Chronic Fatigue Syndrome: I Am One of the Millions Missing
Hi friends. I haven’t written much about my trials and tribulations 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.
Both 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 and Fibromyalgia are the same disease because they overlap so much in symptoms.
I prefer to use ME because I don’t believe that CFS aptly explains how devastating this disease is, but for this article’s title, I chose to use CFS because this search term is more commonly looked for. **Note that I use ME in this article wherever possible.
It is one of my greatest wishes that Chronic Fatigue Syndrome is eventually struck from medical textbooks completely, as it does not describe the disease in any way and actually does it harm by reducing this horrible disease to something that seems hysterical and easy to explain away.
Fibromyalgia and ME/CFS are two very different diseases that overlap in a lot of areas.
There are a great deal of similarities in the muscle issues between ME and Fibromyalgia. Both typically affect more women then men, and similar medications are used for treatment in both cases. ME is thought to affect more than 17 million people worldwide and it is four times more prevalent in women than men.
There is no doubt, though, that these are very different disorders.
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 between Fibromyalgia and ME is that in Fibromyalgia, the main symptom is body-wide pain with some fatigue, whereas with ME (Chronic Fatigue Syndrome), the main symptom is an overwhelming lack of energy with some pain.
The other clear indicator that shows the difference between these two diseases is different levels of BDNF and Substance P in each disorder, but I’ll leave this to another article for explanation or you can read more about it here. (This is how my doctor determined that I had CFS/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 43 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.
When my familiar ring of red rash appears in the same place over and over and over again and my lymph nodes swell up, I know my CFS is ready to wreak havoc. It grinds all activities in my life to a halt.
On some days, even reading or looking at my phone or being online are impossible.
If you asked me to move when I am in the throes of an ME attack, it simply wouldn’t be possible. It would also be excruciating for me 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 for me.
Although my ME is not as severe as some patients I know of, it is completely disabling.
A couple of well known cases of people with severe ME are:
Whitney Dafoe fell sick in 2008. He doesn’t leave his room, nor can anyone enter it without being extremely quiet. Once a young man who traveled the world, Whitney now lives in a grey zone 24/7. He depends completely on his family for his health care. He doesn’t eat. His family feeds him through an IV line to keep him alive. He can’t speak or write. Any kind of motion exhausts him. He can’t bear to be touched or listen to anything, or see bright lights.
His father is Dr. Ronald W. Davis, PhD, Professor of Biochemistry and Genetics and Director of the Stanford Genome Technology Center. Dr. Davis has worked for years now to help find a cure for his son before it is too late.
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. Her documentary is phenomenal. Of all the ME patients I’ve read about, it’s Jen’s experience that speaks volumes to me. 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. All because no one believed she had ME. 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 felt that her attempts at GET (Graded Exercise Therapy which has been the standard course of PT for patients up until the last year or so) is what worsened her ME. Scientists are now learning that GET is not a recommended course of therapy for ME patients because it makes them worse, not better.
This is what happens when my ME is active:
A few days ago I had a Grey Day. I also call them Missing Days because these are the days when my ME/CFS goes into overdrive. I go missing for a while. 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 and it happens fairly frequently. After these attacks, I do my best to stay calm and not move much. Moving makes it much worse.
There is no talking, no light, no sound, no external stimuli. All of that makes it worse. I get hyper sensitive to everything. I couldn’t bear to hear anything. Even light whispers can bring me to tears.
The housekeeper was here when this was happening and it was torture to listen to her run our vacuum cleaner. Tears leaked down my cheeks behind the closed door even with my head buried under two pillows.
Yesterday I realized I should buy a pair of noise-canceling headphones, but even the pressure of having something on my head is agony.
The room must stay dark and I must stay as still as possible. John knows not to open the curtains until I say so. This usually doesn’t happen until the harshest light of day is over and the sun has begun to fade.
Even the weight of the sheets and blankets on me is 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 just hover in between both worlds in a grey 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 M.E is with me, I can’t move at all. I simply don’t have the strength.
My husband knows to leave me in quiet and bring me food if I can manage to eat, but we basically just wait it out. There is nothing else to do. He checks in to make sure I’m ok every once in while, but even the sound of the door opening is enough to leave me in tears.
I am half asleep and half conscious at these times. I am aware enough to know what is going on, and I know where I am.
My body is in bed, but my mind moves between awareness and wonder at how anyone can feel this way or live this way.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. Click To Tweet
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 a few more illnesses had joined the club and that Myalgic Encephalomyelitis was the culprit between these baffling attacks of not being able to do anything.
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.
Some times this goes on for days, but the first day is always the worst. I’m lost in my own fog, trying to find some light but knowing I can’t face it direct on for fear that it will burn me and reduce me to ashes.Fear - Face Everything and Rise or Face Everything and Run? For me, it's Face Everything and Remember what might happen if I overshoot my energy limits. Click To Tweet
Life is bleak on these days. It’s not living. It’s existing.
I can’t even express how devastating these days are or how many times I ask myself what I did 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 required me to burn through 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 a night out with my friends.
Last week, I went out with some friends to celebrate a friend’s birthday. I took great care to rest as much as possible and took precautions that night to ensure that everything after the celebration would be as restful as possible. I rested for four days after that evening, and it was still unavoidable. I still had a Grey Day.
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 wish I could find some reasoning behind these events or figure out what triggers them.
I wish they never happened.
I wish I had some control over my life.
I’m still feeling it today, but at least I got out of bed today. After this attack, I know I need to take things really slowly for the next few weeks. Actually, I know that I need to take things slowly for the rest of my life. My old life is gone. I’ll never get it back. 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