ME/CFS. Multiple Chemical Sensitivity. Allergies. Fibromyalgia. Arthritis. POTS. Anxiety. Calcified Tendons. Depression. Endometriosis. And more.
I'm moving forward with my life!
I came here to write a poem about people who think it's dangerous to be kind.
But I have a problem as I type. If I straighten my fingers to hit a key, especially my pinkies, I'm not able to bend them back on their own. I have to use my other hand to bend my fingers again. I have to keep my fingers very curled over the keyboard to type. I feel cold and stiff. I should probably go take a hot shower.
I'm back. I'll try this again. Stream of consciousness. No editing.
Near Devil's Tower, WY
Kind people cultivate kind people
Cruel people craft the blueprints to make more cruel people
Jealous people don't trust kind people
and innocent people are claimed by cruel people.
The jealous will inherit the earth They push away those who could tear down their defenses
They fight against everyone else on their paths to success
Not a single soul can slow them down
They conquer the mountains, claim the lands, rule the seas
No one can be near them to advise them
They are married to their defenses
Expecting love from all without giving any in return
But they will die in a coffin of their own making
No one could approach them
Not even a child could break through to them
And the earth will be free from their reign
Ready for the next jealous person to conquer again.
Not a thing will change, and none of the jealous will be remembered.
The innocent will rise to every occasion
They do what is needed to make the world spin around
Consuming kindness and cruelty both
Holding the hands of them all to lift them to their feet
Always believing in their work to keep the world in motion
Trusting in the balance of creation
Willing to die for keeping and spreading peace to all who will listen.
But it's the cruel people who believe they are the kind people
Weeding out those who don't serve the mission
Training the hand of those who don't know better
Always thinking their ideals of dominance are the best for all
So lost in their perspective they can't use their vision
Afraid because they know no other way
And yet despite this war
it's the kind people who find justice
They take the blows and carry the burdens
Enduring the lies
suffering the cruelty
Kind people always find hope
They build their utopia for all who want it
where all will be forgiven if they too learn to be kind
The jealous can't understand the trust required to be kind
The innocent prefer to be ruled rather than grow into kind people
The cruel fear what they cannot control and organize
and in the end
only the kind people fulfil the mission of what it means to be human.
I honestly can't believe that in 10 years of owning this thing that I haven't written a post about how helpful it is for me... I think it just proves that I do A LOT and I can't really keep track of it all to write about it!
My super duper cheapo portable Far Infrared Sauna! (As opposed to the $1,000+ ones...)
I bought it for about $179 on Amazon about 10 years ago. I'm still using it. I just used it today. I told you, I'm all about buying things that last! Although I had no idea if this would when I bought it, ha!
And look, despite CRAZY inflation, it's only gone up to $219 in 10 years! Ha! They're still making it too, so I think I made a good choice:
First, let me acknowledge the elephant in the room, which was something I didn't know about at the time of purchase:
EMFs. I have no idea what kind of EMFs this sauna emits, and I recognize that they are a problem with infrared saunas in general. If you're sensitive and must avoid them, you will probably need to invest in a much more expensive brand that verifies low EMFs from their products. I know there are sauna companies out there, but I have zero experience with them and I'm the wrong person to ask.
I'm not real clear on if EMFs affect me... maybe they're the reason I zone out so much indoors, but feel way more awake and alert when I'm up in the mountains in national parks. What I can say is that I don't feel worse from using my sauna regularly.
I got started with using saunas because of my Naturopathic Doctor, who is the reason I recovered some of my health. He has a really high quality far infrared sauna in his clinic, and he had me using it regularly as part of my treatments. It was really difficult to endure. I was so sick that the energy it took to survive that thing still haunts me. I remember my heart pumping into my throat, the sweat flowing like waterfalls, my vision going in and out... it was tough. But the more I used it, the more I was able to endure it, and the better I felt after each session. I was comfortable with the process because I trusted my doctor, and his nurses were monitoring me.
I was living in North Dakota, and my doctor was in New Hampshire. I wanted an option to use at home. So, on a whim, and with encouragement from my dad, I bought this one. It's not as effective as my doctor's, but it has the same effect if I stay in it long enough. I sweat waterfalls, my heart rate goes sky high, and I'm left feeling completely exhausted after. Yeah, it does the job I want it to do.
Yes, it does seem crazy for someone with ME/CFS and POTS to be using a sauna. I am only sharing my experience, and I am NOT recommending all my readers do this. Remember, these blog posts are NOT medical advice. In fact, I would probably work with your doctor before using a sauna, because there are definitely some potential risks. I do not use my sauna when I don't feel strong enough to tolerate it - in fact I usually take all my pills and drink some caffeine first to stabilize myself the best I can. I don't use it on days when I have something to do. I only do it on days when I know I can rest and recover. It can trigger my PEM (post exertional malaise) when I don't time out when and how I use the sauna, but the PEM it causes is so much more peaceful than a typical crash and I recover faster from it.
Here's the benefits for me, personally:
- Clears up hives and rashes on my skin - Helps my blood flow to every part of my body (it's like a miracle!) - It takes away my shakes, jitters, and itches and lets me rest calmly afterwords - I sleep more deeply and peacefully when I use it regularly - My digestion and metabolism is improved when I use it regularly - It reduces my muscle pain and cramping, probably because it gets blood to my muscles - I feel more stable and stronger when I use it regularly, with fewer POTS episodes - It helps manage my weight a little - My vision seems to be sharper after I use it - I feel more resilient to changes or stress when I use it regularly - My reactions to allergens and chemicals are reduced when I use it regularly - I just feel better... yes, it leaves me tired, but I feel more calm and at peace.
And here's some articles and studies on Far Infrared Saunas for you skeptics:
I like to lay a thick towel on the bottom to collect my sweat. I fold another thick towel into a soft seat to sit on. I've found that I do not like to sit on the chair and poke my head out the top. I greatly prefer to sit on the bottom cross legged, completely enclosed. It's easier for me to endure this way, and I feel the whole effect on my whole body instead of keeping my head cool. I keep another towel or two in there to use to wipe my face regularly.
They say it's safe to use a phone inside it, so I do... but it does get hot. I like to keep it on the bottom front (it's a lot cooler down there because the heating plates are only in the upper back) and watch something on my phone while I use it. I need something to focus on while I'm dying from the high heart rate. I also bring a water bottle full of electrolyte water in with me. I use a stainless steel bottle, not plastic.I also like Ultima Electrolytes because they're sugar-free, but effective.
I always try to manage for 45 minutes (typical for a dry sauna, not for a wet sauna,) but somedays I really can't. I just stay in as long as I can tolerate it. Once I'm done, I wipe as much sweat as I can off of me with a towel while I'm recovering. You don't want your skin to let the sweat soak back in, so you want to dry yourself as quickly as possible. Once I'm able to walk into the shower, I take a hot shower. Not cold. I don't want my body to cool down. I want to keep that blood moving well. But, me being the way I am, I typically sit during the shower so I don't fall over and hit my head and kill myself.
In a good session I SWEAT. I sweat so much it's hard to keep it from dripping into my eyes! It's amazing! I remember when I first started to use the sauna it would cause me to break out with acne... but that doesn't happen anymore since using it regularly. I think I'm keeping my pores clear this way.
Side note... I've had times when I can't sweat in the sauna, and other times when I sweat waterfalls. Not being able to sweat can be a sign of dehydration. It can also be a symptom of dysautonomia, when the nerves don't signal instructions to do things like sweat (or breath, or digest, or pump blood... isn't dysautonomia fun?) In my experience (again, NOT medical advice!) when I can't sweat I still get the benefits of pushing blood in my body. It still helps. But I also notice that I'm WAY more tired after. I had an episode once when I couldn't stand up to get from the sauna to the shower, so I crawled into it and laid down in the bottom of the tub until I was able to turn the water on and just take a bath. That was kind of scary... so since then, if I'm unable to sweat in the sauna after 15 minutes, I don't continue. I stop and get out before I hurt myself.
THE ONLY CON about this particular sauna:
The zippers are made of metal, and they get REALLY hot. I can burn my skin on them. The zipper... what do you even call it, the part of the zipper you grab to use it? The tag? The handle? That part hangs down on all 3 and I have to be careful not to let it touch my forehead. The main big zipper handle can be tucked away in the Velcro that seals the top, so that won't bother me. It's the two zippers for the arms that can burn me if I'm not careful.
So, I'm not trying to sell you on this exact sauna... there are probably better choices. But, I can tell you that it's been reliable for me for 10 years!
UPDATE
It's the next day, 24 hours since I finished using my sauna. I'm struggling to move much today. I'm so tired my eyes are zoning out on me frequently. I can move as long as I keep moving, but if I sit down then I can't get back up. I go frozen. It's hard to move. I'll recover... but it's worth it to me because it's helping combat my allergies (it's spring it the south, there's layers of yellow pollen on everything.)
I agree with the Native Americans who fought against the pipeline in North and South Dakota: Water Is Life.
It's true. We can't live without clean water.
We said the mantra over and over, demanding that the source of our water supply wasn't ruined by fracking and leaking oil pipelines. But why don't we really live this mantra by choosing to drink clean water and choosing practices that keep our water clean? Why are we still drinking from plastic bottles, drinking the tap water, and choosing to buy foods grown with pesticides that run off into our water supply and ruin in?
In the words of Nestle's CEO:
“Water is, of course, the most important raw material we have today in the world. It’s a question of whether we should privatize the normal water supply for the population. And there are two different opinions on the matter. The one opinion, which I think is extreme, is represented by the NGOs, who bang on about declaring water a public right. That means that as a human being you should have a right to water. That’s an extreme solution. The other view says that water is a foodstuff like any other, and like any other foodstuff it should have a market value. Personally, I believe it’s better to give a foodstuff a value so that we’re all aware it has its price, and then that one should take specific measures for the part of the population that has no access to this water, and there are many different possibilities there.”
So... if water is to be treated as a "foodstuff" with market value, that means you have a choice. What water are you buying? Do you know what you're buying when you pay your water bill for tap water? Do you know what you're buying when you buy plastic water bottles because you don't trust the tap water? Are those alkaline waters you're buying to be healthier actually better for you? It's all a bunch of marketing, because water is a product to be sold.
Oh boy. This one is a heavy subject, one that I could write a whole 200 page thesis about. It's easy to feel like it's too big of a problem to tackle, but I want to promise you that there are some solutions.
Let's talk about solutions, because the problems with water are too much for me to get into.
But first:
Well... yes. Dave is right.
1. Your body won't turn alkaline by drinking alkaline water. You will struggle to digest well if you drink alkaline water with your meals, because it reduces stomach acid. You need enough stomach acid to bread down food and absorb the nutrition from it. Lowering your stomach acid can lead to heartburn. That said, you definitely do need minerals in your water to absorb it and retain it, but more on how to do that later.
2. You really don't want to drink chlorine. Chlorine kills bacteria and sanitizes. Do you want to kill the bacteria in your body? Bacteria basically control the health of our bodies, so without enough good bacteria our bodies won't function well. If you're taking probiotics to help add more good bacteria into your gut, are you swallowing it with chlorine, a substance that kills bacteria?
3. Fluoride is very controversial. Does it have benefits? Yes, it does reduce cavities. Is it a neurotoxin that kills brain cells? Yes. It's essential you don't consume too much, because the toxicity of fluoride is dose-dependent. So how exactly do you control the dose when you're drinking tap water? (Also, do we need to add fluoride to toothpaste when there's already enough to prevent cavities in tap water? That's a post for another day.)
4. Okay, so avoid tap water to avoid chlorine and fluoride... got it. But then he says not to drink out of plastic? Plastic does break down into microplastics that end up in the water, and they do mess with hormones. Then how to do I get water? Those glass bottles are expensive, and hey, don't they contain water from sources high in arsenic? Some do, yes. That's what I'll offer you some solutions in this post! There are options.
5. Don't focus on division and hate while you drink it? On the surface this might seem silly, but in reality it's a great practice to focus on gratitude instead of what we're angry about while we're eating. Our thoughts do control the quality of energy that flows through our body, and our energy will affect our digestion. It's not woo-woo voo-doo - many cultures have known this for thousands of years. Did you know that Kung Fu masters can change the properties of water by moving their qi? We've simply lost sight of it in our dumbed-down modern consumerist fast-paced culture. Our minds really do affect our physical health. (I'm not promoting toxic positivity here - there's a time and place to process all emotions, but processing anger should not be done while eating.)
I'll show you what I use for my drinking water. (Bathing water is for a different post.)
The best solution I have found is to filter my water with Reverse Osmosis. It is a very effective way to remove most of what is in your tap water. It's easier than distilling, and allows you to have safe water from a tap in your home. Reverse Osmosis usually involves 5 stages of filtration, sometimes with added UV light to kill anything after the chlorine has been filtered out. Your responsibly is primary just to change filters on time, so it's not that big of a commitment. Personally, I find it way less to manage than buying pounds upon pounds of water from stores.
Let me show you what it does. In these photos I'm using a TDS Meter that measures Parts Per Million (PPM) of water. The PPM are everything in the water that isn't water. This can include good healthy minerals along with heavy metals, chlorine, drugs people flush down the toilet along with anything else the waste water treatment plants can't filter out, fluoride, and any other additives to treat the water. The higher the PPM, the harder and less acceptable the water quality is. In Bismarck, ND, the tap water was normally near 300 PPM (I'll have to dig back through a million photos to find that one to show you.) Here in Gaffney, SC, I have measured it between 44 PPM (shocking low) up to 150 PPM after they did some work on the water pipes under my street. Because the pipes burst open and were leaking. That was the day I started my period, and had zero running water in my house all day long. Ayyy... that's a story for another day. UPDATE: I'm returning to finish this post several months later, and as you'll see in upcoming photos, the tap water here in Gaffney is now over 300 PPM.
(I'm going to add photos of Bismarck's water here when I find them, but they're at least a year old now and I have to actually dig for them! Keep reading to see how my current system measures though.)
2. Install an RO water filtration system onto your kitchen sink. This is my favorite solution, but it does help to have some plumbing knowledge to manage it. You also might need permission from a landlord if you don't own your kitchen sink. I bought and installed the APEC filter in my last home.
I highly highly highly recommend it! It brought my PPM down to around 10, and once it started to go up to 20 I knew it was time to change a filter or two. I used the hole for the sprayer in my kitchen sink, and installed a faucet with a built-in sprayer instead. This was very convenient because I could flush the tank directly into the sink when needed, and I could fill my glass with water from the RO faucet at the kitchen sink.
After years I ran into an issue with the system, but customer service was the best I could have ever asked for. The bladder in the tank was wearing out. At first we used an air compressor to refill the pressure, but that solution didn't last long. The tank itself started to leak, and I found it falling into the wood of the cabinet it was in. The wood was soaking wet. We had help cutting out the wood and replacing it. We had to buy a new tank from APEC, and then we needed help installing it because we couldn't get the water pressure to where it needed to be. APEC spent 40 minutes on the phone with us to walk us through how to fix it ourselves. The guy knew the system inside and out, and he patiently talked us through every step as we did it. He didn't end the call until the problem was resolved. It was amazing! Best customer service ever!
3. You might need to do something less complicated if you're in a rental, or not staying in any place for long. That's my current situation, so I bought this:
The SimPure countertop RO water system. (It was $100 less when I bought it last June... INFLATION.) It's ok. Not great, but ok. So much better than nothing. I'll show you:
It only uses 2 filters, rather than the 5 of the under sink RO filter I used to have. It simply can't be as thorough. Where I used to get my PPM down to around 10-15 with that under sink filter, this gets it down to around 50-65.
Tap water in Gaffney, SC: 308 PPM
Filtered water: 61 PPM, filters are 3 months old, still have 3 months of life left in them.
I would recommend this if you need to buy any portable RO water filtration system... but if you have the ability to install one under your sink, just do it. They cost the same, and the sink system works WAY better. But I'm happy enough with this countertop system for now, while renting.
My complaint is that it's on rubber feet, so it's hard to move it around on the counter, but I have to move it around to be able to take the water tank out of the back of it to fill it up. I have to fill it about 2x per day for my husband and I.
It assumes you will only fill glasses with water. It has 3 buttons for the amount of filtered water it will pour out. The trouble is that the amounts for each are a little too little or too much for my glasses. I also need to keep a Pyrex measuring cup next to it because I use it constantly for getting enough filtered water to pour into my tea pot. The teapot itself won't fit under the spout. So... it's a little less than perfect, but it's so much better than nothing.
My husband only drinks cold water (I can't drink cold water, it hurts me!) So he fills up a pitcher from the RO machine and keeps the filtered water in the fridge.
So the problem with RO water or distilled water is that the good necessary minerals are filtered out too. It makes the water "dead" so-to-speak. You won't find any water in nature that isn't full of minerals from the rocks and soil it flows through. We're meant to drink the minerals in the water. In fact, our kidneys rely on the minerals in the water to be able to absorb the water. That's okay - just add them back in. You can buy trace mineral to add to your water before you drink it.
I personally can't drink water without thickening it, otherwise it flows right through me and my kidneys and bladder can't handle it. I get dehydrated by drinking water that isn't thick enough. So I use powdered electrolytes to thicken my water. I use the ones from my naturopathic doctor, but I also like Ulitma a lot because the flavors are great.
This is also a great product for all your POTsies reading this - if you have POTS you NEED electrolytes to build your blood. It's critical! Ultima has less sodium than other brands, but it has more electrolytes and no sugar! So just add some Redmond Real Salt to your water if you need extra sodium. That's what I do.
(It took me close to 6 months to finish writing this post... I started many posts and couldn't finish them, but I knocked this one down... yay me! Life with ME/CFS, Endometriosis, and POTS... sheesh, it's hard to get much done.)
Unsustainable Government Business Model That Causes Society to Collapse
Create a Capitalist society with very few regulations.
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Lots of people go into business selling unregulated things, like snake oil, to make a profit.
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Create food and body care products that are pleasing and addicting, but a little bit toxic.
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Get the population to buy these products in mass, making their use normal and commonplace.
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Create lots of people with mild chronic illnesses because the food and products they use aren't quite healthy enough to sustain their health.
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More people need medical care. Insurance is invented to help people pay for medical care.
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Doctors are well intentioned, but their education is very limited to one area so they don't see the whole picture of health.
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Doctors are primarily taught how to sell medications, not how to heal people.
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Lots of people buy medications that only manage symptoms of illnesses as long as patients continue to take them regularly.
↓ People become addicted to drugs without improving their health.
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More people get a little bit sick and more babies are born with health issues.
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The entire Capitalism system relies on people buying things, so more people go into businesses selling food and products without enough safety regulations. Businesses invent things people don't need, then advertise why everyone needs them and shame people who don't use them (like fabric softener or air fresheners.)
↓ More people start to complain of new health issues from using these products, like allergies and eczema.
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More drugs are produced to sell to people for a wider range of health complaints.
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People with illnesses realize they're not getting healthier, and their insurance only helps them get discounts on doctors that just give them drugs that don't fix the root causes of their health problems. They grow frustrated with how much money they're spending on health care, with not enough money left from their paychecks to buy food and products that don't make them sick enough to need doctors.
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"Health and wellness" businesses pop up that teach people how to prevent getting sick, because that's where people are willing to spend money. People don't want to see doctors anymore because they don't help.
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People listen to "alternative advice" to try and reclaim their health, such as: exercise as much as you can (until you injure yourself,) avoid salt for your heart (your heart requires salt,) stop eating meat because it's bad for your blood (your blood is built off all nutrients in meat,) and start buying and eating synthetic and ultra processed foods like protein bars and shakes because it's better than nature could provide for you (and creates a lot of profit for big businesses.)
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Companies pervert vitamins, minerals, and nutrients. They make them as cheap as possible to produce without caring if they're effective, then thrive on selling you these synthetic vitamins that are promoted as "natural." (Because the word "natural" has no regulation.)
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More people than ever are feeling sick, fatigued, and weak. They discover that their synthetic vitamins are not solving deficiencies in their blood work, and they start developing new problems from taking them, such as nerve pain or kidney stones.
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Chronic illnesses become more severe and more common, and more people can't work due to them. People have less money, less trust in doctors, and less clarity on how to improve.
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Good honest people who aren't interested in money, but are interested in fixing the problem start going into business: Naturopathic doctors, functional medicine doctors, holistic nutrition coaches, food and environmental researchers, farmers that learn better ways, etc. They are successful in helping people heal and get better, as long as people can afford them.
↓ Doctors who actually know what they're doing stop accepting insurance that we're forced to pay for, because insurance dictates how they treat patients and these doctors know better. The wealthy have access to real medical help. ↓
Food businesses pop up based on the research, such as organic and regenerative agriculture produce with sustainable healthy practices. It's more expensive than the unhealthy food that dominates the market, so not everyone can afford it. People who can afford it start eating a lot better and feeling a lot better. They stop buying food from anyone else and avoid buying any products they don't trust.
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Big megacorporations start to buy out these small successful doctors and business. Then private equity groups manage all the finances of the megacorporations. Now many of the good food companies are generating money for the people who made food toxic in the first place.
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More and more people start to wake up and realize that the whole system is rigged to keep them sick and only generate profits for the megacorporations and private equity groups.
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More and more people lose sight of the meaning of life while in this Capitalistic society. Some start to fight back and start their own farms to live off of. Others give up and commit suicide. Others go on feeling really depressed and unhappy in life, losing themselves in mindless pleasures until they die.
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Fewer and fewer people are able to find jobs that treat them like humans, especially people with chronic illnesses who can't keep up with demands, and fewer and fewer people are able to earn enough money to keep up with the inflation that comes as a result.
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Too many people stop having babies because they're not affordable or the parents aren't healthy enough.
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People with good intentions try to create new ways to help people have babies, such as IVF, but it goes against many religions and it's too expensive for many people. It also doesn't always work.
↓ So then the population declines drastically. Most of the remaining population fights some type of chronic illnesses, to varying degrees of severity. People don't have the energy to fight back, and people are way too confused to know what to do about it.
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Lots of businesses go out of business. People don't care. They didn't have the money to shop anyway.
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Education goes out of business. People don't care, because they didn't like paying for what they were teaching anyway.
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There are fewer and fewer doctors and lawyers, because fewer people are educated. There are fewer businesses, so people are forced to buy only what's available from people who are already super rich. Because only the super rich have what they need to run businesses.
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Eventually society reaches a breaking point that causes societal collapse. People must start over and rebuild with new direction, other people invade and take our lands, or people give up and die.
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Life goes on, forcing people to start over fresh.
What could have prevented this fate? Respect for your fellow human. Businesses should have always been conducted with respect for life and health, but instead they viewed people as cash cows to be milked dry. Health is a businesses model, not a human right.
I left out a lot of factors, such as the power of distraction, slavery, unfair trade due to globalization, housing businesses models, and more.
I believe it's too late to fix the problem. There's no way to turn this sinking ship around without sinking us even faster. We're going to sink. There's already a ton of water rushing in.
I'm not scared, though. This isn't a source of worry for me. I am of the opinion that everything needs to fall apart. We need to fail. And then we need to learn from our mistakes and start over. Look at all the previous empires that have fallen. Their collapses were not the end of the world. People always start over.
The problem now is a little more complicated. The world is globalized and we have been depleting the resources. If one country goes down, it affects the rest of the world. We've managed to turn way too much soil into desert that food cannot grow on, so if we start over we're going to have to heal the land first. It won't be easy. But humanity will survive and we'll start over. Unless the next great mass extinction wipes out humanity - there have been a few mass extinctions that killed around 80% of life on earth before we came to be. It could happen. It's not out of the question. Nuclear war is possible too. Or bacteria that is antibiotic resistant grows in our guts and kills us all from the inside out. Or deadly mold (or mushrooms) grows on everything and chokes us out. It's all possible. Life is fickle.
Until then, how in the world are people like me supposed to survive? I'm not healthy enough to make enough money to keep up with inflation and demands. I could try to lean to invest and live off dividends - who wants to help me learn? Of course, that means I'd be investing in evil practices that I don't support, but I hey, I need money. But in the end, my health is pretty bad and it's become difficult to enjoy living. I must find direction to help me live as happily as possible.
What do I want out of life? I should just focus on that, right? Love and children. All I want is a family to live for. I'm really happy doing work that makes people's lives better too, such as working in a local, regenerative food system that makes food that is actually nutritious and heals the land. I need the energy for it, obviously, but I'll do whatever part I can. But it all feels really lonely without a family to love. And I have not been blessed with children, nor do I have the energy... in fact doctors have told me not to get pregnant because my body is too weak to handle it.
More and more people are thinking like me. I've talked to so many people with chronic illnesses who are so jaded and have no faith in the medical system. More and more people are telling me they don't see the point in trying.
People are losing faith in the meaning of life because evil profits the most.
People are tired of living for the benefit of evil.
What!? But he's that conspiracy theorist who is anti-vaxx right!? Hmmm... is he more of a conspiracy theorist than Trump, or is he actually fact-based? Yes, any man who claims that people have been lied to and wants to tell you the truth will always sound like a conspiracy theorist. The difference is that Kennedy is a highly successful lawyer who has fought against megacorportations like Monsanto and won on the ground that they cause harm to people. He actually knows company secrets, works with actual scientists, and is fact-based. He was a democrat, but is running as an Independant now. I actually have some hope for our future if he wins the election, and he's polling very very well. If Trump or Biden win I will carry on without much hope... until it's impossible to carry on because everything collapses.
We have to be brave enough to want the truth, not to be submissive slaves to a system that "takes care of us" by sending our tax dollars to the other countries without addressing problems at home. You think Trump will take care of us common folk? Ha! He is jealous that he hasn't been part of a war yet. War boosts the economy too, you know. But it won't solve any problems.
I'm not telling you to "wake up" because that implies you've been sleeping. No one has been sleeping, but many people have been comfortable in their own biases. Including me. I'm telling you to be open to new ways of thinking, look beyond your biases, and accept reality for what it is instead of what you want it to be.
U2 - Cailfornia (There Is No End To Love)
I've seen for myself
There's no end to grief
That's how I know
Whoa, that's how I know
And why I need to know that there is no
Yeah, there is no end to love
U2 - Sleep Like a Baby Tonight
Hope is where the door is
When the church is where the war is
Where no one can feel no one else’s pain
Muse - Uprising
Paranoia is in bloom
The PR transmissions will resume
They'll try to push drugs that keep us all dumbed down
And hope that we will never see the truth around
Moby - Dark Days ft. Lady Blackbird
If you stay you're gonna go
Underneath down below
So I'll fly
Fly away
From the apocalypse
David Byrne & St Vincent - Who
Who is an honest man?
Who is an honest man?
And just for a good laugh (because it's supposed to be ridiculously over the top... don't take the bad language seriously, it's a joke in the spirit of how serious the world is now):
Cheap makes me sick, but quality keeps me healthy and lasts.
I'm strong, but I'm scared.
Maybe I shouldn't have to endure pointless trials to prove I'm worthy of being human.
I'm capable, but I'm not independent.
I know what to do, but the reason is lost without you.
As a very dear friend of mine just said to me: "You need a break from the truth."
They say that intelligent people tend to be the most depressed and have the least hope. They also say that the arrogant with average intelligence take all the power and become the most wealthy. I think there's truth to it in many cases. When you're intelligent enough to see the big picture of life, you are able to see how pointless it is to dedicate your life to money. I also have seen that intelligent people are the happiest people, because they avoided living a life crushed by the weight of societal expectations and instead focused their lives on what they love most. I've also seen that those of average intelligence don't always win at life because they don't care enough about winning.
Over the past few years I've been developing a pool of anger inside myself. I have a lot to be angry about:
I'm angry that I'm sick with chronic illnesses that rule my entire life. I'm angry that I didn't use my youth to train in skills that would help me feel useful and happy. I'm angry that I live in a country in which the dream of freedom and independence is only propaganda. I'm angry that being "good enough" isn't enough anymore - if you're not the best there's no place for you. I'm angry that family is no longer the priority, but instead a luxury of a successful career. I'm angry that I must have high standards, because average standards are unhealthy. I'm angry that marriage is no longer about love, but instead it's a business partnership for survival.
I'm angry that good people are afraid to commit to anything: a job, a partner, a marriage, a place to live.
I'm angry that I'm 36 and I have nothing to show for it. I'm angry that every bone in my body wants to be a mother, but my body can't handle it. I'm angry that my feelings don't matter, because I don't matter in a world that doesn't have a use for me.
I'm angry that the people who recognize my value and love me are so far away from me.
I'm angry that I can't simply just live for what life is about: God, love, and happiness. I'm angry that "Christianity" has been warped into a political militia, but not an army for God.
I'm angry that I'm afraid to say I have faith in God, for fear of people assuming I'm a terrorist. I'm angry that I live in a country that's falling apart rapidly, but voters are focused on a popularity contest.
I'm angry that I live amongst people who choose to steal from each other, then beg for handouts.
I'm angry that people distrust love, but do trust autocrats.
I'm angry that food is grown in damaging ways, and costs so much that it damages families.
I'm angry that I'm a late bloomer in life, once I don't have the energy to act.
I'm angry that I will never retire. I'm angry that I'll probably never own my own home.
I'm angry that healthy water, healthy air, and healthy food is a luxury.
I'm angry that seeking medical care would bankrupt me, even with insurance.
I'm angry that insurance costs more than preventative care would without insurance.
I'm angry that we built a society that is completely reliant on unsustainable resources.
I'm angry that I keep gaining weight despite how much money I spend on the highest quality food.
I'm angry that my teeth are so narrow that I'm self-conscious about my smile.
I'm angry that I'm so contrary to popular opinion, because I really do want to get along.
I'm angry that I'm so weak that I only know how to take action behind a screen or with my dollars.
I'm angry that I don't know what to do or where to go anymore because every path is futile.
I'm angry that everything I've accomplished in life, everything I've ever worked for... it's all falling apart. I'm so angry, so disappointed, and feel too much despair. And I'm even more angry because I know a huge portion of society feel exactly the same as me.
I'm angry because it's all falling apart, and it's not because we failed. We simply lost a game we didn't know we were playing, because we were focused on something more important than a game: love, family, and peace.
I've been accused of being too negative, too scared, not resilient enough, and a real downer. You want to know what crushes my spirit? Being invalidated by being called labels without being listened to. Am I supposed to magically feel happy when I'm living in fear? Am I just a wimp? Let's do an experiment: I'm going to lock you up in a cage with a lion and tell you to stop living in fear and just feel happy. What's the problem? Don't you have everything you need in life to thrive in that cage? You have shelter, meat, leather, bones to make tools out of to build with... oh wait, what? You can only do that if you kill the lion and somehow survive? Well that sounds really negative! What a downer. Stop whining and figure it out. And be happy! What's wrong with you, living in fear when you could live in happiness? Sheesh!
I know I could be happy despite all things to fear in life these days: inability to earn enough money to have shelter, food, clean water, clean air, family, safe transportation, etc..
...but it's going to take being in a community of people that bring me peace. All I'm asking for it some peace and security. I need to be in a community of people who acknowledge the challenges of life these days, accept my disabilities, and actively work to support each other (instead of competing and pushing each other down.)
I have come to believe that a key to happiness in this life is to acknowledge each other's pain. When we acknowledge that someone is in pain, we can rally to help them recover and keep our society happy and healthy. When we ignore each other's pain because it's just such a negative downer, the pain breeds and spreads through the community.
I'm not an unhappy negative person. I'm in pain, and I need to heal. And when I'm told I'm just negative, it's like twisting the knife in my wound.
If I tell you that I'm hurting, the way to make me feel negative is by telling me I'm wrong to feel hurt.
And the worst part is I know you're hurting too.
Is the problem that I'm looking deeply into the cause of my pain so I can make it better, and you can't understand why I would do that because you prefer to ignore it and keep pushing forward?
I'm not going to apologize for being so in-tune with my problems. But I am sorry if I waste my time with people who aren't interested in fixing problems to build a better world.
The reason I'm angry and hurting is because I care. I CARE SO MUCH. Because I'm so full of love and compassion. And if you can't handle my level of care, then get out of my way.
My husband and I went to a few state parks last week. We found this easy trail to an amazing waterfall. This is my happy place. At peace, in nature. It felt good... it felt like living. Simplicity. Beauty. Health. These are important.
Highasakite - Love Him Anyway
"Why don't you run for your life? Won't you run for life? Paralyzed. Paralyzed. Paralyzed. And you knew better. Didn't you? Didn't you? Know better. You know it's gonna break you, but you love him anyway. And I know you hate to hear it too."
Matthew Bellamy (of Muse) - Something Human (Acoustic)
"My circuits are blown. I know it's self-imposed. And all I have shared. And all I have learned. Is all I'll ever own. But something has changed. I feel so alive. My life just blew up. I'd give it all up. I'll depressurize."
The Boxer Rebellion - You Can Love Me
"The fight you pick is misunderstood. I will never be one to try and hurt you for good. Burn out, runs right through to my bones. You keep me awake, in waves of unwavering storm.
But I'll say:
You can love me
You can love me
You can love me
You have a choice"
Aurora and Pomme - Everything Matters
"So pure, and it hurts when the beauty is lost in the speed... 'Cause everything matters to me"
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?
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.
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.
(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.
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.
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.
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!!
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.
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.
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."
