What does chronic fatigue syndrome feel like?

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In this short, award-winning animated documentary, Alexandra Hohner illustrates what chronic fatigue syndrome feels like?

[Edited video transcript of What does chronic fatigue syndrome feel like?]

 

What does chronic fatigue syndrome feel like?

Chronic Fatigue Syndrome is a potentially long-term illness, which is not what people tend to think it is. And I think, because of the use of the term Chronic Fatigue, as well as ME (myalgic encephalomyelitis/ME), people only think about fatigue and nothing else.

If they go to the gym or have a day at work and afterward they’re feeling tired, they think that’s like fatigue. It is just not the same thing at all.

You can’t do physical exercise because you haven’t got the energy or if you do it you feel terrible the next day.

It’s the mental side of it.

What people called “brain fog.”

I became very, very sensitive to lights and sound.

And I couldn’t deal with bright lights at all.

I’ve never realized that noise could feel painful.

One of the last times I tried to go out. I decided to go to the theatre with my friend.

And I thought, okay, this might be manageable because I can get public transport there and back, and I’ll get lifts there, and again all I’ve got to do is sit down for an hour and a half.

Right?

And I spend most of my time sat down anyway, so how hard could it be?

I like going to the theatre.

This will be fine.

But by the time we got to the end of that hour and a half, I was absolutely out of it.

I was watching the Tour de France yesterday, and they were talking about the fact that the longer and longer you go when you are riding, bike racing, it’s like you’re trying to do the same amount of work with a smaller and smaller engine.

This is because your body is getting more and more fatigued.

And thinking about it, that’s quite a good analogy.

It’s like I can’t keep talking to you because I can’t get the words out.

I can’t think of the right words.

When you have that kind of a crash, it’s like your IQ being cut, like 30 points being suddenly knocked off your ability to think.

Basically, you go stupid and emotional. I can tell you if it’s coming.

There is a point where it switches over to still feel like I got some energy, but basically, it switched over to adrenalin.

And it’s kinda rushy energy.

Because I’ve actually already done too much, and it’s time to stop.

And to begin with, I would be like, ‘Oh wow, I feel kind of energized!

I can keep going for a while!

This is great!’ and I didn’t realize that the switch has happened.

When I get exhausted, I can’t sleep!

Which is ironic.

I would feel spaced out and wired and kind of like high afterward.

It’s just crazy.

The idea of it…insane…

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Article by
Alexandra Hohner
Caption:

It's the mental side of it. What people called "brain fog." I became very, very sensitive to lights and sound. And I couldn't deal with bright lights at all. I've never realized that noise could feel painful.

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