uglyspoon

[uglyspoon]

Disabled people, people with chronic illnesses, and anyone struggling with health in general will likely have been told to manage their stress. That stress is making their symptoms, or conditions, worse. That the best thing they can do is minimize stress.

This is, to put it plainly, steaming garbage.

It is true that stress damages our bodies, makes us less resilient, gets in the way of taking care of ourselves, and can trigger conditions to flare or outright cause them. It is true that less stress would be almost good for almost all of us.

Telling people this, when they are deeply distressed, does not make that stress go away. Underlying conditions cause stress. Being disabled is stressful. Managing your symptoms and treatments and coping skills are stressful. Those things stress causes, also cause stress.

You aren't making yourself or your condition worse by being stressed by it. Being upset about it. Being angry about it. It isn't your fault that you won't get better, that you are having trouble managing it all. Your feelings matter, and it matters that you feel them. Get mad, don't make lemonade, and do what you have to.

#actually disabled #ableism bites but so do you #stress is Complicated #q #telling someone in distress to be less stressed will just make them hate themselves or you or both #solves nothing and helps no one

[uglyspoon]

To anyone with a troubled immune system, if you have too much or too little or the right amount in all the wrong places.

I'm sorry that something that is supposed to protect you, isn't doing that. I'm sorry something that is supposed to help and to heal you is hurting you instead. You don't deserve this, and it's okay to be angry.

Stress is linked to autoimmune disorders, and more stress can make them worse. This is true. What is also true is that it isn't your fault that the stress is getting to be too much, and your anger at the situation, at your cells, at your immune symptom triggers, is not what is making you sick and you deserve to feel it.

Anger is stressful, but it's also important and okay to feel. It is better to feel anger than to hate yourself for it; it is also better simply to let yourself feel it when you need to regardless. No qualifications.

#immune disorders #autoimmune #immuno deficiency #immunocompromised #actually disabled #q

[uglyspoon]

It's okay your executive dysfunction keeps you from doing what you want to do. The ability to start something is important for any task, and when that part of your ability to think is impaired, it truly is hard to do anything.

Congratulations, then, on what you have done! You're reading or listening to this right now, and there were like a million steps to get here, and you accomplished all of them.

It probably doesn't feel like enough, and it probably isn't what you wanted to accomplish, but it still totally counts. You're here, you did that!

What's the first step for the next thing you want to do? Is it putting on clothes? Is it standing up? Is it calling a support person to help you find the next next step?

#executive dysfunction #actually disabled #cognitive issues #q #a bit Generic but Im getting back into the swing of things

[uglyspoon]

Hi!

Sorry for the impromptu hiatus, summer always hits me like a freight train and this June was no exception.

As always, if there's something you'd like to see a post about, or a topic discussed more practically and in-depth, let me know!

Stay as safe as you can, and indulge in a treat as you are able.

#not q #clerical #mod stuff #seriously though Im just a dude and dont know all of the topics there are! #so far Ive only talked about stuff that affects me and people I know! #would absolutely adore branching out

[uglyspoon]

Sorry I hit send before I was finished! I wanted to say that I love your blog and really, really am comforted by the fact that you are speaking out about aspects of disability that are deemed shameful. I am really having a tough time and the post about eating what you can really helped me. Thanks for being brave 💙

^~^ thank you! I'm drafting a post about it, but this June has been rough tm and I've just been able to get back to tumblr; seeing this in my inbox was really touching

#ask #Im super awkward and trying to find a good tone balance here and also have like -3 to figuring out the scope of social things so like. #tl dr Thank you #this was good to read

[uglyspoon]

Hey Anon! A lot of range of motion braces, like for when recovering from a break, can be pretty discretely worn under pants. You will see an outline for the hinges or other supports, but unless someone is looking for that sort of thing already, no one will notice.

I was extremely scrawny when I wore these braces [link] for over a year straight, so I thought everyone would be able to tell, but the only time anyone reacted was when I was wearing them over leggings instead of under my jeans. Or the TSA, but that's because of the scanning rather than anything visible to the naked eye.

Something even cheaper but less supportive that what @so-over-ableism suggested is using compression bandages for your knees and ankles, but it can be very hard to get the tension right for support without also limiting blood flow to your feet. Kinesiology tape can also work, but will wear out much faster than the compression wrapping and need to be reapplied.

(Tw: Ableism) Do you have any tips on what to use other then a cane? I'm in a very very ablest community and do noy wished to be hatecrimed, but at the same time just walking and working today caused me so much pain I feel like I could cry. Using Crutches was so helpful but I couldn't go out in public, even if it looked like I just broke a leg. I would get treated so disgustingly by total strangers. I'm scared to go through that again but I want to feel comfy.

could you wear braces under your pants? there are some knee braces that are skin tight and don’t support as much as bigger braces, but they’re better than nothing. i used them when i first had chronic pain and i had a lot of internalized ableism about using canes or visible braces. it may help.

also, just sit and lean against things as much as possible. obviously my best advice would be to use a cane, but if that’s not an option, i would say the best alternative would be braces. i’ll leave some pictures below to show what i mean.

#unsolicited advice #mobility aids #Im kind-of back had some Life Stuff #not q #still refilling that #but yeah nonnie theres ppenty of options! #thats my 2¢ without knowing more #good luck anon

[uglyspoon]

It is sad, when you try again at something you used to be able to do, and now cannot. You remember being able to do it, or be able to do it better, and it's a cold and painful feeling to accept that now you can't.

Whether it's from a loss of strength, loss of control, or loss of stamina, it hurts to see things we used to be able to do. Mourn, grieve, it's okay. It is true you need to find things in the moment, that you can do, that give you joy, but it is also okay to still feel and think about what you've lost.

#q #actually disabled #function loss #grief

[uglyspoon]

Our species secretes a lot of fluids, and we have constructed really complicated hang ups surrounding them. This one goes out for all of you who are a little too comfortable with blood, with pus, with wounds. Who forget that other people will be slightly disturbed if you walk around like a film extra, who will shy away or nervously ask if you need assistance when you're just trying to go through the grocery store.

To all of you who who haven't made your peace with it, who cover yourselves in bandaids and gauze because you'll never heal but at least you'll trade disgust for pity, and questions about what happened.

Sores and cuts and wounds and lesions are familiar to a lot of us, and inescapable. May your laundry come out clean, and may you clot well.

#actually disabled #q #blood #wound healing #a little dark

[uglyspoon]

To people who can't clean themselves on their own, or clean themselves well by themselves. I'm sorry every reminder for self care often includes things you straight up can't do; that a relaxing shower is not or may have never been something you can relate to.

Take every liberty you can in making washing something enjoyable, or to add highlights to the process so that whether you're bathing yourself or someone is helping you, there's something to look forward to. Plastic animals in soaps, a truly ridiculous looking sponge, a comfort food heating slowly in the oven to dive into afterwards.

Dignity and self confidence are hard to come by, and you deserve to maintain yours.

#q #actually didabled #activities of daily living #washing #hygeine #cripple self care

[uglyspoon]

Food is hard. From medical professionals to unqualified strangers to trusted familiar people, we've heard it all when it comes to diet and how that affects our health.

Some of us are sensitive to foods, maybe gluten or nuts or sugars or msg or whatever the current scary ingredient is. Most of the time, we're not, or it's not what that well meaning person said, and we try to cut it out, and it sucks. Especially when it's your doctor, especially when people say you're giving up and giving in for not bending over backwards for the newest food trend.

Stick to your guns, food is really hard, and no one's choices need to be limited, and for those who already are, you know what you need and what you can handle, and deserve to make every choice you can.

#q #food issues #actually disabled #ed

[uglyspoon]

It's okay that you can't remember things as well as you used to. It's okay that you're losing out on remembering details but can still see a general shape, it's okay that you can't recall the whole of something but a detail on the edge stands out, and it's okay that you remember remembering more than this.

Forgetting comes for us all, and it isn't fair yours comes so soon or so much. It isn't fair that that it's going to keep getting worse. Take your time to mourn, and to prepare for where you're going. I believe in you, this sucks, but you can do it.

#actually disabled #cripple punk #degenerative #memory issues #q #dementia #cognition issues

[uglyspoon]

There's lots of reasons it can be hard to use as-needed medication. You don't feel like you need it badly enough, you're on a different floor from the drug you need, you're almost out and don't want to waste a dose.

You should use it anyway! If you're thinking about it, and the relief could help you, use it! It isn't a waste, it's what it's for.

If being far away from what you need, or how it's applied, is a barrier, tall to your doctor or members of your community with the same challenge for ideas. You may be able to get more than one inhaler, or split a whole prescription into multiple bottles, or move from an injection to a gel. There are options out there, and you deserve to find one that works!

#actually disabled #q #working text for this one was 'use your rescue meds lol' #medication #coping skills #i legit have four rescue inhalers #just scattered around cause Im an idiot #if epinephrine auto injectors were cheaper I'd have a lot of them

[uglyspoon]

Sometimes the first thing to "go" in a flare up is our common sense, problem solving or critical thinking skills. That's okay!

You're not stupid for realizing four hours in that you're having an asthma attack and should take your rescue inhaler. When you're in too much pain to think of taking your as-needed pain medication or one of your coping strategies, it's okay, you were in too much pain to think of it.

This is a reminder, if you need it, to take a rescue medication. To take a moment and ask yourself, "am I in a bad mood because something is Wrong?", to ask if you're tired or slower than you want to be or can't think, because something is wrong. It takes a lot of energy to have to take care of ourselves the way we need to, and it takes even more when we forget or it sneaks up on us. It's okay if you can't always tell on your own when you need something.

#actually disabled #flare up #episodes #fatigue #q

[uglyspoon]

I'm sorry for how many different treatments you've had to try. Sometimes we are lucky, and the first thing we do works really well and has no or few down sides. Most of the time we aren't, and I'm sorry you've had to deal with that.

From waiting on results, to sticking out the three weeks needed for titrating a dosage or the chemical to build up enough in your body just to see if a med works, despite side effects that make you want to quit. When you find something that works well enough, but not perfectly, and doesn't manage what you need it to, or when it does and the other effects are bearable but unpleasant. When somewhere down the line from doctor to insurance to pharmacist it goes wrong and you wind up with the wrong treatment, or a treatment for the wrong thing. When a treatment that was right, goes on too long.

I'm sorry. That sucks. May you find something better, or work out a good method for handling what you're left with.

#q #medication #actually disabled #mismanagement

[uglyspoon]

Loretta Claiborne, “Let’s Talk About Intellectual Disabilities”, TEDx Midwest.

I’m always incredibly gratified to see people with developmental disabilities  in settings that are generally full of intellectual snobbery.  Because the rest of the time, I’m wondering “Where are we in their world?”  I once went to a self-advocacy conference and two days later I went to MIT.  At the self-advocacy conference I was totally welcome and felt a belonging I rarely feel anywhere.  At MIT I felt like I didn’t belong, like I was trespassing and would be unveiled in an instant as one of those people who doesn’t belong on a university campus — something I’d been told many times when I tried and failed to go to university.  I did my best, while I was there, to open it up for people with developmental and intellectual disabilities, but I don’t know how much good I did.  I got angry more times than I can count, for reasons I couldn’t even name.  And I get angry the same way when I watch TED talks, it’s the same bunch of people there as were at MIT, the same mentality.  

At MIT it didn’t matter how much they reassured me that I belonged there.  I knew I really didn’t.  I knew it every time anyone told me my “real IQ” couldn’t be as low as it was last time it’d been measured.  I knew it every time someone made it clear I was only interesting insofar as I had talents to make up for being disabled.  But I did my best to make it so I belonged there, to change the environment so that more people could follow me there.  And I don’t know how much change I made in just a few days.  But I tried.

So to see someone with an intellectual disability presenting at a conference full of intellectual snobbery makes me overjoyed.  It’s not everything but it’s a start.

[uglyspoon]

For all of us missing 'normal' skills, like counting easily, or tracking social information, or remembering your own details when you need them.

Estimating how much money is in a small pile of metal circles is hard! Getting new information about someone can be hard to learn, too! Sometimes there are work arounds, like having written down in your phone or a little notebook things like your birthdate, your friend's pronouns, what have you.

Sometimes there aren't, though, or you didn't even know it was a skill you might need; like what all the other settings on the dryer are for, or what 20% of a restaurant bill might be without a calculator.

It's hard when someone expects you to eat when you can't, or walk when you can't, but it's also hard when it's other things like the right way to hold a fork or how to handle some types of conversation; and it's okay those are hard for you too.

#actually disabled #social issues #q #this one didnt get quite what I wanted to say in particular but its still percolating #memory issues

[uglyspoon]

This is for all of you with ugly autism.

Intellectual disability is a real issue, and affects so many autistic people. From words, to movement, to thinking, to feeling and being, our brains have to do a lot of things and I am very impressed at how many things your brain will do!

Even especially if it only does a few of the things you would like or need it to. It must be working extra hard to do the things it can! Thank you, brains, for trying.

And thank you for trying, too! No matter how much people with higher functioning autism try to shame you, and tell you you're bad for being you, and dismiss what you have to say, you and your experience matter.

#intellectual disability #q #actually disabled #actually autistic #something down the pipe for allistic id folks I just gotta finish it #still being a generalist cause there are So Many Things that get glossed over