Switching Off Survival Mode

I'm currently in the stage of my cycle that causes my empathy and creativity to be in overdrive, but also heightens my feelings of deep sadness that fuel a compulsion to save the world from pain and suffering. It also causes me to feel immense fatigue at the thought of taking action, so all I can do is dream of solutions that quickly fizzle out in my brain.  This is the stage that takes places days before my period begins. Also, the pain probably influences my brain too... pain influences everything. 

Here's what I can't stop thinking about: 

I keep observing that people are living in "survival mode." We are a collective group of individuals all suffering independently because we've been trained that we must be 100% self-sufficient on our own without ever depending on anyone else. The reason this is so stressful is because it goes against human nature. We're a social and dependent species. It's in our DNA to need other humans for our survival. We're trying so hard to accomplish being totally independent, but as a result, we forgot how to be dependable for other people who we need in our lives. 

As a result, people are recognizing that they need healthy attention, but they don't know what healthy attention looks like, so they'll be satisfied with any attention. So they're settling for acting in unhealthy ways in order to attract unhealthy attention, because any attention feels better than no attention. It's like settling for eating a bowl of candy for a meal simply because you don't know how to find a meal of steak and veggies to eat. 

What all people really need is to meet their dependency needs. This looks like: respect for the soil we stand on and the natural environment of the earth that we live in, a reliable small community of people to belong to, a skill or value to contribute to people in our community, and a curiosity for each other that inspires us to care deeply about each other above anything in our lives. We need to care about our community more than our jobs, our money, and our ambitions. Our communities should create our jobs and the role we fill in our small local society. Our communities should meet our needs. 

Until we learn how to be people who serve each other, we're going to starve to death for healthy attention. We're going to keep making bad choices in our relationships, personal ambitions, goals, and our moral values. We're going to continue to view other people as "toxic" because they get in our ways of living our own personal lives according to our own personal standards. We're going to continue to teach each other to cut "toxic" people out of our lives, so that we can each do what we want with our lives. 

Don't we understand that we're creating "toxic" people by denying other people respect? The less respect we give to each other, the more these other people will ferment in their own self-pity and insecurities that causes them to develop poor coping mechanisms that lead them to acting to "toxic" ways. If we don't want to deal with toxic people, let's encourage each other to be better and lead by example, right? We need to develop a culture of respect.

We should reframe our minds to view other people and ourselves with curiosity. When you learn to wonder "why" you behave in certain ways, you'll start to observe your real needs. Your real needs are what you need to be mentally, emotionally, spiritually, and physically healthy person. Your real needs are NOT what you need to be a financially successful person. You will probably find that your real needs are in conflict with how we're forced to try and survive in society, because our economy treats us like robots and not as humans with real needs. When you know your real needs, you can communicate your needs to others. Then you can observe the real needs of other people and choose to help them meet their real needs. If you're really lucky, savvy, or financially blessed, then you can develop your financial security in ways that help you meet your real needs too. 

I know I'm being vague. This is mostly just stream of consciousness to see what comes out of me during this moment of creativity. Perhaps I'll write a more well thought-out book about this topic. 

My point is that we're in a collective health crisis because we're denying our "real needs" in order to survive in a society that is unsurvivable for most people. The ONLY way to move forward as a human race and stop living in "survival mode" is to learn how to live in small communities that care for each other again. We can't take on the weight of world, but we can help lift the burdens of our small local communities. We can do our part in our small ways, and that's all we're really capable of doing. We don't need to be global people. That's too huge of an ask for anyone. 

I am a firm believer that living in chronic "survival mode" is fueling our chronic illness pandemic. All the bad foods and poor diet, disconnection from nature, artificial lights, and modern problems are definitely huge contributors to our health crisis. I'm convinced that the stress of modern life is the primary root cause, before all the other factors. If I told you to reduce stress in your life, tell me how you would actually be able to do it? How can you reduce stress when you can't eliminate all the overwhelming problems of modern society from your life?

This just appeared on my Facebook feed, and I think it's a good simple example:

Think about how insane it is that we've normalized this extremely high-stress situation: DRIVING. When we're driving on these busy roads with high traffic, we must be on high alert, otherwise we can literally die or kill someone else. One mistake can be deadly. Yet this is NORMAL now. So we really need to trust each other to be on very high alert, right? And yet, people are past capacity in how much stress they can tolerate in their lives. Your mind wanders a lot while you're driving, right? You think about all your needs and problems while you're driving, right? Yet we expect other people to be fully focused on the roads too? Our day-to-day lives are similar to this. We're treating other people as being fully competent, not with the grace and forgiveness that they need because of their quiet internal suffering. Let's stop forcing people to live in high-alert, always ready to survive anything at any moment. 

I understand that many people are dangerous. I know that there are plenty of people who will try to rob me, harm me, take advantage of me, and abuse me. I know that I must stay "on guard." I know I can't simply trust people. I do know, however, that we really need to act with a lot more grace, understanding, and compassion towards others. If we want people to be better, we have to give them room to breathe and be better. The more we expect of other people, the more they'll act in "survival mode," which leads to lots of toxic survival behaviors. 

I can tell you one thing for certain: My body creates so much of its own stress from surviving all my health issues, that I really can't tolerate outside stress from the world. I shut down from a little too much stress. I actually saw a great video from a doctor about this in connection with endometriosis:

So I am not at all embarrassed by the fact that I'm a 38-year-old who chose to get divorced and move back in with my parents. This was very important for me on my healing journey. My marriage was not an environment I could heal in or reduce stress in (when it should have been my sanctuary where I could be safe and heal.) We had very different priorities in life, and his ambitions dominated the life path we took as a couple, which caused me immense stress that I couldn't handle and left me starving to have my "real needs" met. I'm not being negative about him, but I had to finally acknowledge that we were not compatible and could not meet each other's "real needs." This was a very important decision for me. Living with my parents relieves a huge amount of external stress for me. I prioritize a healthy relationship with them and they do the same with me. It's a great environment for me. If I didn't have a place to go where I could reduce stress and feel "safe," I honestly think I wouldn't be here right now. My level of stress was so high that it was doing irreversible damage to my body, heart, mind, and soul. He may have wondered why I didn't want to attend anything social with him, and I understand the answer now: my personal needs were not being met, and that was causing me so much stress that I really couldn't process other people. I didn't have the capacity left for handling even one word from another person. I was starving to meet my personal "real needs." And now that I've been living with my parents for nearly a year, I'm feeling my stress meter lowering slowly. I'm still not ready to be very social. I tried, and found out quickly that I'm not healed enough yet. But I'm improving a lot! 

I was really messed up from a bad marriage. I'm understanding it better and better as time goes on. I was seriously starving for healthy attention.

I'm still catching myself oversharing too easily, as a probe to see if I can trust people.

I'm starting to feel anger where I used to feel numb, and I'm allowing myself to feel that anger now, when I should have felt it years ago.

I'm uncovering more and more emotions that I couldn't tap into while I was only trying to survive, and now I'm slowly learning to feel myself instead of just taking quick action for fear of death or failure.

I'm learning how to breathe when I used to hold my breath - literally, I noticed that I stopped breathing when I had certain thoughts, and now I'm realizing it, so I'm teaching myself to breathe while I have those thoughts now. 

But I'm also recognizing my emotions and behaviors in other people. I see how many people are living in "survival mode." Society is abusing us by requiring us to meet unrealistically high expectations, and we are abusing each other just to try and survive and get ahead in life. We've learned to be in competition with each other instead of being team (community) that encourages each other. This pattern has to stop or the human race is going to kill itself off. As it is, we're unlearning how to be a strong race of people that can thrive, and we're shifting into being a race of people who only knows how to manage day-to-day with no regard for each other. 

We're losing our ability to care about each other because we're at capacity trying to care for only ourselves. 

What are some of my favorite ways to be more in-tune with my "real needs" and help myself meet them? 

- Gardening! Gardening puts me out in the sun, in nature, in the soil, and touching plants. I'm observing the life forms, studying their needs, taking care of them, and helping them thrive. In turn, I'm getting lots of zucchini, cucumber, tomatoes, and sugar snap peas to help sustain me! 

- Creating a routine of cleaning my space. Washing my dishes, picking up after myself, managing laundry... you know. It's how I'm showing myself that I can take care of myself in a healthy way without being overwhelmed. If I don't feel capable of doing chores, I don't stress myself about it. I simply do it when I'm feeling better. 

- Part-time work in a very positive environment where we all agree that it's important to take care of our health! We're a small team that cares about each other. That's worth SO MUCH. It's such a good environment and I really believe in our mission! How many people can say that?

- Going for walks with my parents and having good conversations to deeply connect with them. Family is super important, and doing healthy activities with each other is great motivation. 

- Gaming!!! Why? Because this allows me to have complete and total focus. It's training my brain to stop being hyper alert to outside things. It's training my brain to have longer attention spans. It's training my brain to problem solve without stress. You know what games are actually phenomenal for rebuilding attention spans? Older turn-based games like the original Pokémon games, Final Fantasy 1-12, Sim City, Zoo Planet, and so on. Age of Empires 2 random maps are like calm meditations for me. Octopath Traveler games are wonderful too. Very healthy for retraining my brain that's been trained to be hyper alert. 


The things that ARE NOT working for me:

- Meeting new people. It's too much. I tried. I need to be investing in the relationships I have with close people in my life. I keep accidently ignoring and ghosting people, and it's really not by choice. I think to myself, "I don't have the energy and focus now, I'll reply a little later." That turns into days, weeks, months... It's not intentional. I'm getting overwhelmed way too easily.  If I've done that to you, I'm sorry. Sincerely. I don't have the energy and it's not about you. I'm just not ready yet. 

- Spending time listening to people who just want to complain, talk about all the negative news, and talk about how much they hate people or groups of people. I'm someone who cares deeply about moral justice, but I don't want to waste energy on things I can't control or negative energy that doesn't help solve anything. If you're someone who has so much rage in you that you feel a need to release in through insults, bad attitudes, disrespecting others, constant complaining, whining, bitching, and moaning... then go talk to a therapist, not me. Please. Don't drain me with your negative energy. This is toxic behavior that will cause people to cut you out of their lives. Don't be toxic. Be a positive contribution to society instead. It's possible to be against something in positive ways. 

- Treating myself with food. It's just causing inflammation, weight gain, poor sleep, anxiety, and extra pain. Food can't be the way I reward myself. I need to be super disciplined with food. I must reward myself in other ways. I also have to be careful not to do it by spending money I don't have. My budget is pretty tight. 

- Not following a routine. I'm very much a person who listens to my feelings and does what they say, so thankfully I often feel a strong sense of responsibility, ha! I have to be really aware of the fact that if I do what I feel like, that I won't go to bed, I won't eat well, and I'll end up feeling so much worse. My anxiety will become a problem for me. I'll get overwhelmed by all the things I have to do and haven't done yet. I really need structure to keep my responsible for myself. 

Tom Odell - End Of Suffering

At the end of suffering there's a door There is nothing, and everything and more A sticker on the window saying something like You've got nowhere left to go, take a step inside At the end of suffering there's a room There's a child's crayon drawing of the moon I light my cigarette I lean against the wall I feel that resignation There's nowhere really left to fall Ooh At the end of suffering there's a home And the only way you get there's on your own I lay down on the sofa Turn on the TV Shut my tired eyes Hopelessly, I dream At the end of suffering there's a world At the end of suffering there's a world I stumble to the window Pull the curtains wide Spent so long in darkness, God, it's good to see the sun It shine Ooh Ooh

Everything I do I do for Love - An ME/CFS Lament

Do you live with an "impending sense of doom" that nags at you every day?

I do.

I have since moving to South Carolina, but the feeling has grown stronger and stronger. Along with it, my health has declined more and more. 

There are rational reasons for feeling this way. This was not a move that offered security, but instead, amplified a lot of doubt about the future. Adding to the instability is fear of the economy. We're in stagflation now, some have called it a silent depression as well, and an official recession is looming. I don't feel like I'll survive if we carry on as we are right now. I worry the jobs and then the money will disappear. As someone in a reel on Instagram said, "There is no middle class now. You either have money or you don't. If you're making only $100k per year, you don't have money." 

The problem with ME/CFS is that the condition doesn't allow us the energy to worry. If we spend energy on worry, we won't have energy to do anything else. It makes it extremely challenging to plan complicated issues such as surviving a major economic crash, and if I do come up with a plan, it's even more difficult to find the energy to take action. If you have a spouse that doesn't agree with you, it's almost impossible to fight. 

This morning I was incredibly tired from days of mental gymnastics, trying to plan my future so I'll be ok. I'm still in a daze, but if I don't release these thoughts then they'll continue to drain me. I sat outside on the porch and watched the birds, soaked in the sun, and let my mind take a break. I just let myself feel tired. The problem was that the thoughts kept coming back as I observed the world around me. I thought about how I would love to be a bird, because their lives are simple: survive and procreate, but have fun flying too. Sure, they have all sorts of stress, such as being eaten by other animals, but their lives are not complicated by the societal expectations of other birds. And how humans can't just let humans live the way birds let each other live, we all have to compete for money and make ourselves useful to people with more power than us. I watched all the cars drive by on the road in front of my house. Many of them were business vehicles: pest control, heating and air, campus security (I live on the edge of the university), emergency service vehicles... how many of those people are going to earn enough money doing those jobs to keep a roof over their heads when the economy tanks? As it is, it's hard to afford food. It's hard to keep my mind from going right back to these overwhelming thoughts of worry. Maybe they already paid off their house, maybe their spouse makes a ton of money, maybe they have the ability to live on beans and rice without slowing down because of a bad diet... it must be nice to not need so much to manage your health and be able to focus on work. 

It must be so nice to be healthy enough to just focus on a job every day, and not have time to worry. Have a task to do to stay occupied. How nice it must be to go to work, do something physical like build a fence for a client, and then go home with money and the feeling of security. The problem with ME/CFS is that I don't have the endurance to just go do a job like that. Can you imagine me hammering nails when I can't even find the strength to cook breakfast (I have not eaten yet today...)? What do I have to keep me occupied, build my sense of security, and feel like I can rely on myself to survive? Nothing. I have nothing. Because I have to rely on my husband, and he's not making enough money to build up any savings. We're living paycheck to paycheck. Which, let's be honest, is totally absurd... he has a doctorate and works at a university. But the problem is that inflation is rising and wages are not - he has a great job for pre-pandemic times. I'm on disability, so I do contribute, but I feel like dead weight. He'd be okay in a smaller, cheaper rental without me... I can't help but think these thoughts.  

When people tell me I have so much to live for... well, it's funny, isn't it? If we saw a crippled deer in nature, we'd probably put it out of it's misery, or sit and watch while a predator eats it. When we see crippled humans, what do we do? Some have compassion, but in my experience, most tend to judge them for not contributing to society and making more money. So many people want disabled humans to be some sort of inspiration: "Peggy lives with chronic pain, but that doesn't stop her from being a billionaire, so what's your excuse you lazy bum???" The reality is that "Peggy" was probably born into a wealthy family and already had the means to grow wealth, and odds are she's able to afford the best medical care so that she can work. But no, in my experience, people are so caught up in the rat race that they can't understand anyone not racing hard along side them, no matter what handicaps they have. Why should I have to live to participate in the rat race? I don't want to race. I'd be happy to just exist and share all the love in my heart... but that doesn't make money. I mean, I can find ways to do very purposeful work that pays me some money. $100k per year, though? Even $50k per year? No... I don't have the energy or experience to meet those expectations in a job that would pay that. Money money money money money money money money money... if no one will pay me in money or support me with their money, what do I have to live for? Because it's not actually possible to live with poor health and without money. 

Sitting outside caused me to focus on some issues with my health too:

- My eyes can't focus well. They go in and out of seeing everything through a blur. I don't think it's a vision problem because I am able to see clearly when I have energy. 

- The pollen count is exceptionally high here, and everything is coated in a yellow layer. My allergies are causing me some issues. I've been dealing with rashes, bloody noses, runny nose, eye irritation, lots of coughing and sneezing... do you realize how much energy it takes to deal with allergy symptoms?

- Yesterday I sneezed and caused me to feel an intense stabbing pain near my ovary, and it throbbed for a while after. It made me scream and cry a little. I questioned if I had just ripped something and needed the ER... and how in the world can I afford the ER? That would bankrupt me. There's absolutely no way I could deal with a thousand dollar medical charge. It left me profoundly scared at the idea. I'm not really ok when I'm one medical emergency away from financial disaster. I wondered if it was smart of me to sit outside, which could induce another sneeze...

- I am hitting brick walls more and more often. What I mean is that I'll be doing a task or talking to someone, when suddenly I can't do it more. It's like my body's power supply shuts off and I go dark. There's basically nothing I can do to reboot and continue. I just turn off and wait for my body to recover. 

- Why was my period 6 days late? I had to endure PMDD torture for 6 extra days. Why do I have to live like this? I had 2.5 weeks of PMDD which caused me to hate being in my own skin, and challenged me to get anything done. I can't live like this. 

And so... I wonder... what is my life for? I just want to love and be loved by you. Nothing else really matters. Love is why I want to work. Love is why I want a family. Love is why I want to live my life. Who are the people who understand that the meaning of life is to love? That everything we do, we do for love? Where are you? Because I'm drowning in a culture that thinks how much money you make is more important than how well you love people, even though no job is willing or able to pay more... the wealthy don't work jobs. They were born into wealth and know how to invest it. People who live to earn money in jobs are the poor now. So even if I work to earn money, I'll still be poor. There's no digging myself out of this hole as long as I'm this sick, and if I miraculously heal and start working full time, I'll still be sitting next to the hole, always aware how easy it is fall back down into it. 

The people who I have confided in and care about me the most keep telling me exactly the lyrics of this song (actually, instead of "love yourself" they say "be selfish," but they mean the same thing):

The Boxer Rebellion - Love Yourself 

You told yourself
"I'd write a letter today"
Tell the world that you would hurt yourself
Can't look in a mirror much less anyone else

You try to move on from here
But you look like a ghost alive
You can't think always running in place
A lost soul that won't show his face

But I know you're just someone who's feeling all alone
You're just someone who doesn't seem to know which way to turn
If you just ask for help, if you just ask for help
First thing I'll say is you gotta love yourself

Find it hard to take
Hard to take even the best of praise
A pair of hands that became too tough
A growing armor for whatever they might touch

But I know you're just someone who's feeling all alone
You're just someone who doesn't seem to know which way to turn
If you just ask for help, if you just ask for help
First thing I'll say is you gotta love yourself

And while I completely agree with them.... what I'm feeling is this:

Simon and Garfunkel - El Condor Pasa (If I Could)

I'd rather be a sparrow than a snail
Yes, I would
If I could
I surely would, mmm hmm

I'd rather be a hammer than a nail
Yes, I would
If I only could
I surely would, mmm hmm

Away, I'd rather sail away
Like a swan that's here and gone
A man gets tied up to the ground
He gives the world its saddest sound
Its saddest sound

I'd rather be a forest than a street
Yes, I would
If I could
I surely would mmm, hmm

I'd rather feel the earth beneath my feet
Yes, I would
If I only could
I surely would

And what I'm seeing in the world today is this attitude... 

Tom Odell - money

(I hope it's understood that this song is a criticism, not an anthem)

Gotta make more, gotta make more
Gotta make more, gotta make more money
Gotta make more, gotta make more
Gotta make more, gotta make more money

Walk out the door
Thank the Lord for my Gucci and Dior
We're looking so great
We take, take, take
All we gotta do is

Take another picture of me
Take another picture of me
Take another hit and you'll see
That if you want it, you gotta get mean 'cause
We're just kids climbing up the trees
Just kids climbing up the trees

Walk out the door
Thank the Lord, ain't no time for being poor
We're looking so great
We take, take, take
All we gotta do is

Make more, gotta make more
Gotta make more, gotta make more money
Gotta make more, gotta make more
Gotta make more, gotta make more money

Being a Highly Sensitive Person with ME/CFS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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



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

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

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



....


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

Tori Amos - Metal Water Wood


Eivor - Piece by Piece

Rhodes - Sunlight

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

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



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

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

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

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

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

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

Chronic Fatigue is not "Boring"

Someone asked me recently how I'm not bored spending hours alone with only myself daily. 

First, no. The nature of chronic fatigue is to not have the energy to do much. It's not boring to be fatigued. It's like being lost in a meditation that I can't wake up from on my own. Time doesn't feel the same as when I have energy to work with. Time doesn't feel linear, it feels like something that I have to remember exists.  

Second, do not underestimate my ability to dream for long hours, even without falling asleep. If I had it in me, I would write novel after novel about my dreams. Many, however, are in very slow motion. I experience many images that last me for... who knows how long? It's not boring, it's allowing me to stay alive with my feelings while I can't physically participate.  

Third, even if I was healthy enough to take on the world like the rest of you act like you are (are you really?), I'm naturally very introverted. I'm not anti-social. I love to make deep connections with people, even if they are not lasting. I draw my energy from being alone, whereas people drain my energy. I have always needed to spend time alone every day to be with myself. 

Fourth, what does it matter? This is my process to allow myself to successfully come out of my shell and use my energy out there in the real world. I'm not turning to pot, alcohol, heroin, pain kills, and other substances. I'm just resting. I'm just zoned out. I'm not turned on, and I don't want to be. How can it be boring when I'm shut off?

Fifth, do you know what happens when I don't get to be boring and be alone for hours daily? I fall apart and crumble away until I'm completely unresponsive to people. The headache, the throbbing in my ears, the heartburn, the gut ache, the fibromyalgia, the chest pain, the endless internal screaming for mercy... I simply cannot over spend my energy without my body protesting hard. So I ask again, what does it matter to you, if it means I can be present and engaged with you when I am alert?



But... there is this incredible thing called the internet. I feel like I have the ability to be more myself online than in reality. The internet removes the stimulation that drains too much of my social energy in person. No body language, no vocal inflections, no eye contact, and no environmental stimuli. I can laugh without expressing it. I can take my time to think about a response instead of just react. I can watch a video of someone or listening to their recording as many times as I want to really absorb what they're saying. I can lay down in bed without having showered and my hair a hot mess while having the time of my life talking with people all over the world without seeing each other. How many evenings have I spent too exhausted from my day to physically do more than lay in bed, but still have a desire to connect with someone, so I join my friends in my mobile game?

And the beauty of the internet is that when I've reached my limit of what I can handle, I just put my phone down and close my eyes. I don't have to explain that it's time to go. I don't have to watch someone get angry with me for zoning out while talking to me. I don't have to physically walk away. I can just set my phone down. 



I have times when I'm so blood deficient that I'm not social for weeks at a time. As if chronic fatigue isn't enough, I have a problem with endometriosis causing me to bleed heavily during ovulation too. Imagine bleeding for half of every month. I think any person would feel exhausted by this too. I'm going through this right now. 

I tend to feel extremely heightened emotions during these times. I don't want to be social, but I do want to play out my emotions and experience them deeply. It's a lonely feeling because I don't want to engage with another person to feel these emotions, partly because it takes energy I don't have, but also because I'm afraid they won't be able to feel the emotion I need to feel with me. If they can't make me feel how I want to feel, they'll only drain me further. So this is why I turn to music. I can be extremely selective and picky, choosing to only listen to songs that fit what I need to feel. 

Today's song? Well you see, someone on youtube made a video of the same song playing for an hour. It couldn't be more perfect for what I'm feeling today. The mood of the song is exactly right. (Forgive the F bomb in it - but it's one of those appropriate uses, not an excessive, boring, and rude usage.)

"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.

Fitness and Conditioning

I wish I could go to a gym and work out for an hour. I often day dream about lifting weights like I used to. I loved the feeling of being sore and tight in my muscles, feeling a natural tiredness from actually using my body well. I loved seeing muscles forming on my arms and legs. I loved shaping my body by staying toned. It felt really good. Now when I look at women in great shape it's a little hard for me. I'm really happy for them, but it makes me want to join them at the gym and get back into shape.

I really do my best to work out, but it's really challenging with chronic illness, and often ineffective or harmful. Let me break this down:

- Fatigue. I often have the mental willpower to sit at the machine and start pumping weights, so I'll go for it. And then I can't even finish a set before I run out of energy. This isn't a de-conditioning issue. If it was then my diet, supplements, and regular practice with the weights would mean I could do more every time. If it's de-conditioning, then I can actually improve. No, this is a problem of my body deflating with every pump of the weights until I have nothing left to stand up with. Every time I try I can do a different amount of weight lifting until the fatigue wins. No, it's not a de-conditioning issue, because if it was, I would be able to consistently do more with practice.

- Pain. I don't mean the normal wear and tear on muscles from working out. You know, the "it hurts so good!" pain that I love to feel. I mean joints on fire. I mean feeling ripping in my ovary from pushing or stretching. I mean chest pain from my HR going really high after just a minute of working hard. I mean throbbing in my head from blood not knowing how to circulate correctly while I'm working out. I mean an abnormal constriction in my neck and shoulder muscles that makes them super tight and in pain for a day or two after, like a cramp that doesn't want to be massaged out.

- Post Exertional Malaise. This is the fatigue that is the result of spending energy. For a healthy person, they might experience it for an hour or two after. They can still get stuff done if they have to, but they'll be tired and lose some motivation and focus. Their body needs to recover and they'll be fine. In my case, and the case of many people with various chronic illnesses, it's much worse. When I spend the limit of my energy or more than I have, it might take a day or two of recovery time to get back to my normal fatigued self. This means a lot more time in bed with brain fog, jello for muscles, disrupted metabolism and bathroom needs, mood issues, high heart rate with a sore achy chest, inflammation and swelling, and an inability to properly care for myself. When this is a normal response from my body, how am I supposed to work out regularly and have the ability to get stuff done? Like, having energy left to spend at my job? I have to pick and choose where my energy goes, as if my energy is money in my bank and the balance is always low.


So I do my best. What can I do?

- Walks. I feel the best results from going on walks, but the distance I can go depends greatly on how I'm feeling. 1 mile is my typical cut off point, but I have been able to go 2 miles on good days. Walking is the least taxing and most gentle way for me to move. I can move longer before my body gives out. The problem is that I live in North Dakota, so I can't be outside for half the year without a lot of weather gear on. Treadmill? I'm not getting a gym membership just to walk on the treadmill near stinky perfume-ridden people. I'm so reactive to perfume that I'll have to leave from feeling sick before I get much benefit from the gym. I've already gone this route with a YMCA membership. I also spend too much energy just getting to the gym. I'd rather just buy a treadmill for at home, but they're expensive!

- Stretching. I was in ballet and gymnastics for my entire childhood. I learned great stretches that I've continued to do my whole life. Stretching actually drains my energy rapidly. I can feel my battery depleting as I do it. But I feel like it gives me the most benefits with the least work.

- Doing short quick sets with lighter weights. I have a weight machine at home that I use, and if I do a little bit of everything over 3 to 4 minutes I can manage. It's not enough to build muscle or tone, but it allows me to use my muscles before triggering too many problems. I can feel my arms tightening up, but I can't find the energy to do enough to make them burn from building muscle.

- Tai Chi... to a certain point. I can't keep my arms lifted up long enough to stay in the poses. I like it because it works me out a lot with little effort, and it keeps me calm in the process. It isn't adrenaline-inducing. But it's physically taxing and I normally cannot make it through a sesson.

- Working on my feet for 4 hour shifts, 3 days a week. To me, going to work is my work out. I spend 3/4ths (or more) of my weekly energy at my job. I'm on my feet walking around, carrying stuff, cleaning, talking, squatting down and standing up, and just plain moving. Work leaves me feeling worn out and exhausted. I have had many many shifts where my heart physically hurts by the end. I almost always have post exertional malaise from shifts, so I'm often scheduled with a day or two between my shifts.


I want to make a special point to say that Yoga is not helpful. Why? I have POTS. Positional changes can be hard for me. Every time I try Yoga I get super dizzy, sometimes it gives me vertigo. It doesn't keep me stable while using my body.


The problem is that I still spend the majority of my time sitting or laying on my butt. It's not by choice, but by necessity. So I have a big flabby butt. The rest of my body doesn't reveal my lack of exercise that much, but my butt screams "I sit and lay too much!" I don't like it.

And that leads me to my next related issue: Clothes.

Notice how fitness and yoga clothes are the norm for women these days? Even jeans are skinny to show off our figures. Now, think of yourself as someone with chemical sensitivities that is reactive to synthetic fabrics, so you can only wear natural fibers and dyes without issues. Okay, now I want you to go shopping. Look for organic and natural clothing companies: Tasc Performance, Pact, Adventura, Synergy Organic, Toad and Co, Fisher's Finery, PrAna, Ten Tree, Groceries Apparel, Green Apple, LA Relaxed, etc. Find me some pants without added polyester that won't showcase how big my butt is. Please. And leave it in the comments when you find a pair. ;) Organic companies tend to make clothes for people who love fitness and have good bodies. Yes, they'll make sizes up to XL, but their pants (aka leggings) still tend to be tight. Almost all of these brands tailor their pants for women who do not have a curvy butt and wider hips. Maybe the problem is that I'm a size 8-10, I'm not overweight.

So I buy the pants and wear them, but I'm not happy about showing off just how out-of-shape my butt really is. I'd rather that my pants had enough thickness and structure to flatter my butt. But that's too much to ask, apparently. Carve Designs made a pair of jeans that fits my curvy figure and they're awesome, but I don't like the short inseam with the frizzy cut off bottoms. If they were full length pants I would hem them, but they're 29" - the perfect inseam length for me, so there's no room to hem.



I'm typing this post thinking about how badly I want to tone up. My mental energy wants me to go work out. My body is dizzy, feels like a brick, is sweating just sitting still in the cool air, with weak jello muscles, freezing icy cold toes, and keeps forgetting to breathe because it wants to stay still. I worked yesterday, and it was a physically demanding shift. Post exertional malaise.

Just sitting here feeling weak

It's amazing how much I can roller coaster. For the last month I've been in the very low part of the coaster. I keep thinking I'm at the bottom and I'll start going up again soon, but in the last few days I did get lower. Oi! I'm working on my second cup of black tea this morning. I woke up at 5 am and then again at 9 am with a powerful headache on the top of my neck. It wasn't that I was struggling to keep my eyes open, it was that it was physically painful to be awake. Not grogginess, just very low energy and strain in my head and eyes. There was no going back to sleep though. I have been taking naps in the afternoon the last few days as well, and I normally (95% of the time) cannot nap during the day (or even fall asleep naturally at night). I have just been overcome with heavy weakness, brain thoughts coming to a grinding halt, and an exhaustion that lulls me to sleep. It's actually nice to feel real sleepiness - I forgot what it felt like.

45 minutes ago I wouldn't have had the strength to sit at my computer and type. I'm not feeling good yet, but I'm sitting cross-legged on my chair and reclining, which is just enough to help me manage. But you know what relieved my headache? Not caffeine this time. A shower that was as hot as I could tolerate. I sat down and let the near-scalding water hit my neck. I could feel a rush of blood to my head (but I was too tired to hear Coldplay sing in my head) and the headache lifted. Then I got out of the shower and it started to come back. Then I ate some meat and it started to go away. This feels like a low blood pressure and low blood sugar kind of day, but I've been way too tired to bother to check either. I did see a doctor a few days ago and my blood pressure was something like 90/65 - I had a narrow pulse pressure. And they had my talking a lot as they took the blood pressure, so I'm sure at rest it was lower. I also had to get labs drawn and the first nurse totally gave up on me. She couldn't find a vein, so she put a hot pack on my elbow. It didn't help, and my hands remained purple and ice cold. So she got another nurse to come in. That nurse had the same problem, but she decided to just push the needle in my elbow and move it around until blood came out. Ouch, yes, that hurt. She had to go deep too.

I'm starting to give myself a stomach ache with this tea... and energy is not affected at all. All I know is I have to be ready to go to work in 1 hour and 45 minutes. Not entirely sure if my body will cooperate. I can't stand up long without POTS kicking in and making me collapse to the floor. So here's to hoping compression socks, more salt and licorice herb, more food, more caffeine, and being forced to move a lot help.

Yearly Reflections

Hello world, my old friend. It's nice to think of you again.

Today is a day in which caffeine is only increasing my heart rate and blood pressure a little, not giving me energy. Well, perhaps enough energy to type this, but certainly not enough to move. I am one giant brick. A brick with itchy hives on my back. AGAIN. Round 4 of hives. If I had to work today I am not sure if I would find the strength to manage. All I have to do today is go to Fed Ex to make a quick drop-off. It's a 3 minute drive from my house. I'm having a difficult time even imaging myself making this trip. I have learned that when I am capable of imaging myself doing a task, then it means I have enough energy to handle it at some level.

Today is News Years Eve, the ultimate day of reflection and looking forward to new beginnings. I've been really moody for a few months - like out of control at times - so I partly want to do this post in defiance of my chronic bad mood.

So I'll be blunt.

2019 did not offer any changes to advance my healing process. That's about it. I'm the same as I have been. Exhausted, in occasional pain that ranges from mild to severe, not sleeping well to sleeping too deeply, weight has stayed between 10-20 pounds higher than I'd like, and nothing I've tried has improved me. 2019 has been a year of management.

So instead, I'll go over some of the highlights for me this year:

- I bought an Instant Pot. I HIGHLY recommend it! It has been saving time and energy, and I'm making better quality foods because it does so much of the work for me.

- I got to go to a Weird Al concert that took place 5 minutes away from my house. That was super fun - and he walked right in front of me! As a friend pointed out, this is my lame claim to fame now. Ha! This was one of those "worth getting sick" experiences, and I'm only remembering how much fun I had, not how I felt.

- My husband has begun grad school to get his doctorate, which has required him to live 3 hours a way for a few days a week. It's nothing against him, but it has given me more quiet alone time at home to be fully at rest. It's been very helpful in those moments, but also has been more stressful when he is home because the chores have increased. It has been a good experiment for me. I need to learn how to rest better and exercise my limited energy better, and I have better clarity on that now.

- I took care of a new garden this summer. My husband and father-in-law built it. Unfortunately, the weather this year has been difficult. Summer never really came before winter hit early. If I consider the weather, the garden was a success. I grew herbs and veggies and was able to eat them. Not everything grew or produced, but some things did. The energy required was a little more than I had, so it meant sacrificing doing other chores like loading the dishwasher. But I enjoyed it more!

- I have been able to develop deeper friendships with a couple of my friends, and I have people I can talk to every day about anything now. I struggle a lot with friends in person, simply because of the energy it takes. I almost always feel like I'm in a competition with everyone I talk to in person, a competition of give and take of energy. But talking online to people who are similar to me in terms of health struggles is awesome. Our energy can go into only typing to each other and reading responses on our own time. It's the lowest energy required, and it's allowing me to develop the strongest friendships I've had in many years. I'm really grateful for these people!

- The more I reflect on this year, the more I realize that this year has been about supporting my husband instead of doing much for myself. He has been taking on a lot of new challenges and succeeding. I do not believe there is any shame in women thriving in their roles of being a wife and homemaker over any type of job or career. We have moved towards a society in which women are judged on success based on their careers and how much money they make. I call BS. We should be judged on how much love we put out into the world, and that doesn't have to have anything do with money. I am valuable, and I have worked hard to understand that this year.



And so, world, I will enter the new decade in several hours. Do I need a fresh start? A new beginning? Oh yes, for sure - I think? But I won't get it, and that is okay. Next year will be a good year if I continue to manage as I have this year, and I don't foresee any major changes for me coming up this year. But I do have hope for the next decade that I will learn how to do more than manage. Perhaps I'll find the energy to finish writing my book and publish it. Perhaps I'll find a way to make more money without worsening my health. Perhaps I'll find a breakthrough with my health and get to live life with more energy again. Perhaps I'll get to experience major life changes that will give me new challenges that fit my energy level. It is very very likely that we will move. Maybe to a new city or state, maybe not. But the time to live in a place of our own is coming soon. Whatever this next year and decade have in store for me are worth looking forward to, even if it's more of the same for a while!

And now I might see if I can get a ride to Fed Ex. Ha!



But first, 10 year challenge:

2009:

Happy, full of adventure and wonder, loved to explore!

2019:

Still love to explore and enjoy being myself, but with a stoic spirit and relying on someone else to help me get around. I cut my bangs back to how they were in 2009, haha. Simplicity is easier.

The Mushy Mush

I'm pure mush. Scattered unfocused thoughts, body feels and moves like jelly, highly creative dream like state with zero energy or care to apply it to anything, and a stagnated digestive system that doesn't know what it wants. I keep trying to find something to do with myself today, but after about 30 seconds of anything I turn into sludge and feel sleepy. This is PMS - it's more than just mood issues, pain, nerve issues, cravings, and acne.

I don't really like watching much TV alone because it's not interactive enough for me and I get restless, even when I'm overcome with fatigue. I like certain shows or movies when I'm watching with my husband or friends, but it's never a first choice when I'm alone. But watching Carmen Sandiego (new Netflix series) has been the only thing I've been able to enjoy today.

I don't really feel like talking to people, playing my game, sleeping, cleaning, cuddling with my pet birds, reading, working on my Spanish skills with Duolingo, sewing, drawing, listening to music... I'm just existing and being useless.

If I was forced to overcome this and go to work at a job how would I do? Well, it would require caffeine, licorice root, more adrenal complex, eating properly, and a whole lot of motivation. There's no way I'd perform well and I'd just prevent recovery by pushing myself. I'm overspent from pushing myself too hard yesterday to perform well at work. There is a point where my body will simply refuse to function well despite what I take to help it. I'd end up spacing out, forgetting things, stuttering and slurring my speech, dropping things, and finding myself unable to find mental energy problem solve.

Mush. Just pure mushy mush with stabbing pain thrown in here and here, even though occasional nerve ache in my leg.

Processing Depression Caused by Events

It's so easy to feel defeated. I've had a rough couple of weeks, and these experiences have led me to feel really depressed.

I have had several friends with severe medical emergencies and I had reason to worry for their lives. All at the same time. If one of these friends of mine does not survive it will be the second friend I will have lost to cancer. Another friend has been so sick that she became suicidal, and at times resistant to help. Of course I fought hard to help her fight for her life, but deep inside I couldn't help but wonder if I could fight if I was in her situation. Another friend ended up on life support after a car accident - that has been devastating. I also know 2 people who have had heart attacks recently. It's... overwhelming, to say the least.

And so, I decided to watch "Call Me Francis" / "Llamame Francisco" this week. I needed a true story about hardship to help me gain perspective. I also genuinely wanted to learn more about Pope Francis and Argentina. The mini-series does not educate or explain anything. It assumes you understand Argentine history fully. I had to talk to an Argentine friend of mine and do a lot of reading on my own to understand the circumstances in the story. Hours of research for 4 hours of show, but it was very enlightening. Learning about the Argentine 70's crisis with the military coup and the dictatorship was very interesting, but I don't know if I was in the right state of mind to learn about it objectively. Between the show and my research, I couldn't help but cry a lot over the kidnapping of pregnant mothers and the illegal adoption of their children. I cried when they showed the military throwing family members out of planes. Watching a story about how Padre Jorge (Pope Francis now) was actively involved in negotiating how the church helped these people was very enlightening. In the end, I learned that Argentina, while not recovered from these horrible events in the 70's, loves its people. They struggle with a terrible economy and a very high poverty rate right now, but they take care of themselves as best they can, because they actually care about offering the best quality of life that they can to their people. But I cannot help but feel shaken from learning about their recent atrocities. (No, don't tell me about other atrocities in world history to go learn about, I don't have the heart for it right now.)

I'm finding it is actually really difficult for me to read or learn about great people that live their lives well and accomplish a lot with their lives. Of course I'm extremely grateful to Pope Francis and admire him very much. (Don't let that statement get religious political - I don't care about your arguments about his church leadership right now. I'm referring to how he navigated the dire circumstances he lived through.)

But as I learn about these people I keep asking myself why I haven't figured out how to do great things with my life. Why are my years being wasted on nursing my health and entertaining myself in the process? Why are my talents and skills not getting developed so I can use them to help people in the world? A major reason is my chronic fatigue, but another major reason is my personality. I've never wanted to dedicate much time to developing skills beyond what was helpful enough to me to get tasks done, when it always felt more important to me to dedicate time to understanding people and morality. I'm one of those people who sits back and observes and reflects for years too long, and by the time I am ready to act, I find the next passion to ponder on for years too long. What do I do with all these thoughts? But how long have I really had this chronic fatigue? I might not have recognized it when I was younger because I was used to being that way, plus I'm introverted. When it caused me to be totally bedridden then I took notice. If not for the chronic fatigue, would I have done more action in my life to be more accomplished?

I'm feeling insecure. I feel like I should be doing great things despite my disability. I want to leave my mark on the world. But sometimes I can't see beyond my friends who are suffering so much. Sometimes I can't see beyond how terrible people have been throughout human history, and those who did great things for humanity make me feel like I'm not contributing to making the world better the way I should be. What is my purpose? I can't wait until I heal - what if I never do? What can I do in my current condition that won't overtax me and make me worse? I'm finding that what I am doing is overtaxing me and making me worse: I'm caring too much for people. I invest my energies into being their friends. It's not their fault, there is nothing to blame. It's just who I am. I just care. Too much. But if I make myself go numb to help me emotionally then I'll lose all sight of my purpose in life.

The USA's healthcare is a nearly complete failure for most of those with chronic illnesses. It leads people to suicide. It's way too expensive, doctors are too overworked and can't dedicate time to patients, doctors that are not trained in the illnesses try to poorly treat or dismiss us... it's a nightmare. And I'm one of those depressed chronically ill people who is feeling lost in the system. I am way better off than many people - so many people are substantially way worse than me. My disability is in the middle of the severity spectrum - I'm moderate. It significantly impacts my life, but hasn't completely stopped it. Too many people live in the severe category, in which their disability has completely prevented them from doing anything more than just staying alive minute by minute. I have the same struggles with the system, but it's not as dire for me. So trying to convince suicidal friends to use this system, because it's the only system there is, feels like I'm encouraging them to not get properly cared for so they can feel even more hopeless. It's a nightmare.

And so I have to keep reminding myself that saving the world is not my responsibility. I can't let world problems crush my spirit. At best, I need to keep my focus on my friends that I can do something for, even if it's just moral support. Being their friends, even though these major health issues, has helped me as much I hope I help them. Is it a waste of my energy? I don't think so. I might be full of grief and feeling depressed, but my heart is full of love because of them. I would feel depressed if I didn't have friends, or had friends who were healthy and so we can't relate to each other.