What it's Like Living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: What Helps, Dealing with Lack of Empathy, and Why There Will Never Be a Real Root Cause Awareness Campaign!
CFS/ME is not exhaustion or fatigue - those can be "pushed through" and someone can still keep going. This is brain inflammation and mitochondrial dysfunction that affects the whole body system.
Have you ever had a leaky cell phone? You charge your phone all night and that darn thing will still only reach 20% charged and then it quickly and furiously runs out of battery over the next 2 hours and you have to charge your phone again - only to have it reach 20% again? Yes. Frustrating.
Our mitochondria is our cell chargers. When they get leaky, the same thing happens to our energy level. Some people with CFS/ME are in bed all day because their battery only charges enough to run their organs. Getting up isn’t an option. Since everyone charges on a continuum with the disorder (meaning different severity levels)- some people can charge higher and still live and work, but just not with a lot of energy. My guess of where I was at in 2015? 10%. I could only get off the couch for a couple of hours a day - but it would take 4 days of rest to be able to go to the grocery store and I would be beyond exhausted.
As a person living with fairly severe CFS/ME for a decade, I can tell you this is an incredibly FRUSTRATING syndrome. However, I’ve been in the less severe stages since highschool because of mercury poisoning (because of silver fillings in my teeth) and fluoride poisoning (because they add it to the water) but didn’t know what my energy problems were from and it didn’t stop by life until I was severely poisoned by a fluoroquinolone antibiotic in 2015 at age 34.
CFS/ME can also occur because of a chemical, toxins, or heavy metal poisoning - which is what happened to me. Fluoride causes CFS/ME. Fluoroquinolone antibiotics, antibiotics in general, and other pharmaceuticals, chemicals, and vaccines can cause the syndrome too. Some people develop it after breast implants or hip implants or any other implant that ends up poisoning the person. Our bodies are different and the chemical and toxin assault we can handle is different as well.
For many people, a virus is usually the catalyst; their body was unknowingly bogged down with toxins, chemicals, heavy metals, molds, and viruses and the body could not handle one more virus. The body has a hard time getting rid of viruses when the immune system is weakened by toxins and chemicals and heavy metals. This has always happened but finally got media coverage because they called it long covid. Long covid might actually be a different thing if it has to do with spike proteins, which I read it does for some people.
Exhaustion and fatigue are usually what people think CFS/ME is - but it is not. Exhaustion and fatigue can be “pushed through” or recovered from by sleep and rest. Not so with this syndrome. The body’s mitochondrial function is not functioning well or hardly at all for some people. Mitochondria is the cells that hold ATP, our energy source. If these cells gets leaky, they do not function well. It’s an easier disorder to recover from if toxins are the only thing bogging down the body - BUT if the mitochondria is hurt and “leaky” then this could be a decades long to never recovery, depending on the severity.
What destroys mitochondria? Pharmaceuticals, toxins, and vaccines are the biggest culprits - which is…
Why will there never be a real awareness about CFS/ME
Why will there never be a real awareness about CFS/ME? Because precious toxins, chemicals, and heavy metals cause this…and they can’t cure it with more toxins, pharmaceuticals, or vaccines. So, not only would it hurt the business of the trillionaire pharmaceutical industry for people to know that any antibiotic can hurt mitochondria, especially fluroquinolones, along with other pharmaceuticals and vaccines, it would hurt the industry for people to understand they cannot be cured by more of their products either. Also, the big corporations might be hurt if we understood how much the chemicals in our foods, water, air, and everyday products were hurting our mitochondria.
Did You Know When Pharmaceuticals or Vaccines are Tested, They Do NOT Test for Mitochondrial Dysfunction? It’s not required testing.
Whether or not their product hurts our mitochondria is not considered important. Testing for mitochondrial dysfunction of pharmacueticals and vaccines might cause people to know that these could destroy our mitochondria - which means destroying our energy (including antibiotics), then we all might be HESITANT to take pharmaceuticals and vaccines.
Oh my, “hesitancy” has become a bad word in the healthcare field. That’s why 5 states are currently suing pharmaceutical companies. They are suing because these companies didn’t tell people the severe side effects that could occur from the covid vaccines. They also censored social media because they didn’t want our knowledge of what could happen to cause vaccine “hesitancy”.
Everyone might care about the flouride in the water issue and the pesticides on our foods (all containing fluoride) if they knew fluoride could harm their energy level as well as hurt their body and brain (proven - that’s why the court case went on for 7 years and we’re still waiting for the judge to make a decision. Read my article HOW AND WHY TO DETOX FLUORIDE Out of Your Body and Tap Water! Fluoride Trial is Over: Evidence Proves Fluoride is Toxic to the Brain. ) Plus, dumping fluoride into our water is a lucrative practice for corporations - they no longer had to pay to dispose of the waste product but then could get paid to sell it to dump the waste in our water system.
The last thing these big money-making corporations want is for us to be hesitant about buying and taking their products. Also, people might not join them in proclaiming how great their products are and jump on board that everyone should be forced to take whatever products they come up with to keep us safe in the future…
My story will not be in any mainstream media because the only CFS/ME stories that get to be seen in those environments are the stories of the people who do not understand the root cause and believe it happens only because of a virus or viruses. The only Ted talk I’ve seen about CFS/ME was a woman who believed she wouldn’t have gotten CFS/ME if she had went to her doctor and gotten pharmaceuticals for her virus early on.
I mean, if I’m not willing to push pharmaceuticals or vaccines as the answer to my health - does anyone really want to hear my story? No.
But here it is. On my little substack. Just for me and you.
CFS/ME Treatments
My favorite book about this syndrome and how to treat it is by Dr. Sarah Myhill, Diagnosis and Treatment of Chronic Fatigue Syndrome - second edition. However, since she is a functional medicine doctor, she does use pharmaceuticals (I do know their is a time and place for pharmaceuticals for some people). For me, I chose homeopathy to get rid of viruses and detox methods like C60, Ionbiome, and orange peel tea - detoxing heavy metals and chemicals first so the body can be better at getting rid of viruses. 11 of the Best and Safest Ways to Detox Heavy Metals, Poisons, Toxins, Medications, Vaccine toxins, Mold/Fungus, and Chemicals is my post about the detox methods that worked best for me.
Intermittent fasting, organic real whole foods, cutting out gluten and wheat (I’m allergic) and many other therapies have helped - but I’m still working on healing as my mitochondria was badly injured. I’ve read that some people can heal their mitochondria in 10 years (some can heal in 2-3 years in less severe cases). I’m at year 9. It all depends on the severity level. I know people who have been hurt for over 30 years from fluoroquinolones and still have not recovered their energy. However, I’m an optimist and going to try to recover until the day I die - and I am still making progress every year. Here is my story with more ideas: My 8 Year Long, Crazy Fluoroquinolone Antibiotic Poisoning Story: For me, “Floxed” is Also Mercury and Fluoride Poisoning
Alive but Not Living
Today? Maybe 30% on my charge for good day for me? Still cannot work, but I’m starting to sell my organic and natural products that I make, because I’ve noticed on my best days, I now have 2-3 hours a day, 2 days a week, where I can make products (My Organic and Natural Skincare Products) and ship even with daily household chores. That’s a huge improvement from where I was. My very best weeks (meaning I am purposely not detoxing or doing any healing activities like softwave and being careful not to walk or exercise for the several days before an event), then I can go out into the world with friends and family for a 3 day weekend and do things with just some breaks during the day! No, it’s not like what most people can do and I do need help from my husband - like to drive places and help me when I get too tired. Then I crash for 4 days afterward where I can’t get off the couch. But it’s worth it to live. I only get to do that 2-3 times a year. Dr. Sarah Myhill says the magic number of 4 happens because our bodies take 4 days to charge our mitochondria.
During the most severe periods or flare ups, even getting out of a chair is hard. I can and do get out of my chair- but it’s all the energy I have. Even still today, 9 years after the severe poisoning, this still happens on a regular basis. I fight through the fatigue as much as possible - but it’s nothing like fighting exhaustion. It’s so much worse. Cooking food is hard. My brain isn’t working right, I can’t think well and my brain feels inflamed and I can’t write - that’s too much brain energy. I can’t read well because that takes too much energy. Sitting in the chair and watching TV is the only way to pass time but sometimes the TV can hurt my head or eyes. That’s when I daydream instead. It’s beyond awful and there is no one who can understand this fully until it happens to them.
On my better days, I can do all those things and do laundry and grocery shop. But that’s it. If I cook and grocery shop that is all I can do in a day. Walking is something I used to only be able to do every 4 days for a short period of time. I can walk every other day 1-2 miles on good weeks. I have to take time off from walking when it starts interfering with being able to do daily tasks like cooking and causes my head to flare up (brain inflammation)- which walking or exercise sometimes does when my body cannot handle it.
And then while I’m dealing with the above problems and trying to raise kids, deal with the dogs, be a wife, friend, and family member along with cooking, grocery shopping, doing the laundry, dishes, cleaning, and try to make products to sell - all the bare minimum things a person has to do if they are alive - then I deal with people “not getting it”.
“Not Getting It”
I know this is a universal problem for humans dealing with literally anything!
People who marry narcissits - nobody else gets it. People who are diabled in any way - most people do not get it. People who have a child with disabilities - people don’t get it. People who are struggling with trauma and a childhood full of deep pain - most people don’t get it.
We just don’t get each other’s obstacles, joys, challenges, growth, healing, experiences or really much about anything we haven’t personally dealt with and even when we have - it’s not the same.
Some of the most annoying people are people who have had something similar or the same symptoms or challenges and think they know what you need to do based on what worked for them. Yes, I still catch myself telling someone what I think may work for them, even knowing this!! (Isn’t that part of what this article is about?!)
We are all just human - we all need grace. But it can be really helpful IF someone wants to know our story and what we did. They may be helped by different things and as long as we remember that everyone is different and is helped differently, I think we can avoid some of that. It’s helpful to remember that most of us helpers are really just trying to share information because we want to see other people healthy and happy - just like what we want for ourselves.
But the “not getting it” becomes a problem when there is a lack of empathy. I’ve dealt with a lot of lack of empathy - no, I don’t need sympathy - but I do need empathy. Here is why:
I was denied disability because the judge overruled the doctors papers that said I coudn’t work due to CFS/ME. Based on what medical knowledge? None. My lawyer said unfortuatnely that happens alot. They look for wheelchairs and outside appearance and because there is not a mitochondrial test in the USA (there are in other countries), CFS/ME cannot be proven. A judge can rule that a person can work even with proper documentation that they cannot. This lack of understanding and empathy was a problem because I could not work and then also could not get disability from my former employer - all of which would have went to medical bills anyway, but it would have helped. Nothing I have needed to heal me so far has been covered by insurance and it is all expensive. I do not know what I would have done if I didn’t have a husband able to provide for me - but God knew that.
Some friends and family have had a hard time understanding why I cannot come visit often, why I miss important events, why I can hope I can join activities but then have to cancel, and why I can’t make certain plans (nothing is certain for me). Just this week alone, I've missed a girls trip, felt awful at a wedding ceremony and had to miss the fun reception, missed a friend’s birthday party, missed church, wasn’t able to get my products made, social media stuff online is still not done, and many other household things are undone. My current friends and family mostly understand at this point - but I don’t really know to what degree. What degree can anyone understand something that isn’t happening to them? I would much rather have fun than miss out on anything - but that’s life isn’t it? But it’s hard when it’s not just a week or two of illness a year - but it’s the whole entire year for a whole entire decade almost.
Living is not much fun because life requires energy. This is not an exaggeration - though it will sound like it: There has not been 1 day in 9 years that I felt good. My best days are “ok” with me being able to accomplish some things even though I don’t feel well. Why? Because I had weird stuff happen to my body because of a severe poisoning along with having CFS/ME: the severe connective tissue destruction in my head and neck and body that is painful and does not allow proper drainage in my head and neck (which I have found a couple of treatments that are working so I’m hopeful this will change) and also the hypersensitivity to fluoride - which the body is always detoxing. That is a challenging situation. Fluoride is in everything, every fruit and vegetable because of water - anything non-organic or processed has fluoride because of pesticides and fumigation at factories which is fluoride spray. Everything detoxes fluoride - herbs, exercise, so detox is pretty awful and is not recommended for those hypersensitive to fluoride - but then guess what? You can’t heal if you don’t detox! So many double edged swords.
My understanding is that some days, in less severe cases, can be good for some people with CFS/ME. None of my days are good. But they have become better and better. (I will report about the new Softwave treatments I am currently getting in a future post when I know all the benefits. Also adding in C60 has been a game-changer).
On my best weeks, I only have a couple of hours a day where I can work. So, work is hard. But IF I am doing any kind of detoxing or thearpy like softwave, ozone injections, acupuncture - anything that detoxes fluoride and causes inflammation or flare ups- then it might be weeks without being able to work.
So, I’m currently spreading my softwave treatments to every 2-3 weeks becasue I am hoping on doing some work and not to miss out on every summer get- together friends and family are doing - all while knowing that I might miss or go and feel awful.
Empathy is hard for people when they do not understand. I’m writing this article in the hope to inform others so that friends and family of those with this disorder gain some understanding so empathy will be possible - and to let anyone with this disorder know that you are not alone in this struggle.
Also, this should serve as a warning too! Watch what vaccines and pharmaceuticals you take! Detoxing before anything bad happens might be a good idea for some people too.
Always consult a quailified medical professional for your individual healthcare needs as none of this is intended as medical advice or suggestions, only for informational purposes.