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... 

July 2024: What Happened To The Heart?

Despite what I'm about to say in this blog, I'm really grateful for the beauty that I'm surrounded by in my life. I bought this flower at a farmer's market a few weeks after moving here at this time last year, and look at it now. It's the most amazing flower I've ever grown in my life:

I'll be turning 37 in a few weeks. I still feel so young because I feel like too little has happened in my life, but I feel the weight of age on my shoulders. It's compounded by all the doomsday scenarios all over the news: climate change will cause us to fry or freeze until we're all extinct, women's health care will regress until I can't get any medical help at all, it's impossible to afford to raise children, we're running out of electricity, no one can buy homes anymore... You get the point. I feel like I missed my opportunity to live the "American Dream" before it became impossible. Now I wonder if we're all going to die soon anyway. (I doubt it and I won't plan on it, but I entertain the thoughts.)

Part of me is actually really thankful that the "American Dream" is dying, because it's a huge responsibility and not everyone is built to endure it, and it gives me relief to be able to let go of it. Those who are built to endure it are very lucky to have the opportunity to thrive in this country, and I'm incredibly grateful for them! They are the backbone of this country and I fully support their efforts. I thought I was one of those people, but now? It's only a burden of a dead dream for me now. Before I got sick I had a lot of ambition that was instilled onto me. I understood that every person had to have a career, and so I was creative about what I wanted my career to look like. I dreamed of opening my own business, being a published novel author, landing a job working for a company that was going to save the world from itself, and giving TED Talks about how ethics in business actually lead to better productivity. I was a highly idealistic and dreamy person. I was smart and I knew it, but I didn't understand my intelligence type. I fought my natural instincts in order to do the "successful person" things. Since getting sick, all that ambition is completely gone, and all that matters is the energy that arises from my natural instincts... which isn't exactly career-oriented. I'm a nurturer, and I was built to raise a family... something that's impossible to do without a two-career household these days. 

I thought getting married was the first step to doing the right thing with my life in order to live my "American Dream," so I got married very young. I thought that was going to motivate me to make money and get my life rolling. It took me a long time to figure out that I was delusional, because I was trying to do what I was supposed to instead of live according to how I naturally am. I was very ready to be completely in love and committed to a person - that wasn't the problem. I'm built to love very hard, and commitment is a huge blessing to me, not a source of fear. The problem was that I wanted to be married because I wanted a family - which is very natural, right? It killed my career instincts. Immediately I found myself putting myself aside to support my husband in all of his dreams. I stopped investing in myself. I took any job I could find, which never paid that much. I had a college degree, yes, but that never helped me earn a decent wage. I had 2 different jobs that required my degree, and both of them paid less than $10/hr. It was very clear to me that I was built to be moral support to my husband, and it was my job to help him fulfil his career dreams. And then I got sick. Goodbye Sarah and all her dreams... getting sick became my life. And you know what? I'm tired of my life being ruled by my physical abilities. 

Side story about being a slave to my body so you can understand how difficult it is for me to plan anything in my life:

We had tickets to go see a concert of a world famous jazz musician: Wynton Marsalis. We could choose between going on a Tuesday or Saturday since he was at the venue for a residency. My husband really wanted to go on the Tuesday, but I told him that was my period due date. My period is so extreme that I absolutely cannot do anything on the day of my period, but the PMS is also very intense. It's always better to schedule everything in my life for the week after my period. So I said Saturday was the better day to go. Well, Tuesday came and went and my period didn't come, although the pain was enough to make me believe it would come at any moment. But it didn't. I ended up being 6 days late, and why? It started overnight on Friday and caused me a ton of problems all Saturday morning. We had to leave by 3 pm to get to the concert on time. My husband had been calling around asking for anyone else to take my ticket and go with him, but it was too last minute and no one was able to. I made a last moment decision at 3 pm to go with him, because I was just getting past the worst and was entering the recovery phase. It meant 4 hours in the car, and somehow managing with difficult public bathrooms while there. But I was angry at my body and I was angry that money would go to waste. So I chose to go with him. I wore a dress so I could wear my overnight pad, because my menstrual cup can't contain it all, took some medication, and went with him. I delt with the poor public bathroom options. I was dizzy and wanted to lay down through the concert. But I really enjoyed the music, which lifted my spirits and helped me endure. If my period had started even an hour or two later I wouldn't have gone, so I got very lucky.  

Now I'm in South Carolina for his career... I'm not going to write freely about my entire experience here, not at this point in time. But I can say it's been highly unsettled, triggering depression like I've never known before. It's been very difficult for me to just go get any job I can, because it doesn't work that way here. I can't drive far safely - most of the time I can drive 10 minutes before I zone out too much, and there isn't much within 10 minutes. Most jobs here are manufacturing jobs, followed by fast food. Manufacturing jobs are never going to work for me because they'll never hire me part-time, and the jobs are highly physical and require more energy than I have. So many of them are essentially slave-labor too... I have been told many stories from locals here. Many of them only offer rotating shifts of 12 hour days, but the work is highly repetitive and causes repetitive stress injury. No, I can't survive in that environment in my physical condition. To be clear, it's because of the small town I'm living in. If I were in one of the cities I wouldn't be having such a problem... maybe. There's a lot of competition for jobs. South Carolina is growing rapidly. I feel extremely useless... like there's no reason to be alive. I could get into the climate, pollen, mold, poor infrastructure, and poverty issues too... I could write a lot about how inhospitable it is for my health condition, but I imagine I don't need to explain much. Extreme heat, pollen, and widespread mold problems says everything. I feel like I lost a battle with the culture of this state before I even took a swing at it. The standards of living are very low, and the expectation is that every person is able-bodied and can work like slaves. At least in the small town I'm in. Imagine me calling in sick for my period... it doesn't matter that I have endometriosis. I would get fired quickly. 

Aurora's new album, "What Happened to the Heart" has been a massive inspiration for me these past few weeks. I know I'm always sharing her music in this blog, but she always expresses what's in my heart and on my mind. It's very poetic and the themes align perfectly with all the weight on my own heart. She sings about what it means to be human in a disconnected world: tackling issues of AI, loss of independence and the desire to be free, inability to repair relationships due to selfishness, how to be remembered in a world that isn't paying attention, worshiping idols that don't love us back, and how necessary it is to love. I was already feeling all the themes very deeply, then she comes along with this album that expresses my heart perfectly. But I know we're all feeling these themes to some degree.

The Essence

In another life

Home feels like home

I've mourned you now

Longer than I've known you

As the trees cry their leaves

Vulnerable, just like me

Maybe, maybe it will be alright?

We all hurt sometimes

Maybe, maybe it will be alright?

We are running through the waves of time

And the truth can lie

In the arms of a fight

And I try, and I try

But it hurts so much

To be in touch

So I'd rather not

We make amends with the roads we cross

Like rivers flow

To be near your ground

Maybe, maybe it will be alright?

We all hurt sometimes

Maybe, maybe it will be alright?

We are running through the waves of time

And the truth can lie

In the arms of a fight

And I try, and I try

But it hurts so much

To be in touch

With the essence of us

A Soul With No King

I know you know me and you always will

Like a man with no wisdom and a soul with no king

A soul with no king, hmm

I know you fear me, your heart unfulfilled

Like a world with no mother and a home never built

But if this is what you want

Why speak of right and wrong?

You still go in for the kill

You speak of the devil

Like he's not your friend

When the world starts to burn

Give your water to him

(Call my name)

Call my name

Nothing will ever change, no guilt, no shame

Call out my name when you need me again

Nothing will ever change, no guilt, no shame

Call out my name when you need me again

If you know who I am, why won't you call my name?

Things I Do at Home

I've been spending all my energy just managing this house... Energy for blogging? Hasn't really existed, but I have the desire to share some things I've been doing. I've also been feeling the return of wrist pain, and my muscles have been really stiff in my arms. Typing isn't flowing like normal, I have to work harder to do it.

1. Grating Frozen Beef Fat:

Yes, I've discovered this trick and it works brilliantly. We bought a quarter cow last year, but the beef was unfortunately 90% lean, so we asked for beef fat to add into the burgers. I'm not a fan of lean burger because they're so dry and unpleasant, but also because the beef fat is very healthy. It fuels my poor brain!  I can write about my experience with healthy vs unhealthy fats in a later post, but beef fat is one of the best for me since I can't have dairy. Anyway, the burgers grill so much better and taste so much richer because of the beef fat! I also use it for seasoning my cast irons, and I'll cook with it occasionally. I'd use it exclusively, but it's a real (excuse me..) bitch to clean up out of my ceramic pans. I go through too many paper towels... so I use it in my cast iron pans, which I only use on the grill or in the oven. 

What I do is.... well, look at the photos:

Yep, I grate that block of FROZEN beef fat like it's cheese. The shavings are light as air, and they do not get sticky as long as they stay frozen. So they key here is to grate it frozen, then put it in the freezer for storage. As long as it's FROZEN it is very easy to work with. 

Cleaning up isn't as terrible as it looks as long as the shavings are still cold. I like to rub it on my skin as a lotion! 

2. Car Wash, Naturally! 

South Carolina pollen is INSANE, so it seems pointless to wash my car, right? But all the bugs and spiders that love to live in my car need to go away. Normal people would drive through an automatic car wash, but I'm really not a fan of them. They can cause damage, they're horrible for the environment, and the soap stinks. So if I can do it at home with fragrance-free soap, why wouldn't I? All I'm missing is a power washer... that would save me a lot of strength and energy. I just used the hose, a giant sponge, and this fragrance-free plant-based car wash:

My car is black, not yellow (pollen)!! Who would have known? This soap worked really well. It's very concentrated, lathered very well, and didn't leave the worst sunspots I've ever seen. The best part? NO SMELL. I bought it on Amazon (click this sentence.) 

Guess how many spiders I found on my car while I washed it? 3... shudder... thankfully I have never seen one inside my car, but they sure love to build webs all over the outside. It's totally unacceptable. 

3. Making Popsicles

Normally I don't like ice in my water, or even cold water. I always drink room temperature or hot liquids. Cold "hurts" my stomach, if that makes sense. It feels like it puts out the fire in my stomach, and I need that fire. That said... It's SO HOT HERE. After I've been outside for a while, especially for a walk, I'm usually sweating and really need to cool down or I'll pass out. So instead of reaching for coconut ice cream (Cosmic Bliss...mmmm....)... I decided to make these instead. 

The pink ones are Ultima Electrolytes in water. It didn't work very well. The powder settled to the bottom of the mold, and I ended up with half of it being a very lightly flavored ice cube. No bueno.

 
The white ones were supposed to be more like an ice cream replacement, and they were pretty good. I used coconut milk, allulose, vanilla, and ground orange peel. I didn't measure, sorry. I kept adding and mixing to taste. I think I watered down the coconut milk too much because it was like licking an ice cube, but the flavor was good! 

4. Sticky Bug Traps! 

I bought them and tried them... and I'm happy to report that these work!! Living in SC means waging a constant battle against bugs, and I refuse to spray pesticides inside the house. I won't argue why in this post - I shouldn't have to explain why I don't want a neurotoxin around my pet birds and I. 

The Max-Catch slides under countertops, the cockroaches get stuck on them, and they can't get off. Brilliant! 

The Safter Plug-In is really effective for all the small flies. It emits a blue UV light that attracts the flies, and then they land on it and can't get off. Brilliant! 

I do see dead roaches, and I have to assume it's because they ate the boric acid tablets I put around the house. I have to assume boric acid works too. I put a layer of diatomaceous earth around the house too, and I've seen lots of dead ants in it.   

Okay, that's all for not folks. More to come in future posts. My hands hurt and I'm way too tired. 

Where You Live Matters: ND to SC Move Reflections on my Health

Before moving to South Carolina, I had a lot of stability I took for granted while living in North Dakota. I've lost quite a bit of my health here, and I want to write about what was working for me in ND that I don't have here. I'm hoping my insights can help others find ways to live their best lives in their current situations too. 




1. I had security

I'm listing this first because I think it's foundational. It's extremely difficult to work on health when you're feeling insecure about your home, finances, food, and paying the bills. I lost that security when moving to SC, because our finances and tighter and rent for a decent home is way too expensive. We found a house to rent, but we're questioning if we need to move to the bigger city so that I have access to jobs, healthcare, and food. It's hard for me to unpack and feel at home when it won't be long-term, which makes me feel unsettled. Also, this house is simply not in good condition compared to where I was living in ND, and it causes me some insecurities because I'm not used to worrying about the problems of a house this old. 

In North Dakota we lived in my parent's house while they couldn't live in it, so I never had to worry about losing the home if our finances were not good that month. The house was not perfect, but it was very comfortable and in good condition. Our finances were not great there (which is why my husband needed to find a job elsewhere), but I had no reason to worry about being unable to afford what we really needed. 

The stress of living paycheck to paycheck, reducing standards to make ends meet, being unable to purchase much food that works on my diet nearby, being unable to afford doctors and medical care, living with a higher crime rate than I've ever had to worry about before, and living in a place where traffic accidents and death are very high are all very destabilizing for me. I have a lot of reasons to feel stress here. And stress = illness. 





2. Everything I needed was within a 20 minute drive

Bismarck was a basic medium-sized city of around 80k. It didn't have many amenities of larger cities, and it was a 7 hour drive from any larger city (Fargo was 3 hours away, but Fargo doesn't have much.) It did, however, have enough within a short driving distance. This is very important because it's difficult for me to drive far, and I only drive when I'm feeling strong enough and capable enough. I found a job that worked with my health abilities only 7 minutes away from home. I had access to organic food at my job and through two other stores that were 5 minutes away from home (one was a Natural Grocers, which provided the largest selection.) I had access to a phenomenal acupuncturist only a 12 minute drive away. I had access to MDs as needed, only a 7 minute drive away. I had a walking trail behind my house, so no need to drive to it. I had access to 2 restaurants that made meals I could eat on my diet, both within a 7 minute drive. I had access to the best regenerative beef money could buy through my job and they delivered to a location 5 minutes away from my house. Seriously - everything I needed to live comfortably was close. (Now I did have to travel for specialized medical care - but that's normal for most people.) 

Here in Gaffney, SC... I don't have any of that. I can't find a job that works with my needs. There are 3 grocery store options, and 2 of them don't offer much I can eat. The 3rd is Aldi, which is good on my budget when they have things worth buying, but they don't sell everything I need. I can't rely on them. The farmer's market here is tiny, so while I can buy some things there, I can't rely on to meet my needs. There are no acupuncturists in this town, but if I drive 35 minutes north there's a phenomenal acupuncturist. The problem is he's out of my budget and I can't always safely drive 35 minutes at a time. I typically don't do well driving longer than 15 minutes at a time, unless it's a good day and I took the right pills first. There really aren't any restaurants here that make safe food for me - I can get away with eating at 2 places, but I have to cheat on my diet to eat the meals that are mostly safe. As for medical care? I haven't used the local hospital here, but it's a very small town. 

What this means is that I can't be independent here. My husband has to drive us to the bigger city once a week to go buy food, and the grocery options aren't great either. We found a Fresh Market (holy expensive prices, Batman!) and a Publix (better than anything in Gaffney) within a 35 minute drive of home. The farmer's market was great in the summer, but that doesn't help me in the winter. Fresh Market does sell a lot of things I can eat on my diet, but sheesh, it's going to bankrupt me to shop there. (Numi organic deli meat is $8/pack at Earth Fare, and it's $10.99/ pack at Fresh Market.... I mean, seriously... and all their food is marked up like that.) It's honestly better to drive 1 hour away from home to get to an Earth Fare and Whole Foods, both of which are cheaper (even considering the gas to drive there.) Yes, Whole Foods is cheaper - not joking. Actually Whole Foods isn't that expensive, it's just easy to spend your whole paycheck there because they have so much worth buying! Anyway... I'm alone and isolated here Gaffney, totally reliant on my husband to be able to help me get what we need. 




3. I had a job - a GOOD job 

This one is HUGE. I think I knew it while I was living there and working, but I don't think I realized the full extent of how helpful it was for me. I had a job working in a place that aligned with my needs, values, world view, and health. It paid me some money, even though I couldn't work many hours. Most importantly, it gave me a sense of purpose. I felt like, despite my poor health and inability to do much, it allowed me to feel like I was contributing to society and a better world. It gave meaning to my life. It gave me a community to be part of. It helped me socialize. It allowed me to spend my limited energy in a useful way. These things were super important. SUPER IMPORTANT. 

Being unable to find a job that works with my needs is a huge punch to the gut here. It has caused me a lot of insecurities, depression, despair, and feelings of worthlessness. Poor emotional health makes it very difficult to manage physical health. I lost a lot by moving here. 

I worked for Terry's Health Products in Bismarck. Check them out and support them! Such an amazing small local business, and they will ship! 

4. Family

My family moved back to North Dakota. My husband's family is all in North Dakota. Having family nearby is very important. Family gives community, connection, support, love, hope... family is everything. 

Suddenly being far from family is... lonely. It feels a little like death, in a way. Sure, we have phones, but it's not the same as living nearby and experiencing the same life. 

Mom is so good to me, and so awesome!

5. North Dakota was not as moldy as South Carolina

Mold is a way of life here. It's everywhere I go. The humidity is high, it rains a lot, buildings are old and in poor condition, people aren't educated enough to realize it's a health problem, and the soil itself is moldy. I'm allergic to mold. In fact, mold is one of my root causes of my all health issues (the other was H1N1/ Swine Flu.) I'm literally living a place that's poisonous to me. 

North Dakota weather could lead to mold damage in buildings and homes. Summer humidity could be high, though not as high as here. Excess snow could lead to moisture damage in buildings not prepared for it. The house I was living in did have external mold problems that had to be remediated. I had a mold scare there, but it wasn't as severe as anything here. Not everywhere was moldy in ND. Here pretty much everywhere I go is moldy. 

Kindling Health: Source of Mold - My Reaction (kindlingheatlh.blogspot.com)

6. North Dakota allergens were nothing compared to South Carolina allergens

Okay so I did have some allergy issues in North Dakota - it's an agricultural state that grows a lot of corn and wheat, and I'm allergic to both. That wasn't a problem in the city though. There were a few trees and grasses there that caused me some allergies, but overall I was able to get a handle on my allergies there. Actually it wasn't much of an issue in the last few years. My naturopathic doctor helped me a lot, and my lifestyle changes meant I reacted a lot less to allergens. 

But South Carolina? Wow. The thick yellow layer of pollen on everything was really intense for me. Add that to high humidity, high heat, and bugs EVERYWHERE. So. Many. Bugs. I'm honestly not looking forward to my first spring here... I hate dealing with the bloody noses, excess congestion, itchy eyes, cough and sore throat, hives and rashes... 

Wait, what?: Sept. 12, 2013 (waitwaitwhatwhat.blogspot.com)


7. I had to learn a new place, and the learning curve is exhausting 

When you have ME/CFS, it's really important not to create new stress. I learned Bismarck, and I was able to keep up with changes there. Learning this new town, new region, and new state has been really tiring for me. The little things add up and cause big problems in ME/CFS: poor sense of direction leads to confusion and inability to learn streets, not being able to remember where something was, trying to remember names of all these things places, and so on. Poor cognitive function and memory is a hallmark of ME/CFS - I do a lot better remembering old information than I do retaining new information. I need to invest time into understanding new information, and I need to read about it a lot over time until it becomes solid in my brain. So I just need time to learn this place... 

And then there's learning the culture - the big picture, and all the smaller communities. Gaffney itself is considered "Deep South," which is a culture, not a location. The big towns nearby are not "Deep South," and there's quite an obvious cultural difference. A lot of it makes sense, and a lot of it is new to me... and learning how people here think has been a mental exercise for me. 

Moving to a place where people hit your mailbox with a baseball bat while they drive by. They throw their beer and soda cans into your yard as they drive by. There are no laws against smoking anywhere outside. There's no regulations on the types of vehicles that can drive on roads. It's.... an adjustment. I will never take for granted when people respect each other...