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Unusual but sympathetic paper:

Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders

https://www.mdpi.com/1660-4601/22/2/275

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(Not my content)

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Okay I’m currently furious that migraines are often so blindly easy to treat and I had to find this out myself at the age of 26 when I’ve been to a neurologist since I was 11 lol so I’m about to teach you two neat and fast little tricks to deal with pain!

The first is the sternocleidomastoid muscle, or the SCM muscle.

This big red section is responsible for pain around the eye, cheekbone, and jaw, as well as some temple pain. Literally all you have to do is angle your head down a little, angle it away from the side that hurts, and then you can gently pinch and rub that muscle. I find it best to start at the bottom and travel upwards. The relief is so immediate! You can increase pressure as you feel comfortable doing so.

Here is a short and easy video showing this in action

The second is a fast and easy stretch that soothes your vagus nerve, which is the nerve responsible for calming you down. The vagus nerve, for those unfamiliar, is stimulated by deep breathing such as yawning, sighing, singing, or taking a deep breath to calm your anger in a tense situation.

You can stretch this out by sitting up as straight as possible (this does not have to be perfect to work) and interlacing your fingers. Put your hands on the back of your head with your thumbs going down the sides of your neck and, while keeping your face forward, look all the way to one side with just your eyes. Hold that until you feel the urge to breathe deeply or yawn, or until you can tell there’s a change. Then do the same thing on the other side. When you put your arms down, you should clearly be able to turn your head farther in both directions. If the first session doesn’t get rid of your migraine, rest and repeat as many times as necessary. I even get a little fancy with it and roll my eyes up and down along the outer edge sometimes to stretch as much as I can.

If you need a visual here’s a good video on it. I know some of the language they use seems questionable but this is real and simple science and should not be discarded because it’s been adopted by the trendy wellness crowd!

I seriously cannot believe I didn’t hear a word of this from any doctor in my life. Additionally, if you get frequent recurring migraines, you may want to see a dietician. Migraines can be caused by foods containing histamines, lectin, etc. and can also be caused by high blood pressure in specific situations such as exercise, stress, and even sex.

If any of this information helps you I’d love to hear it btw! It’s so so fast and easy to do. Good luck!

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

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money is such an underrated accessibility option.

like people want to think any disabled person who is after money is morally suspect some way, because they're not asking for "treatments" or "accommodations" like a lot of our issues can be fixed way more easily with money. can't drive? paying for a taxi is often one of the more accessible alternatives. can't cook? you can pay more to have prepared food delivered to you. food restrictions? that food straight up costs more money. can't clean? you can pay for someone to do that. house inaccessible? having (lots) of money can help with that, you get the gist.

having money won't make us abled. it also won't stop our symptoms from being distressing, painful, or debilitating. but there's a huge gap in experience between the average poor disabled person and someone who's actually wealthy. you can buy your way out of some of the difficult situations most disabled people are left to rot in. wanting money, needing money, asking for money is pretty natural when it's such a useful tool. why get so weird about disabled people wanting money like i'm pretty sure everyone wants money anyway

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i know lots of people are planning friendsgivings or holiday dinners this time of year so! if you have friends who are on a liquid diet, and you're planning like, a group dinner, or a party that revolves around food. here's my advice, as someone on a liquid diet for dysphagia, for making your friends feel included. obviously this won't cover everyone with dysphagia (some people have much more specific needs) or even everyone on liquid diets but! just some guidelines that work for me, as we head into the late fall/winter holidays

fun drinks! if my friends are taking me out to dinner somewhere, i always check the menu to see if there're any good looking mocktails or teas or juices on the menu! i can have just as much fun at a restaurant or something if there's like. sparkling yuzu lemonade, or a good coffee menu that goes with dinner (thank u italians), or something like that.

soups don't count as liquid if they have chunks in them. some people can have soft chunks (like potato or orzo), but a lot of people cannot! if you're planning a thanksgiving dinner or something, something like a pumpkin puree soup will go a long way towards making people feel included, and like. getting them nutrition

which leads into! let people bring their own food/drinks if they need them. some people are on oral sole source nutrition, where they cannot tolerate anything but specific formula mixes. some people need to have protein drinks multiple times a day to get their nutritional needs met. don't be a dick about people bringing their own food to your events.

also it's a good idea to familiarize yourself with the iddsi framework for food textures and dysphagia. if you know the person well, you can ask them about where they are (though some people might not know their exact level). i cap out at about level 4, though i can have anything lower than that, and will sometimes experiment with level 5 on good days. some people are also unable to do level 0 or level 1, and need thickening powder for drinks. it's all super individual, and it's a good idea, if you're planning meals for a party, to be aware of all this stuff, and provide a variety of textures, especially if you aren't personally close to the people who deal with this stuff. also provide straws, or let people know to bring their own!

please reblog so people planning parties this next month or two can be more informed!

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still working on mabel for this BUT here's the full mabel mobile!!!

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Do you have a disabled neighbor who receives benefits because they can't work but you see them playing a sport with their child, doing yardwork, or doing other physical activity?

That doesn't mean they're faking their disability.

If someone can do physical exercise for an hour on a good day, that doesn't mean they can do it on command for eight hours straight then do it again the next day and the next and the next and the next.

Disabled people should not have to perform their disability to your standards.

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Do you happen to have any advice for showers? As someone with SA PTSD?

Thanks even if you don’t, and good luck.

Hello anon!

I feel you. Showers are often very triggering for me and unfortunately I haven't found a perfect solution for it yet. But I have a few ideas.

First I think it's important to figure out what exactly are the (most) triggering aspects for you. Maybe it's seeing your naked body, maybe it's touching it, maybe it's being alone, maybe it's specific body parts,...

If you get triggered from seeing your body you could try showering in the dark or semi dark. This doesn't work for me personally because being unable to see is triggering for me but I know that it can be helpful to some people. I personally realized that it was triggering for me to not see anything outside a small space, so I removed the shower curtain. This also helps me because when I can see the whole bathroom my body isn't the only thing to focus on anymore.

You could add to that by placing helpful objects in the bathroom: skills or things that help you calm down (like a plushie), things that remind you of the present day (like a clock that shows the date or things you got after the traumatizing event). I find it also helpful to have the clothes I will put on after the shower closeby so I can see them while showering. Sometimes I even use specific clothes that make me feel extra safe (for example I have a gigantic hoody and a skunk onesie and since both of them are very large I can't see anything of my body when I wear them and knowing I'll put them on after showering can help).

If you're triggered from touching your body you could try using a washcloth or a sponge to prevent direct contact. You can also only rinse your body with water without touching yourself at all - of course that's not ideal but PTSD sometimes forces us to do things in a way that's not ideal and that's okay! Your healing is the most important thing! A combination of those could be to rinse most of your body and clean especially smelly parts (like the armpits) with a washcloth. Often genitalia are especially complicated because they need to be cleaned regularly but they are also often especially triggering. One option is to touch them as little as possible (for example spread the labia apart with two fingers if you have a vulva) and then rinse them with water without touching them any more.

For a while I couldn't shower at all but I realized that taking a bath was easier. So I just lay in the water for fifteen minutes without touching my body. It wasn't ideal but it was better than nothing and it worked for the moment. During this time I also struggled with being alone so my girlfriend sat next to the bathtub the whole time. That's also an option: ask someone you trust to be with you while you shower if that makes you feel safer.

Always remember that it's okay to make things easier for yourself! If you struggle with washing your long hair it's okay to cut it. If you struggle with shaving it's okay to not do it. Whatever you need to make this easier for you is okay!

Another option to focus on something else but your body is to focus on your other senses.

Maybe light scented candles while you shower or spray some deodorant in the bathroom or use shampoo or shower gel with a strong pleasant scent. Also: if you're using the same shampoo and shower gel you used before your trauma it could be helpful to change them.

You could also listen to calming music or a podcast/ audio book while showering to focus on something else but your body. Or you could sing or talk to yourself.

Skills! If you have (waterproof) skills that help you outside of the shower they could also help you in the shower! So take your fidget toys or breathing necklace or spiky balls or whatever with you! That also goes for grounding exercises, affirmations and so on... Solve math problems, recite a poem, solve a riddle,... If it works outside of the shower, you can try it in the shower as well.

Maybe it helps you to use a specific affirmation in the shower like "my body did nothing wrong. What I'm feeling right now is about what was done to my body - not about my body" or "this will only take 15 minutes of the 1440 minutes my day has. After it I will put my clothes back on and I will be okay." You could also write affirmations on a poster and hang it in the bathroom.

You can also wear clothes in the shower if being naked is too triggering. A large shirt in a dark colour for example or underwear.

If showering is generally just not possible you can wash yourself without showering instead. You could wash a seperate body part each day so it's not too much at a time and you could only undress the body part you're washing at the moment and keeping the rest of your body dressed.

Maybe do something nice for yourself after the shower that you can look forward to. You could prepare your favourite snack and TV show and cuddle up in a blanket on the sofa as soon as you're out of the shower.

I hope some of these things can help you! ☺️ If someone else has ideas or experiences, please share!

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Self Care for Sleep

I started using the EAP my school has and the counsellor is helping me take care of myself first since I have some caretaking to do for a family member. The first thing we are focusing on is sleep. I have a lot of trouble getting to sleep some nights.

She suggested 3 things:

🧘‍♀️ Within the hour before I go to bed, do the Legs Up the Wall yoga pose. We discussed using Yoga with Adriene's Foundation video to show me proper form because we bonded over our love of her. 5 minutes is enough to activate the parasympathetic nervous system or "Rest & Digest" mode. * 🥱

🚿 I take showers in the night so she recommended this tip. At the end of a night time shower switch the water to cool - not cold, this will wake you up - or lukewarm depending on your tolerance. This also activates "Rest & Digest" mode. 😴

📘 Either journal or discuss with a close one three things that went well today. If discussing with someone else each person should have time to tell the other three things they liked about their day. This is a great way to bond! My counsellor said she does this ritually every night at 9 p.m. with her best friend via text. 🫂

*

* This is Legs Up the Wall pose.*

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btw while people continue to fight the system don't forget about Undue Medical Debt (formerly RIP Medical Debt), a charity that buys and forgives medical debt. on average a donation of $10 will forgive $1,000 of medical debt.

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Shout out to everyone struggling with chronic pain especially in this stupid cold weather 💕

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autism "i need my routine and the routine was already ignored yesterday" vs chronic pain/disability "good fucking luck dude. you got no bones today"

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i hate when i, a completely healthy person (very chronically ill), get sick (flare up) for no reason at all (i exerted myself way past my limit just cuz i didn’t wanna be “annoying”)

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wheelchair users deserve a minimum of three wheelchairs to meet different needs. like, bare minimum of indoor chair, outdoor chair, and off road chair. chairs that meet different needs for transport, activity, positioning needs, energy levels, etc.

there is not "one chair" that can meet every need. wheelchair users deserve to have multiple chairs that meet specific needs, no matter how complex their seating/positioning needs. we deserve to at least have a backup if our chair breaks that is just as suited to our needs.

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How I Work with Pre-K Kids as a Wheelchair User

I've given these tips to enough other wheelchair users that I figured I could make a post about it, and this blog is aligned enough with it that I figured I could post it here.

I've spent time as an administrator for a pre-K and school age programs, and I am also in my final year to be dual certified as a special education/general education elementary school teacher in America. I am also an ambulatory wheelchair user, but cannot safely move without a mobility aid, even when I am standing/walking. SO. Here's a guide/rundown of how I personally talk about disability with the kids I work with!

When First Meeting a Class

You do not need to explain/justify your wheelchair, and any adult who believes you do is probably doing it for their own curiosity and not an interest in the kids.

My personal recommendation is to say you are always happy to answer questions about yourself, and leave it open ended.

If the class had to be rearranged for your wheelchair and you feel comfortable saying so, I will sometimes say "I'm really grateful that you moved the furniture so I could get around. I can't wait to meet everyone!" It makes it clear why the need is there, and if a kid accidentally blocks you you can always ask them to move so you can get through and remind them.

When They Ask Questions

"Why do you use that?"

I respond by asking them what is 'that' - being careful to speak with a curious tone. For young kids, they might not know the word, and will probably point. From there you can say "oh! this is my wheelchair! have you heard that word before? i use it to get around since walking is [very hard/impossible/not something my body does]."

"Why don't you walk?"

I respond by telling them walking is something I can do for a little while, but it really hurts. Link it to a concrete example. "Have you ever gone into a super hot car, and you could do it for a little, but you wouldn't want to be in there all day?" "Have you ever tried to hold snow (or an ice cube) without gloves, and you could do it for a little but then it started to hurt your hands because it was so cold?" Make it personal, specific, and simple - developmentally they may still need support understanding that other people have different experiences (or might be totally unable to yet).

"How'd you get into that?"

I typically respond silly - "Well, I sat down!" If you want to, and you do not need to, you can make this into a (short, keep it short, their brains are so interested in everything and switch very quickly) lesson on transfers/how people get in/around with their wheelchairs.

"What happened?"

I respond by asking them what they mean. This typically leads to another question which I mentioned above. Alternatively I sometimes say "I realize a wheelchair helps me get around safely!"

"How do you use the bathroom?"

My strategy that's worked best is being calm and friendly while saying "I don't like talking about how I use the bathroom." If you can redirect after that (point out something for them to do, change the subject to something they'll find more interesting) it'll make it easier. If they ask why, you can say that everyone has stuff they don't like talking about and for you it's the bathroom.

Physical Interactions With Your Chair

They touch your chair

We had a big thing about this in my pre-K rooms - what we would do is if a kid tried to touch my chair (or did) I would tell them "It's so cool that you want to explore my wheelchair, but I want to make sure you're safe, because there's a lot of moving parts that can pinch you! Can I give you words for when you want to touch my wheelchair?" If no, then let them know you can't let people who can't be safe touch your wheelchair. If yes, give them a script to ask for permission - you will have to repeat it. A lot. Gentle repetition is your friend and within two months my kiddos were asking everyone permission to touch them at school. My script went "Teacher Pecan, can I touch your wheelchair?" "No, now it's a safe time, because [I am moving a lot/I am tired/I need a break/you have a task to do]. We can check in again [when it is a break time/when I feel better/when you finish your task." "Yes, it is safe to touch my wheelchair right now. Can you point to where you want to touch?"

They kick your chair

Every time a kid kicks/hurts your chair, say "ouch! that hurt! my wheelchair is part of my body, it helps me get around!" Repetition and speaking clearly are your friends. If a kid keeps kicking your chair, finding another thing for them to kick (for example, a ball) can help divert the kicking need into something safer for everyone :)

They (try to) sit in your lap

Gently use your hands to get them off or keep them off. Calmly say "Oops! My wheelchair isn't big enough for the two of us!" If they complain/protest, validate and then explain. My script is "I know it looks like a cool place to sit, but my wheelchair is just for me."

They (try to) push your wheelchair.

My last two chairs had no push handles, but my second one did! It can make sense to panic when I kiddo pushes you - I've had them try to push me into walls (by accident). Here's what I did that worked great: Immediately lock my breaks/grab my pushrims, and calmly say "oops! We don't push wheelchairs without permission!" If they stuck around/didn't immediately run away, I would ask them if they remember a time an adult picked them up and took them somewhere they didn't want to go (typically a car). If they say yes, and even if they say no, I explained that pushing my wheelchair feels just like that, and makes me scared. Most children never pushed it again, and everyone stopped after the second try.

Miscellaneous Tips

"Isn't that cool?" is your friend. Any time a kid is first learning about your wheelchair, end the sentence with it. Any time a kid is nervous about your wheelchair and you explain something, end the explanation with it. "It helps me get around, isn't that cool?" "These are called spokes. Aren't they cool?"

Wheelchairs can be grounding tools when you have a good handle on the class and boundaries! Only if you would like to. My spokes on my last chair were rainbow, and I would use my chair to physically get between them and the emotional trigger, and ask them questions about my spokes. "What colors are next to green?" "Can you point to which one is your favorite?" "Hmmm which color do I get if I mix red with blue?"

"Why doesn't [limb(s)] work?" My left foot is (mostly) paralyzed due to nerve damage, and my script is "My brain can't talk to my foot and tell it to move." You can say whatever you'd like, just try and keep it to basic body parts unless the kiddo is super into anatomy.

If they imply/say wheelchairs are bad, or you might be sad for being in one, you can correct them by telling them how cool your wheelchair is! Get them to compliment it too, if their attention span allows. "I don't feel sad about my wheelchair, I love it! I love the color! Do you? What color do you think I should get next?"

In conclusion - talking calmly, positively, and using repetition of the same words/scripts is a great way to not just exist in a classroom hassle free, but to get kids comfortable with disability/mobility aids at a young age. I have had kids get pinched by my chair (he grabbed my axle from behind), and luckily I had my higher ups on my side and they agreed that I made every effort to keep the kids safe (plus he learned his lesson lol, he always asked permission after that). Your mileage may vary based on admin and their attitudes, so play it by ear, and change any of my tips as needed. Feel free to send questions to this blog too. :)