Chronic Illness doesn't care how old you are

idk who needs to hear this rn but suffering is not noble. take the tylenol

One time when I was younger I was refusing to take headache medicine and my mom said “the person who invented that medicine is probably so sad you won’t let them help you” and now every time I find myself denying medicine I just imagine the saddest scientist making those big wet eyes like “why won’t you let me help” and whoop then I take the medicine

scientist when you don't take the medicine they developed to help your pain

As long as you are taking a SAFE dose of it, then it's *good* for you. Pain is bad for the body. The inflammation from prolonged pain can worsen chronic issues and make it harder to heal.

Ibuprofen is best for pain that has inflammation, while acetaminophen doesn't help with inflammation but is more broadly effective on other types of pain. As long as you are taking the recommended dose, you can even take them TOGETHER, since they have different mechanisms of action.

You do need to be aware of how much and how often you are taking any pain medication. Overdoses can be very painful (even lethal.) And if you are in chronic pain often enough that you need more than the safe dose, then you need to look into other medications to manage that pain.

(Also, if you are specifically taking Acetaminophen/Tylenol for your go-to pain management, getting some NAC and taking that with it reduces the risk of overdose AND may strengthen the effect.)

One other thing: NSAIDS (ibuprofen, aspirin, and naproxen being the three big ones) can cause digestive issues with chronic use, including stomach ulcers. That doesn't mean "don't take them," it means "if you're at the point where you're on them all the time, every day, constantly, you should talk to a doctor about either reducing that risk or switching to another medication that doesn't have those side effects."

I don’t have the source for this table anymore but I felt it should be added to this post.

Also please please please consult your doctor if you are on any other type of medication that put large strains on your liver or kidneys before taking any kind of NSAIDs as they can recommend alternatives.

Yes Chronic Kidney Disease and liver disease prevent the use of NSAIDS entirely. Please remember this. Tylenol is the least harmful to these organs. If migraines are your problem, ask neurologist about the triptan drug family. Downside with these is nausea.

I feel that it is worth bringing up again:

As a scientist, this is the way I feel when people in pain don't take the medication that was developed to help with pain:

Especially because as a scientist, I know that pain sensitization is a thing, and that experiencing pain for long periods of time can even train your whole nervous system to be even more reactive to potential pain. So if at all possible, I want my friends who are experiencing pain to try to control that pain as much as possible.

So if you are in pain, and you do not have any massive kidney and liver strain that prohibits you from taking a NSAID or paracetamol/Tylenol?

Please take the pain medicine. Please. Pleeeaaaaaase. I'm a scientist.

yeah i'm a scientist who specializes in designing new pain meds. suffering is not noble, this is exactly how i look when y'all don't manage your pain:

take the meds! i became a scientist in this field explicitly to help people! i became a scientist because i too experience chronic pain and i failed out of literally all pain meds on the market. those of us in this field, we make these things to be used. be safe, follow doses, and if you have questions, ask your doc and pharmacist!

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.

There is something so sinister about the idea that a medication made to improve your life cannot be trusted if it improves your life so much that you like taking it. Bleh.

It puts this weird moral obligation on suffering. Like if you’re actually comfortable with yourself and your treatment you’re somehow failing. That you need to be ashamed somehow that the medication helps you and need to be looking for alternatives.

But you don’t. You found a solution that worked great and then you moved on to something else.

— Unmasking Autism, Devon Price

Shout out to the ten year old who just got diagnosed. Shout out to the housebound fourteen year old. Shout out to the eighteen year old who can’t go to the university they wanted. Shout out to the twenty two year old who can’t get a job. Shout out to the twenty six year old with a caretaker. Shout out to the thirty year old who can’t buy their own house.

Shout out to young disabled people. We exist.

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.

@irrellavant oops you activated my trap card of asking about something I care about, please enjoy this monologue. Also it’s not comprehensive, can’t stress that enough, this is a just a lil long tumblr post made by a just some nurse who isn’t a palliative care expert and is also writing this on her cell phone on break. Some of this stuff is gonna be pretty obvious! I just would feel remiss if I left it out. And also please anyone who has pain or addresses pain, please feel free to add on. I'm always looking for new ideas and new insights, especially from the patient side so please please do chime in if you like. Okay SO

For me, the biggest thing is conveying to the patient that you care that they are in pain and that you are trying to make it better. I remember I had a patient who was in horrible pain all night, we never got it down, we never got her comfortable, but at the end of the night she thanked me so sweetly for trying and she said that knowing I was taking her pain seriously helped her feel better even if it didn't make her hurt less. Just because someone is in pain, it doesn't mean they have to suffer, if that makes sense. I think one of the worst things about pain in the hospital is the feeling that you've been abandoned to experience it. Someone gives you a pill (or not even that) and says "okay bye" then you go back to writhing in agony. I make sure that before I leave the room of a patient who is still in a pain crisis, that I let them know what the plan is and what the next step is. "You just got 5 mg of oxycodone, which will take up to an hour to take full peak effect. If your pain doesn't get better after that hour, I can give you another dose" or "I'm going to go page your doctor to see if I can get you an additional dose" or "I need to step away right now, but I'll be back in 20 minutes to see how you're doing and if the heating pad is helping." I tell the patient "we're gonna try X, which should do Y, but if it doesn't, the next step is Z” and then I make sure to follow up with them.

I also try to be honest. I never promise that they'll be pain-free, just that we'll keep trying. We aim for small but achievable goals. If it's acute pain, like you just had a surgery or something, I try to contextualize it for the patient. "We're not gonna get you pain-free ten hours post surgery, but we can get you more comfortable than you are right now." Patients are usually fine with being a six outta ten pain if they’ve been otherwise sitting at a nine. Since I’m night shift, I often tell them my goal is for them to get at least a couple hours of sleep and ask them how that sounds.

Then pharmacologically, I look at the meds I do and don't got. If a patient is having incisional pain, lidocaine patches on either side can be great for just numbing the area up. If the patient can get oxy every 6 hours but routinely gets very painful again just three hours after taking the med, then maybe the dose or the timing is not right. Maybe under prns we've got so many opioids and not a single NSAID, and there's not a contraindication. Maybe their pain is caused by muscle spasms, in which case a muscle relaxer could be a great addition. Maybe the pain is nerve pain that would respond much better to gabapentin instead. Or maybe you need IV dilaudid to quickly get the breakthrough pain down to a manageable level so that the other meds have a fighting chance to do anything. If meds aren’t available, these are things you can page the doc about and discuss with them.

I'm also a big fan of around the clock medications for patients that have had poor pain control. Ask patients if they want to be woken up for pain meds (again, patients that have been that painful usually say yes). Explain how it's easier to keep the pain low than it is to play catch up after pain spikes. Pain control works best when you avoid the spikes in the first place. There's no point getting someone out of a pain crisis if you then withdraw all your cares until they're in a pain crisis again.

I also try plenty of non-pharmacological methods of lowering pain or enhancing comfort. (Sometimes you can't lower pain! Sometimes all you can do is enhance comfort!) Does the patient have a topical cream that helps with pain? Could it be applied while gently stretching the muscles and really going to town with a foot massage? Has the patient just thrown up and would like a bed bath to feel clean again? Would they benefit from heat? Or ice? Or warm blanket? Ice and then on top of that a warm blanket? Do they want some pudding? Do they need a little candy from the nurse station candy drawer? If their lower back hurts from being in bed so long, can we get them out of bed? Even if it's three am and we need to lift them with a Hoyer to their recliner, that might still be the best intervention. I had a patient where the only thing that helped her hip pain was going on walks so over the night we went on a bunch of walks. Worked better than any meds.

What about conversation? Do they need someone to cry with? Do they want to talk about pets or their diagnosis or the bizarre TLC show that's playing on the TV? A lot of this is feeling out conversation, and I don't have great advice for that besides if you make yourself obviously available and interested in people, they tend to open up to you.

Also I’m a big fan of asking if there’s anything I can do while we wait for the meds to kick in. That’s usually when I do a bunch of those non-pharm interventions, because it’s efficient (we are in fact waiting for the meds to kick in) and it makes the waiting less miserable. I think it also makes the waiting feel less helpless. We aren’t just waiting an hour for the dilaudid to do something, we’re also tucking you in with a warm blanket and giving you the finest jello I could scrounge up.

And obviously, I ask the patient if the pain they're currently feeling is uncommon for them, either in the type of pain or the intensity. This is good for general assessment stuff and to figure out if the pain itself is the problem to be managed or if there's something new causing the pain. If the cause of the pain can be managed, that's my priority with pain medication as a supportive therapy because like if you're a paraplegic and suddenly you're complaining of an intense pounding miserable headache, giving tylenol isn't the right intervention when what I should be doing is assessing for autonomic dysreflexia.

And I ask them about the type of pain they're having and if they know what works for them to manage it. Plenty of chronic pain patients can tell you what is and isn't effective. Maybe at home they're on 50 mg of oxycodone a day, but right now in the hospital they're only prescribed 40 mg. Or hell, they're still getting 50 mg but they're here because they’re sick so their baseline level of opioids isn't gonna be enough because that's to manage their every day pain and not their new super hell hospital pain. Or they know aspercreme works like a dream on their legs but not on their back. Or patients know that ibuprofen works better for them for this type of pain than a fentanyl patch does, or they don't want to take dilaudid because it makes them nauseated, in which case you can try premedicating them with an antiemetic.

Also when your shift is done, write down all the stuff that worked to control pain in your nursing note so there’s a record of it in case someone needs to do it again.

If there’s one thing that I have found successful though, and I know this might sound cheesy, but it is CARING and showing the patient that you care. You care that they are in pain, you are working with them to get them more comfortable, if something doesn’t work you will keep trying, because pain sucks and you care that they are in pain. Even when you have to leave their room, you let them know that you will come back. They aren’t left totally alone to suffer. Again, sometimes you can’t decrease pain but you can increase comfort. I believe there is genuine comfort in knowing that someone is trying very hard on your behalf to make you feel better, even if they don’t make you feel better.

I’ve had chronic pain for 16 years, and this is most reaffirming perspective on pain I’ve ever heard from a healthcare worker. Thank you for caring and doing everything you do; it seems like such little things but to those with chronic pain, it means the world.

OP I love you

Having someone care about the pain genuinely, physically can actually reduce the pain by helping the body relax that much more compared to less compassionate care. And a relaxed body is, at least it not contributing to pain

YOU GUYS YOU GUYS YOU GUYS!

My wheelchair has arriiiiiiiiiiiiiived!

I’ve spent the past few hours bumping into everything ever and also running *over* everything ever and I’m so in love I can’t even deal, because!

Chair!

Freedom!

FREEDOM!

I’ll be able to go shopping for necessities even when my legs don’t work enough for the walker or the cane! I I’ll be able to go shopping even when my legs don’t work at all! I’ll be able to go all *kinds* of places even when my legs don’t work!

To doctors’ appointments! Physical therapy! Restaurants! Museums! Farmers’ Markets! Orchards! FARMS! Concerts! Movies! LIBRARIES MOTHERFUCKER!

I won’t HAVE to put all the responsibility on Jack, whose legs barely work any fucking better than mine! Do you understand this? CAN you understand this?

Fuck, I’m tearing up so hard here, and — yeah. This is why I’m reblogging the above. I *know* there are people out there in the U.S. who need this help. People who, like me, have Medicaid insurance — insurance which often feels *damned* theoretical — but still haven’t been able to get the pain management or mobility devices they require.

For those of you in Southern New England, I went through:

Access Rehab Centers — fine PTs, OTs, and speech therapists who will do their *damnedest* to come through for you both in terms of giving you the therapy you need and in filling out the REAMS of PAPERWORK you need. They, in turn, worked with:

Hudson Seating & Mobility — These people are absolute motherfucking HEROES. They come to your home; they measure you gently and professionally; they treat you like human beings; they explain everything about the various mobility devices to you and then ask you *more* questions to winnow down which one(s) would be the *best* fit for you; they *bring* you devices to test-drive; they give suggestions about how to arrange your home for your health, comfort, and safety; they tell you how to get what you need and what you need to say and who the best PTs to talk with are; they go with you to the PT to do more fine-tuning and help fill out the paperwork; they man the barricades when Medicaid tries again (and again, and AGAIN) to screw you —

And then they deliver your baby to your door just as fast as they can.

And, you know? These people all go to conventions and industry meet-ups. They talk to each other. Contact them. See if they can connect you to people in YOUR area.

THEY ARE THE LITERAL BEST.

I? Have been trying to get even a *manual* chair that I’d only be able to use when I had a physically powerful aide to push me around in it since *2005*. My (new as of last December) GP sent me to Access who sent me to Hudson earlier this year and —

WHAM.

Yeah.

YEAH.

PLEASE. PLEASE. TRY TO MAKE THIS HAPPEN FOR YOURSELVES.

YOU ALL DESERVE TO BE EXACTLY AS HAPPY AS I AM RIGHT NOW!

My chair, by the way?

Has green accents.

He’s named Jaybird.

Because he’s JUST THAT MOTHERFUCKING SUPPORTIVE AND INVESTED IN MY COMFORT AND SAFETY AND HAPPINESS AND IF YOU DON’T LIKE IT HE WILL RUN YOUR MOTHERFUCKING ASS OVER UNTIL YOU’RE MOTHERFUCKING CRANBERRY SAUCE.

FUCKIN’ A.

Reblogging because these kinds of scripts are exactly what I have to use in order to get the drugs I take for anxiety. I HATE doctors. I cannot over-state how much.

I hate going to the doctor. I can’t seem to do these scripts no matter how many times I practice, and it’s so frustrating.

Hi, sirida — I popped over to your blog and read your tags on your reblog, and, well, I’ve BEEN THERE! I’m so, so sorry you had to deal with those fuckheads, and it really just sent me back to some horrible places in my medical history.

Here are some things that I should probably make a larger post about Dealing With Your Medical (Un)Professionals:

1) If you *can* go with someone else, *do* go with someone else. Not just anyone else — someone who knows your health issues, and understands your health issues (mental or physical or *whatever*), and believes in you *and* your health issues. This person might be your lover, or your friend, or your fuckbuddy, or the fancreature visiting you from London that week, or your pastor, or WHOEVER.

The important things are that you share a mutual affection and trust with them, that they understand your health problems at least as well as you do, and that they are capable of stepping in to have your back when the asshole doctors/nurses/whoever are giving you shit.

For me, this person is my spouse Jack. We take this role for each other *all the time*. Happily, we’ve reached a point where not *all* of our medical professionals require a tag-team approach, but you better believe some of them do.

*If your medical professional says that you medibuddy cannot be with you when you are having your consultation* (as opposed to, say, your CT scan, or MRI, or X-ray, or whatever — THEY CAN TOTALLY BE WITH YOU FOR YOUR VAGINAL ULTRASOUND, PEOPLE! DON’T BE FOOLED!), then you either put your foot down and tell that fuckwit that they’re dead wrong? Or you explain to them that they aren’t your doctor anymore and you let them watch you strut right out the door.

Motherfuckers.

In my experience? They pretty much always back down and let your medibuddy in.

Good way to find a potential medibuddy: Depending on where you live, your level of disability, your insurance, etc., your statewide nursing organization/general healthcare clearinghouse (here in CT, it’s Husky Health) may be able to provide you with a nurse who will work with you *personally* and either come with you to your appointments, or, after you explain to them over the phone how your doctor fucked the fuck up? They will damned well *call* that fuckwit on your behalf and wreck shit.

Call 211 and see what you get!

Now, once your medibuddy is in the room, some doctors will be utter pricks and like “I need to hear this from YOU.” Or, completely contradicting themselves, they will ignore your protests entirely and yell at your medibuddy — “Now listen here — I will talk to the patient and ONLY to the patient.”

This is where the *real* script comes in:

“Oh, I’m sorry, doctor, but I’ve terrible trouble with anxiety when it comes to health issues, and [medibuddy] knows everything about my condition. I would much prefer it if you talked to them whenever possible. They are, in fact, privy to all information about that.” [Make sure to ask the receptionists out front for documents you can sign which will allow this to be true.]

AND/OR:

“Yes, I know this is against your office policy, but a) it is my right, and b) I feel it would be a much more efficient use of our time if we did this the way which would not end in me crying in pain and/or having a panic attack.” *insert pointed look here*

AND/OR:

“No, doctor, I do *not* need to be admitted into psychiatric care. I simply need you to accede to my wishes and speak to my medical proxy, who is right here. I will answer all questions they cannot, of course, but I prefer — as is my right — for you to direct the lion’s share of questions to them.”

Honestly, though? If they fight past the first scripted answer? You probably need a new doctor anyway.

But yes, politeness, firmness, a *hint* of sarcasm to remind them of your humanity and the fact that you’re a person who is currently calm but who is *capable* of messy, inconvenient, and *time-consuming* emotions?

Yeah, this often works well.

2) If you can’t find a medibuddy/your medibuddy is currently unavailable/your medibuddy is as bad at remembering their lines as you are?

Honey, this isn’t Broadway!

Think of it as more of an open-book exam.

Take notes about *exactly* what you want to say. Write it down. Bullet-point in neat, pithy little catch-phrases if you have the kind of medical professional who actually reads the charts the techs and nurses hand them before they start prodding at you (of course, if you had one of those, you probably wouldn’t need *this*…), or just however is easiest for you or your medibuddy to read if you can’t.

“I have some notes here that I brought to stay organized…”

If the medical professional balks — and, yes, some of them will, because some of them are just that fuckwitted:

“I’m sorry, I have some memory issues, and I wanted to make sure I stayed organized and on-point. I know how busy you are.” *insert cold smile here*

OR

“I often get flustered/embarrassed when I talk about my needs — I hate to whine — and this makes it easier and much, much faster. I hope you understand?” *insert pointedly wide-eyed look here*

OR

“I can be quite forgetful — the last thing I want to do is leave something out and then have to come back a week later and waste everyone’s time!” *insert fake laugh here*

Or something along those lines.

Note how you’re playing to Dr. Asshole’s ego. This? Tends to work. Phrase it in your own words. Put it right on top of your copy of the notes. And your medibuddy’s copy, too.

Though let me be clear — I’ve only had doctors complain about the notes method about 5% of the time. About 10% of the time, they’ve been indifferent. The other 85%? They’ve been downright overjoyed. Medical professionals equipped with still-functioning minds and souls *recognize* the efficiency and utility of this method, and jump right the hell over it.

Especially if it’s typed-up in nice large text.

So, you know, even if you’re *sure* the medical professional you’re seeing is a throbbing pustule on the body politic? Bring a nice, clean, insult-free copy for them just in case.

Re-blogging and signal-boosting, because I guarantee to you, people:

Sooner or later, you will need this. Either you will personally, or your parent/child/signficant other/best friend will. This is part of modern life, one of the major signs of adulthood.

A useful article from King Arthur Flour (my beloved) on baking while disabled.

This genuinely might make me cry. I already deeply appreciate King Arthur for making the best GF 1 for 1 flour. And having good recipes. But an article posted by them from someone with disabilities about how to do the thing even with disabilities? That’s just genuinely lovely. I know that my bad there is low, but it’s low for a reason and hopefully stuff like this can continue to raise that bar for disabled people like me.

I love to see this! Another of my favorites is the baking with arthritis post.

King Arthur Flour is great flour with an even greater website. (I say this as someone who is expected to make their pumpkin bread for the family every Thanksgiving.) 

Not needlework related, but this is a very good resource for people who need it.

Oh, my, do I need these articles!

Useful information

[VIDEO TRANSCRIPT:

"All your tests/labs came back clear! Isn't that great?"

American healtcare is a business, and you are the customer. Here's something you can say:

"It's great that we ruled out X, Y, and Z with these tests. However, I'm still having these symptoms, and they're effecting my daily life in these specific ways. So what's next on your list of differential diagnoses?"

And if that doesn't get you anywhere, you can say something like:

"Okay, we've ruled out all of the common causes for my symptoms. So when do we start exploring more rare explanations?"

And if that still gets you nowhere, you're going to document their refusal to do further testing in your chart, because they don't want to have to put that in writing. Keep going, you're worth it. I love you, mean.

END VIDEO TRANSCRIPTION.]

having the ability to stop, slow down, and think "wait, is there any physical reasons I feel bad actually?" is probably one of the most important skills one can have as a mentally ill/neurodivergent person or really just as a human being existing in the world in general

I'd always felt like those "stop! are you hungry? have you had enough water? etc etc..." posts from a few years ago were helpful but sometimes condescending because I really didn't realize how much some people with emotionally negligent parents just were not taught those skills. It can come off as dismissive to be like "you're actually just hungry" when someone's upset but ... There are a nontrivial number of people in this world who cannot function normally when they're hungry and don't even realize that's what's causing it.

Anyways if you're sad and reading this go have a snack. Even if you have a real problem beyond being hungry you're not gonna solve it on an empty stomach anyway so just go have a snack. it won't hurt

If you're upset, ask yourself: is this caused by SHREK?

Sleepiness

Hormones

Restroom

Eating

Kidneys (dehydration)

Also, friendly reminder that if you can't drink water for whatever reason, you aren't a bad person and you should drink SOMETHING. Juice, milk, sports drinks, yes even coffee and energy drinks - there is water in those things and some water is better than no water!

If your options are drink nothing or drink a sugary soda - drink the soda. Dehydration is no joke, and, again some water from a different drink is better than no water at all.

Anon, I have your answer!

Anon, nobody is looking at you at a bar or club, watching what you do all night and who you do it with, evaluating you as a loser based on the data they have gathered. I understand that it may feel like you’re under such unrelenting, inescapable scrutiny because you have experienced such scrutiny in the past, and your brain now runs an almost constant simulation of that scrutiny for yourself. But it’s not really happening.

When your brain makes you feel this self-conscious, it’s to protect you from future social punishment by imagining the worst possible perceptions other people might be having about you. Unfortunately, that self-protective reflex isn’t rooted in the reality of a bar or club-type environment. So you can thank your brain for the attempt at help, and then let go of those concerns.

Try focusing your attention outward, with interest, toward other activities and people. Approach new situations with genuine curiosity and a capacity for awe. The more you focus on living and experiencing and the world that you perceive outside of you, the less you’ll be worried about what you are doing and how other people are viewing it.

Lots of people go to bars and clubs alone, additionally, some even to meet new people and make friends. So you dancing by yourself or even trying to make light conversation with strangers is nothing out of the ordinary to see. Neurotypical extroverts do that kind of thing all the time. That’s how bar regulars even become bar regulars. They start out not knowing anyone, then build up a social network gradually through consistency of presence, and by showing others consistent respect.

read (or listen to!) the rest for free here.

Today my therapist introduced me to a concept surrounding disability that she called "hlep".

Which is when you - in this case, you are a disabled person - ask someone for help ("I can't drink almond milk so can you get me some whole milk?", or "Please call Donna and ask her to pick up the car for me."), and they say yes, and then they do something that is not what you ask for but is what they think you should have asked for ("I know you said you wanted whole, but I got you skim milk because it's better for you!", "I didn't want to ruin Donna's day by asking her that, so I spent your money on an expensive towing service!") And then if you get annoyed at them for ignoring what you actually asked for - and often it has already happened repeatedly - they get angry because they "were just helping you! You should be grateful!!"

And my therapist pointed out that this is not "help", it's "hlep".

Sure, it looks like help; it kind of sounds like help too; and if it was adjusted just a little bit, it could be help. But it's not help. It's hlep.

At its best, it is patronizing and makes a person feel unvalued and un-listened-to. Always, it helps reinforce the false idea that disabled people can't be trusted with our own care. And at its worst, it results in disabled people losing our freedom and control over our lives, and also being unable to actually access what we need to survive.

So please, when a disabled person asks you for help on something, don't be a hleper, be a helper! In other words: they know better than you what they need, and the best way you can honor the trust they've put in you is to believe that!

Also, I want to be very clear that the "getting angry at a disabled person's attempts to point out harmful behavior" part of this makes the whole thing WAY worse. Like it'd be one thing if my roommate bought me some passive-aggressive skim milk, but then they heard what I had to say, and they apologized and did better in the future - our relationship could bounce back from that. But it is very much another thing to have a crying shouting match with someone who is furious at you for saying something they did was ableist. Like, Christ, Jessica, remind me to never ask for your support ever again! You make me feel like if I asked you to call 911, you'd order a pizza because you know I'll feel better once I eat something!!

It's incredibly frustrating when someone does this. My mother used to be awful for it before I moved out; with the best will in the world she would constantly undermine me in exactly this way and then get indignant when I dared to point out that she wasn't really helping me at all. It wasn't until I started using kid gloves to explain things to her that the situation improved at all and thankfully I have managed to teach her that yes, doing exactly as I say when I ask her for help is the best way to support me, and because I know she loves me, I also know that she would want to be told how to help me in the correct way. It's not criticism of her as a person, just me explaining to her the best way to help me, which is information that she wants because she loves me and wants to do right by me.

Should I have had to explain that to her? No! Was it enormously tiring to have to teach her something on top of everything else, when I was already in need of help? Yes! But it's done now, and it's better.

Anyway, if you love a disabled person, listen to us and help us as we ask instead of second guessing us. Thanks. ( b ._.)b

tip for people with chronic pain/fatigue: lay down occasionally. haven't laid down in the past 3-5 hours? do it (if you can) and see how you feel. i've found that i'll lay down in bed just to be in my room, but then i get hit with an instant wave of relief because just sitting on the couch was too much for my body, and i didn't realize it.

when you're in pain or fatigued for a long time, your awareness of your body may get wonky - especially if you already struggle w/interoception due to neurodivergency. so. test it, sometimes. you can apply it to other things too: sit if you're standing. stop doing a task if you've been doing it for a while. have a small snack to see if you're hungry. etc. etc.

I don't tend to reblog tips, for the simple reason that they're so subjective that they may literally work for only one person. However, I just tried this. When I say just, I mean I'm currently typing this while lying in a recliner (touch typing comes in super handy at times like this. Thank you, Grade Four!). It's working. I was feeling incredibly fatigued, in the 'I'm about to zonk out completely' sense, so I reclined the chair. Once I passed roughly the 45 degree point, I immediately felt a wave of what I can only term as relief at the change in position. It was like my body suddenly figured out where blood should circulate to. I don't feel any more energetic, but the brief sense of relief was wonderful. If the post above applies to you, give this a try and see if it helps you. It certainly can't hurt, but it could benefit you. No harm, no foul!

chronic pain/fatigue person here. doing this on the regular has totally changed my life.

Yes. Excellent. All of the above. In this house we love inclusive and accessible sex education!

once you understand that a vibrator is an accessibility tool, your understanding of disabled issues and of the world really widens

most people only think of accessibility tools in a barebones kind of way. a ramp is needed to physically enter spaces, a cane is needed so i don’t fall over while standing, captions are needed to literally be able to understand words being spoken.

some people go a little farther and understand them in terms of daily life functions, like adaptive clothing, or pre-cut food. still, these things are only seen as needing access tools because they’re baseline human functions. eating. walking. wearing clothes.

my vibrator is an access tool. because of my conditions, i can’t hold my hand where it needs to be long enough to masturbate. masturbating isn’t a necessary human function. i will not die if i don’t do it. i won’t lose my job if i don’t do it.

but the thing about a vibrator, is that it makes an aspect of life that i want to enjoy possible. disabled access is not only about the barebones basic necessities to literally be alive. if someone wants to have orgasms, a vibrator is an important tool to a pleasurable life. food delivery makes eating delicious food possible. sensory friendly live performances makes enjoying theatre and music possible. shower seats mean people can sit and enjoy a long shower that otherwise would have exhausted them. service dogs let people go out with their friends when they wouldn’t have otherwise. my cane doesn’t just help me walk, it helps me keep balance while i’m dancing at the club.

disabled people deserve so much more than to just get by. we deserve to have full, pleasurable lives, to experience all the kinds of things that able-bodied people get to experience too. access tools are meant to help us not only survive, but to really thrive too