Ex­pe­ri­ence I slept through my A-lev­els

The Guardian - Weekend - - Contents - Muire­ann Ould

Iwas an en­er­getic kid – al­ways on the go and al­ways danc­ing. Every­thing changed in 2014 when I was 15. I had pushed my­self re­ally hard in my GCSEs, and on the night of our leavers’ as­sem­bly, I did a dance per­for­mance and went to my prom – nei­ther of which I re­mem­ber. For about five days, I had no idea where I was or who I was with, and ex­pe­ri­enced my first panic at­tack. The GP put it down to stress.

Then mum and I left for a twoweek hol­i­day in Ire­land, where I slept for 22 hours ev­ery day. Mum would wake me up to eat and drink, and to go to the toi­let, then I’d be asleep again. I would get so an­gry at her if she tried to wake me. I don’t re­mem­ber any of this – every­thing was re­layed to me by Mum.

After an­other episode of sleep­ing 22 hours a day for five days, and an­other doc­tor not know­ing what was wrong, Mum dis­cov­ered Kleine-Levin Syn­drome on­line. KLS is a neu­ro­log­i­cal dis­or­der char­ac­terised by ex­ces­sive amounts of sleep, al­tered be­hav­iour and a re­duced un­der­stand­ing of the world. All my symp­toms matched and fi­nally, a year after it all started, I was di­ag­nosed by a neu­rol­o­gist at Royal Devon & Ex­eter hos­pi­tal. KLS is very rare – only 1,000 peo­ple around the world have it – and there’s no ob­vi­ous ex­pla­na­tion for it. Viruses, stress, in­jec­tions and head in­juries are all trig­gers, but not the cause.

I was re­lieved fi­nally to have a di­ag­no­sis, be­cause it was frus­trat­ing hav­ing ev­ery­one think I was just tired. From then on, ev­ery six to eight weeks, I would sleep for 22 hours a day in five- to nine-day cy­cles. No one knows how long KLS lasts; ap­par­ently it’s 13 years on average, but there are some peo­ple who have it for decades. I know my symp­toms now: the day be­fore an episode, it feels as if I’m drunk and can’t work out where I am or what I’m do­ing. I get re­ally scared. I even think Mum is a dif­fer­ent per­son. I’m ter­ri­fied some­one’s go­ing to kill me, which is com­mon among KLS suf­fer­ers.

When I am awake in an episode, I might as well be un­con­scious. My eyes are open, but my vi­sion is blurry. It’s as if I am watch­ing my­self from above. Mum says the irises of my eyes be­come al­most translu­cent. All I can think about is how much I want it to be over.

I got good GCSE re­sults, then man­aged four AS-lev­els. But the sec­ond year of col­lege was im­pos­si­ble – I was in for only three months. Ev­ery episode wipes my short-term mem­ory, so re­vi­sion was point­less. I got two A-lev­els, in dance and law, but I strug­gled be­cause of the time I missed, and was even in an episode for one of my ex­ams.

Be­fore my A-lev­els, an episode would fin­ish and I’d re­turn to nor­mal im­me­di­ately, itch­ing to see friends. Now, at the age of 19, my episodes last eight to nine days, and I’m not re­cov­er­ing in be­tween. I never feel present.

My fam­ily and friends are be­gin­ning to be­lieve KLS is a real con­di­tion. I’m wor­ried about friend­ships, though, be­cause I go miss­ing dur­ing episodes. I speak to friends on the phone one day and then I’m com­pletely gone.

Last year, I was of­fered a place at Swansea Uni­ver­sity to study ac­count­ing and fi­nance, but I had to turn it down. My episodes are so un­pre­dictable. We dis­cussed the pos­si­bil­ity of flat­mates help­ing out, but I don’t think they’d re­alise how much look­ing after I ac­tu­ally need. It’s like I’m a baby again.

A neu­ropsy­chol­o­gist at the Royal Corn­wall hos­pi­tal is do­ing cog­ni­tive test­ing on me to es­tab­lish why I’m ex­pe­ri­enc­ing brain fog in be­tween episodes. I’m hop­ing she can help with my short-term mem­ory loss and slow brain pro­cess­ing, too.

I used to try to live as if I didn’t have KLS, and then, when an episode came, I’d just ac­cept it and ride it out. But be­cause I never prop­erly re­cover from my episodes now, it stops me from lead­ing a nor­mal life.

I am, how­ever, learning how to deal with it – I try to get out a cou­ple of times a week, and can just about fig­ure out where I am and hold a con­ver­sa­tion. I have to take it one day at a time.

Do you have an ex­pe­ri­ence to share? Email ex­pe­ri­ence@the­guardian.com

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