A Bed Time Story

There was once a young girl called Tamsin.
She didn't have a wicked witch of a stepmother
She didn't have two ugly trolls for sisters
She didn't have seven vertically challenged men for friends
She didn't even marry a handsome prince (though her boyfriend was as prince-like as they come!)
She was 18 years old.............

So what should she have been doing? Clubbing? Working? Shopping? Pubbing? Attending college? Partying? Gossiping? Having the time of her life?

But what did she do? Sleep, sit, lie, listen and watch.

She could not work or do the clubs - if not extra especially careflil with alcohol, she would land herself back in the Paramedics care. And though she could occasionally go shopping, she needed someone to take her and push her wheelchair. At a time when independence ought to be growing steadily, her reliance on other people was stifling and she couldn't help feeling a burden.

But why? This girl had M.E (Myalgic Encephalomyelitis). It is collectively known as Chronic Fatigue Syndrome (C.F.S) or Post Viral Fatigue Syndrome (P.V.F.S)

Alright, so what does that mean? Most people think it's just about being tired.
Others think it's all in the mind. It's not...

So what is it? No one actually knows for sure and even the Fairy Godmother can not wave her magic wand to make people better. With over 150,000 affected in the United Kingdom alone, it is definitely not just make believe.
Reduced blood-flow to the brain causes a whole array of unpleasant symptoms.
But even those with a great imagination can not imagine how it feels. She often looks perfectly fine and they assume she is feeling great but the truth be told, she can not even remember how it feels to be well. So she smiles through the pain - she doesn't like a fuss.

So what does she feel? Every day, she wakes with a "hangover".
She experiences dizziness, headaches, chest pains, palpitations, tachicardia (rapid heart-beat), abdominal pains, severe muscular pain and weakness, excruciating limbs, swollen glands, sensitivity to light - she often wears sunglasses inside the house, even at night!

She is sensitive to sound - the slightest noise can echo painfully a thousand times....
She experiences temperature disturbance and shivers and shakes when wrapped up warm and sometimes has to wear a hat and gloves in bed! Other times however, she feels like she will explode with heat even when wearing next-to- nothing!

Then there is exhaustion, far beyond anything ever experienced by any healthy individual and dreadful malaise and fatigue following the slightest mental or physical exertion.
She suffers panic attacks and hyperventilation, severe shaking episodes, extreme weakness in hands, arms and legs - she frequently can not hold a pen, type, brush her hair, undress herself or clean her own teeth.
She suffers ear and eye ache, terrible nausea, loss of appetite, weight change, insomnia, cognitive difficulties - she finds it hard to concentrate and often can not understand what is being said to her, sometimes she must read the simplest sentence over and over until it makes any sense at all.

She can not walk far without her walking sticks and often collapses when her legs buckle beneath her.
The only way for her to climb the stairs is to crawl -
Not at all degrading when one is eighteen... And that's only the half of it

If there is no cure, what does she want?
She wants to raise awareness and understanding for her story and many other people's lives.
It is not make-believe, for, unlike sleeping beauty, a simple kiss will not revive the unfortunate victims.
If that were the case, her handsome prince would have cured her long ago but even he can not help. Like the others, all he can do is watch and feel helpless.
All she wants is for people to understand how she feels - she is NOT JUST TIRED!

But she smiles to make the passers by feel better,
for she knows that one day she will reach the top of the beanstalk and she will be a stronger and better person for it.. This is not another fairy tale.

The severity of symptoms varies greatly from person to person.
They can also vary hour to hour, and from day to day.
This makes it hard for a person with ME to plan things in advance, as they have no way of knowing whether they will be well enough when the time comes.

Telling a person with ME that they look well is guaranteed to make them feel fed up!
This is because they may look well, but they sure don't feel it!

If you want to know how the person is, just ask them if they are having a good day today!

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