Straw Ban Bingo Card

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.

On Twitter recently, Alex Haagaard wrote an excellent thread about the ways disabled people are often good for the environment.

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 :

straw_ban_bingo

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

“The Disabled”

mention sea turtles

*

“maybe they just didn’t think about disabled people”

“why can’t you just bring one with you”

FREE SPACE

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

eugenics

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.  

Eating with MCAS: scones

[this post discusses food and dietary restrictions]

On Twitter, Mara Wilson has been complaining about how hard it is to find a good gluten free scone recipe. I’ve also been craving scones, and there are currently a lot of things I’m not eating right now because of my current flare. So I made some.

A plate of some gluten free vegan scones I made in the middle of the night because why not

Without further ado, here is the recipe. It’s based off my mom’s school cookbook, which is delightful. These are British scones, by the way. If you’re unfamiliar with British scones, they’re like a Southern biscuit but less savory.

Comfort Scones

Fruit scones

8 oz Bob’s Red Mill 1-to-1 gluten free flour
1/2 tsp salt
1 tsp baking soda
2 tsp cream of tartar
1-2 oz vegan butter
2 oz currants or raisins (optional
Sugar if desired
Approx 1/4 cup unsweetened non-dairy milk
3 tbsp lukewarm water plus 1 tbsp tapioca starch or corn starch

For the glaze (optional): 1 tbsp unsweetened non-dairy milk whisked together with 1.5 tsp agave or maple syrup

1. Pre-heat oven to 425 F and prepare a baking tray.

2. Combine flour, salt, baking soda, and cream of tartar. Mix with a fork or whisk to remove lumps.

3. Make sure your tapioca “egg” is ready. Set aside for a few minutes.

4. Rub fat into dry ingredients. [Note: if you have a food processor, just pulse the dry ingredients with the vegan butter a few times. It saves energy, plus it keeps the butter cold. When combined, transfer mixture to a mixing bowl.]

5. Add sugar and dried fruit (if desired) and mix to combine.

6. Make a well in the center of the flour mixture. Quickly whisk your “tapioca egg”, then add it to the dry ingredients. Stir to combine.

7. Slowly begin adding non-dairy milk to the mixing bowl. If you have motor control issues, pour a little milk into a mug or glass, then use the mug to add milk to the mixture. When the dough is right it will be soft, cohesive, and not too sticky.

8. Place dough on a floured surface (ideally, somewhere you can sit down.) Press dough until it is about 1″ high, then cut out circles and place on prepared baking sheet.

9. Brush the tops of the scones with the glaze.

10. Bake for 7-10 minutes, until the scone sounds hollow if you tap it.

11. Don’t burn yourself, but also these are delicious when hot.

Note: I froze some uncooked scones to heat later, as these are best when fresh out of the oven.

This recipe makes approximately six scones; feel free to double the recipe if you want a big batch. They don’t keep particularly well once they’ve been baked, but they disappear quickly.

They also cook up really nicely in a toaster oven, which is good if you have POTS because it doesn’t make your kitchen as hot as the big oven, and also it turns off automatically which is great if you get distracted.

Here is the consistency of dough that you’re aiming for:

A round flat piece of scone dough waiting to be cut.

I hope you enjoy these!

ETA: a caveat, I have found that things made with gluten free flour tend to taste better when they’re warm. So if your room temperature scone feels a little chewy, consider wrapping it in a clean linen/cotton dishtowel and microwaving it for 10 seconds or s

MCAS meds that work for me

Sometimes people ask me what kinds of medications I take for MCAS. I have been reluctant to answer because MCAS management is so tricky; we can react to the medications that are supposed to help us, or even the excipients in those meds.

What I’m sharing here will not work for everyone, but it’s potentially a starting point for trying to figure out what meds might work for you.

I’m also including some supplements that I have found helpful.

Histamine blockers

Histamine blockers can be divided into subtypes based on which type of histamine they block. Currently, there are a number of H1 blockers, one commercially available H2 blocker, and research is being done on H3 and H4 blockers.

H1 blockers (antihistamines) are further divided into generations based on when they were invented.

First generation antihistamines tend to be stronger and faster acting. This includes meds like Benadryl and Atarax (also known as hydroxyzine or vistaril). I try to save these meds for emergencies, because I don’t want them to stop being effective when I need them and it’s also possible to have a rebound reaction with Benadryl. I do take a moderate dose of hydroxyzine daily, because it generally quashes my night time symptoms enough so that I can sleep.

Second generation H1 blockers are less likely to cross the blood brain barrier and thus tend to cause less sedation. There isn’t scientific agreement about whether third generation antihistamines exist, or if they’re all just second generation antihistamines. Examples include Allegra, Claritin, Zyrtec, and Xyzal.

I have experimented with a lot of different second generation antihistamines, and Xyzal seems to work best for my body. I kept trying to switch to Zyrtec because it’s less expensive, but it just didn’t work as well for my body.

An additional note is that one should be careful switching between brands of antihistamines, because different manufacturers use different excipients (dyes, fillers, etc). Additionally, if you notice a sudden worsening of symptoms right after starting a new bottle of meds, you might want to double check that the manufacturer hasn’t changed the inactive ingredients.

As far as H2 blockers, I still miss my Zantac (which was recalled everywhere due to a carcinogen issue). Currently there’s basically just Pepcid. My doctor told me that taking an H1 blocker and an H2 blocker together can help both be more effective. I know some people who just cannot tolerate pepcid. Hopefully we will have more options again soon.

Tricyclic antidepressants

Tricyclic antidepressants (TCAs) are an older class of antidepressants, and there is some evidence that they can cause more side effects than SSRIs. (Others might argue that we simply have more documentation of potential side effects.)

TCAs have also been used to treat chronic pain, prevent migraines, as well as allergic reactions. I take a low dose of doxepin as prescribed by my doctor.

A note of caution

It can be tempting to try to get one’s symptoms under control by taking many over the counter antihistamines. However, there is a risk of anticholinergic toxicity. For more about anticholinergic toxicity, please see this thread. Please consult with your doctor or pharmacist for more information about anticholinergic medications.

Mast Cell Stabilizers

MCAS symptoms occur when mast cells sense a threat and degranulate, releasing lots of chemical messengers to help fight off the attack. However they’re kind of hypervigilant little cells in those of us with MCAS. Antihistamines work by binding to some of the chemical messengers after they’ve been released. Mast cell stabilizers work by making it harder for mast cells to degranulate in the first place.

From what I understand, mast cell stabilizers tend to work fairly locally. Which means that to get them to work, they need to be applied directly to the area where mast cells are getting cranky. This is why the mast cell stabilizer cromolyn comes in so many different forms: a nasal spray; a nebulized form; an oral form.

Taking a mast cell stabilizer may still cause an overall reduction in symptoms. Often mast cell degranulation can cause a cascade of symptoms in various parts of one’s body. Preventing this cascade from starting (or escalating) can thus theoretically prevent some flares.

I have read some intriguing research from Dr Afrin in which he injects cromolyn via a catheter to relieve urinary symptoms of MCAS. I hope that more research and clinical trials on this become available.

The other problem with mast cell stabilizers is that they tend to be poorly absorbed. Additionally, I have found that for me, it’s best to ease into taking them very gradually.

Oral cromolyn (gastrocrom) is a prescription mast cell stabilizer taken in liquid before meals. I just started taking it, and it’s been extremely helpful for me.

Additionally, there are some over the counter mast cell stabilizers including NasalCrom (or generics) and Zaditor (or generics). NasalCrom is a cromolyn nasal spray; Zaditor is an eye drop made from ketotifen. Ketotifen is another type of mast cell stabilizer.

Some mast cell patients get a compounded form of ketotifen to take orally for gastric symptoms, usually through mail order compounding pharmacies. I have not tried this myself.

Additionally, some patients have gotten creative with making a lotion form of a mast cell stabilizer to help with rashes and itching. There are obviously risks to using medications off label. This is not medical advice or a substitute for talking to your physician.

Additionally, there are several naturally occurring mast cell stabilizers that are sold as supplements. These include quercetin and luteolin, among others. They are a type of flavonoid.

I have heard from other MCAS patients that if you react to salicylates, you are more likely to have a mast cell reaction to flavonoids. Please use caution introducing any new supplement.

Personally, I take an oral quercetin supplement, as well as a luteolin supplement. Luteolin is naturally found in chamomile.

Montelukast

Mast cells release a number of chemical messengers, including cytokines. Montelukast is a prescription medication which is often used to treat asthma. There is evidence that it can help mitigate the inflammatory effects of cytokines.

I take montelukast sometimes during flares.

Palmitoylethanolamide (PEA)

I first read about PEA in this article by Dr Afrin and others. I got very excited when I found a PEA and luteolin supplement, until I found out the brand was called “Mirica” (as in miracle). I have been burned be a lot of miracle cures.

This spring I had a big flare and tried it out of desperation. I didn’t notice any immediate change, but my baseline slowly started to improve. So far I’m still taking it, and I kind of hate that it seems to help my symptoms.

Vitamin C

I have read that Vitamin C helps your body dispose of excess Histamine in your bloodstream, and also that it’s an important supplement for connective tissue disorders. It seems to be helping.

Woo stuff

I don’t really know the science behind why any of these things work other than some vague “it helps with inflammation.” It may or may not help you.

Aloe vera juice (for a long time this was literally the only thing that helped my nausea)

Aloe vera gel (I use it topically or in baths and it really helps calm stuff down)

Colloidal oatmeal (in baths, for ?my skin irritation)

Itch Nix (a “natural” poison ivy treatment my itchy skin likes)

Conclusion

Ideally, the primary method of managing MCAS is to identify triggers and reduce exposure to them. However, taking medications can also help in the day to day management as well as flares.

Please discuss treatment options with your doctor.

This list is not comprehensive, for example it doesn’t mention EpiPens because I haven’t done much research on them.

Good luck and I hope you have happy mast cells!

POTS First Aid

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Image of a sunset over a beach with an orange sky. This image is copyright under a Creative Commons Attribution-NonCommercial-NoDerivs 3.0 Unported License. Artist: Marc R.

Note: the following is not a substitute for medical advice from a doctor.

It’s summer here, which is a prime time for POTS flares due to all the heat. I thought it might be helpful to outline the steps I try to take when I notice a POTS flare starting, to try to mitigate the effects and how long it will last.

What is a POTS flare

First off, I’d like to talk about what a POTS flare is. When I first developed POTS symptoms, it took me three years to figure out why I kept falling over and feeling lightheaded, etc. The delay in treatment did not help things, and so for awhile even after my diagnosis I experienced symptoms all the time. My baseline level of symptoms was really bad all the time.

Nowadays I’m better at knowing how to manage POTS (which is hopefully going to be another post, however these resources helped immensely). On the average day, my baseline has improved so I’m not super tachycardic or dizzy unless something happens to make that happen. For example, spending time in the heat, changing positions a lot/too fast, standing for long periods of time, or sitting without elevating my legs.

When I start to experience symptoms that are worse than my baseline, that counts as a flare. The strategies for managing a flare are somewhat different for improving my baseline. For example, laying down with my legs elevated can really help a flare. If I did that all the time, then my body would compensate for the position by reducing my blood volume, which would mean my baseline might be even worse.

POTS Flare First Aid

1. Get cool. Heat is a big dysautonomia trigger, so if I’m somewhere that’s too warm I need to get to somewhere cool. Winter is lovely because when I overheat I can just step outside.

Some other ways to get cool include:

  • taking a cool shower. I know, I know, showers suck for POTS. I’m not talking about actually using soap. I mean just turning on the water, stepping in it til my body temperature decreases enough, and then getting out. (A friend of mine runs a cool bath in summer, and when she gets too hot she just sits in the bath for a few minutes whenever she needs to. I find getting out of the bath very hard, so use what works for your body).
  • sponge bath/cold compress. Can’t get in the shower? Use a damp washcloth to wipe down your body. Let the water evaporate rather than drying it off. Dysautonomia can cause us to sweat less, so this is basically creating the same effect manually. I also find putting a damp washcloth on whatever area is hot really helps.
  • ice pack. I have an ice pack with a built in cover that is soft even when it’s frozen. Actually, I have several; they’re a godsend. Note that if you have CRPS, ice will make the pain worse. If ice doens’t work for you, use another method.
  • eat or drink something cold. suck ice chips/eat a popsicle/drink a cold electrolyte drink.
  • air conditioning.
  • use a fan.
  • lay on a tile floor. is this the best thing for my joints? No. Is it effective if I really need to get cool? yes. sometimes I will just put my bare feet on a tile floor (usually they’re in slippers so I can use my orthotics.)
  • remove excess clothes. I’ll be honest, when I’m able to I just get naked during a POTS flare. Obviously, the ability to do this depends on if I’m at home or not.

A note on water: I have MCAS in addition to POTS, and I react to my local tap water. I haven’t gotten it tested, so I’m not sure why exactly. It could be the chlorination, it could be some type of heavy metals. Previously when I tried to use water to cool off, I would just turn red and feel itchy and uncomfortable and it wouldn’t relieve my symptoms.

Now that I have a showerhead filter, it actually helps. MCAS and POTS are frequently comorbid, so if you have this type of reaction you may want to look into seeing if a filter helps. Additionally, some people with MCAS react to having water on their skin (including their own sweat and tears.) I don’t have personal experience with this, but I encourage you to reach out to MCAS patient communities for coping strategies.

2. Hydration + electrolytes. Increasing fluid and salt intake can help POTS symptoms; please consult your doctor to determine the proper amount for your body.

Some of the hydration solutions I’ve seen discussed as helpful by people with POTS include:

  • Gatorade/Powerade
  • Nuun tablets
  • Liquid IV
  • TriSalts (note: fewer additives, more MCAS friendly)
  • Vitassium salt stick supplements (also seems to be MCAS friendly for many)

I also sometimes make a homemade drink based on a Peace Corps recipe for dehydration. It’s water, a pinch of salt, a pinch of sugar, and lemon juice. Note that salt water is sometimes used as an emetic (thing to make you vomit) in health care settings, so if you get nauseous when drinking this then you’re probably using too much salt.

3. Get blood to your brain. One of the symptoms of POTS that I really struggle with is called “venous pooling”; basically excess blood settles in my hands and feet and causes swelling. Swelling can put pressure on my nerves, causing pain. Additionally, it means there’s less blood actually getting to my brain, which is a problem. Treating this symptom proactively has also reduced the frequency of POTS-related positional headaches.

If I’m able to, laying down with my feet elevated above my head can help. As mentioned above, this is not a long-term solution as doing this all the time can exacerbate POTS symptoms.

However, I find that if I’m able to elevate my legs above my head as soon as I notice a POTS flare starting, then I can sort of nip it in in the bud. It lasts maybe a few hours instead of a few days.

If you’re in public and there’s nowhere to lie down (and you haven’t just collapsed on the floor because, well, POTS), then even just elevating your feet can help.

Using a hot pack on my head also helps. This may sound counterintuitive since POTS is exacerbated by heat; I also can’t use this technique if my environment is too warm. However, heat tends to increase blood flow to an area. So frequently what I do is use a heat pack on my head and cool packs on other part of my body to kind of manually guide my blood back up to my brain.

Clenching and unclenching the muscles in your legs can also encourage blood flow and decrease venous pooling.

Compression garments may also help. However, I find that when I’m in the midst of a flare, they’re just too hot and also are likely to set off my MCAS/dermatographism. I use them more for prevention of POTS flares / management of day to day symptoms.

My physical therapist has also helped me use lymphatic massage to help deal with POTS. The lymphatic system is basically your body’s garbage disposal system. If I have a lot of excess fluid in my hands and feet and abdomen, it makes my circulatory system work harder. Manually activating my lymphatic system can tell my body to start clearing out the excess fluid. An important thing to note when doing lymphatic massage is that you need to start at your lymph nodes. Otherwise, you can just move the “backlog” of excess waste from your hands to your armpoits, or from your feet to your groin. (Source: my physical therapist.)

4. Treat MCAS if you have it. As mentioned above, POTS flares exacerbate MCAS, and MCAS exacerbates POTS. Therefore, when I experience a POTS flare, I try to preemptively treat MCAS based on the assumption that an MCAS flare is incoming. Rescue meds for MCAS is hopefully going to be another blog post.

However, some common rescue treatments for MCAS include:

  • taking an H1 antihistamine if possible. Note that I try to save Benadryl for extreme emergencies due to the potential for a rebound reaction. I try to use second or third generation antihistamines (e.g., Claritin, Xyzal, Allegra) rather than first generation antihistamines whenever possible, as first gen antihistamines tend to have more side effects and also I want them to be effective in emergencies.
  • magic masto lotion.
  • Vitamin C helps the body clear excess histamine more effectively, so consuming some extra Vitamin C helps me deal with MCAS flares.
  • aloe vera gel. I haven’t read a lot of the science on how aloe vera allegedly helps reduce inflammation. I was really desperate one day and someone else with MCAS recommended it, and I’ve found it really helps me. It also has a cooling effect, so it can really help when heat is causing skin issues. I use this brand for topical applications; I also have a friend who can’t use that brand because it sets off their MCAS. Please do your research and use caution when trying new products.
  • mast cell stabilizers. I take oral mast cell stabilizers (currently quercetin, PEA, and luteolin, as well as gastrocrom) daily. I have the ability to take an extra dose of some of them without exceeding my daily maximum; I usually do in flares.

5. Avoid triggers. When I’m recovering from a flare (or still in one), triggers that I might be able to tolerate are more likely to send me back into a flare. For me, this applies to both POTS triggers and MCAS triggers.

Communicating What You Need

As POTS flares tend to decrease oxygen to the brain, they can make it very difficult to recognize you’re having a POTS flare and remember what to do about it. I’ve definitely gotten so lethargic from a POTS flare that I passed out in a hot room for hours, which was the opposite of helpful.

With practice, I’ve gotten better at noticing my early “warning sign” symptoms and taking steps to treat them proactively. However, it also helps that people in my everyday life also know what to look for and what can help. When I’m having a POTS flare, the brain fog can affect my ability to form coherent speech and also figure out what to say. I sometimes slur my words, or can’t think of the words for what I need.

If you have people in your life that you would feel comfortable asking for help during flares, then it might be helpful to show them this post or make your own list of “warning signs” and also things that they can do to help. Can they get you an ice pack? Bring you electrolyte drinks? Communicating these things before a flare happens can be very helpful.

Additionally, there’s a company run by a disabled person that has laminated cards for both explaining POTS flares and asking for help. These may be especially helpful if you’re out in public or around new people. They can also serve as a reminder for people who are familiar with your POTS flares.

If you have trouble with verbal speech but can still type what you need, then there’s an app you can install on your phone to communicate with people nearby. You can also show them a pre-written explanation for what is happening and what you need. You could also create instructions in a notes app, or make them your lock screen.

Conclusion

Hopefully, some of these tips help and can help you have a safe, enjoyable summer.

Eating with MCAS: adapting homemade pesto

[CN: this post discusses food and dietary restrictions/allergies]

I hesitate to share recipes and foods that are MCAS friendly, because people with MCAS can have such a vast array of potential triggers that there’s really no universally MCAS safe food.

I thought instead I could walk readers through a somewhat low energy recipe, and potential ways to adapt it for you. Fittingly, this recipe has very few ingredients and also I know people who have issues with literally every single ingredient. So this really is more of a formula you can play with rather than a “you must follow every step” recipe.

Also, what counts as “low energy” varies from person to person, and there have definitely been times where I was too sick to make this “easy” recipe.

This recipe is based off a “Basil-Cilantro Pesto” from Veganomicon, which is a really good book to have if you can’t eat dairy (or simply choose not to). In addition to recipes, it includes instructions for cooking a wide range of vegetables and ideas for common substitutions used in vegan cooking. It’s the reason I know how to bake delicious food without eggs.

Pesto is really versatile. Obviously you can put it on the pasta of your choice. It’s also good on sandwiches, crackers, mixed in with vegetables, and probably a lot of things I haven’t ev

On to the actual cooking!

The ingredients called for in the original recipe are:

  • 2 cups loosely packed fresh basil leaves
  • 1 cup loosely packed fresh cilantro
  • 1/2 cup slivered or sliced almonds
  • 2 cloves garlic, crushed
  • 2 tbsp. lemon juice (from about half a lemon)
  • 1/2 tsp. salt
  • 1/4 cup olive oil

So when I look at this list of ingredients, my mind does a kind of mental conversion that looks something like this:

  • 3 cups fresh herbs or greens [can be a mix of different things, for example fresh kale or spinach or mustard greens, savory. If you don’t react to eugenol, you could use fresh oregano or thyme, although the flavor will be stronger.]
  • 1/2 cup nuts or something nut like [for example, cheese, or possibly nutritional yeast but for that I might have to adjust the amount and increase the amount of liquid I use]
  • Something garlicky in desired amount. [Personally, my body rejects raw garlic, so I sauteed mine. You could use garlic powder, fenugreek, asoefatida, garlic infused oil, or whatever your preferred garlic substitute is. You could also leave it out and place more emphasis on the citrus. You can get pretty creative with this ingredient.]
  • 2 tbsp. something tart [e.g. vinegar, tomato juice, apple cider vinegar. Alternatively, you could use sumac but you might have to add more liquid to compensate for using a dry spice.]
  • desired amount of salt [if you have POTS and need salt, you could probably slowly add more salt until you get a good taste. This recipe also works with zero salt.]
  • 1/4 cup vegetable oil [this is a recipe where it’s important to use a liquid fat rather than a solid one. Today I used canola oil because that was what I had. Because I used oil to cook the garlic, I decreased the amount of canola oil I added.]

A Note on Basil:

I’m lucky because my mom is a gardener and also likes pesto, so she grew A Lot. I literally just walked outside and picked this (the purple leaves are a different variety of basil):

A colander full of fresh basil leaves

However, I know that a lot of people don’t have the energy or space to grow herbs, and that getting fresh basil from the store can be expensive. You can definitely substitute fresh dark greens if desired.

Additionally, if you buy fresh basil from the store and like growing plants, here’s my tip: cut about 2″ of stem with some leaves from the top of the plant. Place the stem in a glass of water with the leaves above the water level, and place it in a sunny windowsill. Soon the stem will start creating roots, and then you can transfer the baby basil to a container. Note that basil doesn’t like being transplanted, so choose a pot with plenty of room. Boom, endless kitchen basil.

Combining ingredients:

If you’re really tired you can honestly just assemble all the ingredients, stick them in a blender or food processor, and pulse until combined.

If you have a little more energy, you can assemble all the ingredients, and add them in the food processor in this order:

1. Nuts (if using) – pulse until you have pieces smaller than a blueberry

2. Leafy greens / herbs, sour thing, salt, garlicky thing. Pulse until combined and leaves are small like the herbs in your spice cabinet.

3. Slowly add a little vegetable oil, pulse, add more, repeat until you have a smooth paste.

Kitchen Tools to Make Your Life Easier

There are a lot of potential kitchen access tools. I want to focus on just a couple. One is a kevlar kitchen glove, which I use when I’m using a knife. My coordination is not great, and this reduces accidental injuries.

Another is this garlic and spice crusher. It’s shaped kind of like a mushroom and fits my hand really well. I basically use it to smash garlic cloves so it’s easier to peel them, and also it’s great for crushing garlic to release the flavor. If you ever need to make nuts smaller, it’s also pretty good for that. Obviously it’s optional, but it’s just a really good tool and also much safer than trying to smash garlic with the side of a knife.

I also really like this set of visual measuring cups I got. They’re shaped like the amount they measure (e.g. a half cup is shaped like half a cup). I find they really help me not make Kitchen Brain Fog Measuring Errors, and also I don’t have to read tiny print.

Finally, my number one tip for saving energy when cooking is free: if you can do a task sitting down, then do

Storing Your Food

Due to MCAS, I try to eat low histamine foods. Food releases histamine as it ages, which means I can react to a “safe food” that’s been in the fridge for a couple days.

So I’ve started freezing food in individual servings. For pesto, you can of course cook a bunch of pasta, add the pesto, and freeze servings of that for maximum ease. However, my freezer space is understandably kind of limited.

Personally, I like to freeze my pesto in an ice cube tray until it’s frozen through, then stick it in a freezer bag or another container. You can also measure servings onto a plate, freeze them, etc. However I find with my coordination, it’s better to use something with a lid.

Cute little balls of pesto in an ice cube tray

I Scrolled Down For the Recipe

  • 3 cups herbs or dark greens
  • 1/3 cup nuts or cheese
  • Something garlicky, optional, to taste
  • 2 tbsp. lemon juice or substitute
  • Salt, to taste
  • 1/4 cup vegetable oil

Assemble ingredients. Add everything but oil to blender or food processor, pulse to combine. Slowly add oil, pulsing in between additions, until all oil is added and you have a smooth paste.

On relearning how to listen to my body

[TW this post contains non-graphic mentions of sexual assault and abusive relationships; gaslighting; medical gaslighting; PTSD]

I have spent most of my life ignoring what my body was trying to tell me, because I had so many messages from society and doctors and even my friends that I was “making a big deal out of nothing.”

I’ve written before about how this relates to my connective tissue disorder. There’s kind of an ongoing grief over thinking about all the sprains and fatigue and other issues from my childhood that I thought were normal because basically everything told me they were. (Note: shout out to my parents and especially my mom for basically always believing me.)

Today I want to talk about this in terms of Autism and my sensory needs, as someone who self diagnosed as an adult.

I was taught to ignore my body

As a child, there were lots of things that “bovvered” me (i.e., bothered). Shirt labels, obviously. The seams of clothing. But also unexpected change. My mom once tried to enroll me in an after school program, and I cried the entire time because it was so noisy and chaotic and different from what I was used to. She didn’t make me go back. I also struggled with the transition from summer vacation into the school year as well as the reverse.

The problem was that I couldn’t articulate why these were problems. I only knew that I didn’t like them. This was filed under “weird kid quirks” up until maybe third grade. By then, I knew they made me different from my peers, and also that being different was not a good thing.

Although to be honest, I didn’t think my feelings were out of the ordinary. I just thought they were one of those things people didn’t talk about and just lived with, and somehow basically everyone else was better at coping with t-shirt labels and crowds and everything else.

When I was in fourth grade, I switched schools and the bullying started. It was around then that I really started masking my neurodivergent traits as a kind of survival mechanism.

I was hospitalized for mental health issues in my late teens and early twenties. I didn’t mention my sensory issues (again, because I thought people just didn’t talk about them), and no one ever asked.

Non-epileptic seizures

One summer day in my late twenties, my body started shaking.

At first it was just my leg, but then it became my whole body. It came in waves, and it wouldn’t stop. My parents called an ambulance, and I was rushed to the hospital for a series of tests: an MRI and a three day EEG, which measures your brain waves to test for seizures.

The results showed that my brain wasn’t having epileptic seizures during these episodes of shaking. (Note: some seizures don’t show up on EEGs, but I don’t know much about them). The doctor told me that I was having “pseudo seizures”, and refused to use the less stigmatizing term PNES (psychogenic non-epileptic seizures) which my father had found during basic internet research. When I tried to push for additional care or answers, the neurologist suggested admitting me to the psychiatric unit. So I went home.

I tried consulting with other neurologists, but once they heard that I’d been diagnosed with PNES they all told me I needed to see a psychiatrist. I asked my psychiatrist about them, and she said it was more of a neurology issue.

In desperation, I even asked my therapist, who also didn’t know how to help. At this point I was terrified to be alone in public, because I was justifiably concerned that I would have an episode in public and some well meaning stranger would call an ambulance. I didn’t want the bills, and I didn’t want the trauma of yet another doctor telling me about how I was wasting their time with “pseudo seizures”.

I realized that if I wanted the mysterious shaking to stop, I was going to have to figure it out myself.

Trauma and EMDR

Once medical providers learned I had PTSD due to sexual assault, there was a strong implication that this trauma was responsible for my non-epileptic seizures.

I had chosen my therapist because she was trained in EMDR, a technique which is supposed to specifically help with trauma. It helped me tremendously, although it was incredibly hard work.

One of my “homework” assignments from therapy was to make a list of triggers, so that we could work on decoupling the traumatic memory from the stimulus.

I noticed something very odd about my list of triggers. Some of them were obviously connected to being sexually assaulted, such as a particular smell or song that reminded me of that time. Others were things which, in retrospect, had triggered me for as long as I could remember: fluorescent lights and crowds and the feeling of the cotton ball they stick in bottles of medicine.

I started wondering if there was some sort of traumatic event from my childhood that I didn’t remember, but I couldn’t figure out what it could have been. I tried to reverse engineer it by thinking about what all these mystery triggers had in common. Eventually I realized they all had to do with negative sensory experiences.

Researching sensory issues led me to Sensory Processing Disorders, and also Autism. However, when I read the diagnostic criteria for Autism written by “experts”, it didn’t sound familiar. It was only when I read work by Autistic people about what it’s like to be Autistic that I felt a lightning bolt of recognition.

At the time I thought that I was triggered by certain sensory issues because of Autism, and also I had a history of trauma. I now feel that years of societal gaslighting about my sensory experiences was traumatic, and also that it primed me to view abusers denying my experiences as a normal thing.

There are too many wonderful Autistic people writing about their experiences to mention, but if you want to learn more some good starting places are:

Autistic Self-Advocacy Network

Autism Women and Non-Binary Network

Ask an Autistic

I briefly tried to bring up being Autistic to my psychiatrist, but she said that I was “too social to be Autistic” and “there’s no point in getting a diagnosis because it’s not like it would change my treatment.” I had decided that 2020 was going to be the year I pursued an official diagnosis, but before I summoned the energy to actually call for an appointment with a specialist, coronavirus happened. As of this writing, I am still “only” self diagnosed. (Note: there’s honestly nothing wrong with self diagnosis.)

Listening to my body

Once I learned more about Autism, I started wondering how anyone could have missed it. Each childhood memory seemed to have some new revelation about how I experience the world, and also a fresh wave of feelings about how I spent so long thinking that I was easily “bothered.”

I finally recognized that my “weird quirks” were actually legitimate needs. I wanted to start actually acknowledging my access needs, but first I had to figure out what those were. I had spent so long trying to ignore them that I honestly didn’t even know.

I started with the most obvious: clothes. Since my chronic pain started, I had switched to more soft and loose clothes. But to my surprise once I actually went through them, there were still a lot of clothes that I bought on sale or looked “cute” or “professional” that were really just agony to wear. I started by just sorting them out and putting them in a giant storage bin, I guess in case I missed them? I finally got rid of them all earlier this year.

There were so many issues like this, and I don’t have time or energy to share all of the details right now. Suffice it to say that I got results. My non-epileptic seizures basically stopped. I’ve had one in the past six years, and that was when I was fighting with an abusive ex.

Additionally, my psychiatrist — the one who said that an Autism diagnosis wouldn’t change my treatment — was incredibly impressed with “how well” I was suddenly doing. I never figured out how to explain to her that I was doing well because I ignored her advice, and started taking my needs for routine and stimming and avoiding the bad sensory things seriously.

Mast Cell Activation Syndrome

Since I first started re-learning how to listen to my body, I’ve learned a lot more about myself. It’s an ongoing process of being aware of my body, discovering more about it, learning what those experiences are actually called, and adapting my life so that I’m actually providing my body with what it needs.

My doctor gave me a clinical diagnosis of Mast Cell Activation Syndrome (MCAS) a few years ago. MCAS was only recently named by the scientific community, and it seems to frequently co-occur with Ehlers Danlos Syndrome as well as Autism.

I’ve been on a similar journey in trying to identify and avoid my MCAS triggers. I’ve found that some of them are also “Autistic nopes” (i.e., the sensory triggers I’d learned to avoid).

For example, one day I was low on clean laundry, so I wore some of the itchy clothes from the container I’d shoved to the back of the closet. They actually gave me a physical rash, which went away once I removed the trigger and treated it with a mast cell stabilizer.

I don’t know where the precise boundaries are between Autism and MCAS, and clearly there needs to be a lot more research. (Preferably less funding would go to finding an “Autism gene”, and more to things like “why do so many Autistic people have trouble sleeping, and how can we help them sleep better?” But I digress.)

I also don’t know whether my non-epileptic seizures were purely psychogenic (i.e. caused solely by sensory issues). Perhaps the stress of ignoring my sensory issues caused mast cell degranulation, which manifested as non-epileptic seizures.

Whatever the case, I’m incredibly grateful to others Autistic people (and those with MCAS, EDS, et al) for sharing their experiences. I honestly feel so incredibly lucky to live in a time where we have words for these experiences, and that the internet allows us to connect with each other.

I also hope that in the future, this knowledge is more widely available and understood.

Review: OXO Vegetable Chopper

[this post discusses food and dietary restrictions]

I have been cooking a lot because MCAS means I react to a lot of common ingredients and it really helps if I know what I’m eating instead of having to play reaction roulette with ingredients like “spices”.

I used to buy a lot of pre-chopped vegetables to save energy, but unfortunately a lot of those can trigger mast cell issues too. (Sometimes they’re rinsed in a preservative; also food naturally releases histamine as it ages and it does so faster the more surface area is exposed to air.)

I have a Cuisinart food processor, which is what I had been using to chop things like onions. Maybe I’m just not using it right, but I find it’s hard to get pieces in the right shape and also it gives onions a weird taste. Also they’re very wet when I use the food processor, so I have to try to dry them before sauteeing them or they don’t cook right. It’s extra work I don’t need.

I decided to look for alternatives, and found that OXO makes some vegetable choppers. I have never had a bad experience with an OXO product, possibly because the company was started by a disabled person and her husband to create accessible kitchen tools.

This tool is no exception. It really does make perfectly diced veggies.

A couple of caveats from my experience:

I was trying to cube potatoes and also had brain fog, so I ran a couple potatoes through before I realized it was basically making square cut fries. If you want cubes of a round vegetable, you need to slice it into rounds and then use the OXO chopper. This still saves a lot of work. Also if you have weirdly shaped slices because of coordination issues, they still come out mostly regularly shaped.

Personally I also recommend using a Kevlar kitchen glove when slicing your vegetables to prevent injuries.

Obviously it doesn’t peel vegetables for you, but I also have an OXO peeler which is a lot easier to use than the awful metal peeler from my childhood. (They’re not paying me to hype OXO, their products are just that good.)

I really appreciate that the vegetable chopper has an easy pour thing at the back, but I kept forgetting it was there and accidentally spilling vegetables all over the counter. Probably this is just a learning curve.

There’s a way to detach the clear plastic piece from the choppy bit for cleaning. This is the only not great part of the design IMO. Maybe I’m missing something, but so far the only way I’ve found to detach it is kinda hard to do.

Basically there are three little dots on the side, and you press the dots while also reaching inside and pushing in the other direction.

This requires hand strength, dexterity, and the ability to convince my hand to do both motions simultaneously. It’s also not very intuitive, so I can see myself struggling with this due to cognitive issues like brain fog.

I think you could probably clean it without removing this piece by soaking it and maybe using a chopstick to reach any vegetable pieces stuck at the back. OXO also makes other vegetable chopper designs, and it’s possible one of them addresses this issue.

Overall, I love the OXO vegetable chopper and it’s already become one of my favorite kitchen tools.

Just because I did something once doesn’t mean I can do it again

[TW for discussions of COVID-19, exercise, food, loss of ability]

I thought I had found the perfect routine ™.

For most of 2019, I could do one complex task per day. I had spent the previous two years mostly bedbound, which meant for that time I could do maybe one complex task per week. If I was lucky.

In 2019, I focused on doing my physical therapy every day; this often meant physical therapy and eating something I could microwave were the only complex things I did. I spent the rest of my time laying on heating pads, listening to podcasts, coating myself in pain cream, playing Netflix in the background, and playing simple phone games.

About halfway through the year, I injured my foot. Then in the fall, I got diagnosed with a stress fracture. Still, I persisted with my physical therapy, even though it meant going slower and adapting my exercises so I didn’t put weight on my foot. For months, I had to wear a pneumatic boot that altered the way I walked.

The stress fracture still hasn’t healed; it might never heal, apparently you can live with a broken sesamoid bone. But despite that, in early 2020 I was doing the best I had done since maybe 2012.

I was starting to be able to do two complex tasks per day, which meant that in addition to physical therapy, I was sometimes able to do something for myself. Sure, a lot of days I was cooking MCAS friendly foods and freezing them for days when I didn’t have energy to spare. But some days, I could go out with friends; I could write a little bit. I started to knit again. During all of 2019, I made a hat (one) that was in the simplest of stitches. It took me months. So far this year, I have made a whole cardigan and three pairs of socks.

I was doing all the self care I was “supposed” to do, that everyone tells you that you “should” do. I was eating right; exercising; taking care of my mental health. I was even pursuing MCAS testing in the hopes of getting Xolair injections.

Even then, I was afraid. I knew this kind of recovery was probably not permanent.

In 2012 I was put on a three week course of doxycycline for suspected Lyme disease. I felt better…like, completely better. I went to my GP and she pushed on all the spots you use to diagnose fibromyalgia, and I tested negative. I started wondering if I was cured.

Then my course of antibiotics ended, and my symptoms all came roaring back. I tried pursuing more antibiotic therapy and waded into the murky quagmires of debate over chronic Lyme. This post is not about that. I believe in my case, I was benefiting from the anti-inflammatory properties of doxycycline rather than its antibacterial effects.

It was an emotional roller coaster. I thought I was better, then I wasn’t. Then I was a lot worse for awhile. Then things sort of evened out to a mostly less-bad-than-before-but-still-bad-sometimes. Throughout it all, I blamed myself whenever my symptoms got worse.

We don’t get those narratives in the media. We get memoirs and movies and articles about how someone had an awful illness, and it was very bad and hard, and then they did the right thing or doggedly pursued treatment until they found the right one, and then they got better. Period. They “got their lives back.” Meanwhile, so many of us are still out here living our chronically ill lives.

I appreciate more complicated narratives, like what Jen Brea has been sharing about her recovery from CCI / tethered cord surgeries. She is doing better than she was, but she’s still living with a body that was bedbound for eight years.

I don’t think we discuss fluctuating abilities enough, or what happens when you recover from one thing but still have a chronic, degenerative illness.

The reason I was bedbound for much of 2018-19 is because of instability in my cervical spine, most likely due to EDS or some other connective tissue disorder. It hasn’t gone away, and I may still need surgery. I have just developed ways to cope with it, and now it only flares maybe once every week or two. Plus my physical therapist showed me how to realign my vertebrae, so the pain flares tend to be short rather than lasting for years.

Did I “recover” from cervical instability/CCI? Or did I just get yet more tasks I need to do for self care to hold my crumbling body together?

Back to 2020. I was doing all the “right” things. I was doing better. But I was afraid to hope that it would last. Bodies are fickle creatures, and so is the universe.

With the advent of COVID-19, I’ve been fighting a perpetual flare due to both the stress of a pandemic and also seasonal allergies. It has revealed that my perfect routine is more luck than self-discipline. I thought that I wouldn’t be shocked by this, but the loss of ability has hit me with a fresh wave of grief and frustration.

It goes something like this. The stress fracture and wearing a pneumatic boot for months caused the bursitis in my hips to flare. I was coping with manual therapy once a week from my physical therapist, but now I can’t go to physical therapy because I’m trying not to catch COVID-19. So I started being much more vigilant about doing pelvic floor and hip exercises every day, in addition to upper body and foot exercises. This helped for a couple of weeks.

Meanwhile, the pandemic has disrupted my routine. Stress from that and just *gestures at everything* has made my MCAS-related nausea flare. Exercise makes the nausea much worse, so I was having trouble doing all the things that kept my bursitis and foot pain in check. The pain increased a lot, so I started having trouble sleeping. Trouble sleeping made everything flare harder, and pretty soon I was struggling to cook the meals that were keeping my body happy and physical therapy was an exercise in frustration.

I knew intellectually that my improvement was likely temporary, but did it have to be quite so temporary?

It’s sort of like I’m some sort of juggler, and every piece of self care is another flaming sword I’m deftly tossing in the air and catching. But eventually there are more things than I can handle, or I burn myself on one of the flaming swords and suddenly I am trying to juggle one handed and then I drop everything. And also I am covered in cuts and burns, which means it’s going to be hard to start juggling again. This metaphor has sort of gotten away from me, but I think you get the gist.

My person and I have a joke, which goes something like, “Yay, I found something that helped! Oh no, now I have another thing I have to do every day or else regret my life choices.” (My person also has chronic illnesses.)

There’s also the expense of finding something that sort of helps. For example, my nausea was controlled for awhile with drinking aloe vera juice. However, I can’t drink the cheap aloe vera juice because it tends to have dyes and artificial sweeteners. So the juice I drink is about $1.50 to $2 a day just to feel less nauseous. Of course I pay it, and I drink it, and I’m incredibly grateful that something helps. I just wish it wasn’t quite so much effort, because I don’t always have the energy to do all the things that help. And sometimes I would like to do something else with my day other than just a list of tasks my body demands.

Yesterday on Twitter, Brianne Benness (who hosts an excellent podcast on Chronic Illness, No End in Sight) posted “Do you ever feel like your body is a fickle god that you’re constantly trying to appease?” And yes, exactly that.

Because whenever I feel like I’ve maybe got everything figured out, and yes it’s a lot of work but it’s paying off…something else happens. I break my foot and I can’t meet all my body’s demands. My body used to find something helpful, but now that thing makes me ill. Et cetera.

I’m currently trying to claw my way back to some semblance of my previous routine. I seem to be least nauseous around 4 am, so that is when I’m doing my physical therapy. My sleep is better than before, but I keep waking up in the afternoon before I’ve had eight hours of sleep and eventually that is going to catch up to me. I’m writing this post, which is something I’ve been thinking about writing for awhile. Yesterday I knit some, and I had to pull back because of mistakes like “forgetting to turn the sock heel” approximately five times, but I knit nevertheless.

Self care is a constant game of give and take, of feeling triumphant and then having to reinvent everything because of a change of circumstances. It’s like trying to build a foundation on shifting sand.

And sure, maybe everyone has to deal with change. But I don’t think abled people understand that most of the time, there is no recovery. I don’t think they get that even when we do find something that helps us, we’re not always able to do that thing because of some other conflicting access need.

I don’t think they understand what it’s like to lose the ability to do a thing you love, then find a new thing that you love in a new way, and then lose that, too. And to not be able to talk about it with abled people, because they say things like “I don’t know how you cope, I would die if that was me” or “why do you talk about being sick all the time” or they just quietly fade away from your life because you can’t do the thing you used to do together anymore.

I’m not writing this for abled people, although if someone reads this and gets a new insight into life with chronic illness or certain other disabilities, that’s great.

I’m writing this because there’s no roadmap for this. The message society pushes is that if you’re a “good crip” and you do all the “right things,” then you’ll be rewarded with less pain and more ability. But the universe — and the human body — don’t work like that. Disability isn’t a punishment for not doing yoga hard enough; it’s just something that happens as part of being human.

Not everyone gets these little breaks in pain. But sometimes we do find something that helps, or a way to cope, or something that makes things a little less bad. And we often expect them to be permanent, because every societal narrative tells us that’s the case. So when we crash again (predictably), it can cause unnecessary suffering because we weren’t expecting it. We can end up blaming ourselves for not trying hard enough to get better or some other ableist claptrap. After all, everyone keeps saying that if we only tried hard enough, we’d get better. Therefore if you were a little better and you’re not anymore, by this logic it must be because you’re not trying hard enough.

This internalized ableism can also affect our intracommunity relationships. If we’re doing better than someone else with the same condition, it can be tempting to think it’s because of something we’re doing rather than sheer luck/privilege. I remember when I was about five years in to having a chronic illness diagnosis, but I hadn’t been exposed to very much disability theory. Another disabled person was venting about pain, and I actually suggested they try yoga and explained how they could make a microwave heat pack. Unsolicited. They did not have a microwave. I still cringe now, thinking about it.

It’s very human. If we think we are more able because we “deserve” it, then it feels like we have some semblance of control and insurance against getting worse. Just keep being deserving enough, and you will be rewarded.

Like I said, the universe doesn’t work like that.

If you’re disabled and your symptoms fluctuate, I want you to know that is normal. I want you to know that being sick is not your fault; it’s just a thing that happens sometimes. I want you to know that it’s okay to be sad and frustrated when your abilities change. I want you to know that you’re not wrong or broken for not using 100% of your every waking moment trying to find a cure.  Most of all, I want you to know that it’s okay to make peace with being sick. You don’t have to be a hashtag pain warrior if you don’t want to. You are allowed to rest. You are allowed to not go to the doctor searching for answers. You are allowed to just…be, in whatever way is best for you.

I also want to remind you that the COVID-19 pandemic is stressful. Even if you were already basically doing all the social distancing and handwashing things because of your illness, there is a LOT to deal with. Difficulty accessing food delivery; difficulty finding safe foods in stock; potential medication shortages; potential for millions of deaths. Not to mention the nearly constant barrage of messages that many think disabled peoples’ lives are an acceptable sacrifice.

Stress often makes chronic illness worse. So if you’re flaring right now, that’s a normal response to this situation. You’re not doing anything wrong.

Bodies just do that sometimes.

How I learned to tell what I’m feeling with alexythmia

[TW discussion of inpatient mental health care and mentions of self harm, PTSD, and dissociation]

I remember the first morning I was in a psych hospital for the first time, we all had to introduce ourselves and use a “feeling word” to describe our current emotional state.

I said that I was feeling “anticipatory” because I was on the spot and it was honestly the best descriptor I could come up with.

Anticipatory (adjective): of, showing, or expressing anticipation.

I think the staff and other patients thought I was being a show off jerk on purpose. I was told that anticipatory is “not a feeling word” and made to choose another word from the sheet of smiley faces laughing, crying, etc. They wouldn’t move on until I picked an “appropriate feeling word” so in the end I just sort of picked one at random.

After that, every morning before group I made sure to pick out an appropriate-sounding smiley face. I was no longer actually sharing how I felt; I was pantomiming the emotion that I thought staff expected so I wouldn’t be put on the spot again.

In retrospect, this focus on compliance and using one of maybe twenty approved words to describe my emotions meant that I went over a decade without realizing I have alexythmia, a common though not universal Autistic trait. It took me realizing that I’m Autistic to realize I have alexythmia also.

Alexythmia (noun) – difficulty in experiencing, expressing, and describing emotional responses.

For me it’s not so much that I don’t know what I feel, it’s that it takes me a lot longer to figure out what I’m feeling, why, and how to use words to describe it.

Years later, I was going to meditation sessions and Buddhist Dharma talks weekly. One of the speakers mentioned a technique called “Focusing.”

This was a time when I was actively working through a lot of trauma (and before I knew that I was Autistic and fundamentally needed to stim for my mental health.) So I read the book on Focusing and then cherry-picked what was helpful.

Focusing proper is a very specific technique involving working with another person. Roughly, you focus on what your body feels like and then sort of free associate whatever thoughts pop up until you feel a shift in your body’s response.

I want to make it clear that what I do is technically not Focusing, because I don’t involve another person. (The book suggested doing this over the phone, which is Not A Thing for this Autistic boy.)

What I found interesting was using your body’s response to tell what you were thinking.

As a child, I remember having visceral responses to certain textures, sounds, colors, etc. The feeling of cotton balls still makes me shudder; these feelings never went away. But by late elementary school, I had learned my responses were atypical and I started to mask.

Honestly, I thought that everyone had these instinctive urges that certain things were Very Wrong. I thought everyone else was just better at hiding their yuck response.

Meanwhile certain things were Very Right but for some reason forbidden, like clicking my pen, bouncing a rubber ball when I couldn’t sleep, or listening to the same song approximately one million times in a row. I learned at first to hide these secret pleasures, but eventually I felt ashamed of doing them and just stopped.

It was around then that my mental health tanked for the first time, and I also started engaging in harmful forms of stimming (notably cutting).

Years later, I started to understand my autisticness and I realized that the Very Wrong things signaled potential sensory overload, and the Secret Indulgences were very effective forms of stimming.

I started to pay active attention to my sensory responses in order to avoid meltdowns/shutdowns. In the process, I learned that this visceral feeling of Very Wrong (or Very Right) could also relate to my emotional state.

Nowadays, I still have a hard time articulating what I’m feeling unless you give me 12-24 hours to process. However, my body has three basic responses that I use to determine things like “Do I like this person?” and “Am I upset about something right now?”

These physical responses are:

1. Wrong! Nope! Yuck! Don’t like that.

2. Yes. Good. Soothing. Want more of this.

3. Thinking about how I feel about this is just making me super flustered but I’m fine if I stop thinking about it. I am too overloaded to process this right now; I need to come back to it later.

For example, if I’m watching a show that features a lot of intense emotional content, I can get too overwhelmed to figure out what I’m feeling. For example, basically any episode where someone comes out as gay puts me in this kind of excruciatingly intense feels. I can’t separate my own emotions from the ones on the show; often I need to space these episodes out to avoid a shutdown.

Often, I don’t even need to attach a feeling word to my response. For example, “this stranger makes me feel yucky” indicates that I should avoid that individual; I don’t necessarily have to parse it into anything more specific than that.

On the other hand, “this conversation with my friend makes me feel yucky” could indicate that I need to address a problem. So I generally kind of let the issue percolate in my hindbrain for awhile; I also might talk it out with someone I trust to see if my reaction makes sense and if I need to address it.

Alexythmia is more complicated with PTSD, because PTSD triggers sometimes read as a definite “Wrong.” However that doesn’t necessarily mean a friend is actually doing something harmful; they might have just worn the same deodorant as an abusive person. This is part of when I check my response with other people, to see if I actually need to take action.

I guess technically I have a fourth body response: nothingness and disconnection. This generally means things are so stressful that I have dissociated, and I need to get somewhere safe and reconnect with myself before I make any decisions.

Before I realized that I’m Autistic, I read several books about how to reconnect with your instincts (notably The Artist’s Way and Starhawk’s The Spiral Dance). Based on these books and Focusing, I think that neurotypical people also experience these kinds of “felt sense” yucks. I think they just call them instincts rather than how I think of them as proto-feelings.

Whatever you call them, my life has improved now that I have learned to recognize my physical responses and trust them to guide my actions.

It’s also helped my interpersonal relationships. Before, I would try to follow the advice of “never go to bed angry” (even if I couldn’t tell if I was actually angry, or why). Now I’m able to tell people, “I need more time to process what I’m feeling; when I figure it out I promise I will tell you what’s going on.”

Additionally, when I’m Too Overwhelmed To Know What I Think and other people try to approach me to talk, I used to try to force myself to talk. But what would often happen is that I would say basically whatever I thought might get them to go away fastest, so I could make the Overwhelmed Feeling stop. I’d agree to do things I didn’t actually want to do, or be snippy and rude because those were the only words I could access.

I’m getting better at saying “I actually can’t talk about this now, can we talk later?” It’s not a perfect system, because I know it can be frustrating for other people. Also sometimes I will get this big overblown stressful idea of what they want to talk about, and I’ll keep delaying the conversation because the thought of it is so overwhelming.

I know everyone’s internal experience is different. I offer this narrative in the hopes that maybe it will help give other people ways to describe their internal experience or discover new coping mechanisms, even if our internal experiences are not exactly the same.

How to recover from Autistic overload

[TW this post discusses what sensory overload feels like; there is a short section on abuse; there is also one reference to substance use (specifically, hangovers)]

What is Autistic overload?

Autistic overload (aka sensory overload) happens when an autistic person is exposed to too many sensory inputs at once, overloading our ability to cope. This is also a feature of sensory processing disorder (SPD).

Every Autistic person’s sensory preferences are different, but common triggers for sensory overload include:

A. Flourescent lights

B. the wrong texture, particularly if unexpected.

C. too much noise (even if it’s a noise we like but played at a loud volume)

D. the wrong touch, for example I prefer a firm touch on my arm over a light brushing of fingertips on my arm

E. eye contact

Autistic people can also experience overload due to things like:

A. a sudden change in plans;

B. someone asking a series of questions without giving us time to respond;

C. being hungry without a plan for what to eat; etc.

For myself, I have noticed that this tends to be an exacerbation of my executive dysfunction.

What is executive dysfunction?

Executive functioning is basically like a secretary in your brain that handles things like breaking down a task into steps, deciding what step to do first, etc. Executive dysfunction is when that process breaks down, which is why sometimes it takes me an hour to go to the bathroom because I also need a drink and I don’t know where to start. Executive dysfunction is also present among our neurodivergent cousins, those with ADHD. (People can also have both ADHD and Autism.)

One way that I cope with executive dysfunction is through routines. I have pre-figured out the steps for my morning bathroom routine: when to brush my teeth, when to take my meds, when to wash my face. If my routine gets disrupted, it can take more time and energy to figure out what I’m supposed to do, and I might forget important things (like taking my meds).

It often takes me longer to process my response to questions like “what do you want to do next?” because I’m thinking my answer through to figure out what I actually want (hard with alexythmia) and how to express my wants without accidentally offending someone.

Often people think I didn’t hear the question and repeat it, which can distract me so I forget where I was in my decision tree. Depending on other sensory inputs, I might also be having difficulties expressing my thoughts verbally.

I also have trouble when people ask me an either/or question that doesn’t have an either/or answer. For example, if someone says “do you prefer cats or dogs?” but I actually prefer both. Sometimes I have responded to my theyfriend by just saying “aaaaaaaaaa” like I’m a computer that has error 404’d.

I think this is so overloading because my social scripts say I should pick one of the answers given, and I don’t have words to pivot to my actual answer (particularly if I’m also trying to make my eyes and face look like someone neurotypical). Too many issues like this in a row can cause me to have Autistic overload.

Autistic overload is when sensory inputs and other triggers start to overwhelm my ability to cope

Or, the meltdown pro-drome

I seem to have a limited capacity to cope with overload triggers. Once I’ve passed the threshold, then my bodymind basically forces me to stop via a meltdown or a shutdown.

This is part of why I focus a lot of energy on routines and wearing comfortable clothes. Some overload triggers are unavoidable, like a sudden change in plans. However if I avoid the sensory triggers that I can control, such as clothes that have labels, then I can better cope with the inevitable and uncontrollable overload triggers.

People with migraines often experience a period before their migraine hits full force known as a migraine pro-drome. These symptoms can act as a warning that a migraine is coming, allowing people to preemptively take steps to lessen the severity of the migraine.

A similar process can happen with Autism. For me, Autistic overload is like the pro-drome before a meltdown or shutdown. If I can recognize that it’s happening, I can sometimes take steps to potentially mitigate my reaction or even avert a full on meltdown.

Of course, to do that I first have to recognize that I’m experiencing sensory overload. This can be a challenge, because for decades I thought I was just “being picky” or “making a big deal out of nothing” with regards to my sensory needs. Other people didn’t get distracted and cranky when their shirt has a label in it.

For many years, I thought other people were just better at not complaining about things like itchy t shirt labels. I strived to be more like them: someone who didn’t show how much the label bothered them.

Unfortunately, I was basically exacerbating my mental distress by forcing myself to endure unnecessary overload triggers. I also had less capacity to cope with stressful events, because it was all wrapped up in pretending to be neurotypical.

I have had to relearn how to notice my “overload pro-drome” and what my triggers are.

Still image sequence from The Simpsons of Homer backing into a shrubbery with the text overlay “nope / nope nope nope!” This image references how I feel when I’m experiencing overload

I still have trouble expressing what overload feels like. I communicate it to my loved ones by saying that I’m “nopey” or that “I have the nopes.” It’s a sense that everything is just ever so subtly wrong. I also get grumpy “for no reason”, and I might have trouble talking. During “overload pro-drome”, I’m more likely to talk in sentence fragments or with weird grammar (e.g., “am a hunger” instead of “I’m hungry”).

Re-learning my triggers involved thinking back to “weird things that bothered me as a child”, like for example clothing labels. I then worked on learning to recognize what my bodymind felt like when I was around known triggers. It then became easier to identify other overload triggers, because I had a sense of what The Bad Textures felt like in my body.

Coping with Autistic overload

My strategy for coping with Autistic overload is as follows:

1. Remove myself from the bad inputs

We often do this instinctively; I have an urge to bolt for safety if I’m experiencing Autistic overload. Indeed, once I scared my theyfriend by leaving the grocery store and walking in a random direction; eventually I managed to get back to the car but I didn’t have the capacity to call or text them to let them know where I was.

This is why it’s so important for conventions and parties to have a sensory room: it gives Autistic people a safe place to bolt to.

If it’s somewhere that I can’t leave, such as the emergency room, I try to at least minimize the bad inputs by putting on sunglasses and headphones, turning off the overhead light in my room, etc.

When I’m at home, this can look like going to my bedroom and ripping off my clothes.

2. Slowly add the good inputs and slowly begin stimming

Some sensory sensations or activities just calm me down and make my brain work better. For example: laying under a weighted blanket. Clicking a ballpoint pen. Knitting. Playing with a fidget cube. Other forms of stimming.

Sometimes when I’m overloaded, even stimming is Too Much. Sometimes I just need to lay in the dark and quiet for awhile.

Eventually, I can bear to do things again. Then I might slowly and gently start stimming until my mind feels calmer and my thinking feels more organized.

Communicating your sensory needs

It can also help to communicate this process to people close to you before it happens. When you’re visibly distressed or bolting for safety, people want to help. Usually they do this by asking a lot of questions, which just makes my overload worse.

If you can communicate this process ahead of time, then you can avoid making the overload worse or yelling “GO AWAY” because yelling is the only way you can force the words out.

Loved ones may even be able to help, for example by dimming the lights or handing you a fidget cube.

A word of caution: if you share information about your sensory needs with someone and they use it to intentionally trigger you, that is abuse. You might want to wait until you know someone before you share intimate knowledge about your overload triggers.

Resources for abuse:

RAINN

In development: medical abuse hotline

If you’re worried your overload might happen around strangers, tools like Emergency Chat App and Stickman Communications laminated cards might help.

Many of the needs you might have for Autistic overload are similar to when people have migraines: a dark room, quiet, not having to talk. Sometimes, people are more familiar with what to do for migraines. I saw a Tumblr post suggesting that Autistic people experiencing overload can use “I’m having a migraine” as a script, to avoid having to explain or justify your needs during overload. While some people are still jerks to those with migraines, this trick might help if you are around understanding people.

Overload post-drome

After a migraine, people tend to experience a post-drome phase. They might feel tired, have trouble concentrating, or feel “hungover.”

Again, it’s similar with Autistic overload. You may need to be particularly gentle with yourself during “overload post-drome”, and focus extra hard on avoiding the bad inputs and stimming. Wear your softest clothes, or no clothes. Watch your favorite movie for the millionth time. Try to follow all your routines. Don’t be hard on yourself if words are hard.

Above all, don’t try to muscle through sensory discomfort (unless your safety depends on it), because you might end up right back in Autistic overload.

Ways to cope when you have suspected CCI/AAI

What is CCI/AAI?

CCI stands for craniocervical instability, or joint instability in the area where your skull connects with your spine.

AAI stands for atloaxial instability, or joint instability between your first and second vertebrae. (Basically CCI but one joint lower.)

Diagram of back of head showing where the occupital bone, atlas and axis bones are located.

You are more likely to have these conditions if you are prone to joint instability through a condition such as Ehlers Danlos Syndrome (EDS) The rate of CCI amongst EDS patients is estimated at roughly 1 in 15. However, there have been several documented cases of people with Myalgic Encephalitis (ME) being treated for CCI and having partial or complete remission of many of their symptoms.

Symptoms have been written about extensively elsewhere, so I’m going to save myself some energy and not duplicate those efforts.

Differential diagnosis

This is a concise overview of many of the “rare” conditions which commonly cause neurological symptoms and positional headaches in EDS patients.

Unfortunately for patients, different disorders can cause the same symptoms. It is thus important to rule out other conditions as the cause of your symptoms, so that you get the correct treatment.

To complicate things further, it is possible to have more than one of these conditions at the same time. (For example, Jen Brea had both CCI and tethered cord.)

Personal experience: my symptoms

In my own case, in February 2018 I began suffering from a severe positional headache (worse when upright, better laying down). At the same time, I began experiencing worsening brain fog and dizziness, as well as other symptoms.

The pain was at the base of my neck radiating along the side of my head towards my left eye. When the pain was at its worst, it felt like it encased my entire skull and neck. When I was having a “less bad day”, the pain was more localized to the left side of my neck and head, as well as my left shoulder. (We later discovered that my vertebrae typically twist out to my left side.)

I have had widespread chronic pain since 2005, so it wasn’t like I was unused to pain. Prior to this, my worst experiences of pain had been from adenomyosis coupled with fibroids and ovarian cysts.

While I don’t believe it’s particularly useful to compare chronic pain conditions in some sort of “who has it worse” contest, I do so here for the sake of diagnostic clarity. Adenomyosis is a condition in which endometrial tissue (the bloody tissue that lines the uterine wall and sheds monthly) grows inside the muscles of your uterine wall. When you have your period, this tissue tries to “shed” but has nowhere to go. A similar condition is endometriosis, except in that case the tissue grows throughout your abdominal cavity (and potentially other areas of your body.)

People who have experienced both childbirth and endometriosis/adenomyosis say that the pain is roughly similar. When my CCI headaches were at their worst, the pain was as bad and as debilitating as my adenomyosis at its worst. So, for me at least, it was perhaps comparable to experiencing natural childbirth pain at the base of my skull.

I was effectively bedbound by these symptoms for eight months, and for another year experienced these symptoms intermittently roughly 48-72 hours a week.

I consider myself lucky. Because these disorders are rare and hard to diagnose, many people suffer for years in #DiagnosticLimbo with no relief. I only recovered so quickly due to help from others in the chronic illness community in figuring out what the heck was going on.

Personal experience: my diagnostic journey

I have had Postural Orthostatic Tachycardia Syndrome (POTS) since June of 2012. POTS can also cause positional headaches, brain fog, and dizziness. However in my case, my POTS was fairly well managed as long as I avoided heat and other triggers. Additionally, my POTS flares now usually last a week at most, not months.

I had imaging done of my spine and neck, but the report said I only had typical issues such as bulging discs. I knew from other patients’ experiences that if I had one of the more rare conditions associated with EDS, then my imaging needed to be read by an expert in neurological and spinal manifestations of EDS. (Additionally, some conditions such as occult tethered cord and spinal CSF leaks may not show up on an MRI.)

Unfortunately, there are only a handful of experts in these conditions in the world; I have been on the waiting list to make an appointment with one neurosurgeon for a year.

I did manage to make an appointment with a specialist in intracranial hypertension in another state. He had enough experience with this host of conditions to say that he suspected I had CCI or possibly spinal CSF leaks or both, but most likely CCI.

There are different specialists for CCI and spinal CSF leaks, and different courses of treatment. I knew from other patients that I would most likely be waiting a year or more for an appointment, and I honestly didn’t know if I could survive the crushing pain for that long.

I resolved to try conservative measures, and I began the process of trying to schedule a telemedicine appointment with Dr Paolo Bolognese to see if he had a clearer idea of whether I had CCI/AAI or a spinal CSF leak. At least maybe then I would know where to focus my treatment efforts.

Scheduling with Dr Bolognese involved filling out a patient history, sending supine imaging, and a trial period of traction done by a physical therapist. This last one is controversial, because while traction is used as a diagnostic tool for CCI, it is generally contraindicated for people with any type of cervical instability. I decided it was worth the risk.

If you are struggling and you have imaging discs, there is a FB group “Beyond the Measure” where other patients may help you look for common signs of CCI and other conditions on your MRI. It is obviously not diagnostic, but it can help if you are struggling to decide which specialist to see. (Or especially if you live in a country with no neurosurgeons, and want to know if it’s worth the expense, time and energy to travel to see someone.)

Treatment for CCI

The treatment everyone talks about for CCI/AAI is spinal fusion surgery. Basically, a neurosurgeon places your skull and vertebrae in the correct place, then uses rods, screws, and cadaver bones to fuse the unstable parts of your spine together.

For some people, this surgery is a literal life saver. However, there are many potential complications that made me want to try conservative treatments first.

There is obviously a high risk of infection immediately after surgery. Additionally, the recovery from surgery sounds brutal. Any surgery is extra risky if you have EDS or another connective tissue disorder, as our tissue is so fragile and we can have weird reactions to anesthesia.

After spinal fusion surgery, you have a much more limited range of motion in your head and neck. Doctors recommend that you wear a cervical brace while riding in a car to prevent minor whiplash injuries from affecting your fusion. Many people need additional mirrors to drive, and in some places you’re not allowed to drive while wearing a cervical collar. (Then again, I couldn’t drive with my CCI symptoms anyway.)

The other problem with spinal fusion surgery is that it places additional stress on the rest of your spine. Particularly if you’re already hypermobile, this means you risk instability developing in other vertebrae. Some people need additional fusion surgery to manage this issue.

Short term relief: body work

Out of sheer desperation, I decided to try bodywork options which had helped my EDS pain in the past. I cannot say whether these will work for you, but I offer them as a data point. I also know that I was so desperate from pain that I was willing to try anything that might help it.

If you have something like EDS, it’s important that you trust anyone who is going to touch your body. Fortunately I had a good relationship with two physical therapists in the same practice.

The first techniques I tried that helped were dry needling of my neck and shoulders; craniosacral therapy; isometric techniques done by my physical therapist to gently realign my vertebrae. (The nice thing about EDS is that my joints slide back in fairly easily; the bad part is that they slip out easily too.) These techniques were all done by my physical therapist in the same one hour session once a week.

Note: many physical therapy offices don’t offer an entire hour with a physical therapist; often you spend most of the session with a tech. If you have a complex condition, I recommend looking for one on one physical therapy although I can’t promise you’ll find it.

I know that the reasoning listed for why craniosacral therapy works is kind of woo. I honestly don’t care why it works; I just know that my body likes it. I don’t think it’s a placebo as I’ve had other forms of bodywork that haven’t been nearly as effective.

I found that these techniques gave me almost complete relief from my symptoms for approximately 2-4 days. After that, my connective tissue just couldn’t hold my spine in place anymore and I was back in pain.

Diagnostically, I also got additional verification that my physical therapist could physically feel that some of my vertebrae were twisted on their axis.

Adventures in cervical collars

Many people with CCI find some relief from wearing cervical collars. The specialist I saw recommended that I try one. The hard collars I’ve seen other patients recommend most frequently are the Miami J and the Aspen Vista.

Ideally, my cervical collar would be fitted by an expert, such as a physical therapist or orthoticist. However, my doctor did not want to write an order for a cervical collar as using these long term will weaken the muscles in your neck, which can exacerbate CCI/AAI.

I tried using an Aspen Vista collar; the fit seemed accurate. However, the collar puts pressure on the bottom of your jaw. In my case, this exacerbated my TMJ and gave me a headache flare for three days. I decided not to use a hard collar.

I eventually ordered a soft collar, which has the additional benefit of being a lot more affordable. Unfortunately I turned out to have a mild MCAS reaction to the foam. It helped my pain a smidge, but was a sensory nightmare for me plus it kept giving me a rash.

I eventually managed to sew a cover for it which is basically just a tube of soft scrap fabric that I slide over the collar. I had to recover more before I could make the cover, because sewing requires sitting up and also my pattern making skills are non-existent with brain fog.

Nowadays I wear my soft collar when I’m riding in the car to prevent jolting my spine out of place. I don’t really drive, so I have not had to worry about adding extra mirrors.

Overall, cervical collars didn’t help me much, but they do work for some people with CCI.

Personal experience: acupuncture

The downside of dry needling is that it’s not covered by insurance, and also my insurance only covers 26 sessions a year. (I say only, but I know many disabled people don’t have access to physical therapy.)

Dry needling was relieving my pain for about half a week. I didn’t want to have to stretch my sessions to one every two weeks, plus I might need physical therapy for another condition.

I decided to re-try acupuncture. I had not had great experiences before, but I figured dry needling is just appropriated acupuncture. Also, I am extremely fortunate that my secondary insurance from being a “disabled dependent child” covers 26 sessions of acupuncture a year.

I found an acupuncturist who is gentle, good at consent/alerting me before she touches me, and experienced with inflammatory conditions. Acupuncture can make inflammatory conditions worse if you don’t have a skilled practitioner.

I fortunately found that I also got about 2-4 days relief from acupuncture. I wish I could explain the mechanism. My best guess is that when my vertebra gets twisted, my muscles spasm to protect my joints. Unfortunately they just end up locking everything in the wrong place. My suspicion is that for me, acupuncture helps the muscles stop spasming so that my vertebrae can slip back where they belong.

Personal experience: trial of physical therapy and traction

As mentioned above, I wanted to schedule a telemedicine appointment with Dr Bolognese to discuss whether CCI was an accurate diagnosis. Also mentioned above, he requires a trial of physical therapy with traction. You keep a symptom log of symptoms before, during, and after traction and send it to him for assessment. Risks are also discussed above.

I went into my sessions with low expectations. I had done a little experimenting with my ex girlfriend, who was a trained EMT. If she held my c-spine and lifted up on my skull slightly, it temporarily relieved both the pain and the brain fog. But I didn’t know if mechanical traction would be “too much.”

I know it’s common to get rebound headaches after traction, and again there are risks of overstretching already hypermobile connective tissue.

In my case, traction was kind of magic. I got immediate relief of my primary symptoms (pain, dizziness, and brain fog) — more than when my physical therapist or acupuncturist just adjusted my neck — and that relief lasted about 24 hours. It’s important to note that my physical therapist adjusted my neck before traction to avoid damaging the area.

I cannot in good conscience recommend traction for everyone with CCI/AAI. I know there are a lot of risks, and I also know people for whom it has exacerbated their symptoms.

In my case, I do have a Sanders home traction unit via my insurance. (The over the door units can exacerbate CCI.) I try to use it sparingly because there are so many risks, but it does help when I’m having a flare. However, I try to make sure I put my neck back in before using it.

Personal experience: the Muldowney exercise protocol

I wrote some about my experience with the Muldowney protocol in an earlier post.

I began the protocol because it’s supposed to help EDSers build up muscles and reduce subluxations. It’s divided into three parts (pelvis/core; upper body; lower body).

What I did not expect was that after three months of doing the pelvic/core exercises on most days, my neck vertebrae didn’t twist out as often. I got an adjustment from my PT, then didn’t have any bodywork for two weeks. When I went back in, my neck was still where it was supposed to be.

My personal theory is that my spine is like a wobbly Jenga tower, and stabilizing the bottom of the tower helps stabilize the top.

CCI or EDS of the spine?

I also think in my case, a better description of my condition is “EDS of the spine” rather than CCI or AAI. My physical therapist has noticed (and adjusted) instability throughout my spine. The worst pain has been from instability in my SI joint and the higher cervical vertebrae. However, I’m sure that the instability in my thoracic spine exacerbates these issues (ie, wobbly Jenga Tower).

Starting in about 9th grade, I began having this horrible knot of pain and tightness behind my left shoulder blade and sometimes at the base of my skull on the left hand side. It would generally last about 2-3 weeks, unless I got bodywork which could reduce it to a few days. This is when I first started getting official accommodations at school (having an extra copy of my textbooks so I didn’t have to carry them between home and school.)

Since I have begun getting relief from CCI (or “EDS of the spine”, if you will), the permanent knot has gone away except for flares. I believe that in my case, I have been experiencing periodic instability in my upper spine since 9th grade. With age and damage to my connective tissue, it became harder and harder for my body to keep my spine in place.

I should note that a relative also had a similar knot of tension in her shoulder and neck, but on the right hand side. She began to have nerve degeneration and muscle wasting in that hand. In her case, she was diagnosed with Thoracic Outlet Syndrome causing nerve compression. After conservative treatments failed, TOS surgery relieved many of her symptoms and also made her knot of muscles go away.

I say this because it seems this muscle knot in the neck and behind the scapula is not limited to CCI/AAI. However, I believe it may sometimes be a symptom of EDS or connective tissue disorder. (Our muscles tense up and guard when there is instability; there are a lot of bones in the neck/shoulder so this type of tension could be related to multiple types of instability. It could also be from something as benign as looking down at your phone too much, completely unrelated to EDS.)

I really hope some researcher decides to study this phenomenon, because I know on EDS forums there are sometimes adolescents getting fusion surgery. If there were better ways to diagnose more EDSers early as well as more tested non-invasive treatment protocols, maybe more people could avoid an invasive surgery and also pain.

Additionally, I hope more research is done into the connection between ME and CCI. If you’re interested in learning more about this connection, there’s a FB group just for you run by Jen Brea.

Coping with periodic flares

Nowadays, I am down to a spinal instability flare maybe once a week. However, I am better at self-correcting spinal instability, so I have maybe one or two days a month where I have to spend most of the day prone and doing self care. The other flare days, I can usually correct it in an hour or two. Every few months, I have a stubborn vertebra and need professional help to adjust my neck or spine.

Here are things I currently do for maintenance:

1. The Muldowney Protocol

(See previous section for more details on the Muldowney protocol.)

I have completed the pelvic section and started the upper body section. I had to go slower than expected on some of the neck exercises. In addition, the protocol advises that once you start upper body exercises, you switch to only doing pelvic exercises twice a week.

My body did not like this at all. So instead, I am doing two days a week of pelvic mat exercises plus upper body, two days a week of pelvic exercise ball exercises plus upper body, and three days a week of recumbent exercise bike plus upper body. (I’m also recovering from a stress fracture in my foot, so I try to squeeze in my foot PT too).

2. Minimize sleep subluxations

I made a post about this here.

It’s worth noting that 99% of my spinal flares happen when I flop onto my back in the night and my head ends up being twisted towards my left shoulder for hours. The post above describes steps that have drastically reduced the frequency of this happening. Also sometimes I wake up when I’m in the Bad Position and manage to readjust before my neck subluxes.

3. Protect my neck in the car

I wear a soft collar when on moving vehicles (see above), and I avoid roller coasters.

4. Self-correction method A (passive correction)

As mentioned above, I usually sublux my neck in my sleep. This technique works best if I notice that my neck is out before I get up and have to deal with gravity.

First, I slide a small electric heating pad under my head and turn it on. (I use one like this.) Second, I turn on my left side so the painful side is facing down and in contact with the heating pad. Third, I take a raquet ball and place it under the spot that hurts the most (never directly on my spinal cord). As that loosens, I move the raquet ball to other painful areas every few minutes.

Basically, the heat helps loosen any muscles that are “guarding” the area and keeping things locked out of place. (Standing up causes more guarding, which is why this works best when I first wake up.)

The raquet ball provides gentle pressure under the twisted vertebra and other areas of dysfunction, to help ease them back in.

It generally takes about an hour (or however long my bladder holds) for this process to work.

5. Self-correction method B (isometric techniques)

I learned this technique from my physical therapist. This post is not a substitute for medical advice, please discuss this with a medical professional especially if you think it might exacerbate your symptoms.

Photo of me doing the first step, described below

First, I sit upright and bend my neck slightly forward. I feel along the sides of my spine from my skull down to the base of my neck. I’m feeling for hard lumps that are painful. I want to see which side the vertebra(e) have twisted to.

Photo of me doing the step described below

If I feel that a vertebrae is out, then I keep my neck bent forward and bend it down and to the right, as though I am looking at a pocket in my shirt. (Note, if pain is on the right, reverse the directions.)

Photo of process described below

Next place your hand against the side of your face. If your vertebra is twisted to the left like me, then place your left hand against the left side of your face. (You can also get a friend or family member to do this for you.) Gently press your head against your hand for five seconds.

Photo of process described below.

Third, check if your neck feels better. If it’s still not quite right, bend your neck down and to the right as though you’re looking at your shoulder. Repeat the process of placing a hand against your face and gently pressing into it.

Recheck your neck. If you’re still having a problem, make sure you didn’t overcorrect and cause twisting on the opposite side. Then bend your neck forward, then down and to the asymptomatic side as though looking over your shoulder. Repeat the process with your hand.

6. Seek a professional

If the joint just won’t sit right, I seek an appointment with my physical therapist or acupuncturist.

7. Be kind to your neck

Part of managing my connective tissue disorder is making sure my joints are in a neutral position most of the time. If I can’t support them myself, I use a lot of pillows and phone holders etc too keep everything in neutral. My biggest active trigger is looking down at my phone or a laptop screen. Take breaks. Adjust your work station if possible. Work with an occupational therapist if you’re stuck and have access to one.

8. Treat comorbidities

There are a host of comorbidities that can go along with EDS, and also potentially exacerbate your joint instability. In my case a big culprit is Mast Cell Activation Syndrome (MCAS). MCAS flares can make EDS worse and vice versa. If you’re interested in the science, this post is a good place to start.

Looking towards the future

It’s possible my current management strategies will fail, and I may need fusion surgery at some point in the future.

There is one other conservative treatment that I haven’t tried but that I think shows promise: stem cell therapy. Companies such as Regenxx currently offer targeted stem cell injections that are supposed to help your weak connective tissue regenerate. However, there are currently several problems with this treatment:

1. Not enough data

There haven’t been enough studies proving this treatment is effective, or evaluating potential risks. For example, how many people suffer nerve damage and how can doctors reduce the risk of nerve damage? Is the procedure safe for MCAS patients, or is it likely to exacerbate our symptoms? Etc.

2. Not covered by insurance

Due to the lack of data, insurance doesn’t cover stem cell injections. I looked up the cost awhile ago; it may have changed. However it was something around $3,600 for a course of stem cell injections in one joint. Right now, this procedure is limited to those who can self pay or actually get GFM donations.

3. Not available everywhere

There are Regenxx labs throughout the United States. However, I don’t think there are many options in places like the UK or Canada, not to mention African or Latin American countries. The pain from CCI can make it hard to travel, and the expense is prohibitive for many people.

My hope is that the research currently being done now will make stem cell therapy and potentially other undiscovered treatments more widely available in the future.

I should note that some people with CCI report success with Atlas Orthagonal chiropractic treatment. I have not tried it. There are significant risks associated with chiropractic treatment, especially for those of us with connective tissue disorders.

If you’re interested in Atlas Orthagonal or indeed any of the treatment options I mentioned, please do your research, be aware of the risks, and discuss it with a medical professional (preferably one you trust).