

The reason I said to actually go out and smash the lamp was because that way you can experience the utter pointlessness of it. You had to waste your time destroying something you liked. You destroyed something you had put time and effort into making and then after it all you had to clean that shit up. It seems dumb and pointless specifically because it is dumb and pointless.

Every time you let someone you’ve cut out of your life poison you, you’re wasting your time. You’re destroying your own happiness over pointless bullshit and memories.

The reason I said to actually go out and get a lamp and to make it perfect, rather than to imagine it all, is because if you’ve actually invested your time in something, you usually don’t want to break it, but when it comes to our emotional well being- there are many of us who are wiling to smash ourselves to pieces over and over without giving it a thought. But if you can give yourself a physical experience to link your emotions to, you can move past unhealthy feelings in a much better way when fixating on something pointless.

The first time I did this I got cheated on and I had someone suggest that I get a bunch of $5 lamps and to decorate them and put them around my room to represent the brightness in my life. So I did that, except then every time I looked at a lamp I got pissed off, so one day I took one out to my backyard and I smashed it to bits. Immediately, I realized I had just wasted my time, and I was going to waste a bunch more time cleaning it up, and that the entire thing was a waste of time. And so I realized that it was exactly like fixating on this person. I was never going to see them again, and yet I couldn’t get the anger out, and it was pointless. So every time I thought of them, I smashed another lamp, and I wasted my time for a week and a half before I got so tired of picking up the pieces of things I had invested so much of myself in I literally stopped caring.

Now, for those of you who are skeptical, for those of you who aren’t going through the same things as the original anon, how fucking stupid did all of that seem? How absolutely pointless did it all feel to you? Now thing about it this way: how many times do you look at someone destroying themselves over someone toxic and just think about how pointless it is? All of this, the emotions the lamps the whole fucking thing, it all seems pointless and dumb when you’re looking in from the outside. But that’s literally the point.

Sometimes you have to do something just as pointless to realize how much you’ve been wasting your time.

[illonwheels]

disabled person: i am happy

abled person: excuse me, but i think you should be suffering. please start suffering. you being happy is bad. only suffering.

disabled person: i am upset

abled person: please do not complain. be cheerful. you should be grateful for everything. only smiles

[illonwheels]

Amazing, thank you so much. Reblogging for reference. May well message you with questions in the future. I think i will probably increase my dose as planned and if i i have a severe increase in drowsiness will look into it. I am on other medication that makes me very groggy - fentanyl amongst others and could really do with more energy, especially as fatigue is a major part of my disability.

THIS POST IS REALLY LONG AND ABOUT BACLOFEN

Read More

[illonwheels]

The two things I'm most proud of doing and that make me happiest to remember are a) flying an aeroplane and b) leading the bass chorus line in Mozart's Requiem. Neither of these are things I can do again, or even attempt to recreate, thanks to illness progression. It taints their memory into painful rather than beautiful.

[illonwheels]

Chronic Illness Rant

I am tired of this disease taking everything away from me. I just want my carefree life back. I miss being able to make spur of the moment plans without a second thought. I miss not having  to analyze every decision I make and the consequences that will come along with it. I miss the old me

[illonwheels]

-Aspergers4Life

Autism discourse is dominated by despair. Children and teens are bullied. Adults are unemployed. Bloggers insult political opponents with our label. Schools begrudge us an education. Many who claim to help us shout over us. We are called changelings, inferior replacements for…

[illonwheels]

Just from a different perspective though like. .. answering "why are you in a wheelchair?" isn't something everyone is going to want to or feel comfortable answering so as a parent try to get a sense of whether the person is willing to be approached like that or not - try to catch their eye or judge if they're looking at your kid or if they're looking away. You can always answer that yourself with something like "because they can't walk very much or at all" or similar if the person looks like they don't want to be approached. I'd normally try to be polite to a child but if I was approached like that when I was ill or exhausted I wouldn't feel best pleased with people asking questions about how my body functions and my medical conditions just because they were curious, when answering could take a lot of energy and thinking about that question can be quite updating.

I have a question! My kid's not at the age to ask questions yet, but if you were to hear a little kid within earshot ask why someone was in a wheelchair, what would you want the parents to say back? My own disability isn't visible so I'm not sure how well at first they'd understand other people's disabilities that were visible. The question's wide open to your followers, too!

i hear little kids say that all the time. i usually try to make eye contact with the parent and smile to let them know like, hey it’s ok, i’m not scary. i guess i’d like to hear a parent say, “well maybe we should ask them nicely and see if they’ll tell us” i definitely don’t want a parent to tell the kid to hush or that they’re being rude, bc i don’t think they are at all. kids are curious, and it’s gonna be better to learn directly from the disabled person than a parent who probably has no idea what your disability is. 

if i were an able bodied parent, i’d say ^^ that, and then go up to the person and just be like, “excuse me, we were just wondering if we could ask why you’re in a wheelchair?”

like, my niece and nephew kinda have a one up on other kids cuz they grew up around the wheelchair and have a basic understanding of my disability. so they could care less if you’re disabled or not. as long as you’re nice and maybe can show my nephew some karate moves they’ll totally love you. so i think your kid might also have a one up, even if your disability isn’t visible, they still have an idea of it, ya know? it’s not something completely foreign to them. and it’s not foreign to you either.

idk hopefully that answered your question!

[illonwheels]

"Working-class people care more about their friends, families and communities – they’re just ­fundamentally nicer… Feminists have long since pointed out that those on the bottom of any unequal social arrangement tend to think about, and therefore care about, those on top more than those on top think about, or care about, them. Women everywhere tend to think and know more about men’s lives than men do about women, just as black people know more about white people’s, employees about employers’, and the poor about the rich.

And humans being the empathetic creatures that they are, knowledge leads to compassion. The rich and powerful, meanwhile, can remain oblivious and uncaring, because they can afford to. Numerous psychological studies have recently confirmed this. Those born to working-class families invariably score far better at tests of gauging others’ feelings than scions of the rich, or professional classes. In a way it’s hardly surprising. After all, this is what being “powerful” is largely about: not having to pay a lot of attention to what those around one are thinking and feeling. The powerful employ others to do that for them.

And who do they employ? Mainly children of the working classes.”

— Caring too much. That’s the curse of the working classes | The Guardian | (Photo Credit: Matt Kenyon)

[illonwheels]

This story hit me like a ton of bricks. If I lost my care then this is what would happen to me. There's such a thin line between safety and death.

A paralyzed teen covered in bedsores was found dead in a filthy Indianapolis home — days after a visiting Department of Child Services worker gave her stamp of approval.

we’ve lost another sister from the community.

remember her, wear her heart on your name, remember how we as physically disabled people  are so preyed upon, and punished for things like need diapers and catheters - and disregarded.

remember linda kelley.

[illonwheels]

I don't think my carer quite understands that if he doesn't come in i don't get lunch. It's a shit situation for both of us as when he's ill this means i can't get fed but when I'm 90% sure that this is a hangover and he's punishing me for changing his hours it's even worse. And why did i change his hours? Because he said he had a new job that would mean he couldn't do all his shifts. He then lost that job due to drug use, but by that time I'd sorted a replacement for some of his hours, meaning basically that he's had his hours cut and is punishing me for that by not coming in on shifts he knows i don't have cover for. Urgh

[illonwheels]

why do we never ever talk about disabled youth who take their lives? Or even, why do we never talk about disabled youth who have been murdered by their goverment/parents/guardians/doctors because their lives were deemed with no quality? Better yet, why dont we...

[illonwheels]

I'm tired and ill and I'm feeling overwhelmed with feeling that I can't go on like this, that the price living takes from my body is too high, that I can't continue to bear being ill. Even when I have something beautiful illness taints it, and every expenditure of energy costs too much. I have no friends in this town, nobody I can call. My boyfriend is involved in something that will decide his next year and I don't want to interfere. I'm not going to kill myself. This isn't a suicide threat. This is just an acknowledgement that right now the scale had tipped. It may tip back, I won't do anything rash. However much I want to

[illonwheels]

I'm ill and exhausted. Yes yes, as always, but more ill and exhausted than usual. My carer cleans my room on Tuesdays so I clear out for a couple of hours. I decided to bring my book, notebook and pen (diary writing), my tablet (blog post writing), get a coffee, and have a nice couple of hours. I get here and have no book, notebook but no pen, no tablet, no wallet, and I checked the post en route and my benefit renewal papers arrived so I now need to do those too. And I have no pen. I hate the brain impact of being ill. It really really sucks. I'm so slow and I used to be so so sharp and clever and now thinking feels like juggling jelly

[illonwheels]

Thank you so much. I'll look into ways of getting one made - there might be a society at uni for people who like making things even.

[illonwheels]

Yeah for me it's usually lower body, back and head. I hate back and head most because i can't distance myself from them but hands are most inconvenient. I'll use my electric blanket (any excuse) to warm them repeatedly. Can't stand massage. I find one finger on screen easiest. They were still for a 2.5 hour flight after a week of overusing them and that as the last straw i think.

Carer did lev exercises with me which has lowered pain slightly and off to sleep now i hope! !

I overdid it in the past week I found myself hallucinating with pain this evening. I overused my manual and my hands are so stiff and sore I can’t write or type except on my phone with one thumb. This is Not Normal Autonomic system stuff is a lot worse than usual

[illonwheels]

I overdid it in the past week I found myself hallucinating with pain this evening. I overused my manual and my hands are so stiff and sore I can't write or type except on my phone with one thumb. This is Not Normal Autonomic system stuff is a lot worse than usual