Narcolepsy – I’m not lazy!

In 2011, I think, I was diagnosed with Narcolepsy. You expect some sort of relief because you finally know what’s wrong with you. You think brilliant I can start to get better and stop living so miserably. Nope! My whole world came crashing down when I received that diagnosis.

Since I was 16 I’d been going to the doctors for lack of energy, feeling constantly tired, sleeping for hours on end, need constant naps during the day. And every time the doctor would say – it’s the stress of the GCSEs, Alevels, Uni, maybe it’s diabetes, a hyper thyroid, an under active thyroid, being a teenager, and the last one they always landed on when every test came back negative ‘it’s depression!’ I kept arguing that no one can be solidly depressed for 8 years, with depression you have ups and downs not a constant downer.

After constant test and being told all it was was depression I had a break through with a temporary doctor who commented that maybe it was narcolepsy but he couldn’t do anything as he wasn’t my actual GP. I mentioned it to my doctor after doing some research and seeing that everything lined up. He referred me to a sleep specialist at our local hospital. After an appointment with them they told me they couldn’t do anything so instead I was referred to the nearest narcolepsy specialist in London.

The first trip up to London wasn’t so stressful. I went and filled out a survey to say how tired and likely I am to fall asleep during lots of different every day activities e.g. as a passenger in a car, after lunch just sitting, relaxing, while watching tv. I saw my Dr. I love my doctor. It’s so nice to finally meet someone who understands everything your saying. He discussed with me about coming in for a sleep study to see how fast I fall asleep, how quick I enter REM sleep, and how I’m able to do that during night time sleep as well as daytime naps. All going well so far. I also had to have a blood test to see if I had the gene for narcolepsy. This worries me as I don’t want any child of mine to grow up and go through school like me. Luckily I don’t have the gene.

I went back up to London at the beginning of November that year for my sleep study. I was a wreak! I had an epic panic attack on the train up to London. Luckily my dad had come with me because of how much I hate hospitals. I got to the hospital and they had said once you were on the ward you were unable to leave until you’d been discharged but you needed to bring your own food. Dad and I had been planning on having dinner before the 6 o’clock deadline to be on the ward but it being London and trains we were late. I had a further melt down in the M and S at the hospital because I had to quickly find something I wanted to eat and liked and I’d thought I had time to sit and relax before getting to the ward. We grab some bits and went to the very top of the hospital to find the ward.

I had a pretty good view from my room. It over looked the London eye which was so pretty as it’s covered in lights at night. To do the sleep study they had to glue a mass of sensors all over my head. And then I had to carry around a box they all attached to. Over night they were hooked up to a machine next to the bed meaning if I needed to get up for any reason and move I had to buzz.

Dad stayed until 9 as I’d finally calmed. It was my first time staying in hospital over night and I’ve always had a huge fear of them. The idea of being left alone terrified me. I completed my over night study and then moved on to the day time study. Every 2 hours a nurse would come in and tell me to nap for 20 minutes. Again hooking all my wires up to the machine next to the bed. Problem was I’d feel absolutely exhausted during the two hours I was awake and then as soon as it was nap time I felt like I was wide away and couldn’t sleep no matter how hard I tried. Remember that – I felt wide awake, like I couldn’t sleep. In fact I was adamant I never managed to fall asleep during those naps. Well boy was I wrong. After 4 naps the doctor came and gave me my result.

Congratulations you have narcolepsy on the plus side however you don’t have cataplaxy. According to my results I would fall into a deep sleep within 2 minutes. So all those times I felt I was still wide awake with my eyes closed – nope I was absolutely soundo. I straight away was put on medication to keep my Narcolepsy in check.

That was it. The confirmation. Yep there is definitely something wrong with you but sadly no cure just management. And the threat it can get worse with age. It sounds pathetic. The amount of people I tell and it’s described as I can fall asleep anywhere at anytime. And they just sit there watching you, expecting you to drop to the ground asleep. But it doesn’t work like that with me. I am aware of my tiredness. Because I don’t have narcolepsy I have a bit more control over it.

The easiest way to explain it, and how I used to explain it to the pupils in the school I worked at, is this.

Your brain produces two chemicals – one to wake you up, one to send you asleep. My brain doesn’t produce the one to wake me up. So I’m constantly fighting the chrmical/hormone to send me to sleep.

Some days are better than others. Some days I can keep going for hours and especially on my medication. Other days I am constantly drowsy, my muscles vibrate with how tired they are, my brain is slow, I’m out of breathe, I can’t concentrate, and when it’s really bad I can cry if I’m somewhere where it is not socially acceptable to go to sleep.

I look at it like this. Your in a dessert and dying from thirst, you can see water but there’s one person standing in your way (this is the person telling you you can’t go to sleep or that you can’t go home to bed) you’d be so angry at that person because the one thing you need is the one thing they are keeping you from. I’ve had a few tantrums over that.

Over the years I’ve managed to make it more socially acceptable for me to sleep in random places.

I used to go to my ex’s pool and darts team matches at various pubs and the team all knew I had narcolepsy so therefore would occasionally turn up and fall asleep in the corner. Bit awkward in a pub when normally the person asleep in the corner has had a few too many. But I always made sure I made friends with the staff and having the team well aware ment normally they’d stick up for me if anyone complained or made fun thinking I was drunk. Believe me there was a few members who attempted to do daft things to me while I was asleep e.g. ice down the back. Luckily the rest of the team stopped them before they were on the receiving end of one of my tantrums.

At work people were used to me sleeping in the staff room as I did my best to educate staff and the pupils of my narcolepsy and my needs. I have a very understanding management team that did their best to accommodate me and make sure I could still do my job and progress professionally without my Narcolepsy holding me back. I mean I was given the responsibility of first aider on every residential trip but with safety measures in place e.g. nap times during the day to deal with those who need medication during the night and I loved that responsibility. It proved I’m still Claire and the narcolepsy is just a part of me. It doesn’t define who I am or what I can do.

I am heavily active in the Kent carnival circuit and have been since I was 17. So for about 5 years I was just tired all the time before my diagnosis but then I educated people. I say educated it was normally a case of I will normally be found asleep in the back of a car before the carnival starts or crash on one of the tables at the after party and that’s just become the norm for me. No one judges me or jokes about it. I mean it’s a running joke that at every event I’m in my pyjamas by 8pm but I can’t help it they are so comfy. If I could live in them I would. I actually have people begin to worry if I leave an event still wearing the clothes I turned up in.

But that’s the thing, it’s a sucky thing and it’s never going away but it’s just part of me. It doesn’t define me. I just have a brain that’s a little bit broken and I’ve learnt to adapt. The big thing is. I’ve never known any different. I know some people could argue with this but my family and I are under the impression I’ve always had narcolepsy. My mother was hospitalised several times while pregnant with me due to lack of movement and would end up being monitored. Every time it turned out I was fine just sleeping for hours on end. As a baby I was apparently very easy. Mum would put me down somewhere and I would just sleep.

And when I was at primary school I remember falling asleep in class and one morning mum couldn’t wake me so in the end she sent me in at lunch once I’d finally woken up. The school tried to argue that I shouldn’t have come in but mum was having none of it. I had just been tired and needed to sleep I wasn’t ill. Mum always said she found it weird that I was a child who loved to go to bed. Sending me to my room was never a punishment, I’d just go to sleep. My punishment was to stay down stairs with the family and stay away. And that’s still a punishment lol. I used to beg to go to bed.

It’s rubbish now though. I want to do things with my own daughter and be able to do all the things I should be doing as a mum during the day. All the household chores, playing with Bella, taking her to the park but I struggle. I’m having to learn I am annoyingly limited but I can’t let that stop me. Luckily I have a very understanding daughter. She may not even be two yet but she knows when mummy is tired and needs a nap and she will always play nice a quietly on her own or she comes and snuggle up with me and go to sleep as well. I’m so lucky to have such an understanding daughter and husband.

Daly encourages me to nap. I mean it was one of the first things he learnt about me. I think he finds it kinda cute that I want to sleep all the time. Especially as it can make me cuddly. Daly loves cuddles. It’s brilliant to have a partner who tries to understand as much as they can and help in anyway they can. And he always comes to my hospital appointments with me. He’s been as involved in my treatment as he can since we got together.

When we fell pregnant with Bella we were both concerned about the affect my medication would have on the baby. And we made the joint decision that I would come off my meds to ensure our daughter’s safety. It’s not that my medication is deemed unsafe during pregnancy but it isn’t deemed safe as there hasn’t been enough research into the effects on the unborn baby and we weren’t willing to take the chance. It was hard to be pregnant and working and off my meds but I managed it and we have a beautiful daughter to show for all that hard work.

However after bellas birth I did have to go back onto my medication. I was exhausted due to a traumatic birth- but that’s for another blog and just the stresses and tiredness of being a new mother without narcolepsy on top. Luckily I suppose Bella wasn’t breast fed so 3 weeks after she was born I went back on my meds but I can happily say I’ve been on the lowest dosage since her birth of 100mg. Before I stopped taken them when I fell pregnant I was on 400mg so I’m happy I’m able to help manage my symptoms with my lifestyle and diet changes. I will go into the diet I found helpful another time.

This was just an insight into my Narcolepsy and my experience of it. I know some things I’ve written people may disagree with but this is my understanding of my disease and how it effects me. I also think there is a chance this is all over the place but then again I think that’s my style of writing.

If you have any questions please leave a comment or get in contact and I will try to give you an answer.

Love CiCi

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