Staying Awake My Life

Imagine feeling tired all the time.

You going to get up, pet? You need to get up, honey.

Losing control of your muscles and collapsing when you get the giggles.

All right?

Feeling different from all your friends

and knowing they can never really understand.

Some people just think it's just a normal problem, but it's not.

Hoping that one day, you'll meet another child like you.

Good morning, guys.

There's nothing nine-year-old Harry loves doing more than going out on his horse.

But a couple of years ago, something strange started happening.

When I went out riding, if we were about two minutes

into the ride, then I'd just fall asleep...

Yeah, on the horse, and then I'd fall backwards.

Bella!

Harry has narcolepsy,

a condition where you feel so tired during the day,

that you cannot stop yourself from falling asleep,

no matter what you are doing.

Good boy.

It's very scary. Cos I didn't realise I was actually doing it.

It was just...

It's almost like you pass out on him,

so you fall asleep and then...

you just go straight into... You just start dreaming instantly.

Even if I had something to do

and I was playing on something, I'd still go to sleep.

I dunno, it's like it's controlling when I go to sleep and when I stay awake.

Take your tablets, sweetheart.

-Are you going to sleep in the lounge?

-Yes.

Now, Harry doesn't fall asleep as much,

because he takes tablets to keep him awake.

But he still needs an afternoon nap after a morning on his horse.

Darling, you've had your half an hour.

Do you want a bit longer or do you want to wake up?

Have a think about it, but your half an hour's up now, it's up to you.

He definitely needs his sleep today.

But he...

Sometimes he just doesn't like to admit that he's actually tired.

-Do you want to wake up now or not?

-I can't get up.

Want to get up? Just wake up slowly, then.

Matthew always times him for his half an hour.

-Don't you, Matt?

-So I can play with him before it rains or something.

Well, also you get bored waiting

and you promise Harry that you'll only let him sleep for half an hour,

cos sometimes Mummy leaves him to sleep for longer.

-OK?

-Yes.

-Nice sleep?

-Yes.

Harry found out he had narcolepsy a year and a half ago, when he was eight.

He has never met anyone else who has it.

It makes me feel...different.

It makes me feel...

..like there's no-one else really that...

..is completely like me,

who can understand what it's like to have it.

Some people just think it's just a normal problem, but it's not.

Although Harry doesn't know it, 150 miles away in Nottingham,

there's another boy who understands just how he feels.

It's not just tired. It's literally exhausted. That's what it is,

it's so exhausted that you HAVE to go to sleep.

13-year-old Luke was diagnosed with narcolepsy two years ago.

Still tired though.

No-one would, like, take me seriously.

Children used to laugh at me and think,

"Oh, I'll have that, I want to go to sleep all the time in lessons.

People still say that.

Luke has lived with narcolepsy for so long,

that he thinks he can help younger children like Harry to cope.

If they just know someone else has got it and someone else

can give them advice that it is, like, not just them

and they're not just different

and it's just them who fall asleep and that,

it might make them feel a little bit better.

Falling asleep during the day is just one of the things

that Harry has to put up with.

-How much do you want, Harry?

-I'll have two slices just for now.

Even laughing is a problem.

When he finds something really funny and he laughs hard,

his muscles go all weak and he collapses.

When this first started happening, Harry's parents filmed him,

so they could show his doctor.

When I looked at myself, I thought, "Is that really what it looks like?"

And it's so...

I really didn't like it. It was really scary.

If I start laughing, if someone makes me laugh,

I will lose control of my muscles and sometimes collapse on the floor,

or just can't move and then I've got to sit and wait,

for ten seconds or so until I've got my energy back

and I can stand back up again.

As well as taking tablets to keep him awake during the day,

Harry also takes medicine to stop his collapsing attacks.

But he does still get them,

especially when he's messing about with his brother, Matthew.

-All right?

-What happened there, then?

All right?

OK?

Put you down, then.

My brother, he made me laugh, and it's basically, just like, suddenly,

I lose control of all my muscles in my legs and my arms,

and I flop over and my head goes down like that,

but it's nothing serious, it's not like I'm really injured,

it's just... But I can hurt myself sometimes when I'm doing it.

If it gets really bad, I can't open my eyes at all or it's hard to breath.

-But it is quite traumatic to see it, isn't it, Harry?

-Yeah.

When your muscles go all weak like this, but you are fully awake,

it's called cataplexy.

The attack can last several minutes or just a few seconds.

Cataplexy is something that Luke knows all about.

The cataplexy attacks would happen at any time or any day, normally,

but the worst ones would happen when I laughed,

so it would be brought on by strong emotions,

which obviously cos I am quite a cheerful guy,

a positive guy, would be laughing.

The solution that I found was don't laugh.

So for about a year, I didn't laugh at all,

unless something was really, really funny.

But now, Luke only gets very mild cataplexy

and doesn't usually drop to the floor.

Oh...

I can't even move.

-Go and sit down, mate.

-It's not as bad now.

I did have to change who I am, just to deal with something,

but now, I can be myself again, which is pretty good.

Well, more than pretty good!

In Slough, ten-year-old Kailan also knows how embarrassing

falling to the floor laughing can be.

Like Luke, he was diagnosed with narcolepsy two years ago.

Sometimes, I just dropped to the floor for no reason.

I'd be wondering why that happened.

Like, my legs would just drop to the floor,

like they're feeling OK and then I'd just be paralysed.

Last year, Kailan was like laughing a lot and a lot and a lot

and falling down.

He went like that on the table and his face went all red.

And he starts crying and stuff, but he's crying because he's laughing.

Children like Kailan, Luke and Harry

have a much smaller amount of a certain chemical in their brain than other people.

But no-one is sure what causes that to happen.

Even at the sleep clinic in Oxford where Kailan is being treated,

he has never met another child with narcolepsy.

It's usually adults who have it.

So, it's not long that I saw you last, isn't it?

Just a few weeks ago. How have you been?

-I dunno. My mum knows.

-Last time, sleep was a big problem,

sleep was very disturbed.

Sleep is still pretty disturbed.

'It is so scary. Because some of the symptoms are so difficult

'for children to explain to parents.'

If your sleep is disturbed, you're having nightmares,

you don't immediately think of narcolepsy.

Even the cataplexy, you don't have to fall to the ground.

It may just be a wobbly feel and children may find this

very difficult to explain, so it takes some time to be able

to get through the full history, to make the clinical diagnosis.

We've not really had the arms and the legs.

Kailan, have you had that lately?

Not in a very good mood today, are you, Kailan?

Shut up. You're going to make me laugh!

For Luke, it was hard to convince anyone that he had a problem.

When we first went to the doctors and that,

they just thought it was hormones and teenager...

Just normal for a kid my age.

When the doctor told me it might be narcolepsy,

I burst into tears and my mum was like, "It's OK,"

and I explained I wasn't crying because I was that sad,

it was just relief that someone finally believed me.

Even though Harry sleeps a lot during the day,

he finds it difficult to get a good sleep at night.

Tonight, he is very restless and is woken up by a bad dream.

HE CRIES

I had quite a lot of nightmares...

I still do now, sometimes.

I wake up screaming, or, like yesterday, I was crying,

because there was something emotional that happened in my dream.

Luke also knows how terrifying the nightmares that come with narcolepsy can be.

It made me feel quite insecure.

I used to associate stuff with ghosts and that

and dad would be like, "There's no such thing as ghosts,"

but I'd think, "So why's it only happening to me?"

Cos I thought it was real. I'd be like,

"Why is no-one else seeing this?"

You ready for your tablets?

Come on, it's bedtime.

-I'm just going to defeat one more person.

-No, Kailan. No, no.

Kailan takes a tablet at night to help him sleep.

-Sit up for your tablet, please.

-Don't want my stupid tablet, Mum.

-Cos you're getting tired.

-No, cos I hate you.

Then in the morning, all the boys take tablets to keep them awake.

Cheers.

All right. You've got about ten minutes, yeah?

Tablets in hand.

HE MUMBLES SLEEPILY

Hmm?

I put it on my lip

and then, when I'm ready...

..I flip it in and then swallow it.

But the effects of the tablets do wear off as the day goes by.

And that's when moods can change.

One minute, Harry's playing with his brother, Matthew.

The next, he's tired and grumpy.

He ruins everything that I have to do.

He's only trying to make you laugh so you can't play with him, isn't he?

-Yeah, exactly.

-Oh, come on.

We're going inside. Come on.

When he's playing football, if he's around in the midfield,

then he'll probably just fall over if someone makes him laugh.

I can't, cos he's always doing stuff to make my problem worse.

-Does somebody hold him up when he laughs?

-No.

You hold him up though, don't you, when he laughs sometimes?

It's a lot of pressure for Matthew.

He worries about him all the time.

You can see it's obviously affecting how he feels.

You do love him really, don't you?

It's nice that you care about him.

Eh? Eh?

-You do care about him, don't you?

-Yeah.

You're a good brother to him, really, aren't you?

Cos you're always looking out for him, aren't you?

-Can I go and get a drink?

-Of course you can, darling.

The tablets the boys take do help to control their narcolepsy.

But like all medicine, they can sometimes cause other problems.

These are known as side effects.

At night time, I get really hungry.

I don't know why. My mum says it's possibly because of the medicine.

And I get up, maybe get a pancake...

crisps, or ask for noodles, things like that.

Noodles at this time of night would be really crazy.

I keep getting up and sometimes my sister or Mum

can't get to sleep, cos they keep hearing me walking about.

It's the middle of the night

and Kailan has been asleep for two hours.

He had a snack before he went to bed, but he's already hungry.

It's five past 12 and the munchy man is hungry.

He likes his munchies at night.

It is his first time, but hopefully, it'll be the last for the night as well.

He has to make his belly feel full.

When Kailan goes looking for food in the night,

his mum always gets up too.

Come on, then. You eat up before you go to bed.

She doesn't like him to eat his food on his own,

in case he falls asleep and chokes.

-Back to sleep.

-Kailan, go to sleep.

Straight back to sleep.

What if there was a break?

-OK, night-night.

-Night, Mum.

Mum, Mum-Mum. Mmmm.

Three hours later, Kailan is hungry again.

Even though he is exhausted, the urge to eat is overwhelming.

It does affect me, but I don't notice it.

To me, I don't notice anything. I just think I'm normal, because I can't tell.

What's that face for?

But getting up with Kailan up to four times a night

really takes its toll on Kailan's mum.

Harry, night-night.

You try and sleep well tonight, OK?

Like Kailan, Harry also used to get up in the night to eat.

But his doctor told his parents to take drastic action

to put a stop to Harry's night-time munchies.

I can get hungry and if I can find anything, I will snack on it.

You do get hungry at night, don't you?

I still do a bit but not as much,

because Mummy's locked up the kitchen,

so if I try and get in, I can't.

And she's locked the end door as well, so I can't get in that either.

Initially, he was still trying to get in. In the middle of the night,

we could hear him trying the door.

But since then, he's got used to it.

So he will very often still get up,

but very often he'll just get back to sleep

and carry on through the night.

It's helping a lot. I get a better sleep at night,

because when I'm awake, I'll be awake for 15 minutes,

but I'd wake up about five times,

so it'd be altogether about an hour I'd be awake.

But now, if I wake up, I know I can't get in so I'll just...

Cos I'm still a bit woozy where I've just woken up,

I can just go straight back to sleep again.

As a parent, you feel it's a really tough thing to have to do,

locking your children out of the kitchen

is quite an extreme thing to do,

but in the circumstances, it's definitely for the best.

After a night tossing and turning,

getting up in the morning really is a struggle for Kailan.

I'm trying to get Kailan up for school.

He's had his breakfast, but fallen back to sleep,

so I'm going to call him again.

This is a regular routine.

I shall eat mine and then go back in and call him again.

Hopefully, we'll succeed.

You need to get up for school, honey.

-Stretching!

-Don't shout.

Sorry, Mummy. Stretching, Mummy.

Angry cos when you wake me up, it makes me angry.

Sometimes with me, even if my mum tells me to get up, I can't.

I'm too tired to literally get up.

And I'll have to stay in bed for a little bit more,

to get energy to be able to get up.

Come on. Don't get upset with me.

HE MOANS

I feel sorry for her, because I'm being nasty for no reason

and I don't mean it.

Sometimes I go tell her "I'm sorry, I don't mean it," and she says "OK."

-You've got to let me sleep.

-But it's half eight...

you're supposed to be in school in a quarter of an hour.

You haven't done your clothes, your face...

-Cos you're in here.

-OK. So, you're going to get dressed now?

-When you go away.

-OK.

Eventually Kailan's mum gets him out of the house and in the car.

But he's not awake for long.

Harry has told all his friends about his narcolepsy

and most children at his primary school know about it.

It's nice, cos I've got a lot of support from Harvey

and some of my other friends as well.

So it's quite nice to have someone to...help.

When he gets cataplexic,

I sometimes think he's going to like suddenly fall over.

And I get a little bit scared.

Harry feels so relaxed about people knowing about his condition

that after lunch, he is quite happy to go

and have a lie down in the staff room.

I had a really bad night last night.

I had a really bad dream.

Well, a lot of...

My mum didn't have a good night either,

cos I kept calling her down, because I had really bad dreams.

So, hopefully I'll get to sleep today.

So while the rest of Harry's class are reading,

Harry has a little snooze.

He does extra reading at home to make up for it.

Things are a bit different for Luke.

Until recently, he had only told one or two people.

Very few children at his secondary school know.

I don't have a problem with people thinking I'm different,

because I am different, a lot different

but it's...just the questions that I don't want to answer.

Luke relies on his tablets and will power to keep himself alert at school,

but by the last lesson, he's really struggling.

-I've been on the first page for the past 15 minutes.

-Do you just keep reading it over and over?

-Yes.

Do what you can.

I try my hardest to get through the day at school and then,

as soon as I get in the car to drive home,

for that split second, I stop trying,

I'll fall asleep, ten seconds, I'll be asleep.

Tired and grumpy.

-Dad, Ryan and Georgie's coming tonight.

-Shut up.

-Dad.

As soon as I've had that sleep,

I will still go in the house and have another sleep, for a good hour or two hours.

Which is a daily basis.

Usually he'll take his blazer off at least, but this time,

he's just gone to the bedroom and gone to sleep.

So... But yeah, it's normal.

He can't think of anything when he's like that,

he just has to go to sleep.

He'll have his tea a bit later on, probably on his own,

because everybody will have eaten by then.

Harry, Kailan and Luke have had to learn to cope with narcolepsy on their own.

It's been hard not knowing anyone else.

But today, all that's going to change.

I feel quite happy and excited about seeing the others.

Hello, Harry. Give me a high five.

-Look, it goes in height order.

-Yeah!

-Luke, when you get nightmares, do you ever wake up saying stuff?

-Yeah.

-Screaming and that?

-Yeah. It's actually quite scary.

-Mmm, very.

-Sit here.

-Let's go in size order.

-This is what I'm on.

-Is that your tablet?

My tablets are the same size, but a different colour.

Do you take two?

I don't have that, I only have one for...

To wake up... One to make me fall asleep and one to make me wake up.

No, I have one in the morning, one at lunch and one in the evening, which is like a capsule.

-It's kind of rubbery outside.

-Yeah, yeah.

-When I get cataplexy and I'm laughing, my eyes sort of go like that.

-Yeah!

-Yeah, they do.

But when you just get narcolepsy, they say that your eyes are closing,

but they're like going like that, but you don't recognise it,

you think you can see everything perfectly and they say it's closing.

-Yes, cos like, you get sick from sleeping.

-I think it's boring - sleeping.

-It is.

When you were younger and you had narcolepsy and cataplexy,

was there anything different about when you're older?

-You get more used to it.

-Yeah, it's easier to cope with.

-Well...

-In a way.

-Yeah.

I don't think I have narcolepsy, I don't feel any different.

-See you, Harry.

-See ya.

-All right, see you.

-See ya!

Meeting the others has been quite helpful

and nice, to know someone that has narcolepsy.

It was very good.

We shared our feelings, so when we were asleep, what dreams we get...

When you suddenly wake up, what it's like.

Yeah, we talked about cataplexy, narcolepsy, illusions,

all sorts and it was fun. I liked it.

Even though they are a bit younger than me,

having that one thing in common has helped to kind of...

Because you already know them, kind of thing... It's like you're already mates.

Good to meet you. 'Hopefully they can keep in touch.

'And as they grow up, they can help each other with their conditions'

and give each other a bit of support, which will be really nice.

I did feel like I was on my own at first,

-but now I feel there's more people like me.

-Been a pleasure meeting you.

There is no cure for narcolepsy.

But Luke, Kailan and Harry's new-found friendship will help them to cope.

They've already had another day out together

and are keeping in touch online.

To be honest, I don't think about the future,

what I do is, think about now and deal with it.

One day at a time. That's what I'd say. One day at a time.

When I'm older I might be able to cope with it better,

because I will be...

more evolved and more used to it.

# Oh, my life

# Is changing every day

# In every possible way... #

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