Sorry, I Forgot!
What a hard pill to swallow! Could you imagine not being able to depend on your memory for important dates? I think it is harder if you're a person who has always been organized and timely.
My journey with this disease has changed my confidence in myself, and it has taken many years to accept it. My memory issues worsened gradually, and I became frustrated and embarrassed.
Mild narcolepsy symptoms until my 30s
I had mild symptoms as a child and teenager. However, it was not until I reached my 30s when things became unmanageable. I was already a mother and in the prime of being a typical "soccer mom."
I drove the kids to school each morning and picked them up each afternoon. I was the first to volunteer for school projects and never missed a scheduled activity. This all began to change when my narcolepsy symptoms progressed.
I was raised to be early for everything
It started with remembering appointments at the last minute. This was before everyone had a cell phone when there were no digital reminders!
I would feel the "OH NO" gut-wrenching feeling when I realized I had an appointment in 10 minutes. I was raised to be 15 minutes early for everything. Being late makes me very anxious and of course, is a trigger for my narcolepsy.
My memory was getting worse
My memory started to get worse, and I started missing appointments completely. I would be surprised when I received messages to reschedule, and the guilt would set in. I do not like wasting people's time and I do not like the appearance of being a flake!
When I began to forget important birthdays and events, I knew I needed to stop depending on my memory alone. I can tell myself a thousand times that I will remember something because it is important. However, it never seems to work for me. I realized I would have to start writing things down, and I would have to swallow my pride and buy sticky notes.
Adopting new habits
As my symptoms and triggers continued to progress, I began to miss appointments of which I was completely aware of. I would see the sticky note or entry on the calendar in the morning and had every intention of going. I would tell myself not to fall asleep, knowing darn well I would never make it if I closed my eyes.
No matter how hard I tried, I would still fall asleep. This prompted me to make appointments for the time of day I am less sleepy. I stopped scheduling anything for the morning hours and made sure I had ample time to take a quick nap before picking up the kids. If I had to take the kids to an appointment during my sleepy time, I would ask my husband to accompany us.
Removing triggers and planning ahead
I have had many years to find what works for me. I have narrowed down what hours work best for my schedule, and I start to get ready the day before. I have removed the triggers that make my tiredness worse on appointment days. I do not watch television or try to read anything.
I make sure everything is done the night before, so there are no chores on my plate to distract me or tire me. I have learned never to schedule 2 things on the same day. It is a guarantee I will miss 1 of them if I do.
Accepting that I need extra help
I've accepted the fact I need extra help with my memory, and I am OK with that. I would rather take a minute to schedule a reminder than have the guilt for forgetting!
Sometimes it is embarrassing when I must stop and put reminders in my phone. However, I need to do this, or I will forget details as soon as I move on to my next thought! Thank goodness for alarms and being able to set multiple reminders for one event!
Finding what works for me
I am able to attend most of my appointments now that I have found what works for me. I am not perfect! There are days that I call to reschedule commitments, but this rarely happens.
I no longer miss birthdays and important dates. It took a long time to learn how to deal with this issue, but I will not let narcolepsy win!
Do you feel that others judge the severity of your narcolepsy based on how you look?