It’s been a wee wile since I posted a blog but as it’s the 1st of September I have that naggin feelin to organise my life and get things sorted.
What happens next is a messy puzzle..trying to put together my medical record makes my head literally hurt and also drags up a lot of feelings of frustration and mourning of a life I could have lived. It’s not really my bag to throw a pity party though so I’m gonna keep this as informative as I can for anyone beginning the process of trying to get a diagnosis. That’s the purpose of my blog and why I am here writing about my experience. I know people say this all the time but if it only helps one person then it will all have been worth it. The path to diagnosis was long and hard but I will be forever proud of myself for trusting my gut and pushing my case forward. For anyone still going through the process – hang in there partner. Alright I know I’m not Woody from Toy Story but I honestly think there’s enough plot twists in here for a series of films!
So where were we? Oh yeah…Neurology…jeez took me a few takes to get that spelling right. I took my mammy with me to my appointment as at the time my GP was still based in Derry so off to Altnagelvin hospital I went. I stepped into the consultation room and began to reveal every single ‘crazy’ experience I had over the years. The consultant asked me a series of questions about my tiredness, was I likely to fall asleep after eating, in the afternoon if I was sitting down and the environment permitted, after alcohol, whilst driving…this would be my first Epworth Sleep Scale (http://healthysleep.med.harvard.edu/narcolepsy/diagnosing-narcolepsy/epworth-sleepiness-scale) assessment of many. We talked about how I felt in class, how I would fell asleep randomly and then we moved on to my night-time sleep. I explained that I woke several times in the night and that often I woke sweating after a particularly troubling dream. The dreams were the telling point though. He asked me if I had ever had dreams were I felt like I was hallucinating in my bedroom. I was like oh ALL THE TIME and proceeded to describe my alien dreams and dreams were I thought my house was haunted and burglars sneaking in to my bedroom in the night, all of which where I was completely helpless and couldn’t move a muscle or scream for help.
There was a long pause.
I thought shit he either 1) thinks I am ABSOLUTELY off my rocker 2) I am rambling on about a load of stuff that isn’t relevant.
He then looked at my mammy and said to her – did she tell you about all of this? And then…did you think that was normal? … two statements which when I look back on it were super damaging to my view on everything because honestly it created a bit of bitterness and finger pointing on my behalf. I used to think to myself why didn’t she know this wasn’t normal? And could I have been diagnosed sooner? But at the end of the day any thoughts like that are unhelpful because 1) GPs told her I was grand 2) Awareness of this type of condition was so low and even people that knew about it thought it was something that had to be extreme like the guy in Rat Race or the fainting goats.
He closed the consultation by saying that he suspected I had a sleep disorder which could either be Narcolepsy or Sleep Apnoea and he had referred me for the relevant tests.
I saw a meme there whilst I was writing this about when you are in the shower you think about what you would say to people and picture yourself winning fake arguments. If i had a message for that neurologist it would be this:
- Emotional Intelligence
When speaking to patients or the parents of patients suspected to have Narcolepsy or any other sleep disorder it is not your time to show off your academic intelligence, it is a time to show your emotional intelligence. A patient or their parent should not be made to feel like they should have known they had a RARE sleep condition. GPs struggle to identify the symptoms of this condition so what makes you think someone not medically trained would ever know how to identify this?*
- Read your notes properly
I was sent for a sleep study which concluded that I did not have narcolepsy but instead obstructive sleep apnoea. I had to go to get electrodes attached all over my head and sleep that night with all this gear on. I looked like something out of x-men and really regretted having my boyfriend at the time collect me that day. The nurse at the time was like ‘if he still likes you after this he’s a keeper’ LOL seriously. I slept that night for 8 hours and the test revealed that in this window I had woken out of my sleep 162 times. That’s roughly every 5mins. I don’t mean eyes open every time but I never entered a deep sleep and I was always in REM (Rapid Eye Movement) sleep. This meant that essentially I was in Dreamland the whole time and this is the least restful sleep stage. ANYWAY. What the test also revealed was that I entered this phase in less than 10mins. I found out later that this was indicative of Narcolepsy more so than Sleep Apnoea. However this vital detail was missed and I was put on a route to being treated for Sleep Apnoea.
It’s difficult for me to recount the days, months and years that followed without feeling sad. This wrong turn in my treatment delayed the correct diagnosis for 3 and a half years. In that time, I had surgery on my nose as I was referred to ENT and it was discovered that I had a deviated septum. Desperate to fix the problem as obstructed airways contributed to sleep apnoea I went private to get this sorted. Why go private you ask? I was now in a Big Four accountancy firm with a training contract. This meant two things:
- I was able to use their health insurance to be seen by ENT quicker which had a waiting list of a year and a half.
- I had to pass my Chartered Accountancy exams within the term of my training contract which was three and a half years. The consequence of breaching this condition was termination of employment.
Time is something I didn’t have. I needed to get a diagnosis as soon as I could so I could start feeling better for the exams I had to sit. The biggest achievement was that I had graduated and got into my role in the first place.
The partner over my section once said to me :
“some people’s route to success is linear but sometimes others aren’t and that’s ok you are just taking a different route”
The next bit might have you shouting at your screen and shaking your first but hang in there, it get’s better I promise there are lots of LOLs in store.
*names I nearly called this were ‘Neurological Asshole’, ‘man patronises patient for not knowing about condition then misdiagnoses them’…but hey, I aint about that life anymore, all good vibes from me.