Sleeping Girl Summer
In the summer of 2022, London was hit with a massive heatwave, with the hottest day on record at 40°C / 104°F. I have always been a person who loves the sunshine, and I've enjoyed holidays in the Caribbean, Florida, and Sub-Saharan Africa, yet this London heatwave had me experiencing a sleeping girl summer instead of a hot girl summer.
I couldn't focus, I had headaches, and had no energy
The heat and humidity made my narcolepsy hard to manage, and I found myself sleeping 12 hours a day. Most days were spent in a constant search for some air. I had no air conditioning, just an electric fan which was on constantly. Still, I felt extremely hot, and even with the windows open there was no breeze. The trees were perfectly still.
The heat zapped me of my energy. I couldn't focus, I had headaches, and I even struggled to form proper sentences. It was an unproductive time for me. I was only able to perform the necessary tasks: showering, eating, and taking care of my cat.
I was inspired to search through old diary entries
So many years have passed since then. I was 15 years old and unable to stay awake in my lessons. I was inspired to search through some of my old diaries and remind myself what life was actually like on a day-to-day basis back then.
I located the diaries expecting to see great details of how I used to feel when I was newly diagnosed. That is before my medicine was super regulated and whilst I was still adjusting to this new normal.
My biggest surprise was just how innocent and positive the newly diagnosed me was. I wasn't complaining, I wasn't feeling held back (well, I didn't express it or pen it). The reoccurring phrase was just, "I went and had a rest." It also read, "I cleaned the house today, went shopping, went to college, then I went and had a rest." I didn't say anything about it being a bad day or a hard day. There was nothing about bad dreams or night terrors, or the cataplexy attacks; just that I did an activity and went and had a rest.
Things were better then than they are now
I noted that whilst I remember being so exhausted and having so many cataplexy episodes where I fell during those early days, things were better then than they are now. I could do a number of things in a day before needing to sleep that I cannot do now.
Back then I was able to go to church, go shopping in Oxford Street, and attend a banquet all in one day. Now I sleep through some of the activities and spend days recovering. Since I never penned the words "nap" or "recover," I assume that I wasn't versed enough at the time to fully articulate what I was doing and why I needed it in the diary.
Reading about the time of my narcolepsy diagnosis
Eventually, I located the diary recording the day I was diagnosed. A lot of what was written was what I remembered: that I didn't realise it was a sleep appointment I attended. I thought it was an ENT appointment, as it was held in that department of the hospital. Then I left the appointment diagnosed with narcolepsy with cataplexy and was told they would be in touch to do the test to confirm the diagnosis.
What I didn't recall and found interesting was the next day. I wrote about how I rang my close friends and let them know what had happened to me. I also observed my mum doing an information deep dive to learn as much as she could about the disorder.
The words that stood out the most on the page were me quoting my mum saying that "this illness was going to affect my life forever." How true these words were, but I did not realise it then.
There's still so much more to learn about narcolepsy
I don't think the 15-year-old who felt she needed extra naps or the 18-year-old who was newly diagnosed understood the magnitude of that statement. At 39, I think back to being newly diagnosed and hearing and understanding I would need to medicate to regulate my body, but not realising how this diagnosis, this disorder would permeate so many areas of my life.
It's been 20 years, and whilst on some days I feel like I've mastered narcolepsy, there are still days I feel completely overwhelmed. And an unpredictably hot summer can teach the teen who summered and flourished in humid Florida that there's still so much more to learn about living with narcolepsy.
How would you describe your relationship with your doctor?