Find Me Face Down on the Floor Behind the Sofa. A Narcoleptic’s Tale.

Our 'hidden illness' series continues with an amazingly insightful and frank post from my fabulous friend Rebecca on Narcolepsy.

If you ask somebody who is ill what the worst thing is about an illness, you will find pain is probably at the top. Followed closely by lethargy or exhaustion. So we know tiredness is awful yet we fail to recognise as a disability. This blog article for The Parent Game is to help you understand the rather odd life cycle of a narcoleptic. Please try and stay awake!

GPs can only diagnose based on what you tell them or that they can see. If you don’t know how to describe the symptoms and you don’t link them or even realise they are not normal then your GP stands no chance. In my case, I have known all my life that I am ‘wonky’. Not the best description to give a doctor. I always assumed I might have more luck at the vet where they are used to patients being unable to communicate.

The biggest symptom, and the one that causes most people to say ‘Oh wow! I have that too!!!’, then switch of from listening to everything else you say while they obsess that they are indeed narcoleptic and it explains everything; is being tired. Not just any tired. Can you remember how tired you were after that first baby? That feeling as you enter general anaesthetic? Where you get so tired that you cannot function? Two and a half days without any sleep at all? Welcome to the weird and wonderful world of the narcoleptic. Narcoleptics are that tired every day.

So why don’t you have it? You get tired too? Well you might have it, if after reading this article in full you still feel you might have it then get yourself to the doctor. Here is why you probably don’t have narcolepsy; in your brain there is a ‘switch’. Like a light switch. It is on or off. You are awake and alert or asleep and sleepy. You have a finger that presses that switch at appropriate times. That finger is called Orexin. A hypocretin (not to be confused with cretin which is what you call an ex or a rubbish work colleague). Narcoleptics either never had Orexin or for some reason had a autoimmune response, possibly to stress that resulted in the body killing it all off. With no finger to press that switch it has a little party all of its own. A narcoleptic cannot control sleep / wakefulness. You can try and make them but you wont beat nature. A narcoleptic cured? Erm, nah. You cannot just make orexin. Chop your finger off, it doesn’t just grow back.

Cataplexy is the next big thing. You know that saying ‘laughed until weak at the knees’? That describes cataplexy. I spend my life hiding it from you. Involuntary complete loss of muscle tone in my face, arms, knees, neck. It lasts a second to a few minutes with me, some unlucky ones have it last longer. It is triggered by strong emotion, anger, laughter, surprise. It doesn’t hurt but I fall regularly, appear clumsy and struggle more than you can imagine to be able to watch my kids in school events and not look like I am having a fit. I turn my face away, sit down, hold onto anything. Some narcoleptics do not hide it. I applaud them but I do. Why? I don’t want to be different. I want my children to not be told ‘mummy looks drunk again’, (I am teetotal).

Nightmares and sleep paralysis are other symptoms, for me they are as bad as all the sleepiness. I never told the doctor this as I had assumed everyone had such horrific dreams. They don’t, the average nightmare is walking naked in the superstore and falling over as the man of your dreams enters dressed as Ronald McDonald. Not in my dreams. I have many, I can remember them in absolute precise detail like watching a video. They recur. A classic is falling asleep, waking suddenly and seeing smoke under the door, knowing I have to get the kids out I struggle to move but cannot. The smoke gets worse, I can hear the kids screaming, I cannot move. Every single detail I can recall as I type this. Every scream, every whisp of smoke, the heat of the fire. I listen to my children screaming until they stop and I know they are dead. Then, if I am lucky, I jolt awake in shock. My heart freaks out, I cry, I slowly function again and then I check every room.  Sleep is no friend of mine. I have heard my children die, be attacked, been attacked and felt the pain of it all as if it was happening. Nobody should face that trauma in real life or a dream. I can trick my brain, I have window locks on every night, even in summer. I have fire extinguishers in every room. This means I can sometimes remember these things in my dream and divert it. I fight my own brain every night. Sleep paralysis is that my body is in sleep but my brain is partially awake. The dreams are in fact hallucinations in that state.

Saying that you hear your kids burn to death isn’t something any parent wants to admit to having. Am I mad? Is it psychological? Nope. This is purely physical symptoms. Nothing ‘in the mind’ included. You can see why it is hard to diagnose.

How can it be controlled? 

Well here is the fun bit. Amphetamines or a drug called Modafinil during the day to keep you awake and temazepam or xyrem (GHB aka Rohypnol) at night to force sleep. Anti-depressants can help block the emotional stimuli that trigger cataplexy. What a great concoction. The ‘faulty switch’ is in the hypothalamus gland in the brain, this also controls appetite among other exciting things. I can be ravenously hungry then not need to eat for ages then crave carbs for days. Carbs are a narcoleptics nightmare. They send us to sleep. No idea why, they just do.  I take no medication anymore. A lifetime of drugs I get used to and need ever increasing doses, Xyrem which scares me witless etc is not my choice. Temporary increase in wakefulness but at what long term cost? It works for many people, not for me. I would rather learn to cope as I am. That may sound nuts to you but such drugs terrify me.

I lost my ability to drive and my job. I lost my self confidence and I struggle to get it and keep it. My kids don’t go out and do after school clubs as I am asleep face down on the floor just inside my door at about 3.45 every afternoon. I sometimes even make it to the sofa. On a good day, I have made supper in advance and not burnt my arms and hands on the oven. When that tired you go into automatic behaviour. I have merrily folded my washing and carefully placed it in the freezer. I have also boiled tomato soup in the kettle. I am covered in scars.

You will never see me collapse. You will never see me unable to stay upright. You will never watch my face twitch constantly. You will never see me fighting desperately to get up in the morning but physically unable to move as I am still in pain from being stabbed (sleep paralysis takes a while to wear off). I spend my life making sure you don’t see these things because I want to be normal. Until recently very few people knew I have narcolepsy. People judge. People also judge children by their parents. If I appear drunk then that has a knock on impact for my kids so I just don’t go out as much. When you see a narcoleptic, the chances are they are fighting untold urges to hide away. I am out in the school playground with a smile on my face, I fight until I get home and then I collapse. My children are the best. They laugh it off and they never complain. Many narcoleptics are like me. We suffer a little understood and complex condition.

We have our uses. A narcoleptic can block emotion to an extent, we have to in order to fight cataplexy triggers. Thus we make the best people in any emergency as we think purely on a practical level for that time. We fall apart afterwards but we can be awesome for thinking outside the box, finding good alternative solutions to life’s drama and we tend to be very responsible.

Things to look for:

Excessive daytime sleepiness. Not just the odd afternoon nap.

Hallucinations and sleep paralysis, these will seem like a dream as you won’t know you are awake.

Insomnia. Oh yes, wouldn’t be as simple as just being tired. We often cannot sleep at night.

Odd appetite patterns.

Loss of muscle tone, from a fraction of a second to minutes. Twitches or full loss results in jerking, collapse or losing balance but also affects head and neck. Triggered by emotion.

If you have any / all of the above then get to a doctor. Ask for a referral to a neurologist. If you know someone with narcolepsy, don’t ask how they are, they are tired. They are fighting to be awake. Do their washing up, ask to take their kids to school or home, be practical. So few people help you if you are ‘tired’. People don’t take it seriously because we cope. Narcolepsy is yet another invisible illness.

Looking for me? Find me face down on the floor behind the sofa and we’ll have a slumber party. I spent many hours there as a child hiding so desperate to sleep. It saddens me to think how many years I was ‘lazy’ or ‘faking it’.  When you sleep tonight without even thinking if you have checked the fire extinguishers and window locks be glad. I wish this on nobody. Being tired is not a condition to be fobbed off. It is a valid disability. 

Click the link to read a previous Hidden Illness post, about Asthma.