My life changed overnight in 2004 when I was diagnosed with the rare condition of narcolepsy with cataplexy. Just a year after setting up my own company I got in the car one morning and just couldn’t stay awake.
I was tired and a week away from the holiday of a lifetime touring Canada. My GP insisted I was exhausted from the new venture, but I knew something was seriously wrong. At Heathrow airport I could barely stand and when we arrived in Vancouver I suffered a major cataplexy attack as we were going to collect our hire car.
It was terrifying. All the muscles in my body simply gave up and I fell in a heap on the pavement outside the airport. My husband somehow managed to balance me and our luggage on a trolley but I remember trying to raise my arms to put my hair in a pony tail and finding I simply couldn’t. Over the next few days I found I couldn’t walk more than a few steps without collapsing and by day 4 I couldn’t even get to the bathroom on my own.
Finally, on day 5 we gave up and I agreed to go to the hospital, where thanks to an amazing neurologist who just happened to have an interest in the condition we were told I was either suffering from the rare condition of narcolepsy or had a brain tumour. It took a further 3 days to convince Air Canada that I was well enough to fly but by that stage I was unable to walk, and in a wheelchair.
A month later the diagnosis was confirmed, and my life fell apart. Strangely I had feared the narcolepsy more than the prospect of having a tumour - my husband had a colleague at work whose wife had recently had to deal with one and had completely recovered. I knew enough about narcolepsy to know it would be a life sentence. Most marriages don’t survive, careers and even friendships fall by the wayside.
With my driving license revoked my husband was coming home every lunchtime because I was a complete liability. Stairs and even picking up the kettle were practically impossible. Finally, three months later the harsh drug regime of amphetamines and antidepressants were just about working well enough to allow me to establish a ‘new normal’ regime, although the cataplexy was still leaving me sliding down walls and my usual 8 hours of solid sleep had become forever fragmented into 2-hour blocks (on a good night).
Fifteen years on and more powerful drugs hold the cataplexy back most of the time although strong emotions can still floor me. When my brother recently announced his engagement to his girlfriend of 10 years that I adore, well let’s just say mine was the most spectacular response!
I did return to work 3 months after my diagnosis but many with narcolepsy don’t. I love my job and frankly it keeps me going. My sheer bloody-mindedness and a determination to ‘get back my life’ helped me win that particular battle but there have been plenty of fights I have lost too. My relationship with my husband didn’t survive, neither did my size 10 figure. Probably the toughest one to deal with was accepting that having my own family would probably escape me - and it has. Night times can be truly dreadful, I haven't managed more than a couple of hours of consolidated sleep in more than 12 years. When people tell me they are 'really tired' .......well I yawn!
There have been comical moments too - you develop an incredible sense of humour if you fall asleep interviewing staff and in meetings of any length. Thankfully I don’t snore or dribble. (I just know a friend reading this is going to dispute one or both of those!)
Cataplexy seems to affect me at strange times - getting a strike when I bowl is lethal (a spare isn’t quite so bad, and I am thankfully terrible at bowling). I was once awoken by the police banging on my car window after I had pulled over for a nap and forgotten to turn the engine off – they genuinely thought I was trying to kill myself. Then there was the particularly notable arduous journey to work one morning when I pulled over into a bus lane because I literally couldn't keep my eyes open. Unfortunately I was immediately stopped by police who were unimpressed with my explanation that I had ‘taken the maximum number of drugs I could - but it was OK because I was allowed to!’.
So what has all this got to do with medical alert bracelets I hear you ask? (I am getting there - stay with me!)
I have never worn one.
Why? Because up until now I think they have been dull, expensive and in many cases just too obvious. Yes, I want paramedics to know about my condition, but I don’t want to necessarily advertise it to the world. This is despite the fact that narcoleptics across the globe have been incorrectly given seizure medications, thought to be intoxicated with alcohol or illegal substances, suffered fractured ribs and punctured lungs whilst unnecessarily being subjected to CPR.
June Burchell from Sussex even ended up in the morgue three times after being declared dead. She suffers from unusually prolonged cataplexy attacks. Her story can be found here. She wasn’t wearing anything to identify her rare condition – not even the third time! For those of us with chronic conditions, allergies or a serious illness it’s imperative that we alert not only paramedics but our places of work, schools, friends, family and carer-givers. This critical piece of information could be life-saving. I understood the logic perfectly but still chose not to wear one.
Does the story have a happy ending?
Yes! Despite the challenges narcolepsy presents I have carved out a successful career delivering leadership training (and the word is I am rather good at it!) I work with some fabulous business colleagues that are now close friends. My first choice of career was to be an actress. Mum was adamant that it ‘was a hobby rather than a job’ (and she was probably right!) - but I like to think I bring that energy and sense of fun to entertain as well as educate my delegates.
After completely unrelated spinal surgery in July of 2017 when I quite literally HAD to sit down, I could implement my 15-year-old plan to shake up the medic alert world and bring it into the 21st century. Because damn it, it needs it!
I hope I can address the primary function of effective medical alert identification and balance it with items you genuinely want to wear (rather than feel obligated to wear). After all - who wants to be defined by a medical condition?
Vanity shouldn’t trump sense, but we live in a crazy world where it sometimes does. If like me you have so far refused to wear medical ID, then you are all out of excuses!
The Oscars Moment
I can’t write this without thanking my amazing friends and family for their incredible support over the years. They often say they completely forget I have narcolepsy (and I secretly love that but don’t tell them!)
David Pryke (what can I say?) - a long suffering best friend and business partner for 20 years. The man in my life that never fails to pick up the pieces. He somehow managed not to murder me when I dashed off and started this totally new venture with his name on it without even bothering to ask. (My excuse? It’s always better to seek forgiveness than permission!).
A special mention must go to: my training colleagues who pick up the slack when I am struggling, an amazing group of ladies at my choir (girls I wouldn’t have survived without you this year), a certain Virgin pilot I adore (who momentarily stopped chasing 'hostees' to really look after me following surgery), Seb Steel: friend and awesome personal trainer (specialism -'cardio exercise by stealth because Shelley hates it'). Dr Simon Wharton and the team at Heartlands in Birmingham - you have worked with me for many years helping me maintain my quality of life managing this difficult and sometimes daft condition. Last but by no means least, Jeremy Reynolds, a frankly brilliant spinal surgeon who has made me as good as new (despite the fact I was a complete pain in the backside). On the plus side he did get to learn about narcolepsy from a 'real professional'.
Lastly, YES! I am practising what I preach. This lifelong anti-alert wearing girl is now wearing one for the first time in 15 years.
Better still - she made it.
I hope you enjoy wearing yours as much as we will enjoy making it.
✓ Founder of buyamedicalalert.com
✓ Director of Accelerate Leadership Ltd
✓ (…and a girl that just happens to have narcolepsy)