Entering 2026!

Out with the old year, in the with the new year!

The view outside my window Christmas day. The fog froze to the trees! So pretty.

But first, I'm sure that Facebook and Google collaborate to manage my Facebook feed for me. I told my Oura Ring, Clue App, and Fitbit that my period started. Now 50% of my feed is about endometriosis! It's not necessarily a bad thing, right? I get to learn all sorts of facts from surgeons and doctors making reels about it. But there really is no such thing as health privacy anymore. While I heavily rely on these apps to help me understand what is just PMS versus a sign that I'm actually about to start bleeding (therefore be sick in bed for most of a day), I also know that I'm a data mine that I'm paying to contribute to. I pick and choose my battles with technology. Do you all think it's worth using technology to monitor your health, knowing it's never going to be private? Oura probably helps me the most, but Clue's tracking is the best. Fitbit is almost useless, but I do it anyway. 

I should write an updated blog about my Oura Ring, since it's changed a lot over the years with all their updates. I do find it very helpful in some ways, and less helpful now in other ways.

It's the last day of 2025! I woke up in 2025 in Gaffney, South Carolina. In the middle of the year I said goodbye to the South. I will wake up tomorrow (2026) morning in Bismarck, North Dakota. 

Some observations from 2025:

❄ I feel less symptomatic in the cold weather. I know it seems backwards, because my body runs cold from poor circulation, but the heat triggers more symptoms for me. I can always warm up when it's cold. I can sit in front of the fireplace cuddling with a blanket. I can wear a big snuggly hoodie. I can drink hot tea. I can use my sauna or sit in the bath. When it's hot and humid, how do I cool down? I sweat very easily with pins and needles prickles all over my body from the heat, and my heart races like crazy. I sweat just from standing up and my heart starting to race. Cold water triggers symptoms for me, unlike warm water. Removing clothes makes me too cold from the temperature change, which causes my nerves to ache. The cold weather might make me shiver, but I can manage it. I can't manage heat. 

✌ The people I spend my days with have a HUGE impact on how I feel. This actually has more to do with me than them. I tend to unconsciously adjust my personality according to the people I'm around, but I also spend energy keeping a shield up to protect myself from energy I can't handle. Some people are full of anxiety, frantic high-strung vibrations, contagious depression, anger that poisons their every action, and other vibrations that I can feel, even if they don't say it. Negative energy tends to feed on my attention, which requires my energy and strength. I don't want to absorb the vibrations, but I do. I'm built that way. If I shield myself, I drain myself anyway. So it's extremely important for me to choose to be around people who are peaceful, respectful, loving, have good vibrations, and lift everyone around them. Choosing to be alone can be the healthiest thing for me too. I'm introverted, so I need that recovery time regardless of my chronic illnesses. But the right people don't drain me. The right people can help me live and enjoy being who I am, even when I'm in pain or feeling unwell. I have to choose my people very carefully. 

(I'm not saying that people are bad because I don't tolerate their energy well, and I'm not saying that people going through tough times are bad for me. It's all about how well a person can manage their emotions, because unmanaged emotions are what leak out and affect people around them. When a person who understands how to love and respect others is grieving or in pain, their energy doesn't sour and drain me. When someone hasn't worked on their emotional intelligence and is still emotionally immature, they tend to drain me no matter what their life experience is in the moment - it's not because they're bad, it's because I don't have the energy to be what they need me to be to support them.)

💸 The better I feel, the more of a sucker I am for advertisements for things I might be interested in buying. The worse I feel in the moment, the less I care. The internet is a dangerous place for me to be when I'm feeling some mental energy, because I will not use my energy well online. I might not actually buy anything, but I will window shop every sale and seriously consider some items. Then I regret spending my usable energy for the day that way. Totally wasted on being a sucker for social media ads. It's actually a big reason why I'm using Facebook less. I spend time in specific groups on Facebook, but I'm avoiding scrolling my newsfeed now. I do want to know about local businesses and events, but not at the cost at seeing loads of ads and celebrity gossip that I didn't ask for. So therefore, when I'm feeling well enough, I prefer to skip social media and go straight into gaming. If I'm going to spend my energy at my computer, gaming feels way better. If I feel well enough to do something more than sit at my computer, then I should actually physically do something like use the treadmill or clean or cook or fix something, or socialize. I've had more energy available to do things like this since moving back to ND! 

🎶 I love specific music at specific times, but silence is actually my favorite for regulating my nerves. Music stimulates or blocks my senses, which can be really helpful at times, especially while driving or cleaning. But the best way to preserve my energy is to be in silence, without the need to feel alert. I can't recover well unless I'm in silence. I used to use ambient music to help me rest, but mainly I did that to block out everything else I could hear so I could dull my senses. Silence is better. This isn't a negative comment about my husband, but it is just a fact: he always needed something playing in the background. Music, TV, radio, podcast, just anything to focus on. That was fine for him, but I needed a lot more silence in my life. I can get that here in ND.

🐔 I really loved my pet birds. I had 2 cockatiels (that's why I chose the chicken emoji, ha!) One was at least 30 years old, and I've had him since I was 7 years old. The other was 12 years old and she bonded to me. I had to give them to a new home (I don't want to explain, but I had no choice.) I loved them so much. But they were a lot of work, and I often didn't have the energy to take care of them properly. I felt a lot of guilt about how little attention and care I gave them sometimes. As much as it broke my heart to give them to a new home, I also felt some relief. They went to a home where they get more attention. I don't have to drain myself on cleaning their cages, which was a big ordeal! I don't have to run to them every time they call for help. I don't have to be on alert 24/7 for their sakes. I am my only responsibility now. Right now, this is therapeutic. I'm getting to have a break. Please understand that birds are like 3 year olds that never grow up, and I've been caring for them my entire life. They're not like children who have needs that evolve over the years. I'm happily accepting the rest from the responsibility right now. I lost my ability to be alert. I'm burned out. I do know that I'm going to be deeply sad about losing them once I recover though. I don't want a new pet as a rebound... I want a family. I want a husband and children. That's another story. I'm choosing not to feel guilty. My birds are with a good family now, and I'm where I need to be to heal. 

🛣 So many people say it's brave to choose to leave my marriage. I've been reflecting on that a lot, because I don't know if "brave" is the right adjective for me. He wasn't abusive, bad, mean, or anything of that nature. I wasn't completely dependent on him, because I was always able to come home to my parents, which is a great situation (not a last resort like for many people.) It wasn't brave, it was simply just difficult to leave because it required effort. It was easier to stay because it was familiar, and we didn't have problems getting along on a day-to-day basis because we're both nice people-pleasers. But South Carolina taught me that it wasn't actually easier to stay. He said my illness was like the 3rd person in the marriage, but I think his career was the 4th person in the marriage. His career was most important to him, and his career was not easy for me because it meant a lot of instability, uncertainty, and unnecessary stress. It costs a lot of money to move - SO much money. His career isn't stable enough and doesn't pay enough, so the risk of moving for jobs often is too high. He was sad that I didn't make more money than him so that he could afford his career, but the reality is that he always wanted a job that would require relocating to places that I didn't necessarily want to live. A job that is fading away with budget cuts. I couldn't continue living in a high-stress situation just so he could live out his dream, which wasn't my dream. I wanted him to be happy, but I wasn't, because I was only along for the rocky ride. Even if he switched careers, I knew I would be along for a very stressful and uncertain ride. It wasn't brave of me to leave, it was mostly just practical. I needed to realign myself with my own values, goals, and needs. And so as I enter into 2026, I look forward to planning for my own future!

🎇 So as I enter into 2026, I'm choosing gratitude. I'm not entering into the new year with fear, uncertainty, bad vibes, depression, anger, resentment, or anything negative. It's all in the past. This is my fresh start. The future isn't something to fear. The future doesn't need my past baggage. I'm hopeful! 

Another thought... 

As I read through what I wrote, I realize that I might sound neurodivergent. I talk a lot about stimulation, feeling alert, and trying to maintain calm nerves. I have never been tested for neurodivergence, but I've seen the changes in myself from before and after getting sick and know that this illness caused these sensory issues. I wasn't like this until I caught H1N1 in 2012. I've had to do a lot of work on myself over the years to tolerate sensory issues better. In the first few years, lights, noises, textures, temperature changes, and everything sensory really bothered me. Sometimes noises and changes in lights were really painful. I'm not as fatigued now as I was back then, and I have a higher tolerance now, but sensory issues can still trigger some pain for me. My primary issue now is that I'm always feeling "alert" and I need to be able to stop sensing everything so my nerves can calm down. It might be psychological - a defense mechanism, maybe. But I do know that my need to feel "alert" isn't within my control, and when something "alerts" me I get a lot of nerve pain and waves of freezing cold through my body. It's something I hope will calm down with time, now that I've parted ways with the majority of the stress in my life. 

Eivor - Let It Come

Sometimes

I overthink the most simple things

I go blind

I don't see the solutions in front of me

But today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

I can feel it moving

This time, I'm ready for it

It's time

To trust the voice in me

Synchronize

Every part of me to this moment

Today, the sky looks different

And I am wide awake, my heart is quivering

(Let it come, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Bring it on, bring it on)

(Let it come, bring it on)

There is something in the air, it's liberating

I can feel it moving

This time, it's coming for me

Something I've been waiting for, I can't explain it

But I know I'm changing

This time, I'm ready for it

Ready for it

This time, I'm ready

Let it come, bring it on

I Finally Caught Covid...

Hurricane Helene... then... Went to Washington DC, and then COVID happened... Yes, I finally caught the dreaded covid. I'm on day 12 of dealing with it right now. I'm going to skip talking about Helene in this post, but it was bad here.

Anyone who knows me knows I thought I was immune to covid, and maybe I was up until now. I never caught it during the pandemic, and I thought it was because of my blood type or genetics or something. They also know that I was afraid to catch covid because it is known to cause POTS, which I already have and I absolutely do not want to make it worse. So when I tested positive I was naturally very scared. Turns out covid has mutated enough, so if I had any naturally immunity before, covid learned how to bypass it. 

Let me back up. Why did I go to Washington DC? My husband was invited to present at a conference in West Virginia, and we decided to stay with a friend who lives in DC so that we could see DC since it was so close. This is how he is. His ambition is so strong that he doesn't expect (or he simply ignores) the reality of his plans to fulfil his ambitions. I'll say a few things about the trip to help you understand my exhaustion: 

It was supposed to be a 6.5 hour drive to DC. That's like driving from Bismarck, ND to Minneapolis, MN, which we did several times. Except that on the east coast you should always add a couple of hours to driving time due to traffic. About 8.5 hours later, after a lot of stop-and-go on the interstate and the need to exit the interstate and drive through towns to avoid crashes on the interstate, we arrived in Harper's Ferry, WV. We stayed in a great little mostly fragrance-free Airbnb. The next morning we wanted to spend 1 or 2 hours being tourists and seeing the sights of this tourist town, but what we quickly discovered was that it was impossible to park anywhere near the attractions unless we paid $20, and we were not going to be there long enough. Also, he was in his dress suit. So we drove through the town, and later a friend told us we honestly saw it all just by driving through, so I don't feel so badly. It was quaint, but just a historical village with a good view of the rivers. 

So we drove to Sheppardstown, WV and I dropped him off at the college where he was presenting. I took my licorice pills with enough green tea that I felt strong enough to go exploring a little on my own. Well, I tried to follow GPS to a park along the river and I ended up going over the bridge and into Maryland. Then I made my way back and had lunch, then went shopping downtown. It was a cute downtown with an herbal shop, a sustainable living farm store, a really cool bookstore, a natural fiber only women's clothing store, a small new apothecary that focused on soaps and salves, a fantasy figurine store... lots of really interesting places. But after all that I was tired, and it was time to go pick up the husband. The trouble was that the husband was feeling sick and not well enough to drive, so I needed to drive us most of the way to DC. He was thankfully able to finish the drive. It was supposed to be 1.5 hours, but it took us about 2. We arrived at the restaurant and met our friends, had a great meal, explored Alexandria and found grass-fed organic gelato, then went back to their place for the night. 

I was too overly stimulated from doing too much, so it was hard to sleep well. My husband slept maybe 2 hours, but he has insomnia issues. But this day was the big DC day! This was the day we needed our energy for! 

Thankfully our friend works in DC, knows how to get around, and was our tour guide. He drove us everywhere (except the two times we needed an uber) and saved us A TON of time and energy. We toured the US Capital building, went to the Library of Congress, went to the Smithsonian Natural History and American History Museums, went to the monument, went to the Cheesecake Factory, went to the Vietnam and Korean war memorials, went to the Abe Lincoln memorial, and then went to the Thomas Jefferson memorial. We arrived back at 11 pm, totally exhausted. I think my experience of this day deserves a blog post because I felt like I was on a pilgrimage and I felt really enlightened by many things I saw. The problem with this day was that I was around so many people from all over the world - the crowds of people (especially in the Natural History Museum) were so thick that it was almost intolerable because it was hard to see much through all the people. 

So you can image all the opportunities I had to catch covid, on top of being worn out and exhausted. And weak from reacting to fragrances and fumes.  

Sunday, the drive home. I woke up with a strong sore throat, but I thought it was just my ME/CFS and I was crashing. I wasn't well. I barely had the energy to load the car with my things. We went out to breakfast and I was able to eat well. I chose to drink coffee knowing I needed the push to help me survive the day. Coffee normally affects me badly because it's too strong and hurts my heart... this barely did much for me. We drove for a while and arrived at Whole Foods midway through the day. I should have been really hungry, but my stomach did not want food. I bought a super light meal of fish and force fed myself, but my throat hurt and my stomach was not happy. Okay, I still thought it's just ME/CFS. Shopping was annoying and difficult. I didn't have it in me to think through much, but we had to buy groceries to stock our fridge with. (Hurricane Helene caused a lot damage and made grocery shopping a major difficulty, so we had to shop in Charlotte the week prior and then chose to shop out-of-town again on the way home.)

We get home, and Monday and Tuesday I felt sick with a sore throat. I wasn't well, but I kept thinking it was just a sore throat and cough from ME/CFS. I went to work at my new job (this will be another new post) on Wednesday, but I wasn't ok. If it were any other job I would have called in sick, but this is a new start-up business with very very few customers so far, so I sat there for 5 hours without talking to anyone. While I was at work I started to get body aches and a fever developed. I was so uncomfortable that I realized it was worse than my normal "feeling sick with ME/CFS" crap. So after work I bought a Covid test kit. Within a few minutes the kit showed a strong line for Covid. After 15 minutes the line was even stronger. 

My symptoms were out of order. I started with the sore throat and cough for 3 days, then developed the body aches and fever (stayed around 100.5, didn't get hotter) for 2 days, then I finally developed the congestion and "head cold" stage which has lasted 7 days so far. I'm still sick right now, but it's just manageable congestion now. I wasn't able to sleep without taking this (it's a clean version of Nyquil made by Genexa) because otherwise it wasn't possible to breathe and my coughing wouldn't stop.  I lost my sense of smell and taste, but not completely. I could taste 20-30% of anything I ate, and mainly just the bitter parts. I had a burger patty and I could only detect the texture of it, I really couldn't taste it. I had horseradish to try and drain my sinuses, and I could feel the heat but I couldn't taste it. I haven't really experienced that before, so it was alarming. 

Covid wasn't as intense as other illnesses I had (H1N1 that caused my POTS is still the worst I've had), but one thing it did do to me that I have not experienced from other illnesses was keep my heart rate up over 100 bpm for 3 days straight. Even at night, my heart rate remained high. My Fitbit and Oura Ring were both giving me a lot of warnings of tachycardia while at rest. This was abnormal for me, even with POTS. I'm used to my HR going down to the 80's while I'm resting, or even crashing low into 50's when I put my feet up. When I'm on my feet I'm usually above 100, yes, but not at rest. So this showed me how hard my body was working to fight Covid, and it does give me some concern. 

My high heart rate was why I wanted to see a doctor for a saline IV. The problem was, Hurricane Helene destroyed the plant in North Carolina that makes the IVs. So the doctors said no, the best thing I can do is drink electrolytes and stay home and rest. 

I got covid really quickly. My husband, on the other hand, didn't develop covid symptoms until 5 days after I started having symptoms. He progressed through it faster than I did. It only knocked him out for 6 days, and I'm on day 12 still with symptoms. 

It's too early to tell how covid is going to affect me long-term. I'm weak and exhausted, I still can't taste much, and I'm still symptomatic. 

Health Requires a Moral Compass to Achieve

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

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

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

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

Put it in the sun for several hours. 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Inhaler - If You're Gonna Break My Heart 

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

We woke up faded

From the shape of the night

Couldn't find the words

Couldn't find the light

We got caught in the tide

And the shore was on the other side

There's no other way around up or down

When the sun shines on my insides

If you're gonna break my heart

Smash it to pieces

'Cause I'm not gonna need it

As much as I do right now

Right now, ooh

I showed you mercy

You gave me murder

I got your ten tonne monkey

Jumpin' up on my back

We got caught in the ride

Of bein' young and alive

There's no other way around up or down

But some nights, yeah, that's alright

If you're gonna break my heart

Smash it to pieces

'Cause I'm not gonna need it

As much as I do right now

Say what you're gonna say anyway

Nothing really means as much as you do

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

Waitin' for you

One Year and 2 Months Since Moving Here Update

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

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

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

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

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

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

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

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

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

Far Infrared Sauna: Why I Use One Regularly

I honestly can't believe that in 10 years of owning this thing that I haven't written a post about how helpful it is for me... I think it just proves that I do A LOT and I can't really keep track of it all to write about it! 

My super duper cheapo portable Far Infrared Sauna! (As opposed to the $1,000+ ones...)

I bought it for about $179 on Amazon about 10 years ago. I'm still using it. I just used it today. I told you, I'm all about buying things that last! Although I had no idea if this would when I bought it, ha!

And look, despite CRAZY inflation, it's only gone up to $219 in 10 years! Ha! They're still making it too, so I think I made a good choice:

 Amazon.com : Infrared FAR IR Negative Ion Portable Indoor Personal Spa Sauna by Durherm with Air Ionizer, Heating Foot Pad and Chair, 30 Minutes Timer, Large, Silver : Patio, Lawn & Garden

First, let me acknowledge the elephant in the room, which was something I didn't know about at the time of purchase:

EMFs. I have no idea what kind of EMFs this sauna emits, and I recognize that they are a problem with infrared saunas in general. If you're sensitive and must avoid them, you will probably need to invest in a much more expensive brand that verifies low EMFs from their products. I know there are sauna companies out there, but I have zero experience with them and I'm the wrong person to ask. 

I'm not real clear on if EMFs affect me... maybe they're the reason I zone out so much indoors, but feel way more awake and alert when I'm up in the mountains in national parks. What I can say is that I don't feel worse from using my sauna regularly. 

I got started with using saunas because of my Naturopathic Doctor, who is the reason I recovered some of my health. He has a really high quality far infrared sauna in his clinic, and he had me using it regularly as part of my treatments. It was really difficult to endure. I was so sick that the energy it took to survive that thing still haunts me. I remember my heart pumping into my throat, the sweat flowing like waterfalls, my vision going in and out... it was tough. But the more I used it, the more I was able to endure it, and the better I felt after each session. I was comfortable with the process because I trusted my doctor, and his nurses were monitoring me. 

I was living in North Dakota, and my doctor was in New Hampshire. I wanted an option to use at home. So, on a whim, and with encouragement from my dad, I bought this one. It's not as effective as my doctor's, but it has the same effect if I stay in it long enough. I sweat waterfalls, my heart rate goes sky high, and I'm left feeling completely exhausted after. Yeah, it does the job I want it to do. 

Yes, it does seem crazy for someone with ME/CFS and POTS to be using a sauna. I am only sharing my experience, and I am NOT recommending all my readers do this. Remember, these blog posts are NOT medical advice. In fact, I would probably work with your doctor before using a sauna, because there are definitely some potential risks. I do not use my sauna when I don't feel strong enough to tolerate it - in fact I usually take all my pills and drink some caffeine first to stabilize myself the best I can. I don't use it on days when I have something to do. I only do it on days when I know I can rest and recover. It can trigger my PEM (post exertional malaise) when I don't time out when and how I use the sauna, but the PEM it causes is so much more peaceful than a typical crash and I recover faster from it. 

Here's the benefits for me, personally:

- Clears up hives and rashes on my skin
- Helps my blood flow to every part of my body (it's like a miracle!)
- It takes away my shakes, jitters, and itches and lets me rest calmly afterwords
- I sleep more deeply and peacefully when I use it regularly
- My digestion and metabolism is improved when I use it regularly
- It reduces my muscle pain and cramping, probably because it gets blood to my muscles
- I feel more stable and stronger when I use it regularly, with fewer POTS episodes 
- It helps manage my weight a little
- My vision seems to be sharper after I use it
- I feel more resilient to changes or stress when I use it regularly 
- My reactions to allergens and chemicals are reduced when I use it regularly
- I just feel better... yes, it leaves me tired, but I feel more calm and at peace. 

And here's some articles and studies on Far Infrared Saunas for you skeptics:

sauna-webinar (drbenlynch.com)

Far-infrared saunas for treatment of cardiovascular risk factors - PMC (nih.gov)

Far-infrared therapy for cardiovascular, autoimmune, and other chronic health problems: A systematic review - PMC (nih.gov)

I like to lay a thick towel on the bottom to collect my sweat. I fold another thick towel into a soft seat to sit on. I've found that I do not like to sit on the chair and poke my head out the top. I greatly prefer to sit on the bottom cross legged, completely enclosed. It's easier for me to endure this way, and I feel the whole effect on my whole body instead of keeping my head cool.  I keep another towel or two in there to use to wipe my face regularly. 

They say it's safe to use a phone inside it, so I do... but it does get hot. I like to keep it on the bottom front (it's a lot cooler down there because the heating plates are only in the upper back) and watch something on my phone while I use it. I need something to focus on while I'm dying from the high heart rate. I also bring a water bottle full of electrolyte water in with me. I use a stainless steel bottle, not plastic. I also like Ultima Electrolytes because they're sugar-free, but effective. 

I always try to manage for 45 minutes (typical for a dry sauna, not for a wet sauna,) but somedays I really can't. I just stay in as long as I can tolerate it. Once I'm done, I wipe as much sweat as I can off of me with a towel while I'm recovering. You don't want your skin to let the sweat soak back in, so you want to dry yourself as quickly as possible. Once I'm able to walk into the shower, I take a hot shower. Not cold. I don't want my body to cool down. I want to keep that blood moving well. But, me being the way I am, I typically sit during the shower so I don't fall over and hit my head and kill myself. 

In a good session I SWEAT. I sweat so much it's hard to keep it from dripping into my eyes! It's amazing! I remember when I first started to use the sauna it would cause me to break out with acne... but that doesn't happen anymore since using it regularly. I think I'm keeping my pores clear this way.

Side note... I've had times when I can't sweat in the sauna, and other times when I sweat waterfalls. Not being able to sweat can be a sign of dehydration. It can also be a symptom of dysautonomia, when the nerves don't signal instructions to do things like sweat (or breath, or digest, or pump blood... isn't dysautonomia fun?) In my experience (again, NOT medical advice!) when I can't sweat I still get the benefits of pushing blood in my body. It still helps. But I also notice that I'm WAY more tired after. I had an episode once when I couldn't stand up to get from the sauna to the shower, so I crawled into it and laid down in the bottom of the tub until I was able to turn the water on and just take a bath. That was kind of scary... so since then, if I'm unable to sweat in the sauna after 15 minutes, I don't continue. I stop and get out before I hurt myself. 


THE ONLY CON about this particular sauna:
 
The zippers are made of metal, and they get REALLY hot. I can burn my skin on them. The zipper... what do you even call it, the part of the zipper you grab to use it? The tag? The handle? That part hangs down on all 3 and I have to be careful not to let it touch my forehead. The main big zipper handle can be tucked away in the Velcro that seals the top, so that won't bother me. It's the two zippers for the arms that can burn me if I'm not careful. 

So, I'm not trying to sell you on this exact sauna... there are probably better choices. But, I can tell you that it's been reliable for me for 10 years! 


UPDATE

It's the next day, 24 hours since I finished using my sauna. I'm struggling to move much today. I'm so tired my eyes are zoning out on me frequently. I can move as long as I keep moving, but if I sit down then I can't get back up. I go frozen. It's hard to move. I'll recover... but it's worth it to me because it's helping combat my allergies (it's spring it the south, there's layers of yellow pollen on everything.)

Tom Odell - Heal (Live )

Emiliana Torrini - Let's Keep Dancing

Common Advice and Why It's Bad Advice for ME/CFS

Advice that doesn't make sense for people with ME/CFS, POTS, Fibromyalgia, and other energy-deficient diseases. Yikes. 

Before we begin, please understand that I'm saying this as a person with moderate and NOT severe ME/CFS. Severe ME/CFS is a different issue as they lose all independence. I'm about 70% housebound these days. I can run out and do short quick errands during my good hours. I can work a few hours a week. I can manage some chores most days. At my best, I get about 3 to 4 usable hours of energy each day. At my worst, I'm in bed most of the day (and I have 2-3 days like this most months.) 

And so... for the BAD ADVICE:

Food Prepping

A hallmark of ME/CFS is Post Exertional Malaise (PEM), which means that after a person spends too much energy then they crash and have to completely rest until they recover. PEM rest can take a day or two, or it might take weeks. Depends on the severity of ME/CFS. So the recommended method for avoiding PEM is something called "Pacing." Meaning, the person does a little bit of work at a time, but not enough to trigger PEM, and then rests. Then does a little more work later, but not enough to trigger PEM, then rests again. And so on. Basically, doing too much (spending too much energy) all at once means more time recovering in bed than if we pace ourselves and avoid doing too much at once. We tend to be able to do more if we're not regularly crashing ourselves. 

So... this idea of "Food Prepping" is confusing to me. It would take HOURS to do all the prep at once. I know people who spend their entire Sunday afteroons food prepping.  Hours of chopping veggies, cooking, portioning, washing dishes, cleaning up... noooo. That's way too much work all at once! This makes sense for couples with kids who both work long hours and can't find time or energy to cook once they're home in the evening. It doesn't make sense for chronic illness. Chronic illness is better when food is kept simple, and frankly, this isn't a simple way to approach food. Food prepping is strictly a time-management solution for busy people.  

Let's explore how I eat for an example of pacing:

Breakfast is usually just frozen organic sausages, and all I have to do is put them in a pan with water, put a lid on it, let them boil while I take all my pills, and then eat them. Easy. And how could I food prep that? I only eat protein for breakfast due to my reactive hypoglycemia issues, so there's no need for me to complicate breakfast with things that require a lot more energy to cook. 

Lunch for me is typically a simple salad. Salad isn't exactly the best thing for me because raw foods are really hard for me to digest, but it's easy and I need easy (and I have digestive enzymes I can take, ha.) I make it of romaine, avocado, cucumber, organic deli meat, and light sugar-free and seed-oil-free dressing. I might add in some artichoke hearts, olives, or beets from glass jars. Sometimes I add sprouted nuts and seeds too. When I say avocado, I usually mean pre-made guacamole that I scoop out. Honestly, it's really simple. The work comes from shredding up the deli meat in my hands and washing my hands. How could I food prep any of this? Everything I add to my salads is already prepared.

My afternoon snack is beef jerky or a protein shake. No food prep there.

Dinner. Dinner is where I need energy. I'm way better off cooking every dinner from scratch though. I thaw my meat the day before. When it's time to cook dinner, I go slowly. I start with chopping veggies if I need to, and then I store what I don't use in a container in the fridge at that point. For instance, I usually don't use a whole zucchini for one dinner, but I'll chop the whole thing (since I'm chopping anyway) and store the rest. My husband likes to chop his own veggies (he eats onions and peppers, and I can't.) I also buy pre-cut veggies when available, like shredded carrots or sliced shitake mushrooms. But my favorite? I buy frozen veggies and dump them in the pan. Frozen veggies are the best of the best for me. They're already cut, I can buy them in bulk, and they require no extra work.

I don't make big fancy dinners - I keep it simple. But my diet is also simple. I always eat meat with veggies, nothing else. Almost all my dinners are low-management. I pour walnut or coconut oil in a pan, add my chopped veggies, season them, and let them cook. Then when they're halfway cooked I add my meat. Sometimes I use a whole uncut chicken breast, sirloin steak, or salmon steak. All I have to do is season it and flip it. Other times I'll chop the meat to make stir-fry, then stir occasionally until cooked. I might add coconut aminos, coconut milk, lemon, etc.  You're never going to see me cooking anything that requires a lot of steps - but I also can't eat grains, beans, dairy and sauces, or other things that require extra work to cook. 

Oh, and how I love my Instant Pot!! It takes the work out of making roasts, stews, and soups. I always buy a quarter cow and store it in my deep freezer, so I get a lot of meat that needs to be slow cooked. The Instant Pot cooks it really well and saves me loads of effort over crock pots and the oven!

While food is cooking I wash the dishes I can wash (I do not have a dishwasher currently..... that's a major issue with my energy levels.) 

Note: I have a husband. When I'm really bad he will always take over cooking dinner. We avoid eating out, but we will Doordash if necessary too. I also keep cans of soup in the pantry for quick and easy dinners. I have multiple back-up-plans. 

Keep it simple, don't food prep. Spread your energy out into smaller chunks. Don't spend too much all at once. For many with ME/CFS, cooking anything at all would be way too much energy. In that case, you're going to need a caretaker or rely on food delivery. That makes this a moot point. 



Taking High Doses of Vitamins

It's probably not going to "cure" you unless you have severe deficiencies, in which case, you don't have ME/CFS. You have nutritional deficiencies. It's a really common cause of chronic fatigue, but it's not the cause of ME/CF Syndrome. Chronic Fatigue Syndrome and Chronic Fatigue are not the same, which is why CFS is going by ME these days. 

We need proper nutrition to feel our best, and getting proper nutrition will help reduce how bad we feel. If we're deficient in vitamins and minerals it can present as muscle pain, nerve pain, brain fog, insomnia, bad skin, losing hair, poor vision, ringing in the ears, and more. Yes, if you are deficient in anything, supplementing can help relieve symptoms. That said, ME/CFS is not an illness of nutrition deficiency. ME/CFS research is still determining how ME/CFS works, but we have evidence that it's an immune cell deficiency, or mitochondrial problems. There's also evidence that it's a brain fluid leak. 

The problem, however, with just taking some random mulivitamin or a B-Complex is that they might make you worse:

1. There's no regulation on supplements. There's no FDA monitoring them. So you can't know what you're really buying... unless you're buying from brands with 3rd party certifications, in which case you're going to pay a lot more. It's worth the cost of good quality vitamins if you need to take one. But so many of these cheap vitamins are not what they claim to be, and there have been lawsuits because of this issue. Walmart and Target store brands tested some pills and found they were just filled with fillers, not what the label said they were. 

2. So many multivitamins use forms of vitamins that are synthetic and not well absorbed. When you buy a multivitamin from Walmart or GNC, you're not getting the same vitamins you'd eat in food. You'd never find cyanocobalamin in food, but that's the most common form of vitamin b12 in supplements. What they do is bind cobalamin to cyanide (yes, the poison in apple seeds) and call it vitamin b12, because the cyanide has the ability to get the cobalamin into your blood stream really easily (cobalamin on its own would pass right through you without getting absorbed.) Then your body has to clear out the cyanide (poison), which takes a lot of energy - and we can't afford the energy to be detoxing like that. The amount of cyanide is considered to be well below the toxic limit, so it's considered safe. That said, people who need to take very high doses of B12 (very common in those with fatigue illnesses) often don't have bodies that can handle any extra substance to detox. I have talked with people in groups who claim that these synthetic vitamins tend to give them a lot of gut pain, trigger IBS issues, and cause flare ups. When they take the more expensive natural forms they don't have these problems. If you want to read even more about this issue, I recommend reading Dr. Ben Lynch. He is a leading researcher on genetics, and how things like forms of vitamins affect our DNA. 

3. So many vitamins contain super high doses of vitamins you can actually overdose on. Look at the supplement facts on any vitamin. The first on the list is vitamin A, a fat-soluble vitamin (meaning your body stores all of it in your fat instead of passing excess through you in your urine.) Fat-soluble vitamins are vitamins you can overdose on, and you can actually get sick from vitamin toxicity. Vitamin A is always in a really high percentage (like 1000%+ RDA) because these companies want you to feel like you're getting your money's worth. Except you really don't need that much vitamin A. You really really don't. 

4. Vitamin toxicity can cause a lot of problems. I am prone to vitamin b6 toxicity, which causes my neuropathy. The moment I start feeling the tingling in my feet return, I know I've had too much b6 in my food. When that happens I have to avoid sunflower seeds and poultry for a while, because they're the foods I eat with the highest amount of b6. I wrote a blog post on this.... let me go look for it to create a link..  Wait no... I didn't. HOW DID I NOT WRITE ABOUT THAT. That was a MAJOR issue I went through! Scrolling through my blogs, I see that I did touch on it in a few different posts, and it started here. I need to write about b6 toxicity!!! It's so important!! 

Yoga - Or Exercise in General

Let's go back to what ME/CFS is: It's defined as chronic fatigue that is made worse by exercising, causing Post Exertional Malaise (PEM.) Exercise makes ME/CFS worse. 

Once upon a time in the UK, the medical recommendations for treating ME/CFS was Graded Exercise Therapy. Julie Reymyer wrote an excellent article for Slate Magazine on this issue, explaining why it damaged patients and how this terrible treatment came to be the recommended treatment. 

Deconditioning is a real issue though, so it is good to move as much as we can with the energy we do have, as long as we don't do so much that it triggers PEM. I am able to go for a few walks each week, usually about a mile. They have triggered PEM for me sometimes, but when they don't, it's worth walking. It feels good if I don't push myself too much. 

But I also want to explain why Yoga is a bad recommendation for people with POTS. Yoga involves a lot of inversion, and POTS is triggered by postural changes like inversion. A yoga instructor that understands POTS can be helpful, because there are some yoga practices that don't involve postural changes, but it will be hard to find such an instructor. People with POTS do need to strengthen their legs to help with the blood pooling, but they need exercises without postural changes. I really like exercises in which I'm laying on my back or stomach. 

Essential Oils

Oy vey... essential oils. What a huge topic! As someone with MCS (Multiple Chemical Sensitives), I don't really like to recommend EOs because they all contain VOCs, which can trigger reactions. A lot of brands use formaldehyde doners in their oils too. I personally don't have problems with some EOs, and I'll use them occasionally because they do help. I don't use them for perfume or aromatherapy, I use them for things like massaging blood into feet or treating my skin when I get hives or rashes. But for the purpose of this blog, I'm not going to focus on MCS issues. I want to focus on bad advice for treating fatigue. 

ME/CFS comes with a lot of sensory issues, and the purpose of EOs are to stimulate your senses. They work because they affect your nervous system. That can be too much for people with ME/CFS to tolerate. It's possible that one or two could help someone with ME/CFS, like using lavender when they have insomnia. I find that ginger oil in my baths helps keep me warm for a few hours after the bath (I'm always freezing cold.) The problem is not EOs... the problem is people who recommend using them. They're not careful! If someone with ME/CFS wants to use EOs, they need to use very light amounts at a time to see if they can handle them. It's really easy to overwhelm the nervous system with EOs, which can create even more fatigue, even cause headaches and muscle aches. 

EOs (if they're pure, organic or wildcrafted, and without synthetic perfuming agents or stabilizers added) may help manage some symptoms if you can handle them. If not, they'll make you worse.

What they will not and cannot do is cure ME/CFS, Dysautonomia, Endometriosis, or any other illness. It's bad advice to recommend them for someone with ME/CFS because it's most likely just going to overwhelm their nervous system. It could be like someone blasting rock music while you're trying to sleep - they're too stimulating. Sensory overload. People with ME/CFS really need to maintain a calm nervous system. The least sensory issues possible helps. Avoid smells, loud noises, light pollution, bad textures, etc. 



Go to Therapy

For grief counseling? Yes, that's a good idea! The ability to talk about how much grief this illness causes is really helpful!

In my experience, however, this advice usually means "go to a psychiatrist for drugs to treat your anxiety" OR "go do CBT to fix how you think." It's not only a highly dismissive remark, it's dangerous. CBT is a therapy that assumes your root causes are all in your head - that you believe you have an illness instead of actually having one. It's very insulting. Read the article in that link and it will explain why CBT has harmed many patients. In short, CBT encourages patients to stop acting like they have an illness, which leads to the patients making themselves MUCH worse because they try to exert energy and live "normally." 



Just Get a Job Because Having a Reason To Leave the House Helps

When I first got sick, a lot of people told me this. I wasn't working for 1.5 years, and I was bedridden for much of that time. I didn't get a job until after working with a doctor for a while and recovering enough to be able to work very part-time. Without seeing that particular doctor, I wouldn't have been able to manage working at all. I saw loads of doctors who couldn't help me, then I flew out of state for my naturopathic doctor, and he was able to help me. He's internationally recognized at helping people like me though, where as all the local doctors I saw didn't have a clue what was wrong with me.

After I started working again, did the job help me recover? No. It didn't do anything for my physical health. Did it help give me a sense of purpose and lift my depression? Yes, but it's because of the nature of the job I had. I was very passionate about the work. Despite my passion for it, I was seriously not able to work more than 10 to 15 hours at best. I couldn't work multiple days in a row, and I spent my time at home recovering. 

We must remember that ME/CFS is an illness of energy. Jobs take A LOT of energy, and if we can't spend energy at our jobs, we're probably going to get fired. If we give more energy than we have to a job to avoid getting fired, we're probably going to have a lot of PEM that keeps us feeling at our worst. 

Highasakite - Science and Blood Tests

Florence and the Machine - Sky Full of Song

The lyrics are wrong in this video - it's "I can hide from the thunder in a sky full of song."

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.