My Narcolepsy Diagnosis
What? I have narcolepsy? Like the girl in that movie that falls asleep in her soup?
I remember this being the first thing I thought of when I was diagnosed. I was certain they were going to tell me I was just tired from being a mom. The rest of that appointment is a blur, as I think I was in shock.
Not everyone is this tired?
For years I had been experiencing this overwhelming tiredness that would not go away even with 8 hours of sleep each night. I would find myself falling asleep during chaotic situations and not only was this embarrassing, but it was also very frustrating.
If there was a disagreement with one of my children, family members, or employer, I would start having this heavy feeling in my eyelids and the need to lay down became overwhelming.
This made me feel like I was doing something wrong! I could not understand how everyone else around me was able to get through the day and still feel awake and alert. I had been silently suffering for over 30 years and thought this was normal for everyone!
Waking up in a parking lot
Unfortunately, I never reached out to any medical doctors concerning all the tiredness until it was out of control. I had become increasingly drowsy while driving and trying to navigate through downtown became nearly impossible, as it would make me so sleepy I would sometimes park just to close my eyes.
I remember one time when I experienced a very sudden sleep “attack” and woke up in a parking lot behind the steering wheel of my car. I had absolutely no memory of the last few miles I had driven or parking my vehicle. The engine was running, and the car was in park, thankfully. I will never forget how confused I felt.
Afraid of what might happen
When I “woke up”, it was not like any other typical waking. I could not figure out where I was, even though this was a grocery store I had been shopping at for a few years. The feeling of having zero control over my actions became a very real safety issue. I still had to drive for work, as I did sales at that time.
Was I doing something wrong?
I was so scared something would happen again, so I doubled up on caffeine and energy drinks. I was still under the impression I was doing something wrong or I was not doing something I was supposed to when it came to sleeping. Was I supposed to sleep 10 hours instead of 8? Should I be going to bed earlier and waking up earlier? Was I sleeping too long? Was I only supposed to sleep 6 hours each night?
I didn't want to be labeled
I was positive this was something that I could handle myself without involving a medical professional. The thought of going to a doctor and saying I was tired and really struggling made me feel like I was complaining about being a mom!
What mothers do you hear bragging about how awake they feel each day and how much energy they have? I did not want to be labeled lazy. I worried that if I complained I was struggling, that somehow my doctor would assume I was unable to take care of my children properly.
Getting the help I needed
The final straw was falling asleep at an intersection during a red light. I woke to horns honking and traffic moving and I had been in such a deep sleep that I was already dreaming.
I saw my primary care physician the same day and was referred to a sleep specialist. I feel blessed that my doctor listened to me and took my symptoms seriously. I was able to have my sleep study and once I had my diagnosis, my life started to make sense!
There is light at the end of the tunnel
I wish I had gone to the doctor earlier and gotten the help I needed, but the important thing is that I eventually did! It has been a rollercoaster at times and it has taken quite a while to get my medications in order, but I am thankful every day that my first doctor validated me.
Narcolepsy is a very quirky disease. It will make you feel like you are going crazy at times. However, it can be managed and there is light at the end of the tunnel.
If you are experiencing any of the issues I have shared with you, I encourage you to see your health care provider and get tested. Finding out the underlying issue of my condition was the best thing that could have happened to me and now I know I am not alone!
What is the hardest part of coping with narcolepsy?