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