Chronic Fatigue Syndrome: I Am One of the Millions Missing

Myalgic Enchephalomyelitis

Chronic Fatigue Syndrome: I Am One of the Millions Missing

[Updated 2019]

I haven’t written much about my diagnosis with Myalgic Encephalomyelitis (ME), which most of you know as Chronic Fatigue Syndrome. This is mainly because the two diseases that are most active in my life are Ankylosing Spondylitis and Fibromyalgia.

All of these chronic illnesses have no cure.

Just because I haven’t written about ME doesn’t mean I don’t suffer badly from it, though.

Quite a few people doubt the existence of ME, and there are equally as many who believe that ME

ME and Fibromyalgia are the same disease because they overlap with symptoms.May Momentum - Carrie Kellenberger's Story with ME for MECFS Day

For this article’s title, I chose to use CFS because this search term is more commonly used. *In 2020, ME is more recognized as the correct term.

It is one of my greatest wishes that Chronic Fatigue Syndrome is struck from medical textbooks completely.

This is because I see people confusing chronic fatigue with MECFS all the time. These are two very different problems although they both result in fatigue.

Additionally, CFS does not describe the disease and does harm by reducing this horrible disease to something that seems hysterical and easy to explain away. Believe me, there are millions of us suffering from this disease. A quick visit to MEActionNet will show just how much activity and research is happening with ME right now.

You can also visit Open Medicine Foundation to see how they’ve ramped up their studies into MECFS this year because of COVID19. OMF is my preferred organization for MECFS information. They are working hard to bring awareness to patients who are suffering all over the world. With COVID19, researchers expected to see an increase in MECFS patients this year because viruses are known for kicking this disease into high gear. (Mine started with Epstein Barr.) Now that more information has been released about COVID long-haulers, we’re seeing that they were right and very smart to start their studies so early in 2020.

Fibromyalgia and ME/CFS are two very different diseases that overlap in a lot of areas. OMF has a good breakdown on their site if you want more information.

There are a great deal of similarities in the muscle issues between ME and Fibromyalgia. Both diseases affect more women then men.

ME is four times more prevalent in women than men.

ME is thought to affect more than 17 million people worldwide, but these numbers are growing every year as medical teams become more accustomed to recognizing ME for what it is.Carrie Kelleberger Walk AS One

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Without getting into the specifics of brain functions – which will show two very different stories for both health issues – the general rule of thumb for the difference is that the main symptom for fibromyalgia is body-wide pain with some fatigue.

Whereas with ME the main symptom is a complete lack of energy with pain.

Other clear indicators that show the difference between these two diseases is different levels of BDNF and Substance P in each disorder. You can read more about it here. (This is how my doctor determined that I had ME in early 2015.)

ME involves extreme levels of fatigue that last a long time and disrupt daily life.

Rest does not help. Sleep does not help.

ME tends to develop from a viral infection. In my case, we think the triggering event for me was mononucleosis when I was a teenager. I’m 44 now, and I’ve been quite sick for more than 20 years.

Since that first case of mono, I’ve had mono countless times since. This means I have chronic EBV (Epstein Barr Virus) It doesn’t go away like it does with many other mono patients.

When familiar rings of red rash appear in the same place and my lymph nodes swell up, I know my ME is active and my body is going haywire. Life grinds to a halt.

On some days, reading, looking at my phone, or being online are impossible.

If you asked me to move when I am having an ME attack, it wouldn’t be possible. It would also be excruciating if someone tried to move me or if I had to be in the hospital because even light or the slightest sound or touch is torture.

Although my ME is not as severe as some patients I know of, it is disabling. My life has changed drastically because of it.

A couple of well known cases of people with severe ME are:

Whitney Dafoe fell sick in 2008. He is still alive and his parents are working as quickly as possible to find a cure. Whitney hasn’t been able to leave his room in years. Once a young man who traveled the world, Whitney now depends completely on his family for his health care. He doesn’t eat. His family feeds him through an IV line. He can’t speak or write. Any kind of motion exhausts him. He can’t bear to be touched, can’t handle bright lights, and even the smallest sounds disrupt his overactive central nervous system.

His father is Dr. Ronald W. Davis, PhD, Professor of Biochemistry and Genetics and Director of the Stanford Genome Technology Center.

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Jennifer Brea – Jen gave the highest-rated talk at the 2016 TED Summit in Banff, Canada, the first ever TED Talk about ME. After her ground-breaking speech on TEDx, she went on to document her life with ME in a documentary called Unrest. Watching her documentary was like watching little parts of my own life flash by on the screen.

Sophia Mirza passed away at age 32 after being taken from her home and placed in a psychiatric facility where she received inappropriate care and negligence. Her post-mortem showed widespread inflammation in her spinal cord (ganglionitis).

Jodi Basset, Founder of the Hummingbirds Foundation and longtime Australian ME patient, author, and advocate died at 39 years of age. She suffered from severe ME since age 19. Jodi believed GET (Graded Exercise Therapy) made her ME worse. Scientists are now learning that GET is not a recommended course of therapy for ME patients because it makes them sicker, not better.

This is what happens when my ME is active:

Chronic Fatigue Syndrome Awareness

A few days ago I had a Grey Day. I also call them Missing Days because these are the days when my ME goes into overdrive. It’s like being between two worlds: The Land of the Living and the Land of Death.

I’m there, but not there. I’m aware, but not aware.

I lost about 36 hours in total to this. These attacks happen fairly frequently. Afterwards, I don’t move much. Moving makes it much worse.

There is no talking, no light, no sound, no external stimuli. All of that makes it worse. My central nervous system is out of control. I get hyper sensitive to everything: sounds, lights, smells. It all becomes too much.

Even the weight of the sheets and blankets on me can be too much to bear.

Through all of this I am floating in a grey world.

I don’t have the energy to sit up or eat. I hover in between both worlds in a  daze.

Pain is there and it’s widespread, but I know this is an ME attack because the primary symptom is crushing and debilitating fatigue. With fibro attacks, I can move with pain. When ME is with me, I can’t move at all. I simply don’t have the strength.FEAR MECFS by Carrie Kellenberger

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We wait it out. There is nothing else to do.

My body is in bed, but my mind moves between awareness and wonder at how anyone can feel this way or live this way. It hurts to think.

I am missing. Where am I? Locked somewhere in my head while my body punishes me for hours and hours on end. ME and M.E.

The first time this happened was in 2013.

We didn’t think much of it and thought it was due to Ankylosing Spondylitis, but in 2015, I had more attacks and my medical team finally determined that I had developed Myalgic Encephalomyelitis.

There is pain, but the fatigue… It’s indescribable. It’s worse than the fatigue that comes with Ankylosing Spondylitis and Fibromyalgia. My body literally will not move.

Life is bleak on these days. It’s not living. It’s existing.

These days are devastating. What did I do wrong to have this happen?

I have been on a strict schedule for years now. My evening bedtime routine has been locked down for years. My diet was overhauled years ago, and I stopped engaging in activities that require energy because I know I don’t store energy like other people do. I don’t go out much and when I do, it’s usually to do a quiet activity, like going to the flower market or out for lunch. On occasion, I try to have an early night out with my friends.

What frustrates me most about these days is that just when I think I have them figured out, my body changes on me. I expect Grey Days to happen within 48 hours of extra activity, not four days or a week later.

I want to find some reasoning behind these events or figure out what triggers them.

Having some control over my life would be wonderful.

To be certain, my old life is gone and I know that I need to take things slowly. I’ll never be able to return to the world of gyms and outdoor runs, dancing, and spending time with my friends and family without paying for it somehow with a Grey Day.

Maybe it will improve for a bit, but I know it will always come back and it’s always there waiting for me. 

ME and M.E. #MillionsMissing

Resources:
https://www.cdc.gov/me-cfs/index.html

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Post Author: Carrie Kellenberger

I'm a chronically ill Canadian who has been living in Asia since 2003. I moved from China to Taiwan in 2006. I'm an experienced businesswoman and have worked in many leadership positions. My husband and I have owned our own business in Taiwan since 2012. In addition to my own work, I've been writing professionally about Asia, travel and health advocacy since 2007, providing regular content to several publishing companies and travel publications in Asia and North America. I started writing about my health journey in 2009 after being diagnosed with Ankylosing Spondylitis. In 2014, I was diagnosed with Fibromyalgia and ME/CFS, which came with other massive health issues. These diagnoses were the start of my journey as a health advocate and patient leader. Since then, My Several Worlds has been recognized worldwide as a top site for chronic illness by WEGO Health and Healthline. Twitter @globetrotteri Instagram at https://www.instagram.com/carriekellenberger/. I also have a dedicated page for My Several Worlds at https://www.instagram.com/myseveralworlds/. Each IG feed features different content.

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