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Chronic Fatigue Sydrome: 10 Things People Misunderstand About This "Fatigue"

(written for EmpowHER.com http://www.empowher.com/chronic-fatigue-syndrome/content/chronic-fatigue-syndrome-10-things-people-misunderstand-about-fatig)

I think we can all agree that Chronic Fatigue Syndrome is a stupid name for an incapacitating illness. I think we can also agree that it is exceedingly misleading to the casual observer.

Here are ten things that are often misunderstood about the "fatigue" of Chronic Fatigue Syndrome.

1. This Fatigue is not the same as tired.
I'm not tired. I run out of energy, but it doesn't make me drowsy. It floods my nervous system with static and it makes me bump into things. It distorts my vision, erases my memory and renders me incapable of speech or understanding, but it doesn't make me tired.

Tired is a sweet curled-up kitten by the fireplace. CFS "fatigue" is a juggernaut dragging me in a free-fall through empty space, while everything I love goes to smash.

2. This Fatigue is not the same as lack of energy.
When CFS "fatigue" hits, it can leave me unable to get up off my face. I may not be able to stand up for more than a minute or two before feeling like I'll fall down.

Then it's time to find a flat surface like a bed and become limp while trying to get enough air, and maybe make the shaking stop.

3. This Fatigue is not the same as sleepy.
For years, when I was my sickest, I never got sleepy though I had to sleep most of the day. Instead, I knew it was time to go to bed because I was vibrating.

My face was numb. My hands and fingers were too clunky to operate. My arms, hands and face tingled and burned. I couldn't fathom what anyone said, and couldn't think a thought to completion.

4. This Fatigue is not the same as depressed.
When I was very ill, I spent far more time angry and frustrated than I ever did depressed. Because I WANTED to do things. I wanted to see people and be involved in life outside my bedroom.

But I couldn't. Because CFS "fatigue" had stolen my ability to move, think, and communicate.

5. This Fatigue is not the same as exhausted.
We're going way beyond the normal experience of exhaustion here. CFS "fatigue" makes breathing a full-time job. It causes me to gasp for air, and it leaves me unable to lift my head. My strength is liquefied.

6. This Fatigue is not the same as lethargic.
Lethargy implies disinterest. But we have a powerful desire for life, we just have no ability -- physically or mentally -- to do anything about it.

Picture us in a body cast, and maybe you'll get the idea.

7. This Fatigue is not the same as unmotivated.
See, it's not the desire that's missing, it's the ability to make our bodies do our bidding. Our brains may be too dysfunctional to even be able to think about what we want but at all times we do know that we want -- OUT!!!

8. This Fatigue is not the same as ... fatigued.
CFS "fatigue" is a multi-system breakdown, affecting the nervous system, the endocrine system, the immune system, the digestive system and the cardiovascular system. There are more but that sentence is already too long, and I'm sure I'm losing people.

Suffice it to say, systems are not working right, and they are bumping into other systems that normally they should flow seamlessly with.

9. This Fatigue does not pass after a few days' rest.
Think back to the last time you were recuperating from a severe case of the flu. Now, try to imagine that lingering sickness, that time of no-life, stretching from a few weeks to months. And then, to years.

10. This Fatigue is the stuff of night terrors where you're trying to wake up and save yourself, but you can't.
This is no well-mannered "fatigue". The relentless force in this waking nightmare is destroying everything you hold dear, and all you can do is lie helplessly watching as your life shrinks. And maybe disappears altogether.

Comments

Yeah, you summed it up well. It's just that people who don't have it, they have no concept of it. It's like trying to tell someone there's a world in the universe that doesn't have a sun and it's always night. Unless they experience the darkness, they have no concept.

I think that's the worst part, people just don't understand that we can't just take a nap and be okay. Or a few days rest and be right as rain again. It doesn't work that way. I've never been able to make anyone who doesn't have it understand the depth of how bad this is. Plus, it carries a million other symptoms with it. It's not just a disease of being tired.

I hate it when people tell me to just "push through it". There's nothing to push with. The energy is not in the cells. They just don't get it. If there's no more gas in your car or no more energy in a battery for your ipod, that's it. And if there is no gas station and no place to replace or recharge your battery, you are stuck.
 
Yup. I am exhausted. But I can't sleep. I can't talk on the phone today, but I need to talk to someone. How do you make someone understand that? That there is a dichotomy going on? I need someone, but I am too tired to be with someone for more than a short time.

That I am brain dead, but yes, I can still look decent.

That GOOD stress makes me sick. I don't know if I was well if I would understand that. That's hard to understand. That hearing great news and getting excited makes me sick. WHAT?
 
Thanks Carrigon, Lisa and pamb, for your unified chorus of encouragement.:Retro smile:
 
The Spitfire;bt3208 said:
Yup. I am exhausted. But I can't sleep. I can't talk on the phone today, but I need to talk to someone. How do you make someone understand that? That there is a dichotomy going on? I need someone, but I am too tired to be with someone for more than a short time.

That I am brain dead, but yes, I can still look decent.

That GOOD stress makes me sick. I don't know if I was well if I would understand that. That's hard to understand. That hearing great news and getting excited makes me sick. WHAT?
Spitfire,

I know. And sometimes the only comfort has been knowing that I am not the only oddball with a weird set of symptoms and behaviour because of a mysterious and suspect illness.

Knowing all you other oddballs:Retro tongue: are in the same boat and it is NOT my imagination because you all are down with the same stuff.

And you all understand. Even though it is all weird.
 
Excellent points y'all, and this isolation stemming from people around us being clueless as to what we go thru every day, is the hardest issue for me. the hardest part for me is trying to fake happiness for the benifit of others, when I just want to go in a corner and be left alone. Other than my immediate family, no one else knows I'm even sick. It would take so long to explain this journey to someone, I would lose them by the time I got to 1990! But you can bet your bippy, that when all this becomes national, Im going to soak up every bit of sympathy like a sponge, I/We deserve every bit of it!
 
jimbob;bt3220 said:
Excellent points y'all, and this isolation stemming from people around us being clueless as to what we go thru every day, is the hardest issue for me. the hardest part for me is trying to fake happiness for the benifit of others, when I just want to go in a corner and be left alone. Other than my immediate family, no one else knows I'm even sick. It would take so long to explain this journey to someone, I would lose them by the time I got to 1990! But you can bet your bippy, that when all this becomes national, Im going to soak up every bit of sympathy like a sponge, I/We deserve every bit of it!
Jimbob,

The isolation is terrible. One of the worst things about this illness.

I'm looking forward to the day that cfs is brought properly into the light and gets the attention it deserves too. We'll all soak it up, it's been a long dry wait.
 

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