I thought that with all the exhausting Straw Ban Discourse, with everything from repeated questions about paper straws to outright eugenics, we might appreciate a bit of levity. So I made the following Straw Ban Bingo Card.
It’s the unending WAVE of the same questions when multiple articles and threads and charts have covered these exact points that is what is so exhausting about The Summer of the Straw Ban. This bingo card is intended for levity and to relieve some of the pressure and fatigue of disabled activists.
If you’re disabled, you may want to skip ahead to the chart. If you’re an abled person reading this and you still have questions about straw bans, or why we need a bingo card, the below is for you:
I would like to note that taken individually, Not All of the responses are necessarily problems. I mean, people can be disabled and care about the environment at the same time. We can care about sea turtles and ocean plastic without banning the thing disabled people need to drink. That’s…kind of the point of why disabled people are mad about straw bans.
Alex has been so compassionate and thoughtful despite the fact that the other day Alex made a thread about how maybe we could ban grass lawns instead of straws, and received a wave of harassment by people who said that Alex hates trees or something. For the record, grass lawns are bad for the environment.
I encourage you to check out the thread and responses, as well as this article by the wonderful Alice Wong that closely matches my own experiences with the Summer of the Straw Ban.
Probably people are going to be upset about the bingo card, especially because I mentioned the turtle. The turtle is suffering! The turtle is not a microaggresion!
But pro tip, if you’re talking about disabled people needing hydration and you link that turtle photo out of the blue, you’re kinda saying the turtle’s life matters more than disabled lives? And subjecting disabled people to gore? And maybe — get this — maybe the turtle’s life and disabled peoples’ lives are both important. Shocker.
With that being said, here is my straw ban bingo card and transcript :
Transcript of straw ban bingo, from left to right, top to bottom, with an asterisk between each horizontal line on the bingo card:
“whatabout reusable straws”
“but paper straws –“
“but metal straws–“
“silicone straws aren’t expensive”
ignore science on recycled plastic being bad for oceans
“who needs straws to drink”
mention your disabled family member
mention your disabled friend
mention sea turtles
“maybe they just didn’t think about disabled people”
“why can’t you just bring one with you”
talk over disabled people explaining CripTax
“but the oceans”
“we picked plastic straws to ban because it’s fun and frivolous”
ignore that washing straws is labor
ignore that reusable straws get contaminated
ignore corporate waste
“I didn’t think of hot beverages”
mention feeding tubes
“I’m tired of talking about straws”
“go seek medical attention if you need a straw to eat soup”
“every little bit of plastic waste counts”
* For a transcript of the above chart, please see : liminalnest.wordpress.com
If you wish to use this chart, please feel free. If possible, give credit, but more importantly please link to this post or my blog (it will be hopefully pinned to the first page once I remember how that works), so that screen reader users can access this chart.
A fun thing about disability is that we often need to pay extra for accessibility or the healthcare we need to survive, but simultaneously we tend to have less income.
I thought I would share a list of free or low cost pain management tools that have helped me with the past 15 years of chronic pain. These are not intended to be a substitute for getting medical care. This post is also not for abled people to argue that those with chronic pain “don’t really need opioids.” Sometimes we do need opioids or other medications to function, Karen.
Instead, this is just a list of things you might want to try to help your pain, made up primarily of things you can find around your house or at a low cost. Use what helps and ignore the rest.
Roll a hand towel into a tight tube. Now you have a handy support that can be used for all kinds of things. For example, I keep one in my car and position it between my low back and the seat. This helps support my low back. Or if I’m laying down, the towel roll can go between my neck and a pillow. This helps support the natural curve in my neck. This technique is better when used preventatively.
DIY yoga strap
Have a belt, a tie, or the cord for a robe? These can all be used as a DIY yoga strap. Yes, I know, yoga isn’t for everyone. But if you’re having low back or hamstring pain (even foot pain), this might help. Lay on your back with one knee bent so that foot can be flat on the floor. Place the strap around the ball of the opposite foot, and extend your leg into the air. The higher your leg, the bigger the stretch, so you might want to start low. You can also modify how much you straighten your knee to adjust the stretch. Repeat on the opposite side.
It may sound weird, but if you’re having low back pain, the floor may be one of the most comfortable places to be. Personally, I get relief from laying on the floor with my legs supported by pillows or even the couch. Ideally, my hips and knees form a 90 degree angle while my back is on the floor. When I can’t sleep because of sciatic nerve pain, this position offers relief.
The corner of a wall
I tend to get shoulder pain, and unfortunately I cannot detach my arms and massage it myself. However, there is a way to gently apply pressure to the muscles. First, find a section of wall where a corner juts out, alternatively a doorframe will work. Position muscle (NEVER bone) against the jutting out bit, and gently lean back. You can modify the pressure on your muscle by how much you lean on the wall.
A ball and a long sock
This is another self massage technique. Ideally you would use a raquet ball for this (generally, three packs are around $5). In a pinch, you can use a tennis ball. Place the ball in a knee length sock or stocking. You can now maneuver the ball by pulling on the end of the sock. Place the ball end over your shoulder, and position ball over tight muscles. Lean back against a wall, or lay on the floor with the ball beneath you. Can also be used on low back, neck, or really any area of pain. NEVER place ball directly under bone.
A sock and some rice
For a cheap heating pack. Place rice in sock to fill it, then tie the end. Microwave in 30 second increments until it is the desired temperature. The sock needs to be 100% cotton or it might melt in the microwave. Heat is good for increasing blood flow to an area, which can help relax muscles and ease pain.
If you don’t have a ready ice pack, frozen peas will do. Alternatively, place ice cubes in a zip lock bag. (Note: when traveling by airplane, bring empty zip locks with you. You can ask the flight attendant to fill it with ice on the plane.) Ice is good for reducing swelling (such as after a sprain), helping reduce migraine pain (applied to the back of the neck), or numbing an area. Note: do not use ice if contraindicated, such as with CRPS. Also, be sure to prevent skin damage by wrapping an ice pack in a kitchen towel and only iceing for 10-15 minutes at a time.
A washcloth and water
For making a cold compress: Place a washcloth under cold water to wet it, then wring out excess water. Fold washcloth to desired size and place on forehead, back of neck, or desired area. This can serve as an alternative to an ice pack. Additionally, I find it really soothing if I’m cold and clammy, feverish, or nauseous.
Alternatively, you can use warm water to make a warm compress if you prefer.
This is a sports medicine technique I learned from a physical therapist when I had bursitis. It is useful for areas of painful inflammation. Take an ice cube and wet it so it doesn’t stick to your skin. Rub it over the painful area for 30 seconds, being sure to move it continuously so it doesn’t damage your skin. It’s a very intense sensation, but can provide more relief than just an ice pack.
Epsom salts and hot water
You can generally get a bag of epsom salt from the grocery store or pharmacy for $5. If you have a bathtub, you can take a warm Epsom salt bath. If you’re having foot pain, you can soak your feet in a plastic storage bin filled with warm water and Epsom salt. If you wish, you can add a few drops of essential oil for a relaxing smell.
Sometimes, I want to massage my feet, arms, or hands but I don’t have the hand strength. In these cases, it can be useful to use a commercial massage roller. I like those made by the company Therawell, although I have also found good ones in the housewares section of a local Korean grocery store. Bed bath and beyond also carries them, and of course they have great coupons.
If you have plantar fasciitis or other pain at the base of your feet, you can roll your foot over a frozen water bottle for relief. You can also rub this over your arms or legs, although it may be harder to manuever.
A bunch of pillows
I tend to hyperextend my elbows, knees, ankles, really all my joints, because of hypermobility. So when I’m sitting at a desk or the television or in bed, I like to use pillows to prop up parts of my body that tend to bend in weird ways. For example, when I’m at the computer I might place a pillow under my arms to help support them as I type. If I have my feet up on a footstool, I might put a pillow under my knees to stop my knees from hyperextending. Additionally, if I have a sprain or subluxation, I might use pillows to elevate the injured area to reduce swelling.
It’s really easy to get engrossed/hyperfocused on a particular activity, and then I might forget to take rest breaks. A timer for tasks like cleaning, typing, etc, can help me keep track of how much I’ve been doing so I don’t overdo. Taking breaks is annoying, but my body appreciates it.
I currently have a lot of specialized braces/wraps for my body, like ankle and wrist braces etc. However, if you have an acute injury or just want to see if extra bracing might help a joint, you can use a plain ace bandage to wrap the joint. This also provides a small amount of compression around the joint to reduce swelling.
I tend to get sinus headaches which trigger migraines, and steam can help loosen congestion and relieve the pain. There are several ways to use steam. A steamy shower is one option, though this is harder for me due to my heat intolerance. You can always sit in the bathroom while someone else takes a steamy shower. Another option is to boil water, place it in a bowl, put your head over the bowl and place a towel over your head and the sides of the bowl. This lets you directly inhale steam, although I find it very unpleasant. Or you can purchase a humidifier, and place it near you. This is more expensive, and it’s very important that you keep it sterilized, but this option works best for me.
I hope you find something that eases your pain, whether it’s from this list, from a doctor, or from somewhere else entirely.
[this post discusses food and dietary restrictions, as well as photos and discussions of knives]
I have wanted to make a post about accessible cooking for awhile. The problem is, everyone has different access needs (even people with the same condition!). So in this post, I’m going to talk about my process for adapting cooking to my body, so hopefully you can use a similar process to adapt cooking for your body.
As with everything I post: if something doesn’t work for you, don’t do it! You are the ultimate authority on what you can and cannot do.
Also, if right now cooking for you is “microwave a thing” or “boil water, throw things in” then that’s totally valid. Maybe this post will help you find a more accessible way to microwave something.
1. Deciding what you want to eat: harder than it sounds
For me, the whole “decide what to cook” thing takes a lot of cognitive energy (thanks, brain fog). So I like to look for recipes at a completely different time from when I’m actually cooking.
Additionally, it can be helpful to make a list for my fridge of safe-for-me recipes so I can save mental energy. I need to update mine, but my list is organized by how easy it is to make something. (The easiest stuff just goes in the microwave/my mouth). This helps because when I’m hangry, I don’t know what I want to eat so having a list of options I like makes it easier.
I also keep high protein snacks around, so I can have an emergency snack and then actually cope with fixing a meal if I didn’t realize I was hungry until it was an emergency. Some people also use timers to remind themselves to eat.
2. Finding recipes that I can actually eat without regretting my life choices
Mostly I get recipes from a few cookbooks I like, or from asking other disabled people.
I also like to watch cooking shows to pick up techniques that recipes assume “everyone knows” (for example, if you need to measure molasses you can coat the measuring spoon with a thin layer of cooking oil. This means the molasses slides right off, rather than sticking to the measuring spoon.) Generally, chefs like saving time and energy, which means that a lot of their technique tips are perfect accessibility hacks. Also, as an autistic person who is often very literal, things like “separate yolk from egg whites” is not a very clear direction.
When I find a recipe I’m interested in, the first thing I do is skim the list of ingredients for things that will cause my body to rebel. Then I try to come up with substitutions that I can safely eat.
I also try to find recipes that rely on shelf stable/frozen ingredients. My body is unpredictable, so I can’t always cook when I want to. I don’t have a lot of money, so the last thing I want is to waste a lot of perishables. This means I eat a lot of root vegetables, frozen/canned vegetables, dried or canned legumes, frozen meat substitute (since I’ve had bad luck with histamine in frozen meat), etc. I can keep common ingredients in stock for whenever I’m well enough to cook, and then freeze the leftovers in single serving containers.
If a recipe has a hard to find ingredient, I tend to substitute something else unless I know I’m going to use it a lot. (Otherwise I’ll just have a jar of something decomposing in my pantry.)
3. How do I find substitutions?
Often, a quick internet search will turn up a list of possible substitutions. (That’s how I figured out I can use grape juice instead of wine, for example.)
Sometimes I will also ask the internet what people with X condition use instead of Y food.
If you have access to a cookbooks specifically geared towards a particular dietary restriction, they will sometimes include frequent substitutions in the front section. (For example, thanks to vegan cookbooks I know I can use ground flaxseeds, corn starch, or tapioca flour instead of eggs when baking.)
Unfortunately because everyone is individual, you may have to experiment to find a substitution that works for you. When possible, it’s better to try one new ingredient at a time so that if you have a reaction you know which new ingredient caused it.
If you find a substitution that works for you, it can be helpful to write it in the margins of the recipe so you don’t forget. This also means that if anyone helps you cook, they know how to adapt the recipe for you.
Also if you have a master list of safe foods, don’t forget to update your list. Frequently I find loved ones are overwhelmed by my list of food intolerances, leading to wails of “so what can you eat??” Keeping a list of foods that I can eat means it’s easier to communicate my access needs when someone else is preparing my food.
4. Obtaining ingredients
Adapting shopping is a blog post in its own right, but some strategies that might help include:
Buy shelf stable items online when possible. (If it’s something you use regularly, consider setting up a recurring order.)
Use grocery delivery services. (Be sure to tip your delivery person.)
Enlist a friend, family member, or caregiver to shop for you. (If you need one specific brand of product because that’s the only one you can eat, include that in your list. Also, some grocery stores like Wegmans have an app for making lists that automatically includes what aisle the product is on. This can help avoid mix ups or “I couldn’t find it so I didn’t get it” issues.)
Go to the store, but make it accessible. Use the motorized cart, disabled parking, noise cancelling headphones, sunglasses, go early or late on a weekday when the store isn’t crowded, ask for assistance carrying your bags to the car, or whatever you need to do to make shopping possible for you. Also, avoid cooking on the day you shop for groceries, and don’t shop while you’re hungry.
Consider making a reusable list of frequently bought items, with a space to check off if you need them and how many you need. This can save precious energy down the line.
5. Adapting the physical part of cooking
It can also be helpful to look over a recipe and figure out physical adaptations. If you’re new to cooking while disabled, you may need to plan this out ahead of time as sometimes it requires special supplies. Also, if you encounter an unexpected problem while cooking, jot it down so you can brainstorm access solutionslater.
I’m going to list some aspects of cooking that I struggle with as well as ways that I adapt them.
A. Problem: Opening a can is actually really hard. Solution: use OXO ergonomic can opener.
B. Problem: coordination problems mean I might cut myself. Solution: wear a Kevlar glove on the non-knife hand when using sharp objects.
C. Problem: standing while I cook makes my back hurt and also I get dizzy.
sit at the dining room table whenever possible (chopping vegetables, scooping dough onto a baking sheet, etc.);
Wear orthotics and compression gear while cooking;
rest one foot on a stool periodically to relieve pressure on lower back;
take breaks (like after chopping but before putting things on the stove);
stretch when necessary;
consider preventative pain management strategies (like putting CBD oil on my back before I start cooking);
consider using an insta-pot or something where you can just dump the ingredients in and press start.
D. Problem: brain fog means I forget if I’ve added an ingredient or not. Solution: be like a fancy chef and measure out ingredients before I start, so if the little bowl is empty I know I’ve added that ingredient.
E. Problem: cookware is heavy and hard to lift.
slide instead of lifting when possible.
Look for lighter weight alternatives (those thin plastic cutting boards you can throw in the dishwasher are a godsend).
Ask for assistance moving pans if available.
F. Problem: the kitchen gets too hot when I use the stove. Solution: use a toaster oven when possible and save the stove for cold days.
Additionally: if there is a machine that can do part of the cooking process (such as a stand mixer, bread machine, or food processor) and I have access to that machine, I let the machine do the work.
6. What if I don’t know how to solve a cooking access issue?
That’s okay, it happens to all of us! Here’s some places to look for answers:
Does Google have any ideas? Worth checking!
Ask other disabled people (social media is great for this, also uh a lot of us have blogs).
If you’re still stuck, consider asking your doctor for a prescription for occupational therapy. Finding access hacks for you is a big part of their job. You might want to make a list of issues to bring with you.
I hope this guide helps you figure out strategies for addressing accessibility problems in food preparation. Good luck!
1. You can get a little squeegee thingy and keep it in your shower. If you use it to wipe the walls down after you bathe (or even just That One Spot where water collects), there’s a lot less random mold growth and it’s easier/safer to clean the shower. If that’s too hard to hold, a hand towel can do the same job (credit to Twitter user @outofmyplanet for the hand towel tip.)
2. You can use a mop to clean the tub and even the shower walls, and this means much less bending.
3. If you don’t have a ton of energy but want to do a cleaning thing, consider wiping doorknobs/light switches/toilet handles with disinfectant.
You can do them in small bits, and also it’s really important during flu season.
4. Another lower energy thing is collecting plates/mugs/glasses and leaving them in one place, so the next time you go to the kitchen you can maybe bring one or two with you.
5. Microfiber cloths are really good for collecting dust/pet hair. You can often get them at the dollar store. They’re reusable.
If you have a dust allergy, consider wearing a face mask for this task.
6. If you can’t do anything physical but still want to clean, consider
A. Deleting old emails
B. Unsubscribing from mailing lists
C. Making a grocery list
D. Refilling your meds
7. If you have a pet, maybe brush them if your hands aren’t hurting too much. It means less pet hair to clean later.
8. If you want clean sheet feels but can’t wrestle with a fitted sheet, consider just changing your pillowcase
(Note: you can often find extras at thrift stores, and they’re softer from a lot of washing. Or TJ Maxx etc if used sheets aren’t for you).
Also if you’re not already following, unfuck your habitat has a lot of good no energy for cleaning hacks
Finally: if you just need to rest and you can’t do anything on this list, that’s totally valid.
Your worth is not determined by your productivity.
I have stories. I think everyone who is disabled has stories. They’re stories of being denied medications, verbally or physically abused by healthcare providers, being gaslit about our symptoms. They are stories of medical abuse.
Under the current system, it’s very difficult for people to self-advocate around instances of medical abuse. For example, if you complain about a provider while you’re still in a hospital or institution, there’s no guarantee that the abuser won’t be in charge of providing life-saving care to you. Maybe nothing will happen, but maybe it will impact your care. Maybe they won’t be gentle when they’re doing a blood draw. Maybe they won’t order the test you need. It’s a gamble.
One thing that’s happened to me is that when I’ve tried to self-advocate around medical abuse, the hospital network has said that since I’m “able to self advocate” then I “can’t be that sick.” Maybe it’s time for me to be discharged. Maybe I don’t need care that badly after all. This is one of many ways that the medical industrial complex (MIC) silences patients who are dealing with medical abuse.
Or perhaps after the experience is over and you’re safely home, you decide to call the hospital patient advocate or another doctor at someone’s practice to report the abuse you experienced. These systems are designed to protect the hospital/practice from potential legislation. So in my experience, what typically happens after reporting medical abuse is that I get a form letter saying the hospital will “take care of it.” The abusive person maybe receives a talking to from their supervisor, and nothing else.
I am lucky in that I have friends and family who can help me advocate in a medical setting. They can “be the bad guy” and take the brunt of the hostility from providers, and ideally this does not affect my access to care. Additionally, with a witness present it’s harder for medical abuse to pass unchallenged. However, not everyone has this type of social safety net.
Medical abuse can kill. I never got the chance to know Carrie Ann Lucas, a disability rights attorney and member of ADAPT who demonstrated to help protect the Affordable Care Act in June 2017. However, I have heard from numerous friends who mourn her loss. In February 2019, Carrie Ann’s insurance company UnitedHealthcare denied her access to a $2000 medication to treat a lung infection. She had to take a less expensive alternative that she was allergic to, and she died from the complications. In a further example of the senselessness of her death, the complications cost her insurance company $1 million. And more tragically, she died, in a completely preventable way. The Medical Abuse Hotline aims to change that.
Friends and activists who knew Carrie Ann Lucas are working to create a system for reporting and dealing with medical abuse in her memory. Working through The Health Justice Commons, people are raising money to create a medical abuse hotline.
The hotline “will serve as a resource for survivors providing tools for community defense and advocacy, and access to a referral network of progressive practitioners; while documenting these experiences in order to expose and educating about medical abuse and holding the MIC accountable for its actions.”
A Community Engagement and Grassroots Fundraising Campaign is currently underway. (Watch the YouTube video here.) The goal is to have the first hotline advocates training in February 2020, and launch the Hotline in April 2020. For more information or to get involved, check out the Health Justice Commons website. You can also donate to the fundraiser or share the donation page with your social network.
I feel like when allistics talk about autism, it’s usually a narrative that being Autistic is some sort of tragedy. We’re a missing puzzle piece. They need to “find a cure”. Sometimes Autism parents talk about “losing” their child to Autism (even though their child is still completely alive, just…not neurotypical).
There are sometimes things I find inconvenient or annoying about being Autistic. My sensory issues are usually handled with things like wearing sunglasses or “ear protectors” (noise cancelling. headphones). However, I don’t really like crowds and they’re an invitation to a meltdown/shutdown. And there are a lot of cool events that happen in crowded places, and I usually either opt out or spend several days recovering from being around so many people. Also, going non-verbal can be scary if I’m not around people who are willing to use text-based communication with me. And when I can’t avoid them: meltdowns and shutdowns are the worst.
However, there are definitely things I love about being Autistic. To the point where if someone offered me a so-called “cure”, I don’t think I’d take it, because I wouldn’t want to give up the good stuff.
Let me introduce you to an Autistic super power that we also share with our ADHD brethren: hyperfocus. Hyperfocus is basically the mythical state that neurotypicals refer to as “flow.” There’s all sorts of tips and tricks for trying to achieve a flow state, because you can get a lot done when you’re in flow. It’s basically immersing yourself in a topic or an activity, sometimes for hours, and it feels like time isn’t passing. You can get so much accomplished! Or as I like to think of it, hyperfocus for me is like I am a snake unhinging my jaw and swallowing knowledge whole.
Unfortunately, it’s hard to pick what you hyperfocus on (especially if you have ADHD or executive dysfunction). It has to be something that grabs your interest; I can’t just turn on hyperfocus for anything. It would be too powerful, so the universe had to nerf this skill somehow.
Hyperfocus is just…a lovely way to spend your time. It’s easier to tune out sensory issues because your whole being is just consumed by The Thing You Are Focusing On. And I generally find it rejuvenating rather than tiring. Although if I try to push it further than its natural cycle, I can get exhausted almost immediately. There is a rhythm to hyperfocus/flow, and it often means you can’t force the attention…you just have to kind of ride along until it runs out naturally.
I am lucky in that I find most academic topics interesting. So when I was in school, it was relatively easy for me to learn new things. I got curious about the topic, and then I unleashed my hyperfocus and just rode it until I had learned whatever I was supposed to learn.
Unfortunately this meant that the few times I was bored in school, learning became this impossible morass. Sometimes I learned an entire chapter in a day or so when the teacher planned to spend weeks on it. At this point I definitely had a hard time maintaining focus, because I wanted to move on to more interesting things, not go over the same topic. Another downside is that I don’t really have study skills; I either learn things completely and immediately at once, or I memorize just enough to pass a test and then forget it. (This is a common “gifted kid” problem.) I don’t know if there is a way for me to more slowly learn something that is difficult and doesn’t tap into my hyperfocus, because honestly I’ve never really had to learn. Every superpower has a price, right?
Hyperfocus becomes exponentially more potent when combined not just with something I am curious about, but with a Special Interest ™. You may be familiar with Autistic special interests because allistics tend to complain about our special interests: some very common ones are learning everything about trains, or Horse Girls ™ learning basically everything there is to know about horses. (Note: people who write the diagnostic criteria for Autism have historically overlooked Autistic special interests as they occur in cis girls and trans people).
Here’s an example of some of my special interests:
dogs, cats, and animal behavior
history, particularly the history of the African diaspora
new research on my chronic illnesses (for example, fibromyalgia, MCAS, POTS, hEDS/HSD)
human anatomy (as pertains to areas of my body that hurt)
knitting, spinning yarn, and fiber arts history
It’s generally easy for me to hyperfocus on my current special interest. It’s like I’m playing a video game and I have multiple stacking skill buffs; boss fights become a piece of cake.
I specify “current” special interests because my special interests rotate. For example, I used to be into Everything Horses. I was in elementary school and read every Saddle Club book I could get my hands on; every Misty of Chincoteague book. I read non-fiction books about horses. I did a science fair project on horse evolution. When I learn about a special interest, I learn a lot of different aspects of a particular topic. Until somehow my brain gets full or has enough or something, or in the case of horses when I discovered that I actually did not really like riding horses competitively and that was what most stable classes are geared towards. And then I moved on to dogs, which has become one of my lifetime special interests even though I do not currently have a dog.
More recently, I went through a period where I learned everything I could about knitting. I taught myself to knit, and then the next month I knit a baby sweater. In about 48 hours. Sometimes I wonder where exactly the line is between my own hypomania and special interests + hyperfocus. I used to not know what special interests and hyperfocus were, and so when they would happen I would be afraid that it was a sign hypomania (and then the inevitable deep dive into depression). It blocked a lot of joy from my life, because I tried so hard to resist spontaneously learning everything I could about a topic. As I’ve relaxed about this, it has helped both my autism and the way I manage my bipolar II.
I also taught a friend of mine how to knit, and they are quite a successful and prolific knitter now. But when we’ve told other knitters how I taught my friend, they’ve been surprised. I teach how I learn: the broad outline of a topic, at once, so you can understand all the different parts and the principles behind them. For me, once I understand the basic underlying principles of something, I can learn and do and try new things so much faster. Each new piece of knowledge fits into the pattern of how this new exciting thing works.
How are you supposed to start a project if you don’t understand what kinds of yarns are used for what kinds of projects? How are you supposed to pick knitting needles if you don’t understand that bamboo needles are easier for beginners, but metal needles help you knit faster? Dear readers, my friend may not have absorbed everything I said that night (which is why I provided them with a handout), but they learned a lot about knitting much faster than your average beginner.
It is good to have appropriate outlets for special interests, because sometimes special interests can result in a common social disconnect. An allistic person making so-called small talk might say, “Oh, what are you knitting?” And because I tend to think about special interests as like, the entirety of it, it’s very difficult to parse down a short answer like, “A hat,” which is what allistic people seem to expect. If I don’t realize what is happening, I can embark on an informative presentation on the history of this particular hat pattern as used during World War II knitting; where I got the fiber and its emotional significance; how I’m making up the pattern based on Barbara Walker stitch dictionaries and what those are and how great Barbara Walker is.
It can be really hard to not just…launch into sharing all this information. Because I find it so interesting, and I want to share, because wouldn’t most people find this interesting? It’s so cool, and also it’s dominating my brain and it’s all I can think about so it can be hard to think of anything else to talk about. This is why I (and some other autistic people) tend to do well with say, knitting groups, where everyone actually is interested in talking about the benefits of Kitchener stitch.
Without these kinds of outlets, it can be really lonely as an Autistic person: there can be so much going on with us about trains or knitting or whatever, and people often don’t want to hear about it because allegedly that’s not how conversations work. Whereas when I’m with other neurodivergent people, I can often conduct a sort of exchange: we trade off talking about our special interests. And honestly, I may not know what a friend is actually talking about when they’re doing a deep dive into their special interest, but I love their enthusiasm. I love seeing the light come on in their eyes. I love giving them an outlet to talk about what they love without shame, or worrying that they’re secretly boring me.
This is one of the frequent disconnects between allistics and autistics in terms of making conversation, and I wish sometimes that allistic people would learn to meet us in the middle. Maybe they’d learn something about what we’re excited about, or maybe they’d just enjoy watching the joy in our eyes. And I’d personally be happy to give them a chance to talk about whatever they want, if they wouldn’t get that bored spaced out look that means “I am tuning out what you are saying because this isn’t how I do conversations.”
Special interests and hyperfocus also help me cope with brain fog. Brain fog is a symptom of fibromyalgia (and other conditions) that causes impaired cognition. Things like aphasia, difficulty concentrating, difficulty reading paper books vs ebooks (possibly just a me thing), etc. It can make reading and processing information very difficult. I struggle doing things like processing verbal information over a phone call or remembering a simple series of numbers. However, if I can somehow initiate my hyperfocus and/or special interest, I can sometimes spend a few hours with much fewer cognitive difficulties. It’s like it somehow balances out. But again, I don’t always get to pick what I hyperfocus on, and I don’t always get to pick my special interests.
Currently, I’m really tempted to go back through this post and change the format into the streamlined essay pattern I learned in school. An introduction, some sort of thesis statement, individual paragraphs, and a conclusion. This post is more reflective of how I think. It’s not stream of consciousness, but it’s a lot more thoughts about hyperfocus and special interests than I would share if I was trying to write a traditional essay. It’s the details and the how of it and the underlying structure, so maybe you can really understand what I’m talking about.
If you take away one thing, though, let it be this: hyperfocus and special interests are delightful and as satisfying as stimming. Let autistic kids like trains (or horses).
I’ve been meaning to read Dr. Afrin’s book Never Bet Against Occam: Mast Cell Activation Disease and the Modern Epidemic of Chronic Illness and Medical Complexity basically since I started suspecting I might have MCAS about two years ago. However, one of my many symptoms is “brain fog” and reading a book with a lot of scientific language was not something I could do. I am in a bit of a low brain fog period (weirdly, this seems to happen every November/December although this year is even better than last year), so I thought I’d give it a try.
For anyone else considering reading it, the language is simpler than your average scientific paper. Dr. Afrin tries hard to define scientific terms before using them, although sometimes I’d forget and have to look up what “epistaxis” meant (it’s the scientific term for a nosebleed). Additionally, because I’ve been reading a lot of “MCAS for laymen” type articles, I already knew some of the terminology.
The book centers around various case studies of MCAS patients. The first few case studies are people who came to Dr. Afrin, a hematologist, with unexplained symptoms, and discusses how he first learned about MCAS. Later chapters focus on body systems or common symptoms, with case studies in each chapter to emphasize the many different presentations of MCAS. The end of the book focuses on potential future research, possible causes of MCAS, and problems in the US healthcare system that currently make diagnosing/treating MCAS difficult.
That being said, I’m just going to jump right in to certain things I’ve learned from this book:
Mast Cell Activation Syndrome (MCAS) can present in completely opposite ways in different patients, or even in the same patient. For example, some patients Dr. Afrin saw had an excess of red blood cells; others had decreased red blood cell counts. Both had positive MCAS tests, and both resolved with treatment. MCAS presentation is heterogenous.
Many of Dr. Afrin’s MCAS patients reported temperature dysregulation. Often they felt cold most of the time (or ran a temperature below normal, around 96 or 97 F); however at certain times of the day they would have sweats, feel overheated, and their temperatures might increase to 98 or 99. Obviously this symptom alone is not enough to suspect MCAS in someone. However, it might be enough to pursue testing in combination with a medical history of unexplained multi-system inflammation.
Many MCAS patients report infection-like symptoms without any active infection. For example, UTIs which resolve after taking antibiotics, yet the urine culture turns out to be negative. Chronic sinus “infections” or “ear infections” that seem to resolve after taking antibiotics, yet the culture turns out to be negative. Dr. Afrin posits that these “sterile infections” are mast cell flares; people tend to think that antibiotics helped when in fact the mast cell flare just naturally ran its course.
MCAS patients frequently frustrate allergists, because it’s not uncommon for allergy testing to say someone is allergic to everything tested…until the patient is retested and the test reports that the patient is allergic to nothing.
Mast cells don’t just release histamine; they can in fact release over 200 chemicals. (For more about this check out the COPE with Cytokines entry on mast cells which Dr. Afrin references in his book, and consider making a donation as it’s run by one researcher in the Philippines.)
In certain case studies, Dr. Afrin checks serum levels of norepinephrine, prostaglandin D2, ferritin, and chromogranin A. Not all of these tests are specific for MCAS (for example, an increased ferritin level can indicate inflammation), but some of them are ones I haven’t heard of before.
Dr. Afrin also requested that pathologists retest stored patient biopsies. Many of them were “normal” under traditional tests, but revealed an excess of mast cells when tested with tryptase and toluidine blue stains.
Currently, there is no way to predict which MCAS patients will respond to which treatments. Dr. Afrin suspects that eventually, we may find that different mutations to mast cells produce different symptoms. If this is the case, we may find that mutation A responds to treatment A, mutation B to treatment B, and so on. He suspects that we may be several decades of research from this kind of treatment.
In the mean time, because there is currently no way to predict which treatments will work for which patients, Dr. Afrin suggests that patients start with the least expensive treatments and if those fail progress to more expensive treatments.
If you have a family member with MCAS, your risk of developing MCAS is “roughly triple the risk in the general population.” However, mast cell mutations among family members are frequently completely different from each other.
Many people describe a particular trigger, stressor, event or exposure that seemed to be the beginning of their mast cell symptoms, such as pregnancy or an illness or a move to a different state. However, in a detailed clinical history, Dr. Afrin was often able to locate symptoms of mast cell activation syndrome in childhood. It seems likely that mast cell activation syndrome may be present since childhood, but that it “steps up” the symptoms after these types of stressors.
Dr. Afrin thinks that the most likely explanation for this diversity of mutations and the effects of life experiences on mast cell activation to be that there are “inheritable genetic fragility factors” which express themselves in a multitude of different ways.
The “therapeutic goal” for MCAS patients is not to eliminate symptoms completely, but to “feel significantly better than their pre-treatment baseline the majority of the time.”
When someone with MCAS has achieved a better baseline and then they experience a flare, it is very important to look over the events of a few days to a few weeks previously and try to identify what changed (for example, new medications or new environmental exposures).
Dr. Afrin recommends that MCAS patients not take nutritional supplements unless they have clear, documented evidence that this is needed. He states that most MCAS patients don’t have nutritional deficiencies if they are eating a varied diet, and also points out that we could potentially react to something in our multivitamins or other supplements.
The next two are really important so I’m just going to quote them verbatim: “MCAS patients should eliminate from their regimens all interventions that have not clearly resulted in significant, sustained improvements.” And also, “when a new intervention is tried which yields major benefits, the possibility should be considered that other interventions that have long been part of the patient’s regimen might no longer be necessary.”
As much as you can, eat a “normal”, balanced and healthy diet.
When MCAS patients cannot tolerate a high dose of a medication, it is better to reduce the dosage but take it several times a day rather than try to consolidate the entire dose into one pill. (For example, take 5 mg 2-3 times per day rather than 10 mg once a day).
Pain management is difficult for MCAS patients, because many MCAS patients react badly to NSAIDs, narcotics and -caine anesthetics.
When adjusting medications for MCAS patients, it’s ideal to change only one thing at a time so one can properly determine what is helping and what is causing problems.
There’s a lot of very interesting information in Dr. Afrin’s book. I’m going to conclude by talking about some of the research Dr. Afrin hopes will be done in the future. He hopes that a sample of definitively diagnosed hEDS patients will be tested to see what proportion also have MCAS, and whether mutations in genes that regulate mast cells can be found. He also says that this type of study needs to be done for fibromyalgia, ME/CFS, irritable bowel syndrome, inflammatory bowel syndrome, POTS, Gulf War Syndrome, and GERD that does not respond to treatment, and other chronic inflammatory diseases of unknown origin.
I certainly hope this research can be done sooner rather than later.
I’ve been interested in trying the Muldowney Exercise Protocol (outlined in Living Life to the Fullest with Ehlers Danlos Syndrome) for awhile. However, I struggled to find reviews from patients online other than tentative posts about how people were trying it and it seemed promising so far. What IS the Muldowney Exercise Protocol? Why might it work?
I finally caved and got the book, and I’ve been working on it for about six weeks. I’m going to try to talk about both my experiences with the book as well as an outline of what you’re getting in the book, so people can better decide if they feel like shelling out $50-60 for the book.
Kevin Muldowney’s book is designed as a guide for roughly a year’s worth of stabilizing exercises, as well as a daily maintenance program. There is a definite problem for EDS patients seeking physical therapy in that many PTs don’t know how to treat hypermobile patients or patients with EDS. Muldowney’s book has sections specifically for your physical therapist, so that the two of you can basically follow the instructions and hopefully see results.
My physical therapist agreed to read it thinking that she was going to know everything in the book, but came back surprised that Muldowney recommends against massage or other techniques to stop muscle contracture (unless you are actively strengthening that area). She said it’s basically “backwards” from how she would usually do physical therapy.
The reason Muldowney makes this recommendation is because for folx with EDS, our muscles are stabilizing our skeletons. So if they relax before we strengthen them, we are more likely to sublux/dislocate. Muldowney’s book is designed to help us strengthen our muscles so that they can hopefully decrease subluxing/dislocating joints.
My favorite part of the Muldowney protocol so far is that my physical therapist manually aligns my sacrum when I go in. It feels so good to have my joints where they’re supposed to be! She’s also been teaching me ways to realign it myself in the interim period.
You can theoretically do the Muldowney protocol without a physical therapist, as the instructions and pictures of exercises are all there. However, the part you will miss is having someone reset your joints, which can help you be *able* to do the exercises. Additionally, while Muldowney recommends seeing a physical therapist three times a week, I do not have that kind of energy or insurance coverage so I am going once a week.
The exercise portion of the Muldowney protocol involves four sections of exercise: the first is strengthening/stabilizing your sacrum (pelvic area). The second is strengthening/stabilizing your mid-back and upper body. The third is strengthening/stabilizing your lower body. Finally, the book includes some #goals exercises for things like twisting and throwing motions, as well as providing a maintenance program.
The maintenance program involves an hour to an hour and a half a day of exercise, which is somewhat daunting but I’m very motivated to continue as it seems to be helping.
So how is it helping?
Well, the other day I stepped weird and rolled my ankle. I’ve had this kind of recurring injury since I was eight years old, and when I do that I almost always end up with swelling, pain, and a week or two of recovery time. This time? I DID NOT INJURE MY ANKLE JUST BECAUSE I STEPPED WEIRD.
I’ve also been able to double the time I can stand before my hips start complaining (from 5 minutes to 10 minutes; I can technically do 20 but I injure myself).
I had noticed that if I walked at my normal pace, I aggravated my SI joint and hip pretty soon. However, with these exercises I am better able to walk at my normal, somewhat fast pace (although probably not for long, yet).
I’m also just enjoying being able to do progressively harder things with my body. There are exercises that I tried in physical therapy in 2016 that I definitely couldn’t do, which I am doing the *advanced* version of now. Exciting!
I will say that I probably couldn’t have done the Muldowney protocol in 2016, or at least not the more advanced stages of it. I was really suffering with adenomyosis (a condition where uterine lining grows and then sheds within the muscular wall of the uterus), and my abdomen was a ball of pain and inflammation. I tried doing pelvic floor physical therapy, and I really couldn’t progress to harder exercises because every two weeks I’d have to stop because of some shenanigans with my uterus.
I also had untreated Mast Cell Activation Syndrome, which was causing a lot of exercise intolerance. When I tried to exercise, I’d end up with a histamine response that had me floored. I also was struggling more with my Postural Orthostatic Tachycardia Syndrome, which can also cause exercise intolerance. One advantage of the way the book is set up is that all the early exercises are done laying down, which means that if you have POTS you won’t be fighting gravity at least at first.
I might have been able to do the first two exercises in the book, which are marked as “level 0.5” and basically involve tightening your transverse abdominus muscle and your glutes.
Anyway, if you are currently bedbound you might need to do some very gentle physical therapy before you can really make progress with Muldowney. Additionally, if you are exercise intolerant (whether because of MCAS, PEM from ME/CFS, or whatever) this may not be the book for you.
However, if you have EDS and are looking for ways to stabilize your muscles and you are interested in starting an exercise program (you just don’t know what to do!) then this book may be very helpful.
One of the notable symptoms of Ehlers Danlos syndrome is “subluxations”, which are defined as “partial dislocations.” In other words, the bone doesn’t completely come out of the joint, but it may slip partly out of position so that it is rubbing “wrong.”
A frequent question among those who are newly diagnosed with EDS or who suspect EDS is “what do subluxations feel like? how do I know I’m having one?” And also, “how do I get the joint back in position?”
For me, subluxations follow the following pattern:
A popping or clicking noise, possibly accompanied by a pulling sensation. This may or may not be immediately painful. If it’s a joint that tends to slip in and out all the time, then it’s frequently lax enough that I don’t feel pain right away.
My surrounding muscles spasm as a last ditch effort to stabilize the joint. However, because the joint is already subluxed they effectively lock the joint in the wrong position.
I experience pain from the muscle spasm and the tension between my muscles and joints.
This lasts until the joint randomly “pops” back into place (often followed by a popping sound). When that happens, I immediately feel relief from my symptoms — unless the joint has not popped back into place properly, and is simply subluxed in a slightly different position.
So how do I treat subluxations? Well, for serious subluxations you may need to seek medical attention from a physical therapist, massage therapist, etc. The same goes doubly for full dislocations.
However, I find that reversing the process by which subluxations happen generally works well.
When I’m experiencing pain from muscle spasm, I first work to loosen the muscles. Sometimes I have had luck using a muscle relaxing medication, but remember those are contraindicated for EDS because they can temporarily increase your rate of subluxations. So I often save that as a last resort, and try things like:
epsom salt bath (if tolerated)
pain cream (such as NSAID cream, if tolerated; lidocaine, if tolerated; CBD cream, if tolerated)
myofascial release and acupressure
Once the surrounding muscles are not “locked” in place anymore, then I can begin to try to gently shift the joint back in the proper position. This is generally a matter of finesse and you may need assistance from another person, but it can involve:
gently pressing on the painful area while opening and closing the joint
squeezing against something (for example in the case of hip subluxations, another EDSer suggested squeezing a ball between your legs, or pressing legs out against a bathtub)
Slowly rotating or bending the joint until it clicks back into place
First aid. Treat as for any sprained joint, because the surrounding muscle tissue will be inflamed due to the recent subluxation. The standard acronym is RICE for rest, ice, compression and elevation. Consider also bracing the joint for awhile after it has subluxed, or use KT tape or an ace bandage if you don’t have a brace for that joint yet.
Here are some of the things I’ve found help with hip pain. I am not a doctor and this is not a substitute for medical advice.
Hip Bursitis and IlioTibial (IT) Band Problems
Bursitis is caused when your bursae (little sacs of fluid in between your joints) get inflamed. As such, things that reduce inflammation tend to help.
Your IT band is a rope-y band of tissue that travels from the outside of your hip to the outside of your knee. It helps stabilize the hip and knee. It also travels over several bursae, and when it becomes tight it can cause or aggravate bursitis.
This website offers a diagram which may help you picture what is going on with your body.
rest helps to reduce inflammation after the intial injury; however it is important to begin a gentle exercise program soon after the injury starts to recover.
ice pack wrapped in a towel, apply to affected area for 10-15 minutes
ice massages (these are excruciating, but help: take a piece of ice and rub it very vigorously and without staying in one place long, directly on the area where it hurts for 30 seconds)
IT band stretches, as the IT band goes right over your bursae. Consider consulting a physical therapist.
Using a foam roller (see above link for instructions) or a foam massage stick. A foam massage stick may be easier to use if, like me, you have limited mobility.
orthotics for your feet (flat feet can cause posture issues which can aggravate bursitis and other hip problems; consider consulting a podiatrist). I use PowerStep Medical Insoles, and they are the most comfortable orthotics I have ever worn. I need to replace them about every six months. I have also had luck with Vionic shoes, many of which come with orthotics.
NSAIDs (non-steroidal anti-inflammatory drugs, like ibuprofen) if you can tolerate them. Not recommended for those with MCAS.
placing a rolled up hand towel behind your low back when you sit or drive somewhere may help with postural issues that aggravate hip bursitis/IT bands.
after your body has recovered from the initial pain of bursitis and some of the inflammation has gone down, you may benefit from addressing structural or postural issues which caused the bursitis and IT band issues. Did you overuse the joint? Use it in a way that is not ergonomically sound? Consider consulting a physical therapist for help with this.
SacroIliac Joint Problems and Piriformis Syndrome
The SacroIliac Joint is where your tailbone and your pelvis come together. It is supposed to be a non-moving joint. However, if you have hypermobility issues, the joint may become unstable. The piriformis muscles are bilateral muscles that travel from the edge of your SI joint across the buttocks to the hip. In cases of instability of the SI joint, they tend to tigthen up in order to stabilize the joint. When the piriformis muscle is tight, it can press on the sciatic nerve and cause pain all down the leg, as well as aggravate restless leg syndrome.
To relieve this pain, it is necessary both to release the tension in the piriformis muscle and build strength in the entire area to take strain off the piriformis. Other methods to stabilize the SI joint may also be helpful.
Image showing an anatomical model of the sacrum where it joints to the ilium, the piriformis muscle running from the sacrum to the outer edge of the hip, and the sciatic nerve running under the piriformis muscle.
avoid staying in one position for too long. Rotate between standing, sitting, and laying down as you are able.
avoid sitting on hard surfaces, such as metal, wood or plastic. Consider purchasing a coccyx pillow if you must sit on a hard surface.
Consider using a U- or C- shaped “maternity pillow” to provide additional stabilization to your SI joint while you are sleeping. If you do not wish to invest in a pillow, consider at least sleeping with a small pillow between your knees.
Use the topical pain cream of your choice on your piriformis muscle. Examples include icy hot; Ben gay; lidocaine gel/patch; CBD cream; voltaren gel; etc. Just don’t use them all at once!
Gentle SI joint stretching and strengthening exercises. Consider consulting with a physical therapist; a therapist who specializes in pelvic floor dysfunction may be particularly helpful if you need exercises adapted to your ability level or have complex pelvic problems. You may need to release your piriformis before you begin these exercises.
Use a foam roller or foam massage stick on your piriformis muscle, or ask for assistance from someone you trust to use a foam massage stick on your piriformis muscle.
Consider using a TENS unit on your piriformis muscle (placing pads on either end of the muscle, being careful to stay away from the spine itself). Do not use a TENS unit if you have a history of epilepsy or seizures, if you have a pacemaker, or if using a TENS unit is otherwise contraindicated.
Place a tennis or raquet ball underneath each piriformis muscle. Sit or lay on them for approximately five minutes. It will be excruciating, so stop when you need to. However, it can greatly help relieve piriformis tension.
Sit in a warm epsom salt bath.
Wear a thermacare wrap (available at most pharmacies; use coupons or buy on sale if you can) on your buttocks underneath your clothes. My friend uses the back sized ones; I prefer to use a “neck and shoulder” thermacare wrap on each buttock.
Sit on a small electric blanket turned to a comfortable temperature. I find heat on my SI joint and piriformis greatly enhances my ability to tolerate sitting upright.
placing a rolled up hand towel behind your low back when you sit or drive somewhere may help with postural issues that aggravate hip bursitis/IT bands.
If you can tolerate kinesiology tape, consider using KT tape to stabilize the SI joint. KT tape is available at sports stores and many pharmacies.
Correct postural/ergonomic issues, particularly at workstations or computers where you spend long periods of time. A physical or occupational therapist may be able to help with this.
Acupuncture, massage, craniosacral therapy, or dry needling may help relieve pain.
Again, none of this is a substitute for medical advice. There are other causes of pelvic pain than those listed here. Consult a doctor or other medical professional as needed.
I used to believe that if I was good enough, my chronic pain would stop.
If I simply tried all the things random strangers recommended, maybe I would feel better. And so my life became a never-ending striving to be the kind of person chronic pain doesn’t happen to: I tried yoga, acupuncture, reiki, drum sound healing, meditation. I ate anti-inflammatory foods, gave up gluten for months, ate probiotics. I shopped at Whole Foods even though I couldn’t afford it.
I subscribed to toxic positivity, and tried to police my thoughts and banish negativity. I tried cognitive behavioral therapy. Mostly, I just felt guilty about still thinking negative things.
Nothing worked to magically banish my pain, because chronic pain is by its very nature… chronic.
As humans, we want to believe that problems have solutions. That there are answers and treatments, even cures, for chronic pain. And maybe there are, but we’re certainly not going to find them without a LOT of research funding.
How to explain the inexpressible suffering of chronic pain? The inevitable counterpart of chasing a cure is self blame. If I just tried harder, found the right foods to blend into a smoothie.
Or maybe, I’ve wondered, I brought this on myself. If fibromyalgia is partly due to trauma… maybe if I hadn’t been raped, maybe then I’d be pain free. I used to think this.
On my worst days, I still do.
Much of this can be traced back to the 19th century Prosperity Gospel, the idea that what happens to us on Earth is somehow an outward expression of our inner morality.
If you’re sick, you must somehow deserve it. If you’re not chronically ill, it must mean you’re a virtuous person.
These. Are. Traps.
It took me years of suffering to realize that I was asking the wrong questions. Instead of “how can I fix myself?”, I needed to be asking, “how can I live my best life with chronic pain?”
My friend with CRPS says, “My life may be the size of a teaspoon, but it’s mine.”
It’s helped. I’m less apologetic for who I am, and more forceful in asking for accommodations.
I’d like to pretend I’ve stopped chasing cures, but the possibility, the hope of relief is something I will probably never give up. Even though it’s exhausting. Even though I’m absolutely sick of medical tests, of trying new meds, of kale.
I’ve had some luck with low dose naltrexone, physical therapy, bracing, and sticking needles in my body (either acupuncture or dry needling). Your mileage will definitely vary.
Where is the balance between acceptance and hope? Where is the line when chasing cures becomes a form of self flagellation? Where can I put down this belief that I am a burden?
I’ve wrestled with this. My novel (currently in revisions) wrestled with what someone would do to rid themselves of chronic pain.
Because I would do a lot. I have done a lot. But the pain is still there, my most constant companion, my forever friend. Til death do us part.