Stop Watering the Fake Plastic Trees

I moved back home to North Dakota. I'm 38, living with my parents in their basement, and went back to my former job that I loved. I came home without my husband. I'm happier than ever. Purging the stress of my life has been incredibly healing for me. It's not curing me of my diseases, but my ability to live with disease is improving immensely. 

The phoenix of the Northern Lights directly over my house! I have never seen it with my own eyes until now, and I'm treating it as a sign that I can finally see my life clearly.

My priority in life is building peace, meaning reducing stress.

What motivates you to carry on in life? In my experience, people tend to answer status, wealth, skills, education, building an empire, or anything that gives people pride and a sense of accomplishment. These things are not my primary motivators in life. I'm not saying they're not important and that they don't motivate me at all, but I have learned that I don't wake up daily with motivation to keep advancing in these areas until I have my other basic need met. My basic need is peace in my personal life. What motivates me above all else is building a life of peace.

What peace means to me is having a consistent, stable, secure relationship with my loved ones. Peace means putting energy into building meaningful connections with people I love and care for and having it reciprocated. It also means not living with daily stress over things I have to accomplish, but instead flip it around so that the daily things I have to accomplish come from love and joy. I want my peace to come from a healthy marriage, because I'm built for marriage. I'm highly motivated to do work, chores, or tasks, or whatever for those I love. When it's for love, it's not stressful, it's purposeful. I'm quick to give my time, energy, and money for those I love. Because this is my nature, I need to be very careful about only choosing to love those who love me back without draining me. My perception of my marriage was that it was based on managing stress and avoiding conflict, not about building peace together. I did my part of the daily work to keep the peace, not out of love and joy. I need to build peace through deep connection without resistance, meeting each other's needs, and creating joy with each other. That's why living with my parents is working out brilliantly for me now. I love my parents, they love me, they are always consistent, and I feel very at peace here with them. Peace gives me security, and peace and security together are the foundation of what I need to be happy. Being happy because I have peace and security means I feel open and available to pursue my other goals in life without stress. I'm not unusual, especially for women, but I'm spelling it out like this because I think it needs to be said so plainly. So many people like me are trapped by looking for satisfaction through their work and status, not by looking for peace and security by loving relationships. My satisfaction in my work means nothing to me if I don't have peace at home with those I love.

My relationships have been in poor health for years due to my high stress level and lack of peace. My stress level was so high because my basic needs were not being met, and all the stress caused me to freeze up while waiting for my needs to be met. Years went by in which I felt frozen, in waiting, starving for love and connection, but feeling trapped and unable to build love and connection. My relationships with my friends and family all suffered because I felt too frozen up and unable to act. I also acted very defensive, dismissive, uncaring, rude, and distant because of it. My stress was so high that I couldn't give any of myself to anyone. I didn't like who I was or how I was acting, and I knew the stress was ruining me. I needed to end the stress and find peace again so that I could start to love again. I had to move home and live with my parents to end the stress. And over the past few months I've felt myself enjoying the company of people again. I've been able to be patient with people again, instead of defensive and dismissive. I really need peace in the foundation of my life, and I really needed to free myself from people and situations that drain my peace and caused me stress. 

It's not just unresolved relationship stress that destroys my peace. I've been learning how everything artificial degrades my peace. I've known for years to avoid artificial fabrics in my clothes and artificial ingredients in my food, because they make me feel sick. I'm finding it's also the same with artificial relationships, artificial information, artificial intelligence, artificial art, and so on. All the fake information, half-truths, synthetic images and videos, and misguided propaganda on social media and news media is enough to make me sick. The trouble is, it's making everyone around me sick too, and it's poisoning my relationships with real people. It's difficult to hold conversations with people when they think they are educated because of everything they absorb from social media, but aren't interested in hearing other information or points of view. I really value the scientific process and critical thinking skills so we can find the truth on any matter. I want to live in truth. I really enjoy speculation, theory, and creative fictions when they're properly labeled as such. What I can't stand, however, are lies that are told as if they are the truth. Living in these times that are dominated by lies makes it difficult to safeguard my peace, but I can do it as long as I live an honest life at home with my loved ones. (I'm not leaving social media, because there's still so much good it does, but I learned to stop engaging with lies. I unfollow, and move on. I love to learn about the local community through facebook. I enjoy following my friends. I like to learn from trusted people. I like the private support groups. There is a lot of good on social media, but it's getting overrun with a lot of artificial and misinformation.)

So instead of wasting time scrolling through all the deception and energy-draining propaganda on TV and social media, I'm choosing to use my personal time on playing single-player video games, reading books, drawing, listening to music, stretching, going for walks, doing chores that keep my space organized and clean, cooking new things, reading scientific articles (I love National Geographic), and so on. I'm trying to choose peace over anything that amplifies my stress. I'm choosing activities that require focus, not contribute to my brain rot. I'm choosing to spend time with people who can hold a conversation without distraction or looking at their phones, talk honestly and from their hearts, and also want connection instead of just to use me. 

I need PEACE. I don't need to live a life constantly on-guard against lies, manipulation, expectations that don't align with me, and indulging in junk entertainment and junk food. 

So all that said... 

Did I make the right choice to leave my stressful life behind so that I could work on my peace? Is it helping me manage my health issues? Is my health improving at all?

I wrote in my last post that yes, I'm seeing improvement in some areas with my health. I'm not profoundly better, but I'm not crashing as hard when I spend energy. I'm working harder at work than I have in years, and I do come home and have a crash, but they're not as serious as they used to be. I'm able to find the strength to get up and prepare a meal for myself and eat. My heart rate is still jumping up really high when I get up too fast, I'm still experiencing vertigo very easily, I'm still sweating like crazy at random times, my finger tips still go numb randomly, I'm still having adrenaline attacks at night that wake me up violently, and so on. I did really well for a couple of months when I first moved back here, but I think that was my body letting down and relaxing. Now that I'm working again and trying to keep up more of a routine, I'm having more symptoms. But I can see that I'm a lot more resilient because I'm not spending energy I don't have on stress or people. 

Another factor is that my anxiety is gone. I'm calm. I'm not worried about anything. I'm rational, focused on each moment, and not drowning in thoughts. I'm feeling a lot more creative, curious, patient, and interested. I'm not on the defense anymore. I'm not trying to always prove myself. I'm just me, in this moment, calm and collected. 

Something that concerns me very much, however, is the intense gut pain I keep having in the same area. Sometimes it's the pain of lasers cutting through me, sometimes it's sharp razor blades, and sometimes it's a giant sword through my entire gut. I don't know if it's endometriosis, actual gut problems, scar tissue, or something else. It's been intense enough and frequent enough to make me consider seeing a specialist. We'll see. My new Medicare plan begins in January. 


On another note, I found a tea mug that I really love! As you might know, I drink tea all day long.
Amazon.com: DOPUDO Glass Tea Cup with Infuser and Lid, 17.6oz/520ml Large Borosilicate Teacup,Tea Glass, Clear Mug for Loose Leaf Tea, Blooming Tea, Microwave & Dishwasher Safe - Tea Maker Gift for Birthday : Home & Kitchen

I've been trying to avoid using metal in my loose leaf tea, because metal can deactivate some herbal properties. My acupuncturist taught me that, thankfully. I got a little frustrated with the Rishi paper bags for tea, so this pure glass solution is solving all of my tea problems. 

(All ingredients listed below are organic and from Frontier Co-op unless otherwise stated. I buy them from my work place, where we have a huge wall of bulk herbs that I can buy by the weight. So I usually buy $2 or less of each at a time. I don't use exact measurements either, usually just a large pinch of each.)

My favorite winter-time tea has been: 

Cut and sifted ginger

Cloves

Ceylon Cinnamon

Mt. Capra Mineral Whey Powder (I add this to the mug, not the strainer)

  

And my favorite evening-time tea has been:

Blue lotus flower (Anima Mundi brand)

Butterfly Pea Flower

Lemon balm

Damiana 
Mt. Capra Mineral Whey Powder (I add this to the mug, not the strainer)

But right now I need some caffeine and I'm cold, so I made:

Indian green tea

Cut and sifted ginger

Cloves

Coconut flakes

Redmond Real Salt 

Rhodes - Be The Bird

'Cause you can fly

Be the bird

 Fly away

 See the world

 You'll be the news everybody heard

You'll never lose anything you've learnt

 Just promise me you'll keep going

 Just keep going and I'll keep telling you you're flying

(Radiohead Cover) Gin Blossoms - Fake Plastic Trees

Her green plastic watering can

For her fake Chinese rubber plant

In the fake plastic earth

That she bought from a rubber man

In a town full of rubber plans

To get rid of itself

It wears her out

Health Requires a Moral Compass to Achieve

I'll start with a recipe for relaxing sun tea:

Fill a tea sachet with equal parts lemon balm, hibiscus, and orange peel until full. 

Put it in a mason jar and fill with filtered water. 

Add allulose to taste. (Optional - sweeteners are not necessary.)

Put it in the sun for several hours. 

Drink it warm from the sun, or put it in the fridge and enjoy iced tea! 

Note: Hibiscus is a very potent flower, and it's not healthy for everyone. It lowers blood pressure and has the power to delay a period or make you bleed extra. I drink it only at the beginning of my cycles away from my periods, otherwise it does mess with my delicate hormones. I cannot drink it when my blood pressure is low, which is frequently. The issue is that I LOVE the flavor! Ha! 

Now onto the post... this one is more philosophical. 

Health is something determined by the mind, body, and soul all working together in unison. If the mind isn't healthy, the soul will be stunted, and the body will not be able to thrive. If the body is not healthy, the soul will ache for the ability to use the body to grow, and the mind will be stunted and held back by physical limitations. If the soul isn't healthy, the mind and body will not find meaning in existence and will stunt the growth of both. All three want to grow in unison. If the mind isn't healthy, the body and soul will strive to get the mind back on track. If the body isn't healthy, the mind and soul pour all their energy into regaining physical health. If the soul isn't healthy, the mind and body both ache and strive for meaning and purpose to feed the soul back to health. 

This is why health is not determined only by things such as your blood pressure, psych eval, or if you go to church. But it is why finding a community that brings your soul peace can lower your blood pressure and encourage a better mental attitude. 

This is why health starts with a good upbringing in a stable family, receiving a quality education, having the opportunity to learn and practice skills, and being loved unconditionally. 

This is why relationships in adulthood either grow our health or poison our health. If you choose a partner that grows with you in love and purpose, your mind, body, and soul all have the fuel they need to be healthy. If you choose a partner that always questions you, discourages you, takes from you instead of giving to you, and abuses your love or commitment then your mind, body, and soul stay stagnate and cannot grow. Health cannot be stagnated, because it must stay in motion along with the process of aging. 

This is why it's necessary to learn how to maintain our health. We must learn the skills of love, empathy, emotional intelligence, spiritual servitude to all of creation, and integrity in order to live a healthy life and inspire health in others. We must learn to be physically active in creation in order to fulfil our purpose and create the connection to creation that our souls rely on. Our bodies need food, sun, water, and fresh air to be healthy. Our minds will wander without direction unless we are connected to healthy communities of people and living in harmony with creation. 

We cannot be individuals. Not really. We own our minds, bodies, and souls, yes. We own our choices, yes. But our existence depends on each other, and our health is determined by each other. If you own land, you impact the health of the surrounding land other people live on. If you drive a car, you impact the air other people breathe in. If you eat food, you poop it out and that impacts the soil or waterways (for better or worse, ha!) If you lose weight, it evaporates into the air other people breathe. You really cannot fully isolate yourself from others, and your actions have an impact on everyone else. 

That's why there are always ripple effects from your choices. Make the ripple a good vibration that helps others live their best lives too. 

This is why we build strong moral compasses: we recognize the impact of our actions on other people, and in turn how our actions affect our own health. 

Life is difficult. It really is. None of this is easy. It's really difficult to live in harmony with ourselves, others, and all of creation. We develop ambitions that blind us to the needs of others. We don't grow past childhood, when all that mattered was living to be happy and carefree. We hold onto anger against people who caused injustice, and we confuse passion for retaliation with that spiritual purpose we all need for healthy growth. We learn not to trust each other, so we close ourselves off to the connection with others that helps our souls to grow. We learn to focus on meeting our own needs to survive, meaning we never develop the skill of love for others, meaning we fail our relationships, and in turn fail our children. Our children are not born into environments where they learn what it means to be healthy, nor given the skills to achieve health in the mind, body, and soul. Life is very very difficult. 

What I see in our current post-modern civilization is a globalized world led by people who learned how to achieve ambitions, but have not learned the skills needed to be a loving and connected person. How can our leaders be mentally or spiritual healthy when they lost sight of how to connect with others? How can a person in poor mental and spiritual health led others?

I believe this is why we have so many broken families. I believe this is why we created an economy that relies on every individual person working full-time, instead of focusing on building families that raise our children. I believe this is why we created a society that has no problem with slave labor, keeping people in poverty, and feeding everyone very low-quality unhealthy food. As a result, the birth rate is plummeting. The health of people, especially those in the USA, is dramatically plummeting. Haven't we learned that humans only thrive in communities? If we don't take care of each other and instead we continue to exploit each other, then we're not going to be able to maintain the civilization we built because there won't be enough humans left to do it. 

But it's not easy. It's not something we can simply fix. 

The most powerful thing you can do to help restore the health of fellow humans is to be healthy yourself. Make a commitment to your own health. Start with the foundation: love your family by always encouraging the best for them, choose healthy foods and time in nature for your own body, and stop losing your mind to all the distractions that don't help it grow. Be the change you want to see the in the world. Humans thrive on community, but it takes healthy individuals to create community. 

I know, without a doubt, that my physical illnesses are impacted by the people I choose to invest in. Yes, I get tired and need to rest after laughing with people I love, but it feeds my soul and I feel at peace while I recover. When I'm instead drained by poor interactions, such as arguments or listening to complaints from unhealthy people, I have to protect my mind and soul from the corruption while I recover, which leaves me more tired and takes me longer to recover from. When I feel attacked and disrespected, I feel myself growing very icy cold, my fingers and toes get numb, my throat grows hoarse, my vision blurs and I get tunnel vision (literally in my sight, not in my thoughts), my teeth clench and it's very hard to open them to speak, my gut gives me really sharp pains, and more. All my physical health issues intensify, and then I have to recover for a long time from that. This is why I'm extremely careful about who I choose to spend time with. This is why I give my energy to people really carefully. But when I'm with my people and I'm feeling connected and happy, it's so much easier to endure my chronic illnesses. Seriously, it's really incredible. 

We have to love each other. We have to develop moral compasses. We have to make choices that only feed the health of all of creation. We have to learn about each other and how nature works. We have to make educated choices to make moral choices. If we don't collectively do this as a society, we're going to fail each other. 

I know I'm guilty of complaining a lot based on my anger that people don't choose to be better. I have to learn how to be better, that's where I need all of you to teach me too. We all have to be the change we want to see in the world. We have to put out the vibrations other people need to grow on, because we're going to vibrate simply just by existing. Choose healthy growth for everyone over preventing others from healthy growth to feed your own ambition or emotions. 

I really love people, and it really hurts me to see people ruin each other because they don't know how to be healthy. I don't want to live behind a bubble to protect myself. I want to be a part of this world reclaiming health, love, families, and true joy from the connection with creation. 

Now I'm quite tired, but I'm going to go sit in my sauna because I feel my blood stagnating too much. Then I'll relax and recover for the rest of the day. 

Inhaler - If You're Gonna Break My Heart 

(This is Bono's son, Eli Hewson. This is his band. He looks like Bono and occasionally sounds really similar to Bono. This brings me a lot of joy, haha.) 

We woke up faded

From the shape of the night

Couldn't find the words

Couldn't find the light

We got caught in the tide

And the shore was on the other side

There's no other way around up or down

When the sun shines on my insides

If you're gonna break my heart

Smash it to pieces

'Cause I'm not gonna need it

As much as I do right now

Right now, ooh

I showed you mercy

You gave me murder

I got your ten tonne monkey

Jumpin' up on my back

We got caught in the ride

Of bein' young and alive

There's no other way around up or down

But some nights, yeah, that's alright

If you're gonna break my heart

Smash it to pieces

'Cause I'm not gonna need it

As much as I do right now

Say what you're gonna say anyway

Nothing really means as much as you do

I should be on my way but I can't help

Waitin' for you

One Year and 2 Months Since Moving Here Update

I have a list of things I feel are worth blogging about, but I sit down to write and I can't find the energy to pull them from my head and type them into words. I want to write about how I discovered a new food that I can eat and benefit from. I want to write about how to buy meat, especially when it's difficult to find quality meat where you live. I want to write about how the culture of your local community affects personal health, and the ripple effect that poor health has (this is a story about a stray dog.) I want to write about my new Fitbit and faucet, both of which make my life easier! I want to write about my thoughts on the movie Common Ground, the sequel to Kiss The Ground. 

The reality is that I'm feeling stuck in perpetual exhaustion. Each day I'm striving to just keep up with the emotional turmoil in my head, the physical demands of my weak body, and the chores around the house. I feel like I'm constantly waiting, so I can't start a project or do anything because I just have to wait, but what am I waiting for? I have no idea. The problem is, when I'm doing things, I feel like I have to rush and do them as fast as possible. I'm sure my adrenals are shot again. I think it would help to have a job so I could have some sort of routine or rhythm in my life to help me pace. Searching for a job has been a nightmare here - my options are all physically demanding for very low pay. I've been applying for jobs, but I've never been invited for an interview. Maybe it's because I'm asking for more than $9/hr and only part-time hours? There is a serious lack of part-time jobs here - the work culture here is very "all or nothing." Work-life balance? That isn't a concept here. I also think I'm judged for being from the north. There's a strong dislike of all the northerners and Californians moving in, and my accent gives me away. 

There is a war inside my head that is seriously taxing me. I have major life decision fatigue, and my inability to take action to fix my life is making me feel worthless. Half of me believes I need to snap out of this slump, pull myself together, and go work any job I can get just like other people do. The other half of me knows my health is too poor to actually do that, and it won't solve my problems because not being healthy enough to do the work will make me feel even worse about myself. This half of me keeps coming up with philosophical reasons why all people, even sick people, have value and shouldn't be expected to be worker bees when they're not able to be. This side of me keeps finding peace with my situation, but then my husband comes home from work and we talk about how tight our money is, and I start to spiral back into the guilt of not helping to earn money. I don't know how to enjoy being me if I feel like I'm not contributing, and he makes a lot of comments about how I'm not earing money. And I spiral back down the whirlpool of despair. How can I be at peace? 

I am on disability, so I am contributing. But is it enough? I do the laundry. I clean the house. I wash all the dishes every day. I run the small errands in town. I cook most dinners. I work myself to exhaustion every day just by trying to keep up with chores. But is it enough? Am I enough? Am I loveable when this is the best I can do? If I'm only loved for what I can do, then I feel like I'll always be a disappointment. I want to be loved for who I am, how I love, and how much better I make life. 

If I felt settled down, I would honestly consider starting a hobby farm with goats and chickens. I like people, but I don't meet the crazy high demands of people. I used to be able to before I got sick. It's not because I'm lazy - I used to thrive from doing physically demanding jobs for long hours. I enjoyed the work too. I miss feeling and actually being CAPABLE. Life would be so much better if I could just use my body and work! But, I have to deal with my reality: my body can't make enough energy, and I get dizzy and weak from using the energy I do make. And I'm not settled down at all. I do not expect to have a long-term situation here in South Carolina. 

I feel like these blog posts are becoming very repetitive, but my head is very repetitive. I'm stuck. I need to get broken out of this cycle of despair. 

I do have positive things to write about, I promise! I'll try. But not right now. I need to lay down. 

I hope that these blogs serve as some sort of record of how awful life is for those of us with ME/CFS. Let this help someone somewhere feel less alone... 

"Life Happens Wherever You Are"

I'm contrary, but I know I'm not alone. 

I don't conform to what I don't agree with.

I'm frugal, but in an expensive way. 

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"

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? 



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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. 

"What A Day, What a Life, Ahhhh"

Oh, just think about how much I could be writing about! What a year. What a drain. Energy vampires around every corner. They suck me dry of the desire to write about it. I do have a desire to share this with you all though.

I know I have written about music many times here. Music is incredibly important to my mental, emotional, and spiritual health. There are several artists who speak to me that I love and adore, but London Grammar is the one band that produces the sounds that speaks about me. They are the sound I would produce if my body was a musical instrument. Want to understand how I'm feeling on the inside? There's always a London Grammar song for that. Have you seen those devices that amplify the energy that plants emit, and it sounds like ambient music? Well, London Grammar is that device for my body.

"What A Day" in particular right now.

I want to break this down for you, because I think this is a great way to explain what I feel like most of the time.

It starts with Hannah's higher head voice breaking down into a low vocal fry soft scream, which she uses to state the mood. Then the slow driving beat of the piano, and her low voice slowly erupts into a type of subtle scream with her "ahhhh." Slowly the drums carry the driving beat forward while the piano sounds more erratic if you pay attention to it.

The textures of the various beats from the piano, drums, and later the guitar perfectly fit my heart beat and adrenaline. They mingle together like they're at odds with each other. They express the current that keeps flowing in my body to keep me going. Do you hear how they sound unsettled, never quite resolving into a comfortable sound? I have that type of forced drive always coursing through me. But even though the tempo is not slow, do you hear how her vocals sound slow, dissociated, and not matching the beat? How her vocals are a different current on top of the foundation? That's my inner voice. Very low energy, despite that drive below the surface, and what I express comes out as a soft wandering frantic anxiety. It takes the majority of the song before she sings an actual melody with coherent phrases, and then it's short lived before she breaks her vocals down again into the pleading soft screams. Do you hear how this song expresses the evening at the end of a long hard day, when cortisol levels should be dropping so you can wind down, but you just can't let go to actually rest? That's the state I live in 90% of the time. I'd like to see you function like a normal human being when this is your best energy level.