Eating with MCAS: cooking techniques that have let me eat plants (part 1)

[CN: this post discusses nutrition and medical diets]

This post is part of a continuing series on eating with MCAS, and specifically the interactions between the immune system, the gut microbiome, and plant defenses (aka plant secondary metabolites, a type of phytochemical).

I’m working on more posts that have a lot of citations and explain some of the science behind why I think that the inflammatory potential of plants isn’t dependent on what plant you’re eating.

Instead, I believe it’s a combination of both:

• how the plant is prepared (including growth and storage along the supply chain)
• if your particular gut microbiome has the right combination of microbes to digest the plant compounds our bodies can’t (eg fiber, oxalates, phytase, etc). Different microbes help digest different things.

Unfortunately, writing takes energy and I find looking up citations especially fatiguing. (This is unfair because it literally uses to be my job when I was briefly a research assistant in academia, specifically in history which is all about citations.)

So this post is more a list of things specific ways of preparing plants that have worked for me, with less of the explanation of how I think it works. I’m saving that info for later posts.

Every body is different, and these methods may not work for you. I would encourage you to discuss them with a registered dietitian/nutritionist if you have access to one, and/or other members of your medical team.

---

Step one: plants that are more forgiving

As I mentioned above, any plant has the potential to be inflammatory (because all plants need inflammatory compounds to defend themselves from herbivores).

If you think of plant defenses sort of like a bee sting, I find these plants more like a carpenter bee than a wasp or even a honeybee.

This is a list of produce that tends to be easier to prepare. These are the plants I was typically able to digest when nothing else was acceptable to my body.

As a key point, if you haven’t been able to eat much produce for awhile, eating these plants may help regenerate the parts of your microbiome that digest plants. That means it will be better equipped to digest more types of plants in the future.

Please also note that it’s better to increase your fiber intake slowly to avoid digestive issues. (This is true of anyone, but especially people with MCAS and/or dysbiosis, and for anyone who hasn’t eaten many plants in awhile).

Also please note that the specific preparation methods are important. Additionally, I typically have more luck with fresh local produce versus something pre-cut or frozen. Love to have conflicting access needs with myself.

I understand that these are not necessarily accessible options for everyone (including myself). If you’re not able to get local produce, I have had luck starting with the “happiest” looking produce I can find. (I am sorry, I do not have a solution here for food apartheid, and I understand that some of these recommendations may simply not be an option for everyone.)

I unfortunately also do not have an affordable solution for not being able to chop vegetables, which is something that makes me very nervous because I know that is an ability I currently have that is temporary.

At some point I’m hoping to also write about some of the cooking/prep methods I use to help make cooking more accessible. But I have yet to find a solution to cooking while bedbound (other than hiring someone, which costs money many of us simply do not have).

If you find yourself experiencing a lot of bloating and upper gastric pain, you may want to ask your doctor about SIBO and other types of intestinal overgrowth. It’s possible you will need to treat the intestinal overgrowth before eating a lot of fiber.

---

Root vegetables

Peel your root vegetables. Yes, a lot of the nutrients are in the peel (and you can save it to make broth!). But a lot of the plant defenses are centered in the peel, too. After all, it’s the first thing herbivores typically bite into.

I’m specifically talking here about tubers that are basically where plants store extra complex carbohydrates and high in soluble fiber.

Note that certain cooking methods can break down the complex carbohydrates too much, so you get a higher glycemic load and less food for your microbiome.

Additionally, certain cooking methods (eg grilling/roasting at high temperatures) can reduce the colorful antioxidants that your body probably needs from dealing with so much inflammation.

Eating a wider variety of colorful tubers can provide your body with different antioxidants. Heirloom vegetables are your friends (if you can find them).

1. Sweet potatoes (any color)
2. Beets (especially red ones)
3. Heirloom purple or blue potatoes
4. Carrots, especially rainbow carrots
5. Sun chokes (aka Jerusalem artichokes)
6. Fennel root
7. Jicama (note: peel with gloves away from food preparation surfaces such as cutting boards, and discard the skin as it is toxic)

Turnips, rutabagas, and onions in my experience tend to be more finicky about how they are prepared. (That is, tubers from the Brassica or Allium family)

I find that these are the cooking methods that work best for me:

Prep:

Peel and chop vegetables.

May reserve peels in a bag in the freezer for broth (recommended).

If you need to prep them ahead, then freeze raw prepped root vegetables in a zip lock or other freezer safe container and cook from frozen. (If you’re using a plastic container, then soak it in water for about 20 minutes to loosen the vegetables so you can remove them.)

Instant pot:

Place chopped root vegetables in instant pot and cover with water or broth.

Secure lid and set to high pressure cook for zero minutes. (Note: this just brings the water up to a high temperature and then lets it depressurize.)

Natural pressure release. Note that sweet potatoes and potatoes may dissolve using this method. I typically cook meat on the stove or in the oven, then add it into the vegetable medley.

May also finish them with dried herbs, turmeric, sumac berry powder, or sea salt. Note remove from heat immediately after incorporating herbs or sumac.

You can also puree the vegetables and broth for a cream of vegetable soup. Just add the cream (or coconut milk, etc) directly before serving so it doesn’t curdle. I typically freeze cubes of coconut milk in an ice cube tray, and then add them to my soup as I’m reheating it. Note that pureeing or mashing the vegetables will increase the glycemic index of your meal.

Sheet pan method:

I know everyone loves roasted root vegetables these days with a little bit of browning. My body does not like too much browning/char. So I’ve come up with an alternative method that is still relatively easy.

Preheat oven to 275F. Coat stainless steel pan or Pyrex roasting dish with oil with a high smoke point (I use expeller pressed canola oil, YMMV). If using frozen vegetables, you can cook directly from frozen.

Spread vegetables on roasting trays leaving room between them for steam to escape. Steam them in the oven for 10-20 minutes (longer if cooking from frozen) until most of the water has evaporated, and you can easily poke them with a fork.

If desired, coat with oil and a little salt. Increase temperature to 375F, and roast for 3-5 minutes (just until the vegetables start to become aromatic, but stop before much browning takes place).

If desired, coat with dried herbs, lemon juice, sumac berry powder, ground turmeric and/or more sea salt.

Note: for red/purple/blue tubers, avoid the second higher temperature cook as it can degrade the anti-oxidants. Adding turmeric powder before cooking at low temperature (or sumac berry powder afterwards) can help stabilize/brighten these colorful anti-oxidants.

If you find that roasted vegetables provoke a reactive hypoglycemia flare, then you may need to cook them til they are just fork tender and refrigerate (or freeze and defrost) to avoid that. This cooking process increases the amount of resistant starch, which means a lower glycemic load and more food for your microbiome.If you have a condition such as diabetes, these starchy vegetables may aggravate your condition. I would suggest consulting with your doctor, a nutritionist, and looking for recipes from a reputable diabetes organization.

---

Summer and Winter Squash

Squash (Cucurbitae) were originally cultivated by Indigenous people in what is currently known as the Americas, specifically Mexico and Central America. There are now many varieties cultivated around the world, so if you’re not a fan of zucchini, you might try experimenting with different kinds of squash.

Prepping your squash:

Again, I would recommend peeling even summer squash as you first introduce it, as I find the peel can be harder to digest if you haven’t eaten squash in awhile. Over time, you may want to try reintroducing it, as many of the anti-oxidants and micronutrients in summer squash are found in the skin.

Winter squash generally have a tougher peel; whether it’s eaten depends on the specific variety. Again, I had better luck introducing the peel slowly

Winter squash can be tough to peel, especially when they have ridges (such as acorn squash). Butternut squash tend to be the easiest winter squash to peel, in my experience. I would also include ridge gourds used in Indian cooking in the category of “squash to always peel.”

For winter squash, you will also need to remove the seeds. You can scoop these and the stringy bits out with a spoon. If someone in your household is planning to eat the seeds, then the easiest way to separate them is actually picking them out from the strings with your fingers, and then removing the strings with a spoon.

It is easier to roast a deseeded winter squash and then remove the peel. This is probably ok as long as all of the seeds are removed, but I haven’t experimented with it much during my severe food intolerance days.

Cube, slice, dice, or chop squash to your desired size. Smaller pieces will cook more quickly and dissolve more easily. Larger pieces will take longer to cook, and take longer to dissolve.

You can freeze your prepped squash here to use it for later. Just bear in mind that you may need to take steps to remove excess water when you defrost it, and it may change the texture slightly.

Avoiding soggy squash:

Much of the fiber in squash is soluble fiber. This means it dissolves in water. If you take your fresh squash and add it to a soup or pot of cooking water at the same time as sturdy root vegetables like carrots, then you risk it dissolving almost completely.

If that is not the texture you are going for, one way you can combat this problem by cooking your squash with oil before adding it to any liquids. The layer of oil forms a barrier between the soluble fiber and your soup of the day.

Defrosting squash:

Frozen squash already has excess liquid left over from the freezing process. So you will need to extract some of the liquid before cooking it in oil.

A few methods for defrosting squash, which can each transition fairly seamlessly to cooking your squash with oil:

1. Put squash in a microwave safe container and defrost for 30 second intervals just until it’s no longer frosty. (If you make a note of the amount and time, you can reuse those settings on your next batch.) Note: this method works best for winter squash and other more sturdy squash.
2. Preheat oven to 290F (265F for convection). Grease a sheet pan or another oven safe container with low sides. When oven is heated, place squash on sheet pan with plenty of space between them and heat in the oven for around 10 minutes (depending on the size of the squash and your oven), or until you can just puncture the squash with a fork.
3. Heat a wok over medium low heat. Place squash inside wok. Do not add any extra water! Cover and heat until steam starts to coat the inside of the lid. Then remove lid, and stir as excess water evaporates.
4. This is my least favorite flavor wise, but most favorite in terms of ease and bulking up a meal. Prepare a soup or stew of your choice. After it’s done, leave it at an extremely gentle simmer. Add frozen squash at the end and cover with a lid, allowing it to cook in the broth for around 3 minutes or until desired texture. This works better with squash that is not zucchini. This method will preserve more fiber than other methods listed.

Pro tip: you can speed up water extraction for any of these methods by adding a dash of salt. To preserve anti-oxidants, you can also include a pinch of turmeric.

A collander and paper towels can also help with removing excess water. For recipes where you want truly dry squash (such as fritters), you can physically squeeze the water out of the squash.

Cooking your squash

There are obviously many ways you can cook squash, from zucchini bread to fritters to curry. These are just some suggestions to get you started.

As mentioned above, many of these techniques flow naturally from the defrosting methods mentioned above.

1. Oven: cook at lower temperature (above 275F) until you can just start to use a fork to pierce the squash. Remove squash from oven and increase the temperature to 425F (400F convection/toaster oven). Meanwhile, drizzle or brush a small amount of oil over the squash. Return to oven, and bake until it smells fragrant and the edges just start to brown. Remove from oven, and top with ground spices/herbs (if desired) or seasonings of your choice. Or allow to cool and top with fresh herbs.
2. Stove top (saute-steam): heat wok over medium and add oil. Add squash and fry until just fork tender (about 3 minutes) with seasonings of your choice. Add salt and ground turmeric, reduce heat, and cover. Cook on low heat for around 20 minutes, allowing the squash to steam in its own juices. (Much appreciation and credit to Bong Eats for sharing this Bengali technique for cooking mixed vegetables.)
3. Stove top (steam-saute): Heat wok over medium low heat and add squash and a small amount of water. (If using frozen, omit water.) Cover, and allow squash to steam until the color begins to brighten (1-3 minutes). Remove lid and stir squash, allowing water to evaporate. Add oil, increase heat to medium, and saute squash with oil and aromatics of your choice until desired crispness. (I learned about this technique from How to Cook without a Book, which attributes the technique to East Asian stir fry methods. I’m sure there’s a more precise culinary source, but I am not sure what it is.)

Ideas for flavoring your squash:

What flavoring or seasonings your body tolerates can vary greatly with MCAS. Here are some very general ideas for inspiration:

• Fresh or dried herbs
• Many cultures dry a sour fruit and grind it into a powder (eg sumac berry powder in Middle Eastern cooking; amchoor powder in Desi cooking); I found that I tolerated this better than citrus for a long time.
• Any spices that you tolerate (for example: cumin, coriander, etc)
• Add grated ginger or any aromatics you tolerate; this is especially delicious when using sauted in oil on stove top.
• Make a bastardized stir fry sauce out of fat, sugar, salt and acid (eg maple syrup, coconut oil, salt and rice vinegar, which is typically low histamine.)
• Coconut aminos
• Sea salt and the natural flavor of the vegetables

Disclaimers

I’m not a medical professional, nutritionist, or dietitian. These techniques are ones that have been accessible to me, and that I’ve had success using. However, every body is different (especially with highly variable conditions such as MCAS), and the foods that work for my body may not work for yours. Feel free to cherry pick, rework, or simply ignore any of the information mentioned here.

This resource is primarily intended for people who currently have trouble digesting plants, and are hoping to reintroduce more plants into their diet. If you can eat plants not included in this list, please don’t feel like you must exclude them from your diet.

If you have been advised to limit fiber/plant intake, please follow your doctor’s advise.

Similarly, if you’re currently able to digest plants, please don’t limit yourself to the vegetables listed above unless you have been advised to restrict your diet by a medical professional.

Chronic Illness Survival Guide: Essential Vitamins

[Content Note: this post discusses medical diets, nutritional requirements, brief mentions of food insecurity.]

In an ideal world, we’d all have access to a rainbow of farm fresh fruits and vegetables. Peeled oranges and pre-chopped vegetables would form an abundant cornucopia of accessible produce. Feeding tube supplies would be free, and not rationed by insurance companies. And those meal replacement shakes would be delicious, and not have that weird chemical aftertaste.

Unfortunately, we don’t currently live in that world. There are a lot of reasons why people might struggle to get nutrients that are essential to Not Dying.

This post is mostly written for people whose bodies will not digest a bunch of food groups, and are probably dealing with Too Much Brain Fog to figure out whether they’re at risk for rickets or scurvy or something else entirely.

I’m focusing on these folks, specifically, because I’ve struggled with this myself: Too much brain fog to look up what vitamin deficiencies might be making my brain fog worse.

However, if you’re struggling to feed yourself for any reason, or just want to make sure you’re actually getting a nice balance of nutrients, this post is for you.

Hopefully, this is the first in a series on sort of nutrition first aid. This post focuses on essential vitamins. Essential minerals are also a thing, and hopefully will be covered in a later post.

Sources include the Harvard School of Public Health, NIH, and some assorted scientific articles that review what we currently know about certain vitamins. Citations for those are at the bottom.

I also used a nutritional tool called My Food Data, specifically the Nutrient Ranking tool. I have used it myself when trying to figure out the care and feeding of my body. It basically lets you figure out where to get a particular nutrient.

For example, you can look up a nutrient and search for foods with the highest amount. You can also search within food groups, which is very useful if you’re having trouble digesting leafy greens and you’re trying to find a way to replace those nutrients.

I’ve also made a handy infographic that covers the information in this post, for a handy reference guide when Grocery shopping or whatever.

Infographic by me, licensed under a Creative Commons license. The text is really long, and is 100% included in the blog post below (once you get to the list of vitamins.)
If you would like alt text to use when reposting this infographic, it’s at the very bottom underneath the citations.

---

What are essential vitamins?

Nutrients are called “essential” when our body can’t make them itself, but we need these nutrients to survive.

It’s sort of the equivalent of that meme, “if you can’t make your own neurotransmitters, store bought is fine!” Except humans can’t actually make their own vitamin C (we don’t have the enzymes to do it).

How much of each vitamin do I need every day?

I have avoided providing this information because, honestly, the answer is: it depends. If you’re interested in finding out, I recommend looking up the Recommended Daily Allowance (RDA) for particular nutrients.

However, a lot of factors can affect how much of a nutrient your body needs, and how much it can actually absorb. As I’ve tried to learn more about this, mostly what I’ve learned is how much we don’t know.

Not to get too deep into history of medicine, but our research for calculating RDA was mostly done in the first half of the 20th century. More recent government nutrition boards have raised issues about the quality of the evidence used to determine the RDA, and the need to update the standards.

A full dive into how we determined what the Recommended Daily Allowances should be, critiques of early studies into nutritional requirements, and 21st century working groups into a need to revise the RDA, is way more than I can possibly cover in a blog post.

It’s dense, but this is where I found some of that information:

“The Development of DRIs 1994-2004: Lessons Learned and New Challenges: Workshop Summary” at NAP.edu. 2008. doi:10.17226/12086. ISBN 978-0-309-11562-9 – via www.nap.edu

For information on the early nutritional guidelines, such as that developed by the Food and Nutrition Board in the 1940s, see: Mozaffarian, Dariush et al. “History of modern nutrition science-implications for current research, dietary guidelines, and food policy.” BMJ (Clinical research ed.) vol. 361 k2392. 13 Jun. 2018, doi:10.1136/bmj.k2392

Additionally, most research on nutritional requirements has focused on studying healthy people. We know that inflammation, for example, changes the body’s metabolism and the way it uses nutrients. We have studies on certain illnesses that very obviously impact nutrition, such as Inflammatory Bowel Disease and having a feeding tube. However, we mostly don’t know how chronic illness affects nutritional requirements.

There’s also a lot of conflicting information. For water soluble vitamins like Vitamin C, for example, the typical advice has been that you’ll just pee out any extra. More recent studies, however, have showed that high dose vitamin C (500 mg/day) doubles the risk of kidney stones.

Basically, the key is finding the right balance for your body. Not too much, but not too little.

This information is offered as a jumping off point for figuring out your own dietary needs.

What is the best way to increase my intake of essential vitamins?

The best way is the one that works for your body and energy levels, your budget, and keeps you from getting scurvy.

Sure, local and farm fresh vegetables are probably better for people than something highly processed, or a multivitamin pill.

But if you can’t digest fiber, then those farm fresh vegetables are not actually going to help much. If you’re struggling with food insecurity or living under food apartheid, then fresh vegetables may not be an option.

Ketchup is, famously, not a vegetable. However, it does have vitamin C, and that can help you avoid scurvy. And shelf stable packets of ketchup are easier to find than farm fresh vegetables.

What about supplements?

Supplements, smoothies, and meal replacement bars are also an option for increasing vitamin intake if you’re struggling to get enough.

There are some caveats with supplements.

Most supplements are a very high dose, much higher than we would get from eating “whole foods.”

Additionally, they’re not wrapped up with fiber and other nutrients. This means it’s easy for our bodies to get to them, which in theory is a good thing.

However, if you dump a lot of a supplement into your body at once, then it’s sort of like if your friends all brought you frozen lasagna and tuna casserole and other easy to reheat foods.

You can’t eat them all at once, and you only have so much storage space in the freezer. If there’s too much to use or store, then you might have to discard the rest. (I realize most of us would probably give them away or something, but just go with me here.)

This is maybe not a big deal, unless something goes wrong with your trash disposal. Say you’re too sick to take the garbage out, and so now your kitchen smells like rotting lasagna and your trash can is overflowing. Or say your trash service gets delayed in the summer, and your garbage can full of tuna casserole gets exceedingly rank.

When we eat excess vitamins, our bodies can typically just dispose of them. For water soluble vitamins like Vitamin C and B vitamins, we just pee them out. Except for in cases when something is wrong with our waste disposal system, and then they can build up and cause things like kidney stones.

When we get our vitamins from plants or whole grains or other foods, then it’s a more complex task for our bodies to absorb the vitamins. So we’re able to absorb them more slowly, and generally this works better. Sort of like if your friends planned better, and spaced out when they brought you food so you didn’t run out of freezer capacity.

My personal attitude towards supplements is that I use them when it seems like I need them. I also try to take a lower dose of vitamin supplements several times throughout the day, rather than one big dose.

I’m not a doctor, and I can’t say if this is a good strategy for you. There’s a lot of complex biochemistry into things like “which version of this vitamin will my body absorb better.” But hopefully this explains some of the conflicting information about vitamin supplements.

Essential Vitamins

B vitamins

I’m grouping these together because they do similar things, and are typically found in similar foods.

There are eight essential B vitamins:
B1 (Thiamine)
B2 (Riboflavin)
B3 (Niacin)
B5 (Pantothenic Acid)
B6 (Pyridoxine)
B7 (Biotin)
B9 (Choline)
B12 (Folate)

What do B vitamins do?

Help enzymes make:
Energy
Neurotransmitters
New cells
(e.g. blood, brain and nerve cells)
Help regulate homocysteine levels

Our bodies absorb animal based sources of B vitamins more easily. (This means it’s easier for our bodies to actually use those nutrients.)

Sources include:

High protein foods:

• Nuts
• Beans
• Lean Meat/seafood
• Eggs

Mushrooms (eg shiitake)
Nori
Leafy greens

Yeast fermentation:

• Marmite
• Sourdough bread
• Tempeh
• Fortified cereals

Vitamin C

Anti-oxidant
Helps form:
Blood vessels
Muscle
Cartilage
Collagen in bones

Found in plants, especially:

Rose hips
Hibiscus
Citrus fruit
Berries
Melons
Tomatoes
Bell peppers
Potatoes
Brassicas

Vitamin A

Helps things work:

• eyes
• mucuous membranes
• white blood cells
• skin
• bones
• reproductive organs

Our bodies absorb plant based Vitamin A more easily. Sources include:

Leafy greens
Tomatoes
Orange fruits/veggies
Yellow fruits/veggies
Watermelon
Fish
Eggs
Liver
Dairy

Vitamin K

Note: there are two forms of Vitamin K, K1 and K2. Vitamin K1 is only found in plants, and that’s the one that seems to be more important for the health benefits below (eg, building connective tissue).

Note: this section has been edited because I had a brain fog and reversed K1 and K2 in an earlier version.

Increases clotting
Important for bone health
Stimulates wound healing
Nerve/cognitive protection
Liver protection
Collagen protection
Helps mitochondria release energy

Sources include:

Leafy greens
Parsley
Fennel
Kiwi
Okra
Green beans
Peas
Blueberries
Algae
Plantains
Natto
Sauerkraut
Kimchi

Vitamin E

Anti-oxidant
Reduces harmful clots
Anti-inflammatory
Helps immune system fight infections
Helps improve asthma symptoms

Sources include:

Nuts + nut oils:
Sunflower
Hazelnut
Almond
Peanut
Nori
Salmon
Sardines
Canola oil
Avocado
Leafy greens
Kiwi
Sweet potatoes
Winter squash
Mango
Bell peppers

Vitamin D

Helps with cell growth
Helps glucose metabolism
Helps nerve-muscle communication
Anti-inflammatory
Important for bone health
Improves calcium absorption

Animals and fungi grow with more sun exposure contain more Vitamin D (including humans)

Sources include:

Egg yolks
Fortified milk
Fortified cereal
Fatty fish
Mushrooms
Beef liver

---

Hopefully this information can help you figure out how to make sure your body gets enough essential vitamins, and avoid scurvy and other problems.

---

Sources

Harvard School of Public Health

National Institute of Health Dietary Supplement Fact Sheets

My Food Data Nutrient Ranking Tool

Berger, Mette M et al. “Micronutrient Deficiencies in Medical and Surgical Inpatients.” Journal of clinical medicine vol. 8,7 931. 28 Jun. 2019, doi:10.3390/jcm8070931

Ferraro, Pietro Manuel et al. “Total, Dietary, and Supplemental Vitamin C Intake and Risk of Incident Kidney Stones.” American journal of kidney diseases : the official journal of the National Kidney Foundation vol. 67,3 (2016): 400-7. doi:10.1053/j.ajkd.2015.09.005

Lewis, Erin Diane et al. “Regulatory role of vitamin E in the immune system and inflammation.” IUBMB life vol. 71,4 (2019): 487-494. doi:10.1002/iub.1976

Padayatty, S J, and M Levine. “Vitamin C: the known and the unknown and Goldilocks.” Oral diseases vol. 22,6 (2016): 463-93. doi:10.1111/odi.12446

Watanabe, Fumio et al. “Vitamin B₁₂-containing plant food sources for vegetarians.” Nutrients vol. 6,5 1861-73. 5 May. 2014, doi:10.3390/nu6051861

Uebanso, Takashi et al. “Functional Roles of B-Vitamins in the Gut and Gut Microbiome.” Molecular nutrition & food research vol. 64,18 (2020): e2000426. doi:10.1002/mnfr.202000426

Yan, Quanxiang et al. “The biological responses of vitamin K2: A comprehensive review.” Food science & nutrition vol. 11,4 1634-1656. 6 Jan. 2023, doi:10.1002/fsn3.3213

Alt text for infographic:

Essential Vitamins, and where to find them

B vitamins

Help enzymes make:
energy
neurotransmitters
new cells (eg, blood, brain and nerve cells)

Our bodies absorb animal based B vitamins more easily

High protein foods:
Nuts
Beans
Meat
Seafood
Eggs
Dairy
*
Yeast fermentation:
Marmite
Sourdough
Tempeh
*
Mushrooms (esp shiitake)
Leafy greens
Fortified foods, eg cereal

Vitamin C

Anti-oxidant
Helps form:
Blood vessels
Muscle
Cartilage
Collagen in bones

Found in plants, especially:
Rose hips
Hibiscus
Citrus fruit
Berries
Melons
Tomatoes
Bell peppers
Potatoes
Brassicas

Vitamin A

Helps things work:
eyes
mucuous membranes
white blood cells
skin
bones
reproductive organs
*
Liver protection
Collagen protection
Helps mitochondria release energy

Our bodies absorb plant based Vitamin A more easily

Sources:

Leafy greens
Tomatoes
Orange fruits/veggies
Yellow fruits/veggies
Watermelon
Fish
Eggs
Liver
Dairy

Vitamin K

Increases clotting
Important for bone health
Stimulates wound healing
Nerve/cognitive protection

Especially Vitamin K1, which is only found in plants

Leafy greens
Parsley
Fennel
Kiwi
Okra
Green beans
Peas
Blueberries
Algae
Plantains
Natto
Sauerkraut
Kimchi

Vitamin E
Anti-oxidant
Reduces harmful clots

Sources include:

Nuts + nut oils:
Sunflower
Hazelnut
Almond
Peanut
*
Nori
Salmon
Sardines
Canola oil
Avocado
Leafy greens
Kiwi
Sweet potatoes
Winter squash
Mango
Bell peppers

Vitamin D
Anti-inflammatory
Helps immune system fight infections
Helps improve asthma symptoms
Anti-inflammatory
Important for bone health
Improves calcium absorption
Helps with cell growth
Helps glucose metabolism
Helps nerve-muscle communication

Animals and fungi grow with more sun exposure contain more Vitamin D (including humans)

Egg yolks
Fortified milk
Fortified cereal
Fatty fish
Mushrooms
Beef liver

This image licensed under a Creative Commons license, please credit
@UntoNuggan
liminalnest.wordpress.com/

Lost at sea: coping with bedbound life

Image description: a glacier boulder just after sunset on a cloudy day on the Baltic sea. Long exposure makes the waves look like mist. [Photo credit: Wikimedia user Abrget47j; this work is licensed under a Creative Commons Attribute Share-alike 3.0 license]

---

[TW: this post contains some discussion of dietary restrictions, difficulty eating, nutritional deficiencies, and tiny tiny exercises. Graded Exercise Therapy is mentioned in terms of being contraindicated for folks with ME.]

---

Intro

In the summer of 2020, I started having what I’m currently referring to as the Epic Flare of 2020. Now that I finally have a little more energy for things other than “surviving”, I thought I would share some of the things that helped me.

As always, feel free to ignore anything not relevant to your situation.

Also of note, while I definitely had some periods where brushing my teeth made me crash for several days, I don’t think I am currently dealing with Post-Exertional Malaise associated with Myalgic Encephalomyelitis (aka ME/CFS). This is probably because I know enough people with ME that I just rested…A Lot. So maybe resting a lot is what your body needs, I don’t know. I’ll leave that decision up to you.

I’m going to try to keep this simple so it’s easy to read with low energy and brain fog. This means I’ll be skipping over the detail of my Epic Flare of 2020.

Background (skip if you’re tired)Background (skip if you’re tired)

What’s relevant for this post is that I was mostly bedbound, having intense difficulty walking and feeding myself, and also I developed Many More Food Intolerances.

These tips are basically what I did when things were at their worst. When I sent an email to my family with times I could physically talk to answer yes/no questions, and then crashed from writing the email. When I felt like I fell down a rabbit hole, and all the things that typically helped my symptoms no longer worked.

Honestly I felt like I was lost at sea, and desperately trying to tread water. But I knew that if I didn’t find land or some driftwood or something, I was going to drown.

Overarching strategy

Two things can be true:

1. Your body needs to rest so that you don’t crash, etc
2. Being bedbound is hard on your body

Most of the strategies I used were aimed at treating the complications of being in bed so much.

Because I honestly did not have the energy to try to figure out why I was crashing.

I know a lot of us have negative experiences with doctors blaming all our symptoms on “deconditioning.”

What I’m trying to say is that regardless of why you’re maybe bedbound, being bedbound can cause other complications.

These tips are aimed at reducing those complications.

Side effects of being bedbound

(Note: I’ve been trying to find some medical documentation about this that isn’t very “doom and gloom” and kinda ableist, with little success. If you want to look yourself, I recommend search terms such as “prolonged bed rest long term sequelae”. This is how I found a multi-part overview written for nurses if you want more medical details.

Lack of movement

Lots of systems in our bodies rely on physical movement to work better.

Examples:

• Digestion
• Circulation (heart, blood vessels)
• Lymphatic system (“garbage removal” of the body”)
• Muscular
• Pulmonary (lungs, breathing)

Depending on your situation, you might want to

(A) add very tiny movements

(B) try to help each system function better

---

Tiny Movements

The goal here is to not crash, and maybe move a little bit.

If you crash after five minutes of activity, do two minutes. Or do thirty seconds every few hours. If it’s just not helping, then maybe prioritize other things. Maybe some days you can do a tiny movement, and maybe some days you can’t. That’s ok! Please don’t feel bad for the fact that your cantankerous body is very ornery about it’s energy envelope.

You do not need to focus on increasing the duration or difficulty of your tiny movements. That would basically be Graded Exercise Therapy, and there is ample evidence that GET is bad for folks with Myalgic Encephalomyelitis. Other conditions, such as Mast Cell Activation Syndrome, can also cause exercise intolerance or be exacerbated by overdoing it.

What I’m saying is that if there are days where you can move a tiny bit and stay well within your “energy envelope”, it could help certain systems function better. If you can’t do that, then please do not push yourself or crash. Honestly either way: please don’t push yourself or crash.

The goal is to move a little, if you can, and if your body is like “lol no” then please listen to your body.

1. Wiggle your fingers and toes

If you can, gently wiggle your fingers and toes. This can help your circulation

2. Flex your wrists and ankles

Very gently, point your toes and then pull them up towards your body. Don’t go to your full range of motion, especially if you’re hypermobile. If it’s easier, do one leg at a time. Make a similar movement with your wrists, if you can. This is especially good for nerve pain.

3. Breathing (not meditation)

I know, I hate being told to “try meditation” too. Also sometimes my body just doesn’t want to do big belly breaths. But oxygen is important, so I try to just distract myself and breathe in through my nose, and out through my mouth. If I have energy, in through the nose and out through pursed lips is also good.

Additional breathing exercises can be found here.

4. Sitting propped up

Bodies maintain a certain blood volume so we have enough blood to reach our brains. When we lay down a lot, our bodies go “oh good, I’ll save energy and lower the blood volume.” Then it can be even harder to be upright. (Source: an autonomic specialist I saw a few years ago.)

If you’re dealing with something like a spinal CSF leak, then sitting upright might not be for you. Remember: the goal is not to crash. Go slow, and try to keep your joints supported.

5. Small C, Small S

My hips and low back get super cranky from laying down, and everything just gets super tight and awful. One thing that has helped is to slide my right hip just a smidge towards my right shoulder, and tilt my head towards the right so my body makes a very small “C”. Then lay that way for awhile, and switch to the other side. You can also try doing opposites, so your spine and hips make a small “S”. Play around with what feels good.

6. Lay in different positions

Bed sores are not fun. If you can experiment with laying in different positions, this can help prevent bed sores. Just try to make sure all your joints are supported.

7. Passive stretching

I don’t know if this is even the right term for this technique that I kind of discovered by accident. Basically, what I do is gently brace a foot or hand against a piece of furniture. The goal is for my muscles to be stretched a little bit, but also I don’t have to engage any muscles to maintain the stretch. It’s sort of like using furniture as a brace or more specifically one of those fancy “night braces” my podiatrist keeps telling me to try that keep your Achilles stretched while you’re sleeping.

For example, if I’m laying on my side in bed, I might put a pillow under my arm and gently rest my hand against a wall. It should feel kinda nice. My palm is typically not flat against the wall; I usually leave 1-2″ of clearance between the heel of my palm and the wall to prevent hyperextending stuff.

For me, if I do this for 20-30 minutes or so, my muscles start to unclench. Then I switch to a different joint.

---

Targeted help for various systems

Maybe tiny movements are not a thing for your body these days. There are still some targeted strategies you can do to ease the effect being bedbound has in your body.

Digestion

Being in bed a lot tends to cause/exacerbate constipation. Some things that can help include:

• taking a gentle stool softener like Dulcolax Clear (if it’s ok for your body)
• staying hydrated and having electrolytes
• soft foods like smoothies and soups tend to be easier to digest
• Fiber, if your body can tolerate it (especially soluble fiber, which is typically easier to digest than insoluble fiber). Soluble fiber attracts water to your digestive tract and can help prevent constipation.
  • foods with soluble fiber my body typically is ok with: apples, pears, carrots, sweet potatoes, oatmeal
  • psyllium husk fiber is also high in soluble fiber, and is the active ingredient in Metamucil. If you have dietary intolerances, be sure to double check the inactive ingredients for things like dyes, gluten, etc. You might also look for psyllium husk supplements that are certified non-GMO and gluten free.

Circulation

If you can’t get your blood moving, there are things that can help get your blood moving for you.

Compression socks/tights and shorts are one option, but they can be exhausting to put on.

I have some “sequential pressure devices” that I wear on my calves. They are like what they have in the hospital, except they run off a battery so it’s easier to get up to use the bathroom. I call them my robo legs, and they basically gently squeeze my calves.

The reason they use them in the hospital is that being bedbound can increase your risk of clots. It might be good to discuss clot prevention medications with a doctor, especially if you have a family history of blood clots.

Lymphatic system

The lymphatic system really needs some movement to work. Fortunately you (or maybe someone else) can kind of do CPR for your Lymphatic system.

Lymphatic massage techniques do not require very much physical hand strength or dexterity. You might also be able to get help from a massage therapist or a friend. Most of the lymphatic system is on the left side of the body, so if you have limited energy, maybe focus on the left side.

There are also some tools made for stimulating the Lymphatic system. I have not tried them myself and I still don’t really have the energy to research them. But I’m mentioning they exist in case they might work for you.

Drinking a lot of water can also help your lymphatics work better. The lymphatic system also is responsible for dealing with the garbage from an inflammation party. So anything you can do to reduce inflammation may also help reduce your lymphatic system’s workload. For example, if you have an inflammatory condition like Lupus or MCAS, following your protocol for those conditions can lighten your lymphatic system’s workload.

Muscular system

Being bedbound can make your muscles tighten and shorten. It can also cause muscle loss/atrophy.

Things that may help include:

• Stretching
• Topical magnesium (spray, Epsom salts)
• Oral magnesium supplements
• Heating pads
• Muscle relaxers

Some caveats: try not to burn yourself on a heating pad, obviously. And talk to a doctor about if a muscle relaxer is ok for your body (they can be a double edged sword, especially with EDS).

Oral magnesium is also a laxative, and it’s possible to take too much. I do ok with “chelated magnesium” from one of the following manufacturers:

Bioschwartz (small and easier to swallow)

Pure Encapsulations

Pulmonary (lungs)

I have primarily managed my breathing issues with things like breathing exercises and sitting up and bed, as well as using various inhalers and nasal sprays recommended by my doctor. I’ll be honest, I don’t know as much about managing pulmonary complications from being bedbound. I hate to say “talk to a doctor” like that’s an easy thing to do, but I also don’t want to spread incorrect information.

Nutrition

Food is ridiculously hard. When you’re bedbound, it’s even harder. I’m not here to lecture you about “eating for wellness” or whatever when you’re probably more focused on “eating for survival.”

What I will say is that it’s really easy to accidentally get malnourished when you’re bedbound, and probably taking some sort of multivitamin is a good idea.

During the Epic Flare, I specifically ran into issues with not getting enough iodine, Vitamin D, and Vitamin B. I know other folks who have had issues with anemia (low iron) and scurvy (from not enough vitamin C).

I can’t tell you what specific supplements your body might need. However, this post from Harvard has a list at the end under the heading “explore other vitamins and minerals.” Each vitamin has a link to some background, information on things like dietary sources of that vitamin. Further down it lists symptoms of deficiency/getting too much, which might be the most relevant section to skim to see if you need to spend energy reading the rest.

If that sounds like too much mental energy, you could try approaching it this way: are there any major categories of food that you haven’t been able to eat lately? For example, leafy greens, eggs, seafood, whole grains. If you look up, for example, “leafy greens essential vitamins and minerals”, you can find out that leafy greens contain a lot of Vitamin K (among other things). If you look up “Vitamin K sources in food”, you can find that Vitamin K is also found in certain cheeses and cuts of meat. If you’re not eating any of those regularly, you might want to consider supplements.

Ideally I would be able to just recommend that you see a nutritionist, because this is all pretty complicated when you’re super sick. Unfortunately there can be a lot of access barriers to seeing a nutritionist, and they don’t always know much about complex conditions.

If you’re really just struggling to eat and you don’t have many dietary intolerances, meal replacement drinks might be a good workaround for you. There does seem to be a bit of an Ensure shortage during the pandemic, and honestly none of them taste that amazing? But if you just need an easy way to shove nutrients in your body, that’s what they’re there for. Otherwise a multivitamin is probably the simplest way to minimize nutritional deficiencies.

Caveats about constipation

Constipation is also a ridiculously common side effect of being bedbound. Daily laxative use for long periods of time is not something that is generally recommended without some kind of medical oversight. I typically do ok with Colace/Colace Clear when I’m stopped up. It takes a little longer to work but it’s less…explosive, and thus I’m less likely to run into an electrolyte imbalance.

It’s also possible for constipation to lead to a fecal impaction, which is super painful and can potentially turn very bad if left untreated. Here’s some information about prevention, and possible warning signs to look out for.

Conclusion

There’s a lot here, and it can be a little overwhelming to think about making a lot of changes when you’re struggling to just survive.

My advice is not to make a bunch of changes at once, especially if that feels unmanageable. Maybe try one thing, and see how your body does. Maybe try doing it a couple times throughout the day rather than all in one chunk. The goal is to feel physically less-bad, which also includes avoiding crashes (as much as possible; sometimes they just happen.)

I also just wanted to say: I’m so sorry you’re dealing with this. I know it’s so, so hard. I wish you all the best in dealing with something that is really freaking hard.

If you feel like you’re struggling to stay afloat: I hope you find a piece of driftwood or a life raft soon, and that you can make it from the open ocean closer to shore.

Cooking with fatigue: washing rice, vegetables, etc.

[this post discusses food and medical-related dietary restrictions]

One of the frustrating things about my cluster of chronic illnesses is that I’m both 1) very fatigued, and 2) feel demonstrably less bad if everything I eat is made from scratch (to avoid MCAS triggers and cross contamination etc).

A related problem is that when my fatigue is bad, then my brain fog typically gets bad. So it’s hard to plan meals and find recipes. But more than that, I often find it hard to figure out how to move my body to do a cook.

There have been a number of… cooking related accidents where I’ve carried something wrong and hurt my wrists or back. Also, one of the hardest physical things for me right now is just. Standing. And a typical kitchen set-up involves a lot of standing.

I wanted to start documenting some of the ways I have adapted cooking to my body, so maybe we don’t have to keep individually figuring this out. What works for me might not work for you, but hopefully it might give you some ideas on how to adapt your kitchen for your body. (Or other rooms! This is applicable to more than cooking.

As with many aspects of disability, adaptive cooking is easier if you can throw money at the problem. So if finances or lack of space are an access barrier to you, please know that’s not an individual failing on your part. It’s part of many systemic issues like “why don’t so-called developed countries tax billionaires and use some of the military budget for actually helping people” and “maybe if wealthy countries would stop extracting resources from so-called developing countries, they could actually help people.”

---

The mechanics

So today I want to talk about how I wash rice, vegetables, etc. These are tasks that are often done standing at a sink, which as I mentioned above is murder for my pelvis.

Supplies:

• fine mesh strainer (for grains) or colander
• large bowl (one you can fit the strainer in comfortably)
• large spoon, preferably metal
• large plate (one wider than the bottom of the strainer)
• bucket
• comfortable chair
• table or counter that you can reach while sitting in the chair
• roughly one gallon of water
• whatever grain or vegetable you need to wash

A note about water: I have a mast cell reaction to something in my tap water. I suspect it’s bleach, because I also break out in hives if I’m in a room with a lot of aerosolized bleach. This makes cooking… complicated.

I have a pitcher with a water filter at the top that’s small enough that I can comfortably lift it. However, it takes awhile to filter the water and it’s just a lot of standing and waiting around that I don’t have energy for.

So one of the luxuries I splurge on is gallons of distilled water from the grocery store. (Regular bottled water tends to just be tap water from somewhere else, which means I’m probably still going to react to the chlorine.)

I still try to use my filtered water when possible, especially for when I’m actually cooking food. (Distilled water doesn’t taste particularly good.) But this process saves me energy.

If you *don’t* have a problem with your tap water, I’m very happy for you! You’re probably going to want some kind of lemonade pitcher or something to bring tap water to your table set-up.

If you have one of those fancy sinks with a removable water nozzle, then try bringing the water to the pitcher rather than lifting the pitcher in and out of the sink.

A note on carrying water: whenever you can, just slide the heavy container of water across the counter rather than lifting it. (Or for jugs of distilled water, maybe slide it across the floor.)

When you lift it, try to use two hands if possible: one to hold the handle, and another to support the front of the pitcher.

Prep your foods: measure grains into the mesh strainer, or place vegetables there.

Place the strainer in the bowl.

Pour water over the food in the strainer. If washing grains, stir with the metal spoon. Try to watch your wrist posture to make sure you’re not hyperextending anything, and switch hands as needed.

Mesh strainer filled with rice. Strainer is sitting in a bowl of water as described above.

Lift the strainer out of the bowl and let the water drain. I typically rest my wrists on the edge of the bowl for this part. You don’t have to drain every last drop. Put the strainer on the large plate.

Mesh strainer with rice sitting on a plate, as described above.

For this next part, we’re going to empty the bowl of water into the bucket. My back hates me if I lift and turn, so I typically adjust my chair so that I can maneuver the bowl over the bucket without turning my upper body.

Bucket on a tile floor filled with some grey water.

You can repeat this process multiple times as needed. I typically only do it once or twice for washing vegetables. However, with grains the goal is to rinse them until the water runs clear. I’ve found that is typically three or four times.

What am I doing with all of that rice? Well basically I dump it in my rice cooker and follow the instructions. Then I freeze the rice in one cup containers, and reheat them later.

I’ve also done a similar process with other grains such as quinoa, millet, and sorghum.

I know it can be hard to keep track of instructions when you’re dealing with brain fog, so here’s a basic overview:

1. Assemble supplies at your comfy seat and table. Be careful of posture especially when moving heavy things or walking.
   • fine mesh strainer (for grains) or colander
   • large bowl (one you can fit the strainer in comfortably)
   • large spoon, preferably metal
   • large plate (one wider than the bottom of the strainer)
   • bucket
   • comfortable chair
   • table or counter that you can reach while sitting in the chair
   • roughly one gallon of water
   • whatever grain or vegetable you need to wash
2. Measure food (if desired) and place in strainer.
3. Place strainer in large bowl.
4. Pour water over food.
5. Swish the water around with the metal spoon.
6. Remove strainer and place on large plate.
7. Adjust position to avoid lifting and turning.
8. Carefully empty large bowl into bucket.
9. Repeat steps 3-8 until food is clean
10. Cook food as desired.
11. Use bucket of grey water to water plants, flush a toilet, or just pour it down the sink if you’re completely exhausted.
12. Yay! You did it.

Eating with MCAS: condiments

[This post includes discussions of food and dietary restrictions/allergies]

I never thought I would miss eating vinegar so much, but vinegar turns out to be a fairly essential ingredient in a lot of condiments: salad dressing, ketchup, mustard, mayonnaise, hot sauce, you name it.

A lot of people with mast cell disorders have trouble eating vinegar. Vinegar is aged, and the aging process releases more histamine into the food. Additionally, some people just have trouble with the acid (particularly those with things like interstitial cystitis).

I currently do okay with occasional rice vinegar. There was a time when I was even able to eat ketchup from the store. Mast cell related food intolerances can be very individual, and also can vary depending on how inflamed your body currently is.

Vinegar is one of those things where you don’t realize how much you eat it until you need to avoid it. And it can be really hard to know like, what else can you put on your food to make it taste good?

The following is a basic list of no-vinegar sauces. However, some of them may include other potential mast cell triggers (such as nuts or garlic). Please consider this a sort of brainstorming session, with the understanding that you might need to adapt or omit some of the ideas on this list.

I have also had luck substituting lemon juice for vinegar, although obviously that might not work for everyone. I currently can’t eat the preservatives in the bottles of lemon juice available at the store, but I do okay with fresh squeezed lemon juice. My plan is to squeeze a bunch, then freeze the juice in a mini ice cube tray so I can just add them when necessary.

Additionally, if you’re looking for a sour taste that isn’t acidic, you might want to try adding ground sumac. This is a Middle Eastern spice that is used in za’atar spice mix. Sometimes sumac is sold mixed with salt, so be sure to double check before you buy it.

With no further ado, here is a list of no-vinegar condiment ideas:

– Thai peanut sauce *
– Gyoza dipping sauce *
– Teriyaki sauce *
– Herb-infused olive oil
– Truffle oil
– Olive oil and salt
– Garlic aoili *
– Chutney *
– Nut butter
– Citronette +
– Tahini sauce +
– Hummus +
– Mashed avocado +
– Guacamole +
– Bruschetta sauce +*
– Pico de gallo +*
– Chinese table mustard *
– No-mato sauce *

Dairy-based sauces

(Vegan recipes may work as an alternative if you’re avoiding dairy)

Cheese sauce
Salsa con queso
Spinach/artichoke and cheese dip
Labne
Pesto +
Tzatziki sauce
Raita

Symbol guide:

* recipe typically includes vinegar, but can be adapted to exclude vinegar
+ recipe typically includes citrus or another type of acid, but could be adapted to exclude this

If you’re looking for information on how to adapt recipes to avoid allergens, I’ve got a basic primer available using pesto as an example.

POTS First Aid

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.

Exercise with fainting/dizziness

[Image of a femme person laying sprawled on the floor as though they recently fainted. Image via Samantha, licensed under a Creative Commons Attribution 2.0 Generic License]

[This post discusses exercise]

Awhile ago on Twitter, someone requested a post about how to exercise if you tend to faint or are dizzy. This is near and dear to my heart because while I don’t tend to pass out, my POTS makes me dizzy af. It’s been challenging to be able to do physical therapy. In this post, I will share what I have learned so far.

As always, this post is not a substitute for medical advice.

What’s causing your fainting/dizziness

It can be really hard to diagnose what is causing dizziness because there are so many bodily systems which can cause dizziness. Heart problems can cause dizziness, as can issues with the central nervous system and the inner ear. Fainting is typically  a defense mechanism the body implies when your brain is low on oxygen; when you faint you tend to fall over and then it’s easier for your body to get oxygen to your brain. Fainting can be caused by cardiac issues, neurological issues (such as POTS), and orthostatic hypotension (source).

It can be hard to find out why you’re dizzy or fainting; it took me three years from onset of serious symptoms to a diagnosis. My dizziness is caused by POTS (Postural Orthostatic Tachycardia Syndrome), which is an autonomic nervous system disorder that affects how the heart functions. Most of my tips are related to exercising with dizziness from POTS, so some of my Hot Tips may not be applicable to everyone dealing with dizziness and fainting.

The reason why it can be important to know what is causing your symptoms is that you will have different concerns when trying to exercise. For example, if it’s a cardiac problem, you may need to be careful with how much cardiovascular exercise you do. Conditions like Menieres Syndrome and POTS cause symptoms when you change position; therefore if you have one of those conditions you may need to use extra care when standing up or leaning backwards.

When in doubt, work with a physical therapist

If you are able to access healthcare, working with a physical therapist is potentially a good step in reintroducing exercise. I also know not every physical therapist is created equal; many practices focus on seeing as many patients as possible so you end up spending most of your session working with a tech. Additionally, physical therapists have different subspecialties; ideally you would see someone who is experienced working with patients with your condition(s).

One type of physical therapy I want to highlight is “Vestibular rehabilitation.” The word vestibular relates to your inner ear. Vestibular rehab is for people who have balance problems, dizziness, fainting, etc due to inner ear conditions. When I had vestibular rehab, the therapy focused on using other senses (such as my eyes) to compensate for my dizziness. The therapist put a belt around my waist and held on to it so they could catch me if I fell.

Vestibular rehab didn’t solve all my dizziness problems, but it did teach me some coping strategies. (I know it worked because if I close my eyes when I’m standing my balance goes haywire; I’m pretty sure I finally learned to compensate with my eyes.)

Choose your position wisely

Often people who are dizzy/faint have certain positions or movements which exacerbate their symptoms. For example, with POTS I have more trouble both with standing up quickly and also with standing for long periods at a time. Therefore, when I’m exercising I try to avoid exercises that are done standing or involve a lot of positional changes.

I use a recumbent bike for my cardio. With a typical upright bicycle, my legs are directly below my heart. This combined with POTS and cardiovascular exercise means that on an upright bicycle it’s extra hard for my body to get blood to my brain. What happens when your brain doesn’t have enough blood/oxygen? Dizziness and fainting. With a recumbent bike, my legs are stretched out in front of me rather than stretched out below me. This means it’s easier to get blood to my brain, and it helps minimize my dizziness.

Rowing machines (if you can manage them) are another cardio machine that is more recumbent. However, be careful; its’ easier to fall off a rowing machine than a recumbent bike.

I also do a lot of pilates-type exercises laying on the floor (or a bed). This way, I’m using my position and gravity to ensure that my brain gets enough oxygen and I don’t pass out or get dizzy. When I first started exercising, I even did a lot of exercises laying down with my feet propped up. This basically ensured that blood was draining to my head, and so I didn’t get as dizzy. (Just be careful not to get up too fast.)

My mom has Menieres’ syndrome, an inner ear condition. If she leans backwards, her inner ear gets confused about which way is up and she has a big flare. If you have a similar problem, try doing exercise that doesn’t involve bending backwards or moving your head around a lot .Certain yoga positions and exercise ball exercises are Not Good if this is your problem.

Strength training is good, actually

Maybe you have tried recumbent cardiovascular exercises and your body just refuses to do the thing even if it’s just for a minute. Maybe you don’t have access to a lot of equipment, or you can’t afford a pool pass.

Strength training can often be done at home with minimal equipment or things you already have around the house (like a beach ball for thigh exercises or tomato paste cans for weights). Isometric exercises are a type of strength training where you tighten and relax a particular muscle; these require basically zero special equipment.

I remember once I went to the doctor when I was doing a lot of gentle yoga. He asked me about what exercises I was doing, and when I told him about the yoga he didn’t congratulate me on doing what I could to move my body. Instead, he told me I “should” be doing 30 minutes of cardiovascular activity five days a week. I got really discouraged and I basically just stopped doing yoga, because what was the point?

The point is that some movement is better than no movement. Your lymphatic system literally needs movement in order to function well. So don’t be like that doctor. Maybe you can’t do cardiovascular exercise right now (or ever). Strength training is still important (especially if you have a connective tissue disorder), and there are a lot of gentle strength training exercises.

Personally, it was only after I had been doing months of strength training that I began to be able to do regular cardiovascular exercise.

Eliminate other triggers (if you can)

Sometimes other environmental issues can cause your dizziness / fainting to flare. For example, my POTS causes heat intolerance. In the heat of the summer, I avoid any kind of outdoor exercise. The area where I exercise also has a number of fans for extra cooling.

My body doesn’t sweat very much, which is part of why I have a hard time cooling down. I have recently started bringing a damp washcloth with me when I exercise, and if I start getting hot I dab the cloth on my face and arms. This helps keep me cool, and hopefully helps me avoid being dizzy.

Time your exercise around your medications

If you have any medications that help you cope with your condition, consider planning your exercise routine over when your meds are most effective. For example, I take salt tablets to help manage my POTS. I try to exercise 30-60 minutes after taking my salt tablets.

Prevent injuries

If you have a chronic condition that causes dizziness or fainting, chances are you’re not going to be 100% successful in preventing your symptoms. Fainting or dizziness can cause falls, and injuries from falls will definitely set back your exercise program.

So plan for potential falls.

First off, avoid tripping hazards in the area where you exercise. If you enjoy pool exercise, consider going with a companion in case you pass out in the pool or get dizzy while walking on wet tile.

Try to exercise in an area where the floor is padded in some way, so if you fall or faint you won’t crack your head on a concrete floor.

Find your challenge line

In Jackson Galaxy’s My Cat From Hell, Jackson helps families dealing with cat behavioral problems. Stay with me, this is relevant, I promise. Part of his process is figuring out a cat’s “challenge line”, which is a situation so stressful that the cat will lash out with aggression. The goal of this is that then in the future you can avoid pushing a cat past their challenge line, so they don’t need to use teeth or claws.

Think of your body as a distressed kitty. If you push it too far out of its comfort zone, it passes out or makes you extremely dizzy. If you can figure out your body’s challenge line (i.e., the point when you pass out/faint), then you can stop exercising before you get to that point.

For a long time when I tried to do cardiovascular exercise, I literally felt like I was dying due to how awful POTS symptoms made me feel. Exercise, ideally, makes you feel good and is a ticket to free endorphins. When exercise made me feel like I was dying, I did not want to exercise. Once I figured out how much exercise made me feel awful, I could plan to exercise *less than that* and thus hopefully minimize my symptoms.

Start low and go slow

Emergency rooms are full of “weekend warriors,” or people who haven’t done a lot of training or regular exercise deciding to do a lot of exercise on the weekend. This is a good way to get sprains and other injuries. Even for abled people, it’s important to start with a small amount of exercise and work your way up.

However, for those of us with chronic illnesses, dizziness, fainting, etc., it’s important to do even less than that. For a long time I felt like I shouldn’t even bother to ride the bike because I couldn’t even do ten minutes without feeling awful. It was discouraging because I felt like I “should” be able to do that much. I kept trying to force it, barreling across my challenge line, and feeling awful. Then I wouldn’t exercise for ages, and when I did I’d repeat the same mistakes.

When I first started using the bike regularly, I rode it for three minutes every couple of days. It felt like nothing, because I kept comparing myself to what abled people were able to do. However eventually I was able to increase how much time I use the bike. After a year of training, I can ride for 50 minutes at a time on a good day.

A lot of literature around how to work out is written for abled people. Many of the exercises and goals stated are simply unrealistic for a beginning exercise program for someone who is chronically ill. This is another reason to work with a good physical therapist: they can adapt exercises to your body, rather than trying to force your body to adapt to the exercises you think you’re “supposed” to be able to do.

So what exercises should I do?

Every body is different, which is why I usually stick to general principles rather than specific instructions. I was surprised to learn that when I’m not in a high school gym class being forced to run a mile, I actually like exercise. Like I said: free endorphins. The movement also helps lift the brain fog a little bit; I often get some of my best ideas while riding the bike.

If you hate exercise, you’re not going to do it regularly. So try to set yourself up for success: find a form of joyful movement that you enjoy (and doesn’t make your body feel like crap). And don’t forget to ease into it gradually; definitely more slowly than abled people starting an exercise program.

If you’re looking for places to start (other than with a physical therapist), I recommend looking into the following “gentle exercises”:

• gentle pilates
• gentle yoga (unless you have a connective tissue disorder, in which case I would discuss this with your doctor first and be very careful about selecting a teacher)
• recumbent bike
• rowing machine
• water aerobics
• seated dancing

(As always, this does not substitute for medical advice. Particularly if you have a medical condition that affects your ability to exercise, please check in with your doctor to make sure you’re not exacerbating your condition.)

Feel free to comment and suggest other forms of gentle exercise that dizzy/fainting people might enjoy!

Eating with MCAS: how do you know if a food is a trigger

[This post contains discussions of exercise, food and food intolerances, as well as dietary restrictions.]

“Photo of cultured mast cells at 100X using an oil immersion lens and an olympus digital camera. The cells are stained with Tol Blue, and might appear slightly degranulated as they were activated using an artificial antigen during the course of an experiment.” [photo and image description via Wikipedia]

One of the most important things I do to manage my Mast Cell Activation Syndrome (MCAS) symptoms is avoid known food triggers. It took me about six months to a year to figure out most of my food triggers, and also find alternatives that I could both eat and realistically prepare (thank the gods for freezers).

On Low Histamine Diets

But how do you know if a food is a mast cell trigger? There are a lot of different low-histamine food lists out there, but they’re often contradictory. Everyone with MCAS has different intolerances; some people may react to salicytes as well as histamine, some people are dealing with other medical conditions that also affect diet (such as diabetes or POTS’ high salt diet). Unfortunately, there isn’t a comprehensive list of MCAS triggers that applies to everyone.

My quick internal calculator for if a food is high in histamine — and thus something I am more likely to react to — is whether it’s aged, fermented, or slow cooked. As I understand it, all foods naturally produce histamine as they age. This is why I can be fine eating something, then leave it in the fridge for a couple days and try to eat the leftovers, and have a giant reaction. Sometimes I might not be able to tolerate a food prepared in a certain way, but I can eat it prepared another way. For example, I react to black pepper (which is aged), but I tend to do okay with a small amount of green peppercorns (a younger/fresher version of the same plant). Similarly, black tea is higher histamine than green tea, even though they are made from the same plant.

Freezing delays (but does not completely stop) the release of histamine in foods; that’s why I tend to cook a big batch of food on a good day and freeze it in individual portions for low-energy days.

Weirdly, I have been able to reintroduce vinegar into my diet (even though vinegar is uhhhh definitely aged). I’m really happy about this, because there are a lot of delicious sauces and salad dressings that involve vinegar. (If you are looking for salad dressing vinegar alternatives, I did okay with citronettes and tahini-based dressings; however if you can’t have citrus or sesame seeds those are not good options for you.)

There are some foods that I currently tolerate (tomatoes, potatoes, onions, garlic) that I know other people with MCAS often don’t tolerate. I am walking a delicate balancing act with them. I don’t want to eat so much of them that my mast cells start reacting to them, but at the same time I don’t want to never eat them and have my body forget how to process them. Cookie Monster talks about “sometimes” foods with regards to cookies; for me these potential triggers are my “sometimes” foods.

You can’t know if you’re reacting to a food until you know what your reactions feel like

Back to my original point: how do you know if you’re reacting to a food? Well, the first step to knowing if you’re reacting to something is knowing what your reactions feel like. Again, this is another area where you can’t rely solely on what other people with MCAS tell you about their reactions.

MCAS is so difficult to diagnose because the symptoms are so heterogenous (ie varied). Everyone has mast cells throughout their body, although they are most heavily concentrated in systems which directly interact with the outside world (e.g., mouth, genitals, eyes, lungs, urinary system, digestive system, skin, ears). Therefore, while MCASers can have symptoms in any system of the body, our symptoms tend to be most heavily concentrated in systems with more mast cells (e.g., mouth, genitals, eyes, lungs, urinary system, digestive system, skin, ears).

Additionally, a mast cell reaction can happen anywhere from immediately after coming into contact with a trigger up to 72 hours later. And of course we don’t just react to food triggers, but also potentially to environmental triggers, fragrances, cleaning products, cigarette smoke, etc. Since there are so many variables in mast cell triggers, I usually have to test the thing I think I reacted to on a good day and/or several times, to make sure that I actually react to it.

What do mast cell reactions look like?

When I first approached my doctor to talk about a potential MCAS diagnosis, my primary complaint was that when I drank coffee or ate certain foods like dairy, I would immediately have 12 hours of cramping and diarrhea. We started me on H1 and H2 blockers and I gave up coffee and cow dairy, and the horrible diarrhea fests mostly stopped. However, I was still having reactions: they were just more subtle.

Let me share a little about the types of reactions I tend to have. The easiest reaction for me to identify a trigger is when I eat something and it immediately makes my mouth burn and my taste buds swell up. The second easiest one to spot is when I start flushing, and my face and ears turn bright red.

Additionally, certain environmental triggers tend to make me immediately have a migraine or start to feel Extreme Brain Fog. It’s sudden, one minute I’m able to converse fine, the next minute I’m struggling to find words and even have aphasia. I also struggle more with proprioperception, and start tripping over nothing or miss my mouth when I’m trying to eat. More recently, I’ve started having skin reactions such as swelling, a rash or hives, and redness. In these situations, it’s an easy call for me to recognize that I’m having a reaction and need to take my rescue meds.

I also have more delayed reactions which, as mentioned above, make it harder to identify the precipitating trigger(s). For me, these reactions typically resemble acute infections. The times when a doctor has actually run a culture to determine the type of infection, there is no actual infection. For me, these are typically UTI-like symptoms, sinus/upper respiratory infection-like symptoms, or gastrointestinal infection-like symptoms.

I still struggle to know exactly what precipitates these kinds of symptoms, because they tend to happen awhile after my exposure to the initial trigger. I know I could theoretically chart all my food and try to track it that way, but (a) I don’t have energy for that, (b) that’s a trigger for disordered eating for me, (c) that still leaves environmental triggers, stress, physical exertion, etc. Indeed, it’s entirely possible that I’m reacting not just to one trigger but a combined effect of several triggers.

Generally if it’s an isolated event I don’t worry too much about identifying exactly why I’m having the reaction, I just treat it. If it keeps recurring, then I’m more diligent about identifying the cause.

I used to worry about trying to figure out whether or not my infection-like symptoms were an actual infection or an MCAS flare. However, then I read Mast Attack’s posts on the relevance of mast cells in common health scenarios (part 1 and part 2). I realized that many of the symptoms of an acute infection, such as a sore throat or a cough, can irritate mast cells and cause degranulation. So I decided that for me, if I noticed infection-like symptoms I would take my rescue meds right away: either it was just a mast cell flare, in which case I was treating it appropriately, or it was an acute infection, in which case the rescue meds would hopefully prevent secondary mast cell symptoms. (This is not a substitute for medical advice; please discuss this strategy with your doctor.)

What do *your* mast cell reactions look like?

Unfortunately, I can’t tell you exactly what your mast cell reactions look like. However, I can give you guidance on how to figure it out.

Personally I recommend keeping a notepad, Google doc, etc, and make a list of mast cell symptoms you experience. It should be a living document, that you update as you discover more symptoms. In my experience — and I’m not alone in this — when you start treating MCAS and eliminating triggers, certain symptoms may start to go away that you had no idea were connected to MCAS. If you keep track of these symptoms and they reoccur, you’ll know that it may be because of an MCAS trigger.

For example, for my entire life my gums have bled when I brush my teeth or floss. I’ve gotten so many lectures from my dentist about flossing more, to no avail. When I found out about Ehlers Danlos Syndrome/connective tissue disorders, I figured that the tissue fragility explained why my gums kept bleeding. More recently, I changed to a new toothpaste (Cleure) and started brushing my teeth with filtered water (once I realized I react to the chlorine in tap water). My gums stopped bleeding with regular brushing, and even my dentist noticed that they bleed a lot less during cleanings. (Why would MCAS cause bleeding? One of the chemicals mast cells can release when they degranulate is heparin, which is a blood thinner. That’s my best explanation.)

So now I know: if my gums start bleeding again, it’s possibly because I was exposed to an MCAS trigger or triggers.

Identifying what caused your reaction

When I have a reaction, how do I determine what might have caused it? As mentioned before, there’s a lot of reasons why I don’t keep a log of everything I eat or put on my body or smell. This recommendation came to me through the grape vine of the MCAS patient community: only keep a log when I have a reaction. Basically, when I react, I write a list of what I’ve eaten or drank lately, as well as any new body products etc. My memory is definitely not the best, so it’s possible that I may leave things out. However, over time I will have several such logs and potential errors should average out.

When I have enough data, I can compare the lists and see if there are any common themes to my reactions: every time I use a particular cleaning product, for example, or when I eat foods containing chocolate (cocoa beans are fermented as part of the process in becoming chocolate).

Sometimes if it’s a food I really like, I don’t eliminate it immediately. Rather, I wait until a good day when I haven’t been exposed to known triggers. Then I test, for example, chocolate, and see if I react. If I do, I know that’s a food I should probably avoid. However, if I don’t react, then it might be a food I only react to slightly. Something that only produces symptoms if I have been exposed to other triggers in the same day. In that case, it’s a matter of personal preference: some people may choose to eliminate that trigger entirely. Others may choose to selectively eat that trigger, but only on days when they’re not already reacting. (Again, this is not a substitute for medical advice; please discuss this with your doctor.)

You cannot avoid every trigger

It’s tempting to focus on eliminating every mast cell trigger so you never react. However, I honestly don’t think that’s possible. For example, I can react to physical exercise. Yet exercise is how I manage my connective tissue disorder and my POTS. If I don’t exercise in order to keep my mast cells happy, then I will have more pain and fluid retention, both of which can be mast cell triggers. So the question for me then becomes: how can I minimize my reaction to exercise and build a greater tolerance.

The physical act of eating causes our bodies to release histamine. Never eating is not an option (and tbh starvation causes stress… which is a mast cell trigger.) If you find yourself reacting every time you eat, it doesn’t mean every food is a trigger. It’s more likely that you are already flaring, and the histamine released by eating is the straw that broke the camel’s back.

Additionally, as mentioned above, acute infections often cause mast cell degranulation in response to their symptoms. “Not getting sick ever again” is not something I can realistically do. I also have chronic illnesses (which cause pain) and mental health issues (which can cause anxiety). Spoilers, both pain and anxiety are mast cell triggers. I can’t avoid them, my body literally does that by itself.

It’s important to note that I have not had an anaphylactic reaction to my MCAS triggers. The closest I tend to get is that sometimes I have a big reaction and basically can’t stop vomiting without rescue meds. Obviously, it’s best to avoid triggers which cause life threatening symptoms such as anaphylaxis, anaphylactic shock, or constant vomiting. (For more on how to recognize anaphylaxis versus a regular mast cell reaction, check out this post from Mast Attack.)

My goal is not to eliminate my reactions, which is impossible. My goal is to have a better baseline level of symptoms, and also have appropriate rescue meds to treat reactions. I don’t intentionally expose myself to triggers, obviously, but some mast cell degranulation is unavoidable.

Conclusion

In order to manage MCAS, it can help to eliminate triggers. It’s a long process to discover your individual triggers, because initially your “big triggers” (such as 12 hours of gastric distress) might be masking other symptoms. As you start to eliminate triggers, you may initially feel worse because you’re finally noticing some of the more subtle symptoms.

A good place to start is to gradually limit foods high in histamine, scented cleaning supplies, etc. It’s tempting to eliminate a bunch of potential triggers at once; however that can make it difficult to tell what you’re reacting to. Try to be a good scientist: eliminate as many variables as possible, so you know why you’re having a reaction.

In order to know you’re having a reaction, you have to know what your reactions look like. Keeping a living document to keep track of your symptoms can help you identify mast cell triggers. Some reactions are immediate, and then it’s more easy to identify a trigger. Some reactions are delayed, and you may need to keep a log (either a complete log, or only when you experience a flare).

If you’re like me, you may find keeping a food log or trying to eliminate every trigger can cause a flare of mental health symptoms. In this case, you may need to modify how you manage your MCAS to preserve your mental heath. As much as possible, let go of the idea of perfection or eliminating every reaction. Strive for a better baseline.

How to remember to do self care when your flare makes you forget self care is a thing

Selfie of me, a white envy, laying down in a pile of pillows during a flare.

One of the frustrating things about having a chronic illness is that even when there are things I can do to help a flare, often when I’m actually in a flare…I completely forget what they are, or even that they exist.

I don’t know if it’s because most flares make my brain fog kick in, so I just have trouble remembering things like words or “hey when this happens I should take my rescue meds”, or if I’m in some sort of fight/flight state where I’m so focused on avoiding danger that I can’t actually problem solve. Either way, it’s extremely frustrating because timely interventions can help my symptoms.

I’ve been thinking about how to cope with this, and I remembered how when I was first struggling with my bipolar disorder, mental health providers made me write approximately one thousand lists of my coping skills. I mean, part of what this did was force me to confront the fact that I didn’t really have any health coping skills. But that was something I could work on with a therapist.

Another tool I’ve learned from mental health issues is using WRAP worksheets to develop not just a crisis plan, but also be able to identify in advance things like “what it looks like when I’m angry” and “things that help when I’m angry.” The “in advance” part is key, for this system you basically outsource all the hard thinking to when you’re not in crisis. Then when you’re in crisis, hopefully you can refer to your worksheet (or you’ve had to write it down so many times that you actually remember which things help).

I thought I’d try to develop something similar for some of my other disabilities. This is also helpful in communicating my access needs, because I can just hand my worksheet to a loved one and that can help them help me. Some of my conditions are less common, so I’ve also included space to explain a short description of what my disability is.

Here is a bare bones outline of what I have in my worksheets, in case you would like to use this/adapt it for your own condition. I’ve found that even just writing down signs that a flare is incoming has helped me be able to use rescue meds and other coping strategies as soon as one of my conditions is starting to act up.

Feel free to use this format for your own conditions, or adapt it as you see fit. I only ask that you do not charge money for access to this information.

Care and keeping of ____, outline
Issue:
What it is:
My baseline looks like:
A good day looks like:
Early warning signs of a flare:
Intervention for early warning signs of a flare:
Signs a flare is happening:
Intervention when a flare is happening:
Signs I need to seek emergency medical attention:

Things emergency personnel can do to help:
The doctor who is monitoring this condition is:
Things which help me avoid a flare:
Triggers for a flare:
Terminology:
For more information on this condition: