Thoughts before writing this
I sometimes wonder to myself why I bother to torture myself by talking about all of this. There are so many painful memories that conjure up those feelings again. Feeling lost, feeling a failure, feeling embarrassed. I don’t know why or where this will lead by sharing this but I do know that by shaking out all the skeletons in my closet, somewhere along the line I will start moving on from this. I will always remember how I felt but I now feel like I am taking a corner. I am looking forward more than I am looking back and that has to be a good thing. I am making peace with the past – one ramble at a time.
I also just feel very disengaged with how blogs and instaggramers and the world works these days. So many people are showing their ‘best life’ on instagram and sharing how they achieve this life in seemingly easy steps.
The truth is that life is messy. It requires constant adjustment and nothing is ever linear. This perfect life portrayed on social media is something I rile against. How is this making people feel better?? It’s just not. It’s feeding comparison culture and that is a poison that is so embedded in our society now that we don’t even notice it.
During the pandemic I thought people would see through the bullshit of the Instagram world. Instead though it moved from comparing nights out to comparing coping mechanisms and home workouts.
Before you think, wow she is really hating on Instagram. There are good people on there using their platform for good and showing just how raw and difficult life can be along with the good times. It’s a great way to meet other people with Narcolepsy and find like-minded people all around the world.
With that in mind, I will continue to share my story for those that ever find themselves in my position and take comfort from a few honest words about it.
Ok brain fluff out of the way. Let’s take you back in time.
The year was 2017, according to my Facebook, I was living my best life in Ibiza. Or so it appeared.
Don’t get me wrong…I LOVED Ibiza. Here’s a picture of me in Ibiza..talk about looks being deceiving. Anyone on the outside looking in would have thought I was having a great old time as I posted beside this cool grafitti for a super instagrammable picture.
Returning home to reality wasn’t a fun time though. I was unemployed. I didn’t know where my career was going. You would think I would have been having a meltdown but I just kept moving forward. I job hunted, I contacted recruiters, I had meetings with said recruiters, I updated my Linked In. I was very sensible and didn’t for a second allow myself to fall apart. Falling apart wasn’t optional but it wasn’t even that I was pushing down my feelings; I didn’t feel anything at all. If anyone asked I would repeat what I was doing and they would agree I was doing all I could. I was a soulless robot moving through the process.
It took me around a month or so to get another job. In that time I had to sign on ‘the dole’ or ‘Job Seekers Allowance’ as it’s officially known. I remember telling the person what had happened and I will never forget their face. Pity. Horror. I hated that. They said it was unfair what happened. Why was I even telling them anyway? I wasn’t sure. It was definitely TMI and I was telling this story like it was someone else. Yeah I got fired from my job. I failed some exams that I sat when I was undiagnosed with a serious sleep condition. Yes this is the first time I have ever claimed such a benefit. Yes this is the first time I have ever been unemployed. Smiles, ah it’s grand. Sure what can you do. Can I go now?
The void of not having a job and having one is again a blur in my memory. I remember getting a library card and going to the library to research jobs and use the printer. I did odd jobs for the person I work for now. They and I didn’t realize at the time but it was probably the thing that maintained some sort of normality for me. If I was working I wasn’t thinking and not thinking about this situation was the only way I could deal with it. The feelings of panic didn’t come because I refused to let myself feel anything. I would be fine! I was trying to convince myself of this as much as everyone else. If anyone that is reading this that has lost their job, particularly during this shitty time please know that it will work out. It’s ok too if you reacted differently to me, I mean, showing emotion would have been the more normal, human reaction.
Eventually, I got an interview for another firm and I threw myself into research. I was Christine-Can-Do-It. This is a personality trait in me that only comes out when the stakes are big and I REALLY want to achieve something. I wish she would visit more often but she just comes out for the big guns and it’s usually for someone else and not for myself. Christine-Can-Do-it can be a bit of a scary creature though. She has no regard for regular Christine and she often puts career goals above all no matter what the cost to her own wellbeing. She is not only current Christine she is future goals Christine and will answer accordingly. It’s not that she is lying though…the answers she gives in interviews are completely true. But she portrays me on my best, shiniest day.
Reality, normal Christine is a sleepy gal who means well but can’t always execute perfectly everyday cause UM SHE HAS A FREAKING SLEEP CONDITION. Wow I kinda hurt my own feelings there. This 3rd person Christine is kinda critical and rude.
So yeah you can imagine what happened, I was so desperate to get a job that I performed to my best ability and got the job. WOOHOOOO. Christine was employed again. But when I look back now…I didn’t even think about the stress of the previous 3 years…I just needed a job so I could prove to myself that I could continue in that profession as a big F you to the people that fired me. Please keep this in mind if you are looking for a new job. If you were furloughed during the pandemic then ask yourself whether you really want to return to how it was? Stressed, working mad hours, always sick, no energy for anything else but work, hating logging into your laptop everyday. Take the job in Tescos or wherever if you need to and just give yourself the brain space to think about what you want before you make your next career move. You have a whole lifetime of hating your job and despite what people tell you, it actually isn’t normal to hate it. You spend probably more than half your life just being in work alone, make sure it’s somewhere you don’t mind spending time.
In terms of sleep I was making some progress…I was sent to a hospital in Glasgow to have my overnight sleep study done. My parents came with me, which was a comfort because even though they were in the hotel across the road I knew that I wasn’t alone. The test I was having was an overnight sleep study called a Polysomnography (PSG) and a Multiple Sleep Latency Test (MSLT).
Essentially one is the overnight sleep study part, the PSG, where I went into the hospital and got hooked up to all sorts of things to measure the quality of my sleep. Electrodes were placed on my head and chest to measure my brain activity. This part is key to understanding the length of time spent in each sleep phase, how quickly you reach REM and how much of the night you spend in it. Everyone now has these descriptions on their fitness watch but they only measure your body movement and heart rate, not your brain waves. It’s your brain waves that show the true picture of your sleep quality. The consultant had seen from my last sleep study in May 2014 that I had sleep latency of 6.2mins, REM latency of 15mins and awoken out of my sleep 157 times in the 8 hour timeframe that I had been asleep. He had ordered this test because he thought that there was still a chance that I did in fact have Narcolepsy despite it being ruled out in the first sleep study.
What is this latency chat? Sleep latency is the time it takes you to fall asleep and REM latency is how fast you get into the phase of REM sleep (also known as dream sleep). A normal person shouldn’t be in REM until 50-150mins into their sleep so something was up. This number will vary with people with Narcolepsy some people go into REM sleep in as little as a few minutes.
I also had to go to sleep overnight with a pulse oximeter (wee clip they put on your finger to measure the oxygen levels of the blood) and this other movement monitor thing on my legs. I looked like something out of X-men. I have pictures somewhere on my old phone but can’t find them! They are a sight to behold with the cement feeling glue attaching the electrodes to my head, clinging to my hair and on my face.
The next day the MSLT test was done which required me to take 3/4 naps and they would basically measure what was going on. You would think it would be hard to go to sleep with all this equipment but I was off to sleep in no time. It’s such a strange set-up to be in though. They have a camera in the room, which watches you as you sleep just to see if you do anything else wild like sleep walking or trying to get out of the room. Hilariously they told me that when I was reading my book it was super confusing for them because apparently the way your eye moves when you are in REM is back and forth in a rapid manner (hence the name) which is identical to your eye movement when you read. They came into the room at one point confused thinking that I was napping when I wasn’t meant to be (it was all scheduled). I finished the testing and traveled home again.
At this point I think I was about 1 month or so into my new job. My new team were lovely but super ambitious which only fed Christine-Can-Do-it even more. It was all in my own power how I responded but I just wanted to elevate myself even more and work even more to be this corporate high-flyer that I aspired to be all those years ago. I worked really hard and was starting to enjoy my role.
Finally…a letter arrived in late November that they confirmed a diagnosis of Narcolepsy with NO EVIDENCE of obstructive sleep apnoea. Talk about a plot twist.
I visited my sleep consultant in December and I was put on my first course of medication, Modafinil.
Modafinil is a stimulant which is used to treat Narcolepsy and promote wakefulness during the day (something we struggle with). I can’t say my use of it and transition was smooth, I was extremely sensitive to it and got sore heads, heart palpitations and racing,anxious thoughts. It was not what I expected when I received my diagnosis. I had this miracle drug built up in my head but that wasn’t the case.
I finished the end of that year hopeful though, I would get used to this medication and it would all be fine. I was starting to settle into work and I was optimistic for the future.
Something was coming around the corner though that would stop me completely in my tracks…