It was breath of fresh air when I could say ‘I can’t help it, I’m not falling asleep deliberately’
THEM BACK
AT his lowest ebb it had drained his will to live, but now Scott Norman can say of his little-understood medical condition: “It’s a part of me and always will be.”
Scott, 20, of Thurnby, feels he has finally found his place in the world after being diagnosed with narcolepsy. After years of struggle, he says things are finally looking up.
He has spoken of his diagnosis in a bid to raise greater awareness of the disability, which is sometimes known as the sleeping disease.
Diagnosed seven years ago, he believes there are many more people out there suffering in silence.
He is now keen to normalise narcolepsy, something he feels people shouldn’t hide away from.
His journey to this stage has also seen many highs and lows - something he believes people should be aware of too.
Always described as a sleepy child at home, Scott’s difficulties in staying awake came to real prominence in Year Seven at school when he started falling asleep in lessons.
The situation was so bad that one teacher told Scott’s mum Jenny that she needed to take away his PlayStation, believing that was the cause of the youngster’s sleepiness.
As the spells continued, Scott went for a series of tests. At first, doctors believed he had Vitamin D deficiency and then iron deficiency, but when medication did not work, they were puzzled.
Scott continued to push for testing though, and neurological experts in Oxford explored the possibility of narcolepsy.
“I knew it wasn’t normal, there was something not right but I didn’t know. No-one did,” he said. “I was on medication for iron and vitamin deficiencies, but I was still sleeping a lot.
“When the doctors began to look into narcolepsy, it felt like it could be the answer at last. But I didn’t know what it was, to be honest.”
Affecting one in every 2,000 people, narcolepsy is a brain condition that causes a person to suddenly fall asleep at inappropriate times.
It is incurable and the reasons behind remain unknown. There are two types of the condition, with Scott suffering from Type 1, which means he also has cataplexy, which affects his muscle control.
It’s a combination that can make every day difficult, as Scott’s legs can give way at any moment. It’s a diagnosis that means he must live one day at a time.
However, knowing what the matter is has brought comfort. Fourteen at the time of his diagnosis, Scott was delighted to have an answer at long last.
“I was the driving force behind getting myself checked and when I had the letter through saying I had narcolepsy it just helped so much,” he said. “I remember always feeling like there was something different about me but we never knew why. This gave me that answer at long last.
“It was a breath of fresh air when I could say what it was and say that I can’t help it, I’m not falling asleep deliberately.” However, with typical teenage insecurities, doubts did creep in about the long-term impact the diagnosis
STUDENT WHO LIVES WITH NARCOLEPSY HELPING RAISE AWARENESS OF CONDITION AND TELLS OTHER SUFFERERS NOT TO LET IT HOLD
would have. Anxieties began to take a toll on Scott’s mental health, something he chronicled in a short online documentary he has made about narcolepsy.
He said: “I just started to question everything around me. I wondered who would want to employ me, be in a relationship with me.
“It got me really down. These thoughts were there a lot of the time and I just slept to keep them away.
“I didn’t tell my parents I was struggling mentally as I felt too ashamed to say it at the time. At my worst I didn’t want to live any more, but I never contemplated taking my own life.”
Scott battled through these dark times, telling friends of his troubles.
He says the stigmas surrounding mental health could mean others similarly struggling don’t speak up, but he believes it is key.
“I didn’t tell my family, but I spoke with a couple of friends and they helped me. One of them, who is now my girlfriend, just gave me the kick up the bum I needed, really,” he said.
“She completely understands me and is so supportive that I can’t thank her enough.”
Now studying graphics and e-media at De Montfort University, Scott has turned a corner in his life. With support all around him from his family, friends and girlfriend, he says the future looks bright once again.
While kids are not on the cards at the moment, the 20-year-old isn’t fearful any more. He said: “When I was at my worst I did think I wouldn’t have kids, but now I think it could happen.
“If I did have children and they did have narcolepsy, I just hope they won’t have to grow up like I did with all the pressures and worries I had because of this disability. I will support them so much.”
While he is on medication for the rest of his life to treat the narcolepsy and cataplexy, Scott knows he cannot rest on his laurels as it is not 100 per cent foolproof.
“I do worry as it’s in the back of my mind that I could fall asleep and miss out on something,” he said.
“It’s happened before and it could happen again.
“I’m not always thinking about it, but there is that doubt in my head that it could happen.”
However, Scott has ways to combat those doubts. Alongside his medication, he regularly takes short 15 to 20-minute naps during the day to try to ward off sleepy spells.
This isn’t always effective, but Scott believes he cannot let the disability define him - or how he lives.
“It’s a part of me and always will be. I will always say I have narcolepsy, I don’t hide it, but I do not let it define me or control me,” he said.
For anyone else who is similarly struggling, Scott says: “Do not let it control you. Identify yourself with it. But do not let it control you as you can do anything in the world.”
I GREW Up 80s celebrates when music was on cassettes, newsagents sold sweet cigarettes and everyone got a Rubik’s Cube for Christmas.
The touring exhibition explores the cultural landscape of 1980s Britain through the eyes of a child, discovering the vibrancy, quirkiness and innovation that defined the decade and there is something for everyone.
We’ve dug through the archives to find a selection of snaps from
the time so pull up your leg warmers or hop off the trick bars on your BMXs because, like Bill and Ted in their phone booth, or Marty McFly in his DeLorean, it’s time for a most excellent adventure.
They don’t make them like this any more!