I thought I was just tired, then I collapsed on holiday and my life fell apart

When Shelley Thomas, 48, a leadership trainer from Northamptonshire, fell asleep in her car one day, it was the start of a 20-year battle with narcolepsy, a rare brain condition that means she can't control when to sleep or be awake. But it was after she collapsed on holiday in Canada that she finally received a life-changing diagnosis...

One morning, 20 years ago when I was 28, I got into my car to go to work and found I just couldn’t stay awake. I fell asleep at the traffic lights and woke to somebody beeping me from behind when they’d turned green. I was scared – I had no idea why I was so unusually sleepy, but I’d recently set up a new business, working for BT, so I assumed I was just tired.

Over the next few weeks, I continued to feel exhausted and also began to experience weakness in my muscles whenever I laughed. I saw my GP, who confirmed that, yes, I was likely exhausted from my new venture. But there’s tired and there’s tired.

The following week, my then-husband and I set off on a holiday of a lifetime to Canada and that’s when I knew something was seriously wrong.

I remember saying, "I feel like my legs are going to go from underneath me" and him replying, "Oh, don't be silly, you're just tired."

But then, when we arrived at Vancouver airport, I had what I now know to be my first 'cataplexy attack'. It was absolutely shocking. I remember trying to put my hair up in a ponytail and not being able to, as I couldn't move my arms. All the muscles in my body simply gave up and I fell in a heap on the pavement.

My husband had to balance me on a trolley until he could move me in the hire car. It was terrifying and I had no idea what was happening to me, but I thought it must be some kind of seizure.

A shock diagnosis

The holiday was ruined. We kept trying to go out, but I would only be able to walk about 10 feet, and then I’d collapse and fall to the floor. I couldn't even go to the bathroom on my own.

After seeing a doctor at our hotel in Canada, we were sent to the hospital where, by pure chance, I saw an amazing neurologist who had an interest in sleep disorders including narcolepsy and cataplexy.

Narcolepsy is an autoimmune condition. Healthy cells are incorrectly identified as rogue ones by your immune system and destroyed. The result is a broken sleep-wake switch. Whether it's to sleep or to stay awake, without drugs, the brain won't do either in the way it should.

Cataplexy is a secondary condition, unique to narcolepsy, that causes temporary muscle paralysis, often in response to extreme emotions such as laughing, crying or fear. During attacks, I remain conscious and can hear everything going on around me but I can’t communicate in any way or move until it passes.

The specialist advised us she suspected it was either narcolepsy or a brain tumour. Strangely, I hoped for it to be a brain tumour because the wife of my husband's colleague had recently undergone surgery to remove a tumour. The surgery was successful and their life had returned to normal.

Conversely, I'd seen a documentary about people with narcolepsy trying to hold a board meeting while falling asleep, and, whilst at the time it was hilarious, I remember thinking, "Oh my God, that's really not so funny now." Everything I read said relationships, friendships and careers had been lost to people with narcolepsy. It seemed like a life sentence.

I came back from Canada in a wheelchair because, at that point, I couldn't walk at all. I was effectively stuck in a permanent state of cataplexy. Thankfully, our private health insurance meant that I was diagnosed with narcolepsy and cataplexy within 10 days.

Narcolepsy is estimated to affect about one person in 2,500. The average time it takes to be diagnosed, even today, is almost 10 years. It was only thanks to the Canadian neurologist that I was able to get the help I needed so quickly – narcolepsy is often misdiagnosed as laziness in children, or chronic fatigue and sometimes even epilepsy.

Life forever changed

My life fell apart. My driving licence was revoked, I had to stop working and hand everything over to my business partner when only months into a new venture. My husband had to come home from work every lunchtime because I was a complete liability. I couldn’t manage the stairs or even pick up the kettle to make tea because of the muscle weakness caused by the cataplexy.

Managing narcolepsy and cataplexy requires a harsh drug regime. The cataplexy was particularly difficult to get under control. I spent many of the early days using walls for support, frequently sliding down them to avoid a full collapse.

Finally, after three months, we found a stable and safe routine and I was able to return to work, determined to get my life back. Sadly, there were plenty of fights I lost. My relationship with my husband was forever changed, but I will always be grateful for the care he showed in those early days.

I put on quite a lot of weight because of the drugs, which was tough for both of us. I think he instinctively wanted to keep me at home as he felt it was the safest thing, but I wanted my career back without compromise.

Had we remained together, I would have had a far easier life but, I was 28, I’d just started my own business, and had a sense of sheer bloody-mindedness not to have my future ruined. We had counselling but, ultimately, split two years later.

Sometimes I think it is harder for people around me. Even trying to watch a film together can be infuriating. There are times it can take two or three nights because I’ll fall asleep. My friend will frequently say, "There's literally 10 minutes left, can you not hold on?" but I just can't. If he realises I've fallen asleep and asks, "What was the last bit you remember?" half an hour may have passed.

Sleep triggers

There are certain triggers like eating, being in a quiet room or having to listen to somebody speak for a long time that I find particularly challenging. Fortunately, I don't dribble or snore!

While I'm able to maintain the discipline of arriving on time for work, socially I find it harder. Friends joke that I arrive in an 'adjacent time zone' or occasionally 'on Spanish time.' When my brother asked me to be a bridesmaid, I'm pretty sure he told me the wedding was an hour earlier than it actually was!

Living with narcolepsy and cataplexy is unrelenting. In addition to the drugs, I generally need to schedule at least three naps a day. Eating makes me sleepy so there is a strict 'eat, take tablets, nap' routine repeated three times a day.

Then I have to factor in my work, and how far I will be driving if I'm delivering leadership training. Every day is different and I have to make the right decisions at the right time. Getting it wrong just once could result in me harming myself or somebody else.

Unusual sleep patterns

I often need to nap in strange places. Sometimes, I've pulled over and got off the road but not turned the engine off, and I've had police banging on the windows thinking I was trying to kill myself. I'm currently driving a two-seater 'midlife crisis car'.

Last year, I needed to stop and sleep at a service station, so, I reversed the car into a space, took a rug and a blanket, and got in the boot to sleep – until an annoying kid came over and said, "Dad, there's a crazy woman lying in the boot of the car!"

Night-time is often dreadful. Before, I would sleep for eight solid hours, but now, the most I ever sleep in a block at night is two hours. My sleep is totally fragmented, even with the most powerful sedatives, due to my broken sleep-wake switch.

Cataplexy can be particularly annoying. Sometimes it lasts just a couple of minutes, other times it can be longer. If those around me start to panic and call paramedics, it takes longer to recover. I've had needles pushed in my arms and tubes down my throat on more than one occasion.

Whilst paramedics now widely recognise narcolepsy, they have invariably never had to deal with cataplexy. They simply see an unconscious patient and are primed and ready to intervene. It’s hard to explain that a spectacular-looking collapse is simply my body temporarily 'stopping and rebooting'.

Humour is a big trigger for me. I use it a lot in my work as a leadership trainer. On training days, I am able to take an increase in cataplexy drugs and usually have an additional nap if I have far to travel home.

The sleepiness can be unpredictable. Sometimes I can be within five miles of home but still have to stop to sleep. It’s those last few miles that are the most dangerous for any driver, we almost switch to autopilot and, with narcolepsy, not stopping could be fatal.

I don't have as many usable hours in the day as other people, but it makes me a ruthlessly effective time manager. I only give my time to things and people that are really important to me. When my drugs are at the maximum, if I've got something to do, you won't distract me because I have to use that window. I pick my battles and try to limit them to the ones I will win. You know the value of energy when you have narcolepsy.

Helping others

In 2018, I launched a second business selling medical alert bracelets for people with medical conditions and allergies. After a few difficult situations with medics, a paramedic friend told me I needed one but I couldn't find one that I liked – they all looked like something Del Boy would wear!

So the decision was made – I was going to have to make them myself. I wanted to address the primary function of effective medical alert identification and balance it with something people actually want to wear. I wasn’t the only one who felt that way. As soon as the website went live, orders started to come in.

Last year was difficult. It was my 20th anniversary of being diagnosed with narcolepsy. There haven’t been the advances in drugs I had hoped for and as much as I can always put a happy face on it, I wouldn't say I'm reconciled to my condition. I would love to have just one week with a 'normal' life.

However, despite the challenges narcolepsy presents, I have a fabulous family, a close circle of friends and I have carved out a successful career I am truly proud of.

You can purchase one of Shelley’s medical alert bracelets here.

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