Fighting to stay awake
LYING rigid on the dancefloor, Louise Downham couldn’t move a muscle. Out clubbing with her mates, she had suddenly crumpled to the ground – unable to get back up.
“I was conscious, but I couldn’t move,” remembers the mum-of-three. “The one bonus was that the entire Cambridge United squad were in there, back in the days when Dion Dublin was on the team.
They waited with me until the ambulance came: all the other girls were jealous!”
The collapse was, explains Louise, a symptom of narcolepsy – a rare and chronic sleep disorder. Affecting an estimated five in every 10,000 people, it’s a neurological condition which causes a wide range of disabling symptoms (everything from extreme fatigue to cataplexy, sudden loss of muscle control).
Diagnosed when she was just 19, Louise has battled narcolepsy all her adult life.
She relies on daily amphetamines – between six and eight tablets a day – to keep her going. And there is no cure.
“You learn to live with these things,” explains Louise, 39. “You have to really, don’t you? And I always said I wouldn’t let narcolepsy get the better of me.
“You have to live your life and make the most of every day. And I’ve got lots to be grateful for – like my three lovely sons.”
Louise first showed signs of narcolepsy in her mid to late teens. Fidgety at school, she admits it was hard to concentrate in class. And, exhausted, she often spent most of the weekend in bed. By the time she got her first job, aged 17, Louise was feeling drowsy almost all the time; as soon as she got home at night, she’d be out like a light.
“Sometimes I’d go to bed on a Friday and literally couldn’t get out of bed all weekend,” she remembers. “My parents would say ‘How can you be so lazy?’ – they got really cross. I lost friends over it too:
when they came to collect me for a night out I was never ready, because I’d have fallen asleep on my bed. “And I noticed that, when I was at work, my writing sometimes started to trail off; it looked like a child’s writing. I knew there was something wrong. And I wasn’t going to give up until I’d found out what it was.”
Referred to Addenbrooke’s, Louise was tested for all kinds of things, from anaemia to hormone imbalance. But, for a whole year and a half, doctors couldn’t get to the bottom of her problems. “You start to think you’re being a div, that you’re going barmy,” admits Louise.
It wasn’t until she had her first cataplexic episode – when her mouth began to twitch uncontrollably – that everyone began to take Louise seriously.
“My mum actually thought I was having a stroke,” she adds.
Then, after a consultation with a student doctor, narcolepsy was diagnosed.
“They did a tissue typing test which confirmed it,” Louise explains. “It was a bit scary; I’d never even heard of this thing. But, more than anything, it was a relief – a relief to finally know what was wrong.”
Sent to a London hospital, for a further two weeks of tests, Louise then started medication: first a herbal caffeine supplement and then, when that failed, amphetamines – the primary ingredient in Ecstasy. “I’ve been taking them for 20 years now,” she says. “They’re Class A drugs, basically. But they enable me to live a normal life.”
Taking up to eight amphetamines a day means the Cambridge mum is awake – and on the go – from dawn until dusk. There are, she says, certain side-effects, such as early morning palpitations. But without the pills, Louise would struggle to keep her eyes open.
When the drugs wear off, in the evening, she becomes instantly drowsy. “Who else do you know that falls asleep eating their dinner?” asks Louise, laughing. “My head just drops and I end up with my chin in gravy or tomato sauce . . .
“While the kids are awake, I’m awake. I manage by being constantly on the go: I can’t sit down to watch telly, not even EastEnders, because I just fall asleep. So I do the cleaning, do a bit of decorating . . .
“The sad thing is that whenever I do get time to myself I can’t enjoy it – I’m asleep.
I can’t have a nice hot bath, or paint my nails, or call my friends on the phone in the evening. The last time I went to the cinema was when I was 15.”
Louise says her health was at its worst when Aaron, her eldest son, was tiny.
Living alone, a young single mum, her drug regime wasn’t working properly; suffering from exhaustion, she developed what she describes as “automatic behaviour”.
Absentmindedly, she did all kinds of things – from putting laundry in the freezer to, on one memorable occasion, drinking bleach. “I burned my mouth, it was horrible,” she remembers. “That was quite scary.”
Since then, medication has helped bring Louise’s condition under far better control. And Aaron, now 15, is, she says, a great source of support. “When I nod off over dinner he’ll wake me up,” laughs Louise.
Louise went on to have two more boys with her current partner: Lee, eight, and Jay, two. She had to stay on her meds throughout all her pregnancies which was, she admits, a real worry; after two decades on amphetamines, Louise says she could be at risk of an enlarged heart herself (and has just had a scan which, thankfully, pronounced her fit and well).
“Without the pills I wouldn’t be able to function really,” continues Louise. “I wouldn’t be able to look after the kids, because I wouldn’t be able to stay awake.”
Lee has ADHD (attention defecit and hyperactivity disorder), meaning he has behavioural problems and is always incredibly active. It’s a challenge for any mum; for Louise it can be totally debilitating.
Thanks to her medication, Louise can drive. But she refuses to get behind the wheel in the evening, because that’s when her pills wear off – and the inevitable drowsiness kicks in. “I know what could happen,” adds Louise. “And there is no way I’d put my kids and other people at risk.”
As well as taking the pills, Louise has learned to manage her condition, within reason, herself. She steers clear of warm, dark environments, which are more likely to lull her to sleep.
And she can pretty much control the cataplexy, which is triggered by emotions, such as anger or amusement. As soon as Louise detects an attack (usually thanks to a tingling sensation) she removes herself from the source of the emotion – and mentally calms herself down.
Although she had to quit work in her early 20s because of her illness, Louise has always been keen to do voluntary jobs:
until a couple of years ago, she was city councillor for King’s Hedges.
“I am proud of that,” she adds. “But I’m a real believer in getting on with things.
Either you get out there and live your life, or you spend it sitting on the sidelines.”
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