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Life With Chronic Fatigue Syndrome Is More Than 'Just Tiredness'

When you have chronic fatigue syndrome (CFS), you don’t just feel “tired.”

The fatigue I experience hits me like a solid brick wall and quickly spreads over my entire body, leaving me with no energy at all. When I tell someone that I have chronic fatigue, they think I’m tired. I am often advised that I’ll feel better after a good sleep. But there are two things wrong with this statement.

First, I cannot sleep. One of the symptoms of my CFS is insomnia or inability to fall asleep. And I spend almost every night literally wriggling in pain and trying to sleep just for some time. Sometimes I don’t sleep at all, lying in the bed and clutching my body tightly because I cannot bear the pain. While other times, when I do fall asleep, it’s usually broken and disturbed.

Secondly, no matter how much I sleep (and I’m counting those rare good days when I get up to 12 hours of undisturbed sleep) or rest, I don’t feel better. The fatigue and exhaustion just never go. They cling to my body like my own skin and no matter what I do or how I do it, nothing seems to help. I feel like my limbs have heavy weights attached because when I try to move them, I can’t. Many times, my body just goes numb.
Crushing fatigue and pain shoots up my body and flows through my veins from morning to night.

It becomes difficult to even perform tasks like brushing my teeth and changing clothes.

But I force myself. I force myself beyond my capacity to at least manage to wash myself up every day.

It’s a strenuous task and it leaves me gasping for breath, extremely dizzy and in a lot of pain. Right now, I’m lying in bed, crying as I write this because I am in so much pain and I’m just tired. My arms hurt badly as I hold my phone in my hand and I cannot even use the speech-to-text option for typing because speaking makes me much more unwell.

It’s difficult to imagine how someone looking so well can be this sick. But this is the truth.

The reality of living with chronic fatigue syndrome is not a sleeping beauty spending a luxurious life in her comfortable bed.

It’s this — a normal girl with an ill body. A girl who is determined to live in spite of the challenges that come her way but, who is too sick to do it. I spend 95 percent of my time lying in the bed because I am too tired to get up. And when people see this, they tell me to “just get up and get moving.”

How much I wish that was possible.

Because if it were, I’d get up in a heartbeat.

I always force myself to do stuff. If I just listened to my illness, I’d be bedbound forever. And the very thought frightens me to bits. So I get up — no matter how painful it is. But what happens after that? I have to pay back, sometimes for days, sometimes weeks.
And the payback often includes even more fatigue and pain.

Chronic fatigue syndrome is a complex, multifactorial illness. It just doesn’t affect one part of the body. For me, its effects are worse on the gastrointestinal tract and the immune system. So, fatigue and pain aren’t the only symptoms I have. They are just the ones I choose to talk about in this post.

For different people, this illness can mean different things and it’s not necessary that if I have extreme pain, the other person with CFS has it, too. This is one of those illnesses that are often overlooked and not taken into serious consideration.

But behind closed doors, there are people — like me — probably like the one reading this — who struggle with the devastating effects of this illness.

And we are all trying to fight, with all the strength we can gather.

One day at a time.

One second at a time.

And we hope and wish for everyone to be kind and understanding and not dismiss our illness as “just tiredness.”

Find me @its_little_ayra on Instagram where I share the ups and downs of my chronic illness journey.

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