The What, How and Why of Chronic Fatigue Syndrome

“I’ve heard of Chronic Fatigue,” several people have told me.  “That’s where you’re tired all the time, right?”  They then proceed to tell me I should just get more sleep.  I smile and think to myself, “If you only knew.”  So here is my effort to bring people into the “know.”

It’s been 4 1/2 years since I got sick and I have a hard time trying to write about it. That’s right, this is the dreaded post about Chronic Fatigue Syndrome (or Myalgic Encephalomyelitis, as it’s called in the UK).  There are three reasons I’ve not wanted to write the following blog post:

1. No one likes reading/hearing about illness, especially when it’s chronic and can’t be “fixed.”
2. I don’t want my illness to define me.
3. I don’t like to come across as whining, complaining or wanting sympathy.

So why, you may ask, am I writing this post that no one wants to read and that I don’t want to write?  Because I think it’s important to understand what CFS is, how it affects people that you may know, and what you can do to be a good friend to them.

How does it feel to have CFS?

Imagine you’ve just finished a half marathon that you didn’t train enough for (that’s the only thing I can compare it to from experience): you’re joints are aching and sore, your muscles are fatigued in the extreme and are constantly on the verge of cramping.  Now on top of that, you have a very bad case of the flu, and you’ve not slept for four days straight prior to the race so you can barely keep your eyes open or think straight.  You have a headache, and your heart is skipping beats every now and again.  That is what Chronic Fatigue Syndrome is like a majority of the time. It’s painful, you’re tired, and you are painfully aware of how much dumber you are because you just can’t think clearly.

What is Chronic Fatigue Syndrome really?

Each cell of your body is made up of anywhere from 2 to 2,500 mitochondria.  Mitochondria are the “energy factories” in each cell.  They turn nutrients from food into energy and oxygen that powers each organ and muscle throughout the body.  For a person with CFS, these mitochondria are impaired; thus, rendering their ability to absorb nutrients and thus, turn it into oxygen and energy, ineffective. That is why the entire body (including the mental capacity) of a person with CFS is affected: it’s starving for oxygen and energy! That’s why, on a daily basis, I and others with it, experience anywhere from 1-80 symptoms.  Before I was officially diagnosed, the seemingly random symptoms were worrisome because they mimicked other, more life-threatening conditions.  But after an official diagnosis and a few years experience, I’ve learned better to listen to my body and now only experience around 30-40 symptoms on a monthly basis.

So why can’t you just sleep a lot and overload yourself with vitamins?  You can, and people have–under the supervision of doctors, of course–only to experience little to no benefit or relapses that left them worse off than before.  Long story short, there is no cure, but sometimes those with CFS can improve over time.

If it’s incurable, is there anything to be done to manage it?

The best advice that I’ve read is that you have to stay within your energy limitations, eat healthily, sleep regular hours, and use graded exercise.

Many people who know that I still run and do sprint triathlons think that since I do them, I must not be too bad off.  It depends on the day.  And even when I do run/bike/swim, I go slowly and take lots of precautions.  I don’t run nearly as fast or as long as I used to, but I do still love running.  When I first got sick and tried to run like usual (not knowing what I had), I had heart palpitations, terrible leg cramps, and several times, almost fell asleep while running.  It was crazy.  Thanks to my husband pushing me to get a heart monitor watch, I learned to run by heart rate and by feeling (something I’d not done previously).

I also try to eat highly nutritional foods every day (and take vitamins for the elderly).  Thankfully, I’ve always loved collard greens, kale, spinach, and the like, so not much had to change.  I still have a weak spot for cinnamon Pop Tarts though…

Why do people get CFS/ME?

After finally being diagnosed as having CFS after one and a half years of testing in the Thomas Edison fashion, I wanted to know why.  Why me?  Why others?  After lots of research and reading, here’s what I found.  Let’s pretend there is a checklist of how to guarantee that you will develop CFS.  Having one or more of the following increases the chances of developing CFS or some other chronic illness, dramatically:

1. Have one or more preexisting diseases that affect the immune system
2. Contract the Epstein-Barr virus (or Mono)
3. Be an over-achiever, or live under high amounts of stress for a prolonged period of time
4. Score a 3 or higher on the ACE test (I scored a 7)

It would be a miracle if I didn’t develop CFS since I can check off each one of those things (several more than once).  The one that put me over the edge was contracting Mono while Ethan and I were visiting Russia in 2011.

The most eye-opening part of this journey was learning about the ACE test and understanding how trauma/stress affects the body.  I encourage you to click on the link.

What important things am I learning?

1. Happiness always comes from within.  Even though circumstances suck, and I awoke most mornings feeling worse than when I went to bed, I learned to look closely for the little beautiful things in life.  As much as I ragged “One Thousand Gifts” by Anne Voskamp for the fluffy and distracting writing style, it was a helpful book in reminding me to always be thankful and noticing all the small gifts God gives.
2. It’s normal to grieve the loss of the self I thought I was.  I am learning to embrace that my identity is not in what I do, but in who I am.  It is a constant battle for me because I’ve always been a doer and a perfectionistic one at that.  I have to be okay with a messier house, an overgrown yard, and having less energy to be creative.
3. “No” is a difficult word for everyone.  I don’t know how many things I had to quit because I was just too tired and felt too bad.  These were things that I really loved.  But overall, it was freeing to having fewer expectations.  Speaking of which…
4. Good friends hang around without expectations, others only call when they want something.  There were so many times that people asked me to do something for them and I told them “no” with the explanation that I didn’t feel well enough.  And after saying similar things to, “I’m sorry you feel bad,” they would many times end with “but could you still do this very quick little favor for me?  It’s easy.  It shouldn’t take long.”
5. It’s okay to ask for help.  I suppose it goes along with being a doer, but I’m not good at asking for help.  I’m still pretty bad at this one, but through necessity, I think there is slight improvement 🙂
6. Humility.  This word takes on a whole new meaning when your brain and body are completely unreliable.  I quit softball because I felt so badly during games and could not focus enough to know what was going on.  I had difficulty playing piano because either my hands were arthritic or I would have days I could not focus enough to read the music.  I was not able to sing much for several years because I was constantly sick with other illnesses.  The most humbling part is constantly feeling stupid and knowing that I’m not that dumb.
7. Looks can be deceiving.  I don’t know how many times I’ve heard, “You don’t look sick to me.”  I never know if people mean they don’t believe me, or that it’s all in my head, or they mean it as a compliment.  For a long time, before my diagnosis, the only way that certain doctors believed me was that I ran a non-stop fever for three years.  The picture at the top of this post is a good example. I don’t look sick, but I had a high fever, was dizzy and still had to hike the rest of the six miles down the mountain.

So there you go.  Whew.  I’m glad to have this post finished 🙂