Narcolepsy and Newton's Cradle

Almost everyone can picture Newton's cradle: the 5 balls hanging in the centre with the one at the side constantly being knocked into the air.

I've given it some thought and think life as a person with narcolepsy is a lot like the ball at the edge. Knowing you are stable, in control, and in the centre, but aware that the nature of narcolepsy means you are always moments away from being tossed in the air.

Living with narcolepsy can be a challenging cycle

It is like life with narcolepsy cycles. One year you can be fully functional and living your fullest life, going to work, or taking care of family and kids. Then a year later you can find yourself unable to hold down a job, struggling to take care of your personal, physical, or emotional needs.

You find it challenging to function well. Somehow you find one task a day is all you can handle. The rest of the day is spent sleeping, not because you are depressed, but because your meds no longer work and your body is exhausted all the time.

Adjusting to a new normal, and grieving the old one

This is now your new normal. I find there is always a grieving time when you miss when life was "normal," when the medications and tricks you have perfected throughout the years were working in perfect harmony. You felt you were accomplishing the things you wanted throughout the day.

The grief and adjustment to your new normal are painful and painstaking. You have to learn to be gracious to yourself or you drive yourself crazy. When you reflect on the good old days when you were so functional, it is hard to understand how things have changed so much. You find yourself asking, "How did I get here?"

The difficult part is remembering that just because I'm struggling now, doesn't mean the pendulum won't swing the other way and I'll end up back in a more stable position again for a while.

I am inspired by others' experiences and accomplishments

I'm always inspired when I hear or read about people with narcolepsy who are doctors, nurses, or firefighters holding down a full-time job. These people are even more inspiring when they manage to achieve these milestones in their careers while having narcolepsy.

This is not to take from those who got diagnosed or started having symptoms later in life when their careers were already established. But there is something quite amazing and encouraging to understand the struggle, understand the daily fight the individual went through to achieve their goal and thrive.

This disease hits hard either way, but there is a difference for those who have two perspectives on narcolepsy: their life before being diagnosed with all their accomplishments, and life after with the grief of losing their prior life and now learning to live with the limitations of their new life. These are things they did not have to think about before. The person who was diagnosed at an earlier age might not have a lot they remember or accomplished before narcolepsy to focus on or grieve about so their perspective might be different.

Knowing when to let go, and knowing when to fight

I think the key to persevering with the challenges of narcolepsy is knowing when to let go and surrender and also knowing when to fight on and advocate for yourself. It is remembering when you're up in the air and everything feels out of control that it most likely won't always be this way.

Has living with narcolepsy ever felt like a back-and-forth between accomplishment and struggle? How have you managed to adjust to your "new normal" after learning you have narcolepsy? Share with us in the comments below.