It’s been 10 years since I picked up a nasty virus during my time at university, that made my cheeks and glands swell up so much that I looked like a hamster. I had all sorts of tests at the time… tests for mumps, glandular fever etc. But the doctors never got to the bottom of it and said it was just a nasty virus. Whatever it was, it hit me like the Flu, lasted for 2 weeks and left me feeling completely drained of energy. And I haven’t been the same since.

Ever since that virus, I’ve felt tired and often under the weather. It’s a feeling that I can’t quite put my finger on, but I know I just don’t feel 100% well anymore. And the word ‘tired’ doesn’t quite cut it either. It’s not just tiredness, it’s more like a physical, mental and emotional fatigue – feeling drained, exhausted, heavy, devoid of energy and in a brain fog. Sometimes, even small things seem to take up more energy than I’ve got to give. Like brushing my teeth, walking my dog, planning things… even talking on really bad days. At times, I struggle to concentrate and my memory has become so bad. I used to be able to memorise and remember things, but these days I forget what I have to do unless it’s written down. And it’s made life very hard, because I love life and I’m an adventurer who always wants to be exploring, doing and enjoying all the things I love. But I’ve just had to accept that I’m not up to it all.

So, in my bid to get to the bottom of it, I’ve been back and fore to my GP surgery countless times; I’ve seen pretty much every GP at the surgery; I’ve had so many blood tests I’ve lost count (and have tiny puncture scars on both arms); My test results nearly always come back normal; I’ve been given Vitamin D and Iron supplements to help with my energy levels; I’ve been on waiting lists for years; I changed careers partly because I couldn’t work shifts and extended hours anymore without feeling horribly ill; I’ve done an online CBT course; I’ve taken trial medications which had horrible side effects and dreadful withdrawal symptoms; I’ve cancelled so many plans because I haven’t felt up to it; I’ve taken supplements to try to boost my energy; I’ve tried exercising more but it makes me feel worse; I’ve been told I’m ‘just depressed – here take some anti-depressants’; I’ve researched every possible cause I could think of; I’ve been told by a medical professional that ‘there’s nothing wrong with you, it’s all in your head’. That was a low point where I felt like no one believed me or understood my symptoms at all. I felt like people thought I was lazy, attention-seeking or using it as a bad excuse. I started to think maybe it was all in my head and I just needed to get a grip. It stopped me from going to the doctors again for a long time, for fear that I was being labelled as a hypochondriac. Words can’t really describe how that made me feel.

That was the turning point for me. I realised that this couldn’t be normal, so I decided to pay and go private, and that’s the best decision I’ve made. I saw 2 specialist consultants who actually listened and sympathised with me and could see that it wasn’t all made up. Dr Llewellyn, a Rheumatologist with an interest in Chronic Fatigue, was fantastic and actually treated me like a human being. He took the time to really listen to me and understand how I’ve been feeling, and he suspected that I was suffering a Post Viral Fatigue Syndrome, but he couldn’t find a specific cause for all my problems. So he referred me to a Sleep Specialist called Dr Thomas, who has also been brilliant. It took 18 months on another waiting list before I stayed in hospital for a 24 hour sleep study. And it took another year before I got the results (thanks COVID). But finally, after 10 difficult, frustrating years of going in circles and getting nowhere (and certainly not getting any better), I have a diagnosis. A very unexpected diagnosis.

And it’s such a strange feeling. After all this time, I just want an answer and a reason to explain why I’ve struggled for so long. Yet at the same time, I don’t want to have a problem or be labelled with a medical condition that very few people understand.

When I got the phone call, I was expecting to hear the usual… ‘Your test results have come back clear, everything is normal’ – back to the drawing board. But this time it was different…

‘You have a problem. That’s very clear from the results of your sleep study.’

And the diagnosis is something I hadn’t even considered despite all my research, because, well, surely it can’t be that? And it’s something that I still haven’t quite got used to.

‘…You have Narcolepsy.’

I’d heard of it. You probably have too. But I’d never involuntarily fallen asleep in the middle of the day with my head on my desk or in my bowl of soup. So how could I have Narcolepsy?

I went away and researched it, to discover that there are 2 different types – Narcolepsy Type 1 with Cataplexy (where you can’t stop yourself from falling asleep and lose muscle control too), and Narcolepsy Type 2 without Cataplexy (where you can keep yourself awake, even if you feel like you should be asleep). And I have Type 2 Narcolepsy.

No matter how tired I feel, I can force myself to stay awake even if I’m feeling sick to the pit of my stomach. And I can fall asleep very quickly and easily when I want to. But the problem is that my brain can’t regulate the sleeping and waking cycles like a normal person can. This means that even when I’m awake, or falling asleep/waking up, my brain might be trying to go into REM sleep. And overnight, I’m not falling into a deep and restorative sleep, which is why I haven’t woken up in the morning feeling refreshed from a good night’s sleep for a decade. And it’s exhausting!

So now, I need to have another test – a lumbar puncture – to determine, or rule out, Type 1 Narcolepsy, which could mean that I won’t be allowed to drive anymore in case I fall asleep at the wheel. But at last, there is light at the end of this very long tunnel and I’m one more test away from a confirmed diagnosis and some possible treatments. Narcolepsy can’t be cured. It’s a lifelong, chronic, neurological condition suffered by around 3 million people worldwide. But the symptoms can be relieved, and that’s all I really want to be able to get back to how I once felt all those years ago before that virus knocked me down.

I don’t know what triggered my Narcolepsy (maybe it was the virus – we’ll never really know), but it’s such a relief to finally have an answer and know that a medical professional believed me and trusted me. I feel validated at last. Despite how difficult the past 10 years have been, I’ve always carried on as best I can. Even though it’s been a struggle that I can’t even describe, I always get up and go to work, I make plans, I aim high, and I push on through the exhaustion and fatigue, which sometimes gets the better of me. But now, I finally have a diagnosis, and it’s shown me that to be able to carry on and live with undiagnosed Narcolepsy for a decade, I must have some resilience and inner strength that I didn’t recognise before. And because of that, I know that I can tackle whatever life throws at me in the future.

I wanted to share my story because it’s been a long road to a diagnosis and I know that most people will never really understand it. Narcolepsy is an invisible illness and I’m going to have to explain it to all my family and friends. Some might not have even noticed my struggles over the years, because I’ve tried to hide it and I worried what others would think of me. But I have a diagnosis on my side now. It’s official and it’s real, even if it’s not a diagnosis that I wanted. I’m so glad that most people will never feel the depth of tiredness that I feel every day, but I just want you to know that when I say ‘I’m tired’, it’s so much more than that.