dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

Getting diagnosed

I first knew something was wrong a few months after I moved to London in 2008.

I started experiencing a really weird feeling, just a split second of tiny “not rightness”.  It would happen when I was out with friends, usually at the pub having a laugh over a few pints.  I would get this tiny little feeling deep in my chest and a quick little moment in my arm where it felt like I was going to drop my drink.  Just for a second.  Never for long enough that I would actually drop the drink.

Like a good girl I went to the Dr.  Let me just say as an aside, if your Dr doesn’t take you seriously (about ANY health related issue), if they brush aside your concerns, act like you are being a hypercondriac or has simply no answer for your symptoms.  KEEP TRYING.  Get another Dr, keep asking questions, be insistent.  If you know in yourself that something isn’t right.  You are probably right.  I am a firm believer that nobody knows your body better than yourself.  If your gut tells you something is wrong.  Trust it.

I was lucky, my Dr was a fabulous woman, a local GP in Highbury London who was an absolute pleasure to deal with.  She was baffled by my symptoms but certainly not deterred.  Together we started researching.  I wrote down every single time it happened, what I had eaten, what I had been doing.  I started to notice a pattern.  It was always the same type of situation.  I was always talking, usually telling a joke, frankly, it was usually when I was taking the piss out of someone.  A quip or a smart arse remark.. and *tingle* there goes my arm.  This started to increase in frequency and severity to the point where my knees would start to buckle ever so slightly. I describe it as the feeling you get when you are standing upright and someone taps the back of your knees to make you buckle slightly.  It felt just like that, only there was nobody there tapping the back of my knees.

So the Dr and I kept researching.  She would call me often with ideas, to find out how it was going, she sent me for every test under the sun.  Blood tests, as many as she could think of, thyroid, diabetes, stress tests, lung and chest x-rays, echo and ecg tests, even an MRI.  By all accounts all anyone could tell me was that I was a perfectly healthy young woman, the worst news anyone could muster was that I could benefit by losing 5 or so kilos.  That is it.  They were stumped.  Eventually they said that there wasn’t much else they could do.  That it wasn’t life threatening and that I was otherwise completely healthy.

I trusted my gut.  I kept on googling.  I focused in on the fact that this always occurred when I was doing the same kind of social activity.  There was obviously a trigger for me and I knew what was happening was slowly incrementally getting worse.  It was my flatmate who suggested that I include lethargy in my symptoms.  He said I was one of the sleepiest people he knew.  I couldn’t stay awake for a movie, and I often drifted off to sleep while we were chatting at the end of the day.  He was the one who said that it always seemed like I was dreaming straight away, he said my eyes fluttered straight away and I would often talk nonsense to him when I was really tired.

Roughly 10 minutes after this conversation I found myself online reading an article about cataplexy and narcolepsy.

I cannot describe to you the way it feels to read something that describes in words what you have been trying to explain to Drs for months.  You get this prickly sensation of YES YES that is me.. they are describing ME! You want to yell out HOORRAAAAH AT LAASTT!  It’s like someone has jumped into your brain, read your thoughts and felt your feelings and then put it all down on paper.  It is a relief.  You finally understand the phrase, “knowledge is power”.

But it is also scary.  It is scary because you don’t know what this means.  It is scary because you have no idea why no Dr has worked this out despite all the tests you have had done.  It is scary because you know nothing about this thing called narcolepsy and you don’t know how it is going to affect the rest of your life.  You read words like “no cure” and “misdiagnosed” and “depression” and “debilitating” and you get a bit worried for yourself.  You read about people being on medication for their whole lives, scary sounding things like Ritalin and Dexamphetamine.  You associate this medication with screaming children who have ADHD, you associate these words addiction and drugs and things that form no part of your life.

You also hope you are wrong.  Even though deep down you know its right.  Even though you have never read anything that described you so well, you still hope that maybe it is the Drs that were right, that maybe you are just a healthy girl who gets a funny little shudder thing for a few seconds every now and then.

As it turns out, it was me that was right.


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