March 4, 2019

The Beginning

I’m not sure how to start this story, but I suppose at the beginning would be a good start! Making jokes already, ah yous are in for a treat.

I suppose I could tell you a bit about why I called the blog its name.  For those of you that are a fan of Coldplay, in particular ‘Paradise’ you will recognise the line immediately. Coldplay have seen me through the best of times and the worst of times. The best being Croke Park in the Summer of 2017 when I seen the band themselves, danced with a packet of Tayto crisps in my hand and generally loved my life.  They’ve been there for the dark times too and I suppose this blog is a mixture of the dark and the light with the intention of providing some light for someone else in reading my story. Anyway, why Paradise and why the girl who ran away in her sleep?

My earliest memory is of Christmas Day, I am awakened by my older sister who informs me that it is 1pm, Santa has been and it’s DEFINITELY time to get up. I think I was about 3 or 4 years old at the time. My other siblings (five of them) have been up since dawn, my brother has claimed the tv (the fecker) and has probably had a good poke at my Santa presents too. I was gonna bracket some more jibes about him at this age but it was too long so here it is: NOTHING was sacred with that boy, no I will never forgive him for eating my Easter eggs circa 1998 because I was sick. I had a special SPICE GIRLS egg, that kinda stuff wasn’t your standard old Cadburys but down his gob it went and when I was better I had no Easter eggs left to eat the little shit.

ANYWAY.  I get up reluctantly and pull myself out of bed. I’m exhausted even though my mammy had me in bed extra early for Santa but this feeling wasn’t unusual. My mammy would tell everyone how great of a sleeper I was and how I could sleep for hours on end, an easy child to manage and not a bother at all to her.  In later years, my sister who now has children of her own told me ‘If you had six children and one was sleeping wouldn’t you be happy too??’ I agreed, nap times for young children are the time a parent has to catch up on their own stuff or just clean up the path of toy havoc they created. Besides, doctors or health visitors didn’t think anything was wrong so she battled on with her little sloth-like child, prodding me on when required.

Fast forward to starting primary school. We lived in the countryside which meant that you could still get an Ulsterbus to school but only 10 – 15 people were on it.  I distinctly remember we got a bus to school with a super enthusiastic bus driver. Looking back I think maybe the guy missed out on being on Sesame Street or could have been the 90s Mr Tumble. One particular morning the bus driver shouted ‘If you are excited for school today put your hand up!!!’. Everyone else waved their hands in the air and I sat arms folded, still huffing with the morning. 

You see, before this my morning looked like this : Mammy woke me an hour before we left for school. As she came in, she did the usual opening of the curtains, turning the light on, and pulled my covers back. I remember clinging onto my duvet for dear life and my poor mammy having to near rip it out of my hands.  I then was helped with my uniform and taken up for breakfast. I remember I used to keep falling asleep on the kitchen table and she would poke me awake, if she had left me unattended I fell back into a deep sleep, unable to be moved.

As I grew up the routine remained the same, I got woke first and monitored until I set foot on the school bus.  I remember her getting so frustrated because even though she had turned the light on and gotten me out of bed there were so many mornings where I was found slumped across my bed with my uniform half on or still in my pyjamas. Frantic, she would scurry me out of bed, put the breakfast in front of me and give me updates of how many minutes it was until the bus arrived.  My brother of course was the model child (after his crazy early years) getting up when she needed him to and still being awake I suppose.  Back then I was so skinny, almost underweight and such a small child.  It makes sense now, but back then she was handing me vitamins everyday. I hated them and in protest threw them into the bin when she wasn’t looking. The look on her face the day she seen me doing it, I definitely wasn’t grounded (what was the point when you lived in the countryside) but she wasn’t too impressed!  Irish mammies are a bit like elephants in terms of memory and parrots because they love repeating what you were at 20 years later so we still laugh about the day she found the vitamins in the bin.

As well as being a sleepy child, there was another thing that pervaded my life at that time (and still does) and that was consistent and regular nightmares. Throughout my life they have changed and taken different forms. When I think about it there are so many things that you decide whether or not to believe in when you are younger and what scares you and what doesn’t.  Turns out, ABSOLUTELY EVERYTHING terrified me. I’ll never forget my brother letting me watch ‘I Know what you did last summer’ after I begged him to and I had horrible nightmares for a week after. I was up with my mammy sweating about the man with the hook and the game was up as I overheard my mammy saying to my brother ‘what did you let her watch she’s been roaring every night since!!!’. I couldn’t play it cool, it was clear I couldn’t handle horror films. Even documentaries about UFOS would be enough to set me off. Like, were aliens real and if they were did that mean they were coming to earth and if so they probably weren’t gonna be friendly if they took us over were they??  Or did I believe in ghosts? Was granny really looking down on me and if so that was super awkward because sometimes I’m not as nice as she always thought I was. This is all stuff that every child wonders about but the difference was that the wondering didn’t stop during the day, oh no. During the night the aliens landed in my bedroom and were taking me with them. I wanted to scream and lash out at them but I was frozen, I couldn’t move a muscle and was helpless as they lifted me out of my bed. I was absolutely convinced that my room was haunted as I could hear people whispering things in my ear but couldn’t see them or worse I would awake to an attacker in my room who was determined to strangle me to death. I remember having a particular recurrence of the same dream where two people were in my room, a mother and a son. I couldn’t see them but I could hear their voices. I would awake frightened and upon hearing the screams, my mammy would come into my room to check on me.  I would give her the play by play asking her if the house was haunted and she would comfort me and tell me (for the millionth time) that no-one lived in our house before us and that they had built the house there and the field was empty before that. This would happen almost every night, not always with my mammy’s intervention.  The circumstances of each nightmare would be different but the feeling of helplessness was always the same. There could be an entirely different blog on the nightmares alone.  I found it hard as no-one else seemed to have the same amount of vivid nightmares as I did.  I was maybe just a little too frightened of everything and that was why. Anyway, it was part of life and I was going to have to get used to it because there was nothing anyone could do.

As I got older and was in secondary school, I would have teachers comment on my yawning during class, calling me out for not paying attention, curtly asking if they were boring me or what was the answer to x, y or z to try and catch me out.  The truth was that I was a good student but I had this heavy cloud of tiredness that I carried around with me on the daily. Along with this, I was such a nervous wee student, barely recognisable from the person I am now (ha!). I would have the answer to a question written in my notebook when the teacher went through homework but I was too nervous to read it out.  I hated answering out in class because what if I was wrong?  I would study hard for my tests and still be very anxious that I wasn’t going to get the result I so desperately wanted.  When I look back, I had to put a LOT of work in. It was excessive, but I think even then I was aware that I needed to overcompensate; I needed to work harder than everyone else. On the lead up to a test I would be so worried and afterwards I worried about my mark. When the result came, my parents would say ‘My God, all that worry for nothing, we aren’t listening to you worrying again’. But to me, I had to worry, I had to keep working harder because it was the only way I was going to get top results.  I was in a strict routine back then, no more homework after 9pm and in bed no later than 10pm, lights out 11pm but even still, the heaviness remained during my waking hours.  GCSE’s came and went and confirmed to my parents, that I worried over nothing and sure I drove them half mad with worry for no reason. The night before my GCSE Geography I was going through my case studies and I took a complete blank. Que MELTDOWN. I think it was about half way through the exams at this point and for someone who was always tired I had enough.

I went to the GP a couple of times when I was around the age of 15-16 years old.  I explained my symptoms but I was told that my iron levels were fine and that it was ‘normal’ for someone of this age to be tired.  Back then you didn’t question the doctor, there was no such thing as Google and if they told you that you were grand then you were and that was it.

I was almost going to go back and edit the above but then I decided not to, because every line can’t be a laugh the same as life can’t always be happy and sunny. This is the reality as it was, bad bits an all.  Sure everyone loves hearing the dark secrets anyway and the part I hide could be the part that someone could  relate to most. If I was looking a career in comedy I’d be at an open mic night getting the free beer for participating and not sitting hunched over my computer balancing a crème egg whilst trying to type.

So this is my story about the girl (me) who literally ran away in her sleep and I hope you bear with me as I unfold the events that lead to my diagnosis. The paradise part doesn’t come for a while..I know i’m being very mysterious about my condition but I want you all to be in the same position as I was back then, not knowing what exactly was wrong and desperate to find the answer. 

2 Comments

  • Enjoyed reading this especially the secondary school bit. I yawned about 100 times a day so i can totally relate. Been diagnosed since 1st September but have been living with this since about 15 id say. Thanks for speaking up x

    • Thanks Aoife! – we have Facebook support groups called Narcolepsy in Ireland and Narcolepsy in Northern Ireland – feel free to join as well 🙂 xx

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