23/09/2025
Yesterday was World Narcolepsy Day! But I was too tired to post after a weekend of having cataplexies and losses with the cold.
9 years officially diagnosed, for me my journey to diagnosis was fairly quick at 3 years when the average is 8 to 15 years!
It felt like the longest and most challenging 3 years of my life, with my symptoms worsening not long after we got married, I was told by people it’s just the coming down from excitement the excitement of getting married 😂 I knew something wasn’t right.
My narcolepsy was brought on following glandular fever in my late teens 20s, and then chronic fatigue I was always tired and would usually be found napping after a day at college or work.
But as I felt the extreme fatigue, hallucinations at night with sleep paralysis, and a strange weakness in my knees when I laughed or got a fright (the start of cataplexy) I went to my GP which was a long process as is often the case with chronic conditions… blood tests, advice to open the window when driving if I felt sleepy, take vitamins… I crashed my car as I fell asleep ( if you feel tired, pull over!!! Even if you are nearly home, I was only 5 minutes from my house). This sounds crazy but as I felt myself getting sleepy, I seen a flash of light next to me in my car and felt like someone slapped my face to alert me which it did (I’m convinced this was my guardian angel), but I kept driving and crashed into a parked pick up truck with my wee car passenger wedged under it, I was so lucky that nobody was hurt! But this lead to me being taken seriously and referred to the sleep clinic.
Sleep tests, a lumbar puncture and along wait I was diagnosed with Narcolepsy with Cataplexy, which I didn’t expect at all.
Hearing other peoples experiences and symptoms really helped me to come to terms with the diagnosis which their is no cure at present, but a lot of promising research is happening so maybe in my lifetime 🤞🏻
The last image is by Georgia Stanier, I’ve never seen anything that I relate to so much.
If you made it to the end, thank you so much.
If you have any questions please let me know.
Love Karen xx