Favorite Things!

It's been a while since I've made a blog with my favorite things. The world has changed. Brands have come and gone. I've discovered new products to love. So... what do I love right now? 

Culina Dairy-Free Yogurt!

https://www.culinayogurt.com/flavors

I've only ever seen it at Whole Foods and Natural Grocers, but I know some small local organic markets carry it too.

I don't really need to be eating any yogurt on my diet, but I need an occasional treat! I can't have any dairy, and most non-dairy yogurts are not good because they're mostly starch and sugar, and I think it creates a bad texture anyway. There is only one single brand I've been impressed with, and that's Culina. They don't use starch, they ferment the coconut with agar. Agar is from seaweed and is rich with fiber, which I love. They sweeten with maple syrup, a nutrient-dense whole food. It's the only non-dairy yogurt I have found that is not junk food. It's so creamy and thick too!! It has the same texture as dairy yogurt! 

The mango flavor I'm looking at right now has 10g of sugar and 15g of carbs, but the others favors have 7 or 8 grams of sugar. All the flavors contain 5 grams of fiber. The net carbs are lower than most non-dairy yogurts, so I eat it as a treat on occasion. 

But the Plain and Simple flavor has 0 g of sugar and 4 carbs, with 5 g of fiber! So I like to buy a tub of it and make small smoothies with it. I add protein powder, allulose, and marshmallow root... along with a few berries and unsweetened cacao. Sometimes I'll use frozen avocado instead. I'll thin it with coconut milk or water. It's great! It's low in sugar, although it has some carbs, but it's a treat! I should probably add fiber to it too. 

I really want to try making something new with it next, like tzatziki! It has the perfect texture for it, unlike most non-dairy yogurts. 

Hippo Sak (Plant-Based) Trash Bags!

https://www.hipposak.com/trash-bags/plant-based/

Trash bags. They're required where I live. Avoiding plastic is really important to me, and going zero-waste is not easy (or even possible in some situations.) You'll see me recommending products that come in plastic, but when there's an alternative choice that's good, I'm going to choose it. I've tried many non-plastic trash bags before, and they almost all don't work. They're designed to biodegrade too quickly, they rip too easily, they're not really the right size for the can and they don't stretch, etc. Loads of problems. But.... Hippo Sak. They figured it out. 

I'll be perfectly clear - I don't really know if they're being honest that their bags are plant-based because of how good they are. They say they are made of sugar cane, but they say they're recyclable and not compostable. It's suspicious because these bags are super durable and strong. So, even if they are made of plastic, they're the best trash bags I've ever used. They have ZERO smell (very important for MCS issues), and all plastic trash bags at least smell of plastic (and so many have fragrances added, which is so unhealthy!) 

Another bonus is that this brand is made in the USA!

Reel Toilet Paper

I have a subscription to toilet paper. Every 12 weeks Reel sends me a box of 24 rolls. It's almost always perfect timing, and I never have to think about it. But the best part is, Reel is the best quality toilet paper I have found. I don't mean in terms of how it feels (I like it, but it's strong instead of soft), I mean in terms of how it's made. It's made from virgin bamboo, without any additives or chemicals to be concerned about. Recycled toilet paper is full of ink, plastic, perfumes, and other agents of the paper it was made from. Many brands have been tested positive for PFAS. (Read that Time article. It's important. This is not only a major problem for our healthy, but our water is seriously polluted with PFAS because of things like toiler paper.) 

Also, this toilet paper comes shipped in a box, and each roll is wrapped in paper. There's no unnecessary plastic. I've never had a box ruined by moisture. 

Want a discount? Click here: 
reelpaper.com/s?SARAHLANGER

Four Sigmatic Protect

Protect Mushroom Blend - Four Sigmatic

(They don't offer coupon codes for friends, sorry, but I explain how to save the most money buying this product below.)

Mushrooms are all the rage, and with good reason. They have incredible benefits! They're neuro-protective, support the immune system, help regulate hormones, improve mental clarity, help us adapt to stress... and so much more. I love this blend because it has 10 mushrooms that cover all my bases, and I feel noticeably more resilient because of this blend. I add it to my matcha every morning and I love it! I drank this every day during the pandemic, and I never got Covid. That might have more to do with my genetics (I mean really, how is it possible that I never got Covid?), but I love to say that these mushrooms really did protect me!

But why Four Sigmatic, why not other brands? Four Sigmatic is expensive! This is truly a case of "you get what you pay for." Four Sigmatic is really careful about how they grow their mushrooms, so they control the process to reduce the risk of mold, yeast, bacteria, pesticides, and other contaminates. They get 3rd party testing on every batch. They grow on logs, not on food products I'm allergic to (like some brands grow on oats.) They are certified organic too. Also, and perhaps most importantly, they use the fruiting body, not the mycelium. Cheaper brands are using the mycelium bound to grains like oats, not the fruiting bodies. The mycelium grows the mushrooms, but has not been studied. We don't have any evidence that the mycelium offers any of the same benefits as the fruiting bodies. I love Four Sigmatic's high standards!

The trick to making Four Sigmatic affordable is to subscribe to a bundle. So every 3 months they send me my Protect blend, and it comes out to $21 per bottle (and I use one bottle per month.) It's usually around $24 per bottle in stores. Once you have a subscription, you can add other products to each delivery without needing to subscribe to those products too. So when they come out with a product I want to try, I order it once along with my subscription. I get the subscription discount that way too. If I don't want to buy it again, I don't need to. 

Almooni Loofahs

Check it out on Amazon

I love real natural loofahs (as in, the plant, not the plastic net balls.) No plastic, because they're plants! They're gently exfoliating. They lather my soap well. They get me clean. They're antibacterial because they breathe so well. But what I love most about them is the sensory experience on my skin. I can rub it against my skin in the shower and feel like I'm gently scratching without breaking my skin or causing irritation. It's so warming to me, because I can rub and rub and get blood to the area, which gives me a lot of relief. This might sound really strange people with good circulation. 

This particular brand is my favorite because they're so carefully crafted. They are extra careful to remove all the seeds, unlike other brands I've tried. They offer options with a cotton backing and a strap, which are so comfortable to use in the shower. My favorite, however, are their giant ones. I can scratch at big areas of my skin, which is heavenly. Again, it might sound weird to those of you with good circulation. But I'm telling you... these huge loofahs are the best. 

Briut Electric Toothbrush Heads

I always get them on Etsy

These toothbrush heads are made of bamboo with plant-based (non-plastic) bristles. The listing no longer says it and their website is down at the moment, but the bristles are made from castor oil. Yes, they actually work really well! They're soft enough to feel comfortable, but they stay stiff and actually do the job. They're supposed to last about 3 months each too, so it's very cost effective. I tend to use my brushes up a little faster because I can't seem control how much pressure I use while brushing... but hey, they get the job done, my teeth feel clean without sensitivity, and I'm saving money on a plastic-free option! 

I did buy the Briut bamboo electric toothbrush initially, but the first one didn't take a charge, so they sent me a replacement. (Amazing customer service from this small company.) The 2nd one worked well for one year, then stopped charging. At that point more reviews had come out and many people said the same thing. It's not really Briut's fault - a few brands were putting their brand names on the same exact toothbrush. The manufacturer was the issue. I discovered that I loved the electric toothbrush, so I ended up buying a more reliable Soniccare. So now I buy the toothbrush heads that fit the Soniccare, and I'm happy has a clam. 

Sleeping Bean Body Pillow

I bought mine on Etsy

This is not your average body pillow. This is a body pillow made from organic cotton and stuffed with Kapok, a plant-based organic material that never seems to go flat (I've had this pillow for at least 5 years). This pillow isn't spongey or too soft to be supportive. It molds to my shape and cradles me. This helps me a lot while I'm sleeping because it helps my legs and arms stay in a good position all night. I put the bottom between my knees and I hug the top, and my achy muscles are happy. I don't put my head on it though, I have my own latex pillow that works better. 

Also.... This pillow was extremely helpful while I was recovering from my permanent toenail removal. It kept the blankets off my foot, but I was able to keep my feet under the blankets to stay warm. Super helpful!! 

Tencel Bed Sheets

Also bought this on Etsy

When we spend so much time in bed, the sheets are incredibly important. Normally I'd be most excited about organic cotton, and I have a few sets that I like. Then I bought these Tencel sheets, and honestly, it's hard to go back to cotton. Tencel is a wood-fiber from eucalyptus trees, and it's natural. It needs to be processed to be turned into a fiber, but unlike some cheap non-organic bamboo fibers (viscose and rayon) I don't seem to have problems with any Tencel fabrics. 

Tencel is very silky smooth. It's very breathable. It's very cooling. So I can roll around on these sheets like I'm rolling around on silk, with no friction at all. It honestly makes a huge difference because it takes less effort for me to move around in bed. When I haven't shaved my legs my hair doesn't get caught in the fabric the way it gets caught in cotton. 

This might sound gross... but when you have ME/CFS, it's just reality. I can get away with washing them less often. Cotton gets rotten a lot faster. 

There are several brands that make Tencel sheets, but I chose this brand after talking with the owner. They don't use fragrances, their dyes don't bother me, and they're slightly oversized so they can fit my deep mattress. I don't have to put a lot of effort into pulling on the sheets to stretch them to actually get onto my mattress. They're large enough. 

I have been sleeping in the same exact set of sheets for 4 years now, very rarely switching to my flannel sheets when I'm cold. The sheets are just now starting to show a tiny bit of wear with some fraying around the seams, but they're still just as soft and silky as ever! You all know how much of a fan I am of longevity. 

More "favorite things" blogs to come soon... 

Common Advice and Why It's Bad Advice for ME/CFS

Advice that doesn't make sense for people with ME/CFS, POTS, Fibromyalgia, and other energy-deficient diseases. Yikes. 

Before we begin, please understand that I'm saying this as a person with moderate and NOT severe ME/CFS. Severe ME/CFS is a different issue as they lose all independence. I'm about 70% housebound these days. I can run out and do short quick errands during my good hours. I can work a few hours a week. I can manage some chores most days. At my best, I get about 3 to 4 usable hours of energy each day. At my worst, I'm in bed most of the day (and I have 2-3 days like this most months.) 

And so... for the BAD ADVICE:

Food Prepping

A hallmark of ME/CFS is Post Exertional Malaise (PEM), which means that after a person spends too much energy then they crash and have to completely rest until they recover. PEM rest can take a day or two, or it might take weeks. Depends on the severity of ME/CFS. So the recommended method for avoiding PEM is something called "Pacing." Meaning, the person does a little bit of work at a time, but not enough to trigger PEM, and then rests. Then does a little more work later, but not enough to trigger PEM, then rests again. And so on. Basically, doing too much (spending too much energy) all at once means more time recovering in bed than if we pace ourselves and avoid doing too much at once. We tend to be able to do more if we're not regularly crashing ourselves. 

So... this idea of "Food Prepping" is confusing to me. It would take HOURS to do all the prep at once. I know people who spend their entire Sunday afteroons food prepping.  Hours of chopping veggies, cooking, portioning, washing dishes, cleaning up... noooo. That's way too much work all at once! This makes sense for couples with kids who both work long hours and can't find time or energy to cook once they're home in the evening. It doesn't make sense for chronic illness. Chronic illness is better when food is kept simple, and frankly, this isn't a simple way to approach food. Food prepping is strictly a time-management solution for busy people.  

Let's explore how I eat for an example of pacing:

Breakfast is usually just frozen organic sausages, and all I have to do is put them in a pan with water, put a lid on it, let them boil while I take all my pills, and then eat them. Easy. And how could I food prep that? I only eat protein for breakfast due to my reactive hypoglycemia issues, so there's no need for me to complicate breakfast with things that require a lot more energy to cook. 

Lunch for me is typically a simple salad. Salad isn't exactly the best thing for me because raw foods are really hard for me to digest, but it's easy and I need easy (and I have digestive enzymes I can take, ha.) I make it of romaine, avocado, cucumber, organic deli meat, and light sugar-free and seed-oil-free dressing. I might add in some artichoke hearts, olives, or beets from glass jars. Sometimes I add sprouted nuts and seeds too. When I say avocado, I usually mean pre-made guacamole that I scoop out. Honestly, it's really simple. The work comes from shredding up the deli meat in my hands and washing my hands. How could I food prep any of this? Everything I add to my salads is already prepared.

My afternoon snack is beef jerky or a protein shake. No food prep there.

Dinner. Dinner is where I need energy. I'm way better off cooking every dinner from scratch though. I thaw my meat the day before. When it's time to cook dinner, I go slowly. I start with chopping veggies if I need to, and then I store what I don't use in a container in the fridge at that point. For instance, I usually don't use a whole zucchini for one dinner, but I'll chop the whole thing (since I'm chopping anyway) and store the rest. My husband likes to chop his own veggies (he eats onions and peppers, and I can't.) I also buy pre-cut veggies when available, like shredded carrots or sliced shitake mushrooms. But my favorite? I buy frozen veggies and dump them in the pan. Frozen veggies are the best of the best for me. They're already cut, I can buy them in bulk, and they require no extra work.

I don't make big fancy dinners - I keep it simple. But my diet is also simple. I always eat meat with veggies, nothing else. Almost all my dinners are low-management. I pour walnut or coconut oil in a pan, add my chopped veggies, season them, and let them cook. Then when they're halfway cooked I add my meat. Sometimes I use a whole uncut chicken breast, sirloin steak, or salmon steak. All I have to do is season it and flip it. Other times I'll chop the meat to make stir-fry, then stir occasionally until cooked. I might add coconut aminos, coconut milk, lemon, etc.  You're never going to see me cooking anything that requires a lot of steps - but I also can't eat grains, beans, dairy and sauces, or other things that require extra work to cook. 

Oh, and how I love my Instant Pot!! It takes the work out of making roasts, stews, and soups. I always buy a quarter cow and store it in my deep freezer, so I get a lot of meat that needs to be slow cooked. The Instant Pot cooks it really well and saves me loads of effort over crock pots and the oven!

While food is cooking I wash the dishes I can wash (I do not have a dishwasher currently..... that's a major issue with my energy levels.) 

Note: I have a husband. When I'm really bad he will always take over cooking dinner. We avoid eating out, but we will Doordash if necessary too. I also keep cans of soup in the pantry for quick and easy dinners. I have multiple back-up-plans. 

Keep it simple, don't food prep. Spread your energy out into smaller chunks. Don't spend too much all at once. For many with ME/CFS, cooking anything at all would be way too much energy. In that case, you're going to need a caretaker or rely on food delivery. That makes this a moot point. 



Taking High Doses of Vitamins

It's probably not going to "cure" you unless you have severe deficiencies, in which case, you don't have ME/CFS. You have nutritional deficiencies. It's a really common cause of chronic fatigue, but it's not the cause of ME/CF Syndrome. Chronic Fatigue Syndrome and Chronic Fatigue are not the same, which is why CFS is going by ME these days. 

We need proper nutrition to feel our best, and getting proper nutrition will help reduce how bad we feel. If we're deficient in vitamins and minerals it can present as muscle pain, nerve pain, brain fog, insomnia, bad skin, losing hair, poor vision, ringing in the ears, and more. Yes, if you are deficient in anything, supplementing can help relieve symptoms. That said, ME/CFS is not an illness of nutrition deficiency. ME/CFS research is still determining how ME/CFS works, but we have evidence that it's an immune cell deficiency, or mitochondrial problems. There's also evidence that it's a brain fluid leak. 

The problem, however, with just taking some random mulivitamin or a B-Complex is that they might make you worse:

1. There's no regulation on supplements. There's no FDA monitoring them. So you can't know what you're really buying... unless you're buying from brands with 3rd party certifications, in which case you're going to pay a lot more. It's worth the cost of good quality vitamins if you need to take one. But so many of these cheap vitamins are not what they claim to be, and there have been lawsuits because of this issue. Walmart and Target store brands tested some pills and found they were just filled with fillers, not what the label said they were. 

2. So many multivitamins use forms of vitamins that are synthetic and not well absorbed. When you buy a multivitamin from Walmart or GNC, you're not getting the same vitamins you'd eat in food. You'd never find cyanocobalamin in food, but that's the most common form of vitamin b12 in supplements. What they do is bind cobalamin to cyanide (yes, the poison in apple seeds) and call it vitamin b12, because the cyanide has the ability to get the cobalamin into your blood stream really easily (cobalamin on its own would pass right through you without getting absorbed.) Then your body has to clear out the cyanide (poison), which takes a lot of energy - and we can't afford the energy to be detoxing like that. The amount of cyanide is considered to be well below the toxic limit, so it's considered safe. That said, people who need to take very high doses of B12 (very common in those with fatigue illnesses) often don't have bodies that can handle any extra substance to detox. I have talked with people in groups who claim that these synthetic vitamins tend to give them a lot of gut pain, trigger IBS issues, and cause flare ups. When they take the more expensive natural forms they don't have these problems. If you want to read even more about this issue, I recommend reading Dr. Ben Lynch. He is a leading researcher on genetics, and how things like forms of vitamins affect our DNA. 

3. So many vitamins contain super high doses of vitamins you can actually overdose on. Look at the supplement facts on any vitamin. The first on the list is vitamin A, a fat-soluble vitamin (meaning your body stores all of it in your fat instead of passing excess through you in your urine.) Fat-soluble vitamins are vitamins you can overdose on, and you can actually get sick from vitamin toxicity. Vitamin A is always in a really high percentage (like 1000%+ RDA) because these companies want you to feel like you're getting your money's worth. Except you really don't need that much vitamin A. You really really don't. 

4. Vitamin toxicity can cause a lot of problems. I am prone to vitamin b6 toxicity, which causes my neuropathy. The moment I start feeling the tingling in my feet return, I know I've had too much b6 in my food. When that happens I have to avoid sunflower seeds and poultry for a while, because they're the foods I eat with the highest amount of b6. I wrote a blog post on this.... let me go look for it to create a link..  Wait no... I didn't. HOW DID I NOT WRITE ABOUT THAT. That was a MAJOR issue I went through! Scrolling through my blogs, I see that I did touch on it in a few different posts, and it started here. I need to write about b6 toxicity!!! It's so important!! 

Yoga - Or Exercise in General

Let's go back to what ME/CFS is: It's defined as chronic fatigue that is made worse by exercising, causing Post Exertional Malaise (PEM.) Exercise makes ME/CFS worse. 

Once upon a time in the UK, the medical recommendations for treating ME/CFS was Graded Exercise Therapy. Julie Reymyer wrote an excellent article for Slate Magazine on this issue, explaining why it damaged patients and how this terrible treatment came to be the recommended treatment. 

Deconditioning is a real issue though, so it is good to move as much as we can with the energy we do have, as long as we don't do so much that it triggers PEM. I am able to go for a few walks each week, usually about a mile. They have triggered PEM for me sometimes, but when they don't, it's worth walking. It feels good if I don't push myself too much. 

But I also want to explain why Yoga is a bad recommendation for people with POTS. Yoga involves a lot of inversion, and POTS is triggered by postural changes like inversion. A yoga instructor that understands POTS can be helpful, because there are some yoga practices that don't involve postural changes, but it will be hard to find such an instructor. People with POTS do need to strengthen their legs to help with the blood pooling, but they need exercises without postural changes. I really like exercises in which I'm laying on my back or stomach. 

Essential Oils

Oy vey... essential oils. What a huge topic! As someone with MCS (Multiple Chemical Sensitives), I don't really like to recommend EOs because they all contain VOCs, which can trigger reactions. A lot of brands use formaldehyde doners in their oils too. I personally don't have problems with some EOs, and I'll use them occasionally because they do help. I don't use them for perfume or aromatherapy, I use them for things like massaging blood into feet or treating my skin when I get hives or rashes. But for the purpose of this blog, I'm not going to focus on MCS issues. I want to focus on bad advice for treating fatigue. 

ME/CFS comes with a lot of sensory issues, and the purpose of EOs are to stimulate your senses. They work because they affect your nervous system. That can be too much for people with ME/CFS to tolerate. It's possible that one or two could help someone with ME/CFS, like using lavender when they have insomnia. I find that ginger oil in my baths helps keep me warm for a few hours after the bath (I'm always freezing cold.) The problem is not EOs... the problem is people who recommend using them. They're not careful! If someone with ME/CFS wants to use EOs, they need to use very light amounts at a time to see if they can handle them. It's really easy to overwhelm the nervous system with EOs, which can create even more fatigue, even cause headaches and muscle aches. 

EOs (if they're pure, organic or wildcrafted, and without synthetic perfuming agents or stabilizers added) may help manage some symptoms if you can handle them. If not, they'll make you worse.

What they will not and cannot do is cure ME/CFS, Dysautonomia, Endometriosis, or any other illness. It's bad advice to recommend them for someone with ME/CFS because it's most likely just going to overwhelm their nervous system. It could be like someone blasting rock music while you're trying to sleep - they're too stimulating. Sensory overload. People with ME/CFS really need to maintain a calm nervous system. The least sensory issues possible helps. Avoid smells, loud noises, light pollution, bad textures, etc. 



Go to Therapy

For grief counseling? Yes, that's a good idea! The ability to talk about how much grief this illness causes is really helpful!

In my experience, however, this advice usually means "go to a psychiatrist for drugs to treat your anxiety" OR "go do CBT to fix how you think." It's not only a highly dismissive remark, it's dangerous. CBT is a therapy that assumes your root causes are all in your head - that you believe you have an illness instead of actually having one. It's very insulting. Read the article in that link and it will explain why CBT has harmed many patients. In short, CBT encourages patients to stop acting like they have an illness, which leads to the patients making themselves MUCH worse because they try to exert energy and live "normally." 



Just Get a Job Because Having a Reason To Leave the House Helps

When I first got sick, a lot of people told me this. I wasn't working for 1.5 years, and I was bedridden for much of that time. I didn't get a job until after working with a doctor for a while and recovering enough to be able to work very part-time. Without seeing that particular doctor, I wouldn't have been able to manage working at all. I saw loads of doctors who couldn't help me, then I flew out of state for my naturopathic doctor, and he was able to help me. He's internationally recognized at helping people like me though, where as all the local doctors I saw didn't have a clue what was wrong with me.

After I started working again, did the job help me recover? No. It didn't do anything for my physical health. Did it help give me a sense of purpose and lift my depression? Yes, but it's because of the nature of the job I had. I was very passionate about the work. Despite my passion for it, I was seriously not able to work more than 10 to 15 hours at best. I couldn't work multiple days in a row, and I spent my time at home recovering. 

We must remember that ME/CFS is an illness of energy. Jobs take A LOT of energy, and if we can't spend energy at our jobs, we're probably going to get fired. If we give more energy than we have to a job to avoid getting fired, we're probably going to have a lot of PEM that keeps us feeling at our worst. 

Highasakite - Science and Blood Tests

Florence and the Machine - Sky Full of Song

The lyrics are wrong in this video - it's "I can hide from the thunder in a sky full of song."

Being a Highly Sensitive Person with ME/CFS

I've known for a while that I'm a Highly Sensitive Person (HSP). I think because of it, I've built up a lot of defense mechanisms and walls in my life to protect myself from too much stimuli. I appear judgmental, stubborn, and maybe even a bit of a zealot. I am fully aware I come across this way, even though I am kind and loving towards people. But I also think it makes me much more in tune with my health. I read my own body well, and doctors have often commented on it with surprise. It also makes me able to communicate clearly, and that's partly why I need to write so much!

Being a HSP means that I'm easily overwhelmed by stimuli. I read energy from everything: people, the soil, trees, animals - everything. I feel the energy these things emit in my soul. It also means that lights, smells, noise/music, and physical feelings give me a ton of stimulation. The music playing needs to fit my mood or it will make me agitated, because music has a really profound impact on how I feel and think. If lights are too bright I'll start to feel dead inside, like I'm shutting down. The way fabric feels on my skin can make it really hard for me to think of anything else.

When I was younger I thought all this talk of energy and vibes was really hippie/ immature/ "spiritual" in a bad way, and so I actually fought against it. I thought it was going to lead me astray, off the straight and narrow path I was supposed to follow as a Christian. As a result, I acted in really strange ways at times. I was feeling sensitive and didn't have the tools to deal with it, so I had moody reactions or said "no" to people, acting really holier-than-thou about it. I remember having emotional meltdowns that I couldn't put into words, which was strange because I was usually a fairly even and stable person.

I remember one time when my best friend asked me to listen to a song that meant a lot to her, and I told her no. I refused to listen. She asked me why, and I couldn't explain why - I didn't even understand. So my lack of explanation made her try to force the song on me, but I blew up and yelled at her, refusing to listen. She was angry with me, and rightly so. I later listened to the song and liked it, and I tried to apologize to her, but she didn't want to hear it. Why was I like that? Well, because I'm too sensitive and I didn't have the tools or knowledge to handle it. 

So, over the years, I've learned what works for me. "Safe" things. I fight hard for things I've found that work well for me. Diets, supplements, types of lights, types of fabrics, music, smells, water temperature, etc. These things are "safe" for me. While I'm interested in learning about other things, or even trying them out when I'm feeling stable and grounded enough, I don't want anything that isn't safe for me in the moment. One day I might feel strong and stable and want to be adventurous and try something new. The next, absolutely not - let me put my headphones on and listen to the same album 5 times in a row while I block out the world. 

Once I finally read about HSP and realized I am one, I saw patterns and defense mechanisms in me that formed from being a HSP. Then I learned that my personality type is INFP 5w4, (Any article I could find on this was full of an overwhelming amount of ads, sorry.) (If you don't know about MBTI and Enneagram types, click the links. I took these tests officially in college, I didn't use these free online versions.) I'm a really odd duck, and very few people have my personality type - especially women! My 4 wing is delighted by this (4 loves to feel unique), but my dominate 5 (grounded observer/ researcher) finds it really frustrating. I'm not a well-researched personality type, so therefore I have to observe and record myself to learn about myself. The more I observed my own patterns and defenses, the more I realized why I am how I am and it all begun to make sense. 

This deep-dive into examining my personality helped me learn how to stop feeling so stimulated from everything. I learned how to create a bubble around me so I could be in public without getting drained by everything. When I was younger and had energy, I enjoyed the stimulation most of the time. I felt like life was an adventure full of things to experience and feel deeply. So I didn't use a bubble back then, I fully experienced everything. I think a lot of people liked me because of it, until I felt overwhelmed and became very blunt with my words, accidently insulting people. 

These days, since developing ME/CFS and having almost no energy, I can't simply enjoy all the stimuli of the world because it drains me rapidly. I had to learn to create that bubble to protect myself. The problem is that the bubble doesn't always work very well. It makes me feel super introverted, detached, and selfish. It protects me from feeling the world around me too much, but it causes life to lose its charm. 

And so I feel rather... bland. I feel like I'm living life in black and white, when I have the ability to see life for all its colors. This leads to me not expressing my feelings, not going out and enjoying things, and feeling rather depressed. Being a HSP requires A LOT of energy to process everything, and if I can't process it because I don't have the energy, I feel like I'm lost and world feels so far away. 

I've found that I can strike a balance and thrive when I'm in safe places. The more familiar I become with people, stores, brands, artists, etc, the less I need my bubble up with them. Familiarity leads to predictability. This bothers me about myself because I love to explore the world, learn about different people and cultures, try out different foods and experience life. But, familiarity means less stimulation. It's a filter I can rely on to prevent myself from getting overwhelmed. I'm very loyal to what I'm familiar with... even when it's not necessarily the best option for me.

It's really a crazy thing how I have an energy metabolism because of my personality type, then chronic illness on top of it. I've talked to many people about this, and they are often confused because they have never had to think about this. I view everything I do as transactional: how much energy does it cost? How much energy will it drain from me? How much energy is worth spending, and do I gain other benefits from spending it? Most people still have the ability to "push through" even while tired, so they don't need to think through the energy transaction. "Pushing through" causes something called "Post Exertional Malaise" or PEM in me (basically, I have to recover from spending energy and I'm not able to do anything while recovering... and I feel like I have a mild flu during it.)

So... this blog might make it sound like being an HSP is a burden to me because I have ME/CFS too.

I don't think I view it that way. I think it's a gift. I think I have the ability to experience life in a really intimate and beautiful way. I think I have the ability to find meaning in anything. I think it makes me a little slow and hesitant, and probably caused me to be a late bloomer in life. I'm too busy smelling the roses and learning what they have to teach us about the meaning of life, while everyone else is running forward and advancing in their ambitions. I think it's why I'm not ambitious. I think my gifts come from fully experiencing the world instead of trying to win at the game of life. The problem is... I really need to find a way to use these gifts to make money.... hahaha! That said, I was always really good in school or in jobs. I never had problems performing well. 

What are my traits as an HSP INFP 5w4? Let's break it down:

- I will research the heck out of anything that I have strong feelings about. (But I couldn't care less if I'm not emotionally involved.) The trouble is that ME/CFS can make it really difficult to read or comprehend, which leads me to feeling really frustrated and depressed. 

- I should be able to master things, because I have the ability to get really good at skills I put effort into. The problem is that I value perfectionism... and I tend to be sloppy. I get frustrated with the fine details and I rush through them just to get to the big picture. I see it in my drawing and art. My vision is rich with detail, but my execution shows a lot of laziness. It really bothers me about myself. ME/CFS amplifies this to a degree that it prevents me from even trying. I rarely draw anymore and I used to draw all the time. 

- I always assume I'm a student, never a master. This gives me imposter syndrome in everything I do. I'm constantly questioning my expertise on anything. I never feel like I know enough about anything, therefore I never feel like I can call myself of a master of anything. (And I have found that I know some things way better than other people who do them and make money doing them.) I have to get out of my own way! ME/CFS has made me feel like it's pointless to try anyway, because feeling like an imposter is worse when I feel like a tired imposter. 

- I have a mind for rules, sequences, logic, and protocol... but it's drowning in a pool of feelings that I always consult first. My dominate cognitive function is Introverted Feeling, so all my thoughts are filtered through how they make me feel. If I ignore feelings then I can become insensitively factual, like a walking encyclopedia (I've been called this before.) Programming languages made sense to me, but bored me because I never advanced enough to make artistic or emotional expressions with it. I'd probably be phenomenal at making story-driven video games if only I had the willpower to learn. (But math? I HATE math. Numbers are always a scramble in my head - they don't make sense! It's like I'm dyslexic only with numbers.) So imagine being too tired to think logically because of ME/CFS... my brain turns into scrambled eggs! I confuse myself often... 

- Morals and ethics are super important to me. I'm always analyzing the "goodness" of choices, and how we can improve to do more good, or do good in a better way. I'm sometimes too much of a morality zealot though, and it prevents me from becoming friends with people... I have the ability to make people feel very judged. I'm such a kind person, but I have a tendency to unintentionally stab people right in their moral compasses. Sorry... I honestly am not trying to be judgmental, and it doesn't mean I think people are "bad." I think we all have room to grow and sometimes I issue challenges to grow... it means I care! ME/CFS doesn't change this about me... but it does lead to me being really blunt, because I get too tired to finesse my words to sound kind instead of judgmental. 

- I read people, and quickly. When I talk to people I put myself into their perspective to understand why they say what they say, and I often end up acting too understanding of people I disagree with. (Unless I'm overwhelmed or too tired, then I tend to speak definitively and guarded without being considerate.) I can debate really well when I'm passionate, but I still see the other person's perspective. Interestingly, ME/CFS can cause me to listen and believe people without much critical thought. I'm too tired to anything but accept what they say, until I get the chance later to reflect on their words and process them. 

- I love fantasy and sci-fi stories with rich characters and moral dilemmas for me to organize! (But I have to consume the story quickly enough before my mood changes and I want something different to consume.) Especially with ME/CFS, because I need to enjoy something completely before the next crash, or I'll take weeks to recover and begin to forget details about the stories. I'm currently reading a book I love, but I've been unable to read it for 4 months... I feel like I need to start it over from the beginning because I can't remember details. 

- I love when people know themselves well enough to express themselves in how they dress or groom themselves, because I'm attracted to honesty and sincerity through self-expression. (But I'm also highly judgmental when it looks fake, and I tend to dress bland because I don't want to feel like I'm trying too hard too.) I love sincerity and hate fake. 

- I get bored and distracted easily. It's not due to attention issues (I don't have ADHD.) It's because I find so much in life to be shallow, uninspiring, and not worth my energy. When something catches my attention, I can focus and analyze it deeply. I can talk for hours about one subject. (But I am so bored when people just want to talk about superficial things, or when people don't have the ability to talk deeply about things.) ME/CFS gives me the excuse to tell people I'm too tired to listen, thankfully... ha. 

- I CRAVE deep soul-bonding connections. If you and I can talk soul-to-soul, I'll love you forever. The problem is that many people don't know themselves well enough to do this. People have to develop emotional intelligence, spiritual integrity, and a strong moral center to be able to speak from their souls. We live such a fast-paced world with too many distractions, it's actually really difficult for people to learn about themselves and their passions. So many people are constantly being entertained by short videos online in all their free moments, and they're losing their connections with themselves. More and more people are feeling agitated when they're not being stimulated. I connect with people who can sit with me without needing stimulation. 

- I need to move. Going for walks and doing chores help me think and listen more clearly. I do best in jobs where I'm on my feet moving around. When I sit too long to rest, my brain goes blank. I think a big part of this is POTS, because my blood pressure goes down a lot and I lose circulation. I can day dream beautifully in a hot bath, because the heat is keeping my blood flowing. But if I'm sitting at my computer too long I feel my brain turn into mush, so I need to be caffeinated or take licorice pills to keep my circulation flowing well enough to tolerate it. I've always performed better while moving, even before I got sick... which makes developing ME/CFS even harder to deal with! 

- I feel uncertainty and insincerity in crowds of people, and that can be super draining. Crowds of people usually come with a lot of noise, smells, awkward eye contact with strangers, judgments, expectations... unless it's a concert and the crowd is unified and into the music! Seeing U2 and Florence and the Machine in concert were like religious experiences for me, because the music spoke to me and the energy of the crowd was incredible! That many people together, feeling the music together all at the same time... it was like fixing something broken in my soul. It was a unified experience that felt so big... we were all sharing the same big feeling. It's so therapeutic! I've felt the same energy at sports games too. When the crowd is unified and excited, it's the best energy in the world. I thrive on feeling connected and in harmony. 

(My own video from Florence and the Machine's Dance Fever Tour, 2022, St. Paul, MN.) 

"This is a gift! It comes with a price! Who is the lamb and who is the knife? Midas is king and he holds me so tight, and turns me to gold in the sunlight!"

U2 - Joshua Tree Tour 2018, Minneapolis, MN (My own video - I didn't take many because I was lost in the magic of the concert, so this was the best quality video I did get. The others are pretty blurry.)

"You've got to cry without weeping, talk without speaking, scream without raising your voice!"
Have I ever mentioned how much I love Bono? He's one of my favorite people on the planet right now. 

- I thrive in rules and structure, as long as I'm free to be independent. I don't conform to systems if they don't work, and if the rules don't work for me then I leave. I don't participate. I need structure, but it needs to make sense and be healthy. For instance, driving! I follow the rules of the road because it's safe and predictable, and if everyone follows the rules then traffic will flow well without problems. I get really frustrated with others who think they don't need to follow the rules and are unpredictable drivers, because I feel like they're the reason why there are so many traffic problems. I want everyone to be safe! So I don't drive in places where I can't trust other drivers. I just don't participate in that chaos. 

- I have the ability to take a step out of myself and look at all my thoughts and feelings from the outside. So, I feel deeply, but I'm able to logically process it as though I'm detached from the feelings. I think this is a uniquely Enneagram type 5 trait, and I think it saves me from becoming crushed by being a HSP. I think it also helps me regulate my INFP nature. I've met a lot of INFP who don't know how to manage all their feelings, and it holds them back from growing. My feelings do get in my way very often, but I can recognize why when I analyze myself. Then I can learn and grow. 



The amount of energy it takes me to be me is... a lot. Being so fatigued ruins my brain, and makes me feel disconnected with the world around me. It makes me feel like I'm not a complete person. Fatigue numbs my thoughts, my feelings, my senses, and my body (I get so cold!) I process the world around me based on feelings, and I clarify my feelings with my brain... but when feeling things drains me and my brain doesn't have the energy, then I just exist. I don't react well to anything. It's hard to enjoy anything. 

I never liked too much alcohol and I'm not the biggest fan of marijuana, because I hate losing control. It's nice to give my mind a break and feel my tense body relax, but I want to be able to end that break and regain control the moment I need to. Not feeling in control is a huge fear of mine.

I would LOVE to read other people with ME/CFS talk about how it affects their personalities too. I know it makes people feel muted, but that means something different in each personality type. The energy we do have has to express in some way, and I tend to express my energy through analyzing and researching things (and writing blogs to help me express.) Other people might need to express their limited energy in other ways. What parts of our personalities shine through this terrible personality-suppressing illness? 



....


Look at what all this typing does to me. Look at my hands. They are so icy cold that I'm actually having a hard time getting my joints to bend to press the right keys. I am hitting baackpace like crazy to correct allmy ammoying mistakes and so I"m lieving this esntance l,ike this so you can see how amany nistakes i keep making whle trying to teype from how freaking old my fingers arefeeling. My brain needs me to write so I can get all these thoughts out, but I'm SO COLD from all this typing! 

Tori Amos - Metal Water Wood


Eivor - Piece by Piece

Rhodes - Sunlight

Thoughts I have as a person with unending fatigue (ME/CFS):

- I day dream about cleaning, and I do the work of it in my head. I imagine myself vacuuming the whole floor. I imagine scrubbing the tub. I fantasize about folding laundry and organizing clothes. But actually physically doing the work? I wish I would just do it. It's not a lack of desire to do it. I just can't get my body to move. 



- Why does caffeine usually only make my heart beat harder, and not always fuel me to move? Somedays it works, somedays it doesn't do anything. So confusing. 

- Why should I spend money on treatments when I have no reason to feel better? What good am I if I feel a little better and stronger? Is it worth the investment? Am I just going to stay house-bound anyway? Then why bother spending the money to feel better unless I'm working and contributing? 

(People who love me have told me it's worth helping me have a better quality of life because it's my only life to live and I deserve to feel my best, even if I can't feel well enough to do much with my life. I'm having a hard time with this, because if I feel better then I'll want to do more with my life and it will make me feel more restless, even though I still won't have the energy to do much.)

- I used to have a firm body. Now with age and being sick for a decade, I look so soft and weak. My shape doesn't look like me anymore. My youth is gone. And this makes me feel like I truly am missing out on life. It's not fair. And I'm angry! 

- Why are some days better than others, and why isn't it more predicable? Why do I go a whole month feeling too weak and tired, then suddenly have a week of feeling like I could be working part time? It's impossible to plan my days. I have to just do things as I feel up to doing them. That's no way to accomplish anything in life. 

- Feeling like I had a lot to say and then going totally blank after I say only a few things.... I want to go lay down, but I'm washing my bed sheets. Ugh.