It’s been a wee while now since I wrote a long blog and continued my story. You may have seen a few things have happened since then…I spoke to Belfast Live…then Irish News and then spoke on BBC Radio Ulster on the John Toal show- you know, all regular stuff haha. The response I received was lovely and it has really encouraged me to keep going with my story and raise much needed awareness. A big thank you to everyone who has read the articles and listened to me on the radio. If you happened to miss any of them, check out my links in my previous three blogs
The next section of the story is limbo basically. Even with all the dates written in front of me, it exhausts me to read through all the appointments going back and forth before being diagnosed and sure do yous really care anyway about my Neurology appointment in 2014? Probably not…
In terms of where I left off the last time…your graduate job is kinda like an extension of uni…everyone is similar in age and a number of you started at the same time. Except you get paid and you have to do some ACTUAL work on the regular. This is a shock to the system since you are used to only producing high quality work on your biannual visit to the library to complete coursework or at exam time. You nod a lot, you take notes a lot and you panic a lot …well at least that’s what I did haha. There is a lot to learn in a short space of time. What do you mean you have given me 1 hour to research this foreign concept and to compose an email with my recommendations?? The amount of times I thought to myself ‘I know you think it’ll take an hour Susan but you have about 50 years experience and know all this shit without googling every phrase you can think of’. Memories of sitting at my brand new laptop reading ‘HMRC VAT Notice 700’ with a magnifying glass and hitting CTRL F on all the new words and phrases I had just learned like ‘reverse charge’ and ‘triangulation’. It’s funny because you thought that because you had got your degree you must have SOME skills.. Nope..you gotta adapt to a whole new way of life. What’s this got to do with Narcolepsy you might ask??? Good question friend, it has absolutely nothing to do with Narcolepsy but everything to do with my life and the demands expected of a graduate.
I really didn’t know what I was getting myself in for truth be told (I can hear Nessa out of Gavin in Stacey when I read this back haha). I just thought Tax = legislation=I will be good at this as I know how to apply and interpret legislation. To be fair, VAT (the section I was placed in) is legislation heavy so I wasn’t entirely wrong…but as the Chartered Accountancy exams ….I was not expecting how hard they would be. Well…i suppose at that point I was used to passing exams, failing exams was not something I associated myself with. I was about to get a rude awakening, with thanks to my mate Narcolepsy.
BC (Before Chartered) I was able pass exams and appear normal due to me overcompensating for everything. Fell asleep 3 times on top of my textbook? Ok well I need to sit for the length of time I was asleep to make up for it. What happened then when I was put into a time pressured, busy environment with lectures at the weekend….you can imagine it didn’t go well. I no longer had the time anymore to overcompensate. The recovery time that I had was gone as I had to balance work with studying and attending lectures. As I look back now I was destined to fail… the Chartered route is an extremely prestigious qualification. Its difficulty level is what makes it so. I needed to be able to give 200% but I was operating like an Iphone on 20% battery. Another way I like to explain it to people is that I’m a bit like low speed internet…I will eventually get/download the information but it might take me bit of time to get there. That’s not me making excuses or trying to create a story, it’s just the truth. Being diagnosed with Narcolepsy was hard but suddenly everything started to make sense…Narcolepsy is so much more than feeling tired…the symptoms that made studying insanely difficult were as follows
- Excessive Daytime Sleepiness – you fall asleep at inappropriate times during the day and feel fatigued ALL THE TIME. This symptom then produces the sub symptoms of poor concentration and short-term memory. What are two things that you need for focused studying??? An ability to concentrate and to absorb the new information! This is then facilitated by your short term memory. Couple this with the fact the material was super difficult and time consuming. Then, put yourself in an exam situation which is time pressured oh and stress makes your Narcolepsy worse so you feel more tired..
- Automatic Behaviour – this means that basically you can fall asleep but continue what you are doing with no memory of it. This was exactly what was happening in class, I was falling asleep whilst writing notes but my handwriting was completely illegible.
These are only the symptoms that directly impacted on my studying, the hallucinations, interrupted night-time sleep and sleep paralysis all had an effect too. My mental state was extremely fragile experiencing all of this whilst trying to keep up appearances and appear ‘normal’. Even today this is something I struggle with. I work so hard to appear normal that when my condition taps me on the shoulder its comparable to the following conversation going back and forth:
Narcolepsy: hey girl imma flare up now k? yeah I know you have been working on some stuff but I’m gonna make that impossible to do right now
Me: ABSOLUTELY NOT HOW DARE YOU
Narcolepsy: I’m chronic you aren’t ever getting rid of me and I think you forgot that so I’m gonna unleash a bit of hell on ya
Me: Nah mate I’m gonna keep on working on here, you won’t get the best of me.
Narcolepsy: …let me just turn off a few lights…ah the first one would be your concentration that’ll annoy you
Me: (1 hour later)…wait what did you say?
Narcolepsy: How about a sleep on your desk?
Me (another hour later): I just woke up and I feel terrible I think ive hurt my neck sleeping on my desk
Narcolepsy: I tried to tell you to go to sleep earlier…cmon now get into your bed.
Me (huffing): FINE but this isn’t over!
I reread the above whilst editing that this sounds absolutely bonkers and was nearly gonna delete…its laughable to someone without Narcolepsy but I suppose what I want to get across is that is how extreme our symptoms are. There is no choice in how or when sleep takes over..you either resist it or you learn to manage it. It took a long time for me to realise that the latter was the better option. This wasn’t before I lived in denial for a good few years.
If we go back to where I was with a diagnosis at this point in time, I had been diagnosed with Sleep Apnoea… I finally got my ENT appointment in January 2015, which was requested in February 2014. Life was happening but in terms of getting anywhere with treating my sleepy problems I was still at square one. What makes it worse is that my appointment to be assessed for a CPAP just didn’t happen as timely as it should have. They claimed that they had sent out appointments but I never received them. I think my mistake at the start was not making a fuss. I trusted that I just had to wait like everyone else and that was it. It never crossed my mind that a mistake had been made. Another ridiculous thing was that I sat my first set of professional exams and didn’t even ask for any allowances. As you have read about everything to date you might think why??? But back then, I didn’t have a single person who fully understood what I was going through. I had people who I could turn to, family and friends that would listen, but no one really understood what it was like to have my symptoms. I also cared what other people thought way too much… I saw my tiredness as they did, as a weakness. I would just have to suck it up and get on with it.
The CAP1 exams consisted of 5 days of 5 exams (Business Law, Tax, Management Accounting, Finance and Financial Accounting). I had never experienced a week like it. People told me that I wouldn’t study between the exams because I would be so exhausted and I didn’t believe them. In the off chance that you are a CAP1 student reading this – BELIEVE THEM. That was another thing too, other people without Narcolepsy would talk about the exhaustion that these exams brought and in my head I nearly thought well maybe this is just normal..even though at that point they had diagnosed me with Sleep Apnoea I was still a bit in denial. I had my Finance exam on the first day (which I believe they still do) and I was HORRIFIED by how it went. I remember coming home in my zombie state and going into to the kitchen to make dinner. Those I lived with asked me how my exam went and I remember opening the fridge door to cry into it so they wouldn’t notice haha. I was convinced that I had failed that exam….and you know the best of it. I DIDN’T. That’s how much of a mind fuck these exams are. But if there is one lesson from my experience it is this: You are what you think. What did I do the next day? I let the previous day weigh on my mind and I actually DID fail that exam. When I received my results I couldn’t believe that I had actually passed my exams but failed the second day. In my mind I was actually happy that I had passed 4 exams considering all I had to cope with….but returning to work was a very different story….
P.s. If you are wondering what the blog picture is about i couldn’t think what to put since there wasn’t any photos of me crying into my fridge so I picked a picture of my first CASSI weekend. This was organised by the Student Society of Chartered Accountants Ireland and honestly they are some of my favourite memories as I look back on my time in accountancy, it wasn’t all bad!
