Dear Narcolepsy,
Thank you for waking me up! You reared your ugly head and made my life so miserable that I was forced to make drastic changes. Wrangling this dragon for the past 10 years has taught me countless things about myself, life and managing a chronic medical condition.
The lessons I learned help me every day as I juggle four boys, a full time job, friends, family, blogging – and probably a few other things that I am neglecting or completely forgetting!
[bctt tweet=”20 Life Lessons brought to you by #Narcolepsy. #FunnyNotFunny”]
Top 20 life lessons brought to you by Narcolepsy:
- “No” is a complete sentence! Don’t feel like you need to justify yourself beyond “NO”.
- There is a reason why they call it the “rest room!” It CAN be used for quick rests/ cat naps!
- No one cares more about you than YOU! Be your own biggest advocate and cheerleader!
- If you THINK you fell asleep in a meeting, chances are you DID!
- Your friends will think your Narcolepsy is a novelty.
- You will have to explain WHAT Narcolepsy means in your specific case MANY TIMES, but remember that you are creating awareness.
- Having a sense of humor goes a long way.
- You WILL turn into a pumpkin if you stay out past 10:00pm – don’t tempt fate.
- Nap time can happen ANY time, and that’s OK, – you are creating awareness!
- Your boys know that mama naps here, there – anywhere. They will bring you pillows and blankets when it happens.
- Watching movies, sitting in meetings, talking to people are all overrated – naps are better!
- Some nights your dreams are so scary that staying awake is the safer alternative.
- Fighting sleep attacks is futile, embrace a quick nap.
- Starbucks is a necessity, not a luxury.
- Know your shortcomings, but don’t dwell on them.
- Celebrate your strengths and focus on them.
- Change direction, even mid-stream, no one is really keeping track of your path in life.
- Become a student of your condition, but not a slave to it.
- You have Narcolepsy; it doesn’t have YOU.
- Take life one nap at a time.
[bctt tweet=”Know your shortcomings, but don’t dwell on them. Celebrate your strengths and focus on them. “]
Thank you, Narcolepsy for making me more efficient with my energy and time. It is because of you that multi-tasking has become a necessity and a life-style. When people say “I don’t know how you do it all”, I can proudly say “I owe it all to my Narcolepsy!”
Sincerely,
Read my other Narcolepsy related posts to learn more: “Diagnosis: Narcolepsy”, “Happiness is NOT Narcolepsy”
For further information on Narcolepsy follow “Julie Flygare” and the work she does to create awareness.
That could be your blog tagline number 20! Loved this and learning more about you….I wish I had that problem to be honest. I have the opposite…INSOMNIA!
No. 6 is so true. Still have to explain to friends of 40 years that narcolepsy is just not inappropriate sleep episodes. I have to remind them that there are days I cannot do things that will bring on a cataplexy episode. Upsetting events can impact on me the next day or the day after that. Cataplexy can hover in the background for a couple of days. I had to explain to my son that the reason that I did not pick up on his cell phone call was that I was experiencing a paralytic sleep episode. I could hear phone but had to wait until my brain released my body. He had forgotten about that facet of narcolepsy. Yes, I have had nights that I preferred to try to keep awake…..I could not handle another of those horrific nightmares. I have learned through the years to have a sense of humor. I “came out” about my narcolepsy about 15 years ago. Symptoms started when I was a teenager. Chose not to address it for many, many years. I just have to make sure that someone in a meeting or event knows what cataplexy is. Whenever I am in the hospital, I make sure that anyone involved in my care knows that narcolepsy is more than inappropriate sleep episodes. It has had a major impact in my life. I had to drop out of college. However, I was able to work. I was nonstop not letting 30 seconds pass that I was not multitasking. I just had to get up from my desk, away from computer, and take a walk, especially after lunch. In those days, it was Nodoze, Vivarin, and pots of black coffee. Commuting in those days was difficult. I had to stand in the subway and get on and off many times so that I would not fall asleep and end up in the yards. In meetings, I would be pinching my arm or leg…lots of bruises. Today, medication has made my life better…..but still have narcolepsy. I try not to have it as my identity, but I have to consider this when I make decisions. My concern is …have I passed this on to any of my grandchildren?
Isobel – thank you SO much for sharing! You described my work day perfectly. I am CONSTANTLY in motion – jumping from one task to the next – and after lunch is the hardest part of the day. I have to walk around several times. Thankfully my coworkers know and understand what it is. I also avoid meetings as much as possible – ESPECIALLY afternoon meetings. It’s hard to explain that it is not that I am not interested or paying attention – it’s just NARCOLEPSY! I hope your grandkids are OK. I believe that my dad had it, but he has since then passed away – so we will never know for sure.
My dad most likely had narcolepsy. He would fall asleep in the evening even if we had guests. The explanation was that he worked so hard. I am fortunate that I was able to work. I am saddened to read of those young people who cannot. I know that there are different degrees of narcolepsy. My most distressing time with narcolepsy was after the birth of my son. I had the first of my urinary tract infections after the c-section. (In hospital for ten days)
During that time I could not stay awake. Doctors and nurses would be not too kind. It scared me to hold this little bundle in case I fell asleep holding him. This fear continued for quite a long time. The little bundle now has three of his own.
Haha I feel overly tired all the time too. This time change sucks and makes me extra sleepy throughout the whole day.
Great post! This was an interesting read for me, because my brother has narcolepsy.
Wow MaryAnne – what a “funny” coincidence. I hope your brother is managing well!
Spanish transalation! Traducción al español
1. “No” es una oración completa!
No sientas que tienes que justificarte después de un “no”.
2. Por alguna razón lo llaman “cuarto de descanso”
PUEDE ser usado para pequeñas siestas!
3. Nadie importa más que tú. Sé tu principal animador.
4. Si crees que te estás durmiendo en un encuentro,
es muy probable que de hecho lo estés.
5. Tus amigos piensan que la Narcolepsia es algo novedoso.
6. Tendrás que explicar lo que significa la narcolepsia
en tu caso específico muchas ves, pero recuerda que
estás creando conciencia.
7. Tomar las cosas con humor lleva un largo camino.
8. Te convertirás en calabaza si permaneces afuera
pasadas las 10 de la noche -no tientes al destino.
9. La hora de la siesta puede ocurrir en cualquier momento,
y está bien – estás creando conciencia!
10.Tus niños saben que las siestas de mamá son aquí, allí
– en cualquier lugar. Te traerán almohadas y mantas cuando suceda.
11.Ver películas, sentado en las reuniones y hablando con la gente
son todas actividades sobrevaloradas -¡las siestas son mejores!
12.Algunas noches tus sueños son tan aterradores
que permanecer despierto es la alternativa más segura.
13.La lucha contra ataques de sueño es inútil, abraza una siesta rápida.
14.Starbucks es una necesidad, no un lujo.
15.Conoce tus defectos, pero no te detengas en ellos.
16.Celebra tus puntos fuertes y céntrate en ellos.
17.Cambia de dirección, incluso a mitad de camino,,
nadie está haciendo el seguimiento de tu vida.
18.Conviértete en un estudiante de tu condición,
pero no en un esclavo de ella.
19.Usted tiene narcolepsia; la narcolepsia no lo tiene a USTED.
20.Tómate la vida una siesta a la vez.
#14 Make your own coffee, and carry a thermos. I couldn’t afford to buy the coffee I drink.
Such a great point, Ted. I actually played around with different coffee combinations this weekend – so I can save some money and make it at home!
This is great! And so true. Use to have the Starbucks gold card. It was a hard and another exhausting day. I have only been officially diagnosed for a year. #14-#20 really spoke to me. Thank you!
I am SO glad my post was encouraging to you! I am sorry you were diagnosed – but I am glad you got answers!
Thank you for posting about your narcolepsy! It helps me to better understand my own narcolepsy, feel validation in my symptoms and to know that I’m not just lazy and crazy, and to really accept that it’s okay not to be okay. I was diagnosed a couple of years ago in high school, and at this point I am still struggling to accept that it’s not going away any time soon and finding ways of dealing with it. Just wanted to let you know that I appreciate that you are brave enough to be so open about it and share your perspective! 🙂
Callie, THANK YOU for letting me know that my post has helped you in some way. I don’t write a lot about my narcolepsy, but I have recently thought about changing that. Your message shows me that I am helping someone – and that’s so valuable. THANK YOU. And NO… you are not crazy… and it IS OK to not be OK.
I was going to write about all the things that I have had to change, but I decided against focusing on the negative aspect of Narcolepsy. Thanks for finding my blog… Good luck to you. My advice: take life one nap at a time! XO
Awesome!!! I couldn’t stop saying “Yes” “awesome” “that’s right right”, laughing, crying and smiling form ear to ear! Wow! You just hit it on the head. Ok, let me explain some real quick as to why I’m responding like this. I am 36years old, wife, mom of two and a full time team leader at my job. I was diagnosed with narcolepsy, chronic migraine and migraine associated vertigo almost 4years agoe. But I have had narcolepsy since about 10years old. So, with what was said I understand it so well. And it’s awesome to find others that understand it too. No I don’t like that others have to deal with all the thing’s that go with narcolepsy. Cause it is a lot on your body, mind and everyday. But the one thing I love about it is how strong we are and the life lessons we get to teach other’s. To show them how to be strong when life throws something at them.
Thank you for reading and I wasn’t planning on writing that much. But maybe someone needed it,
A friend Rachel.
Thank you SO much for your kind words, Rachel. I am sorry you also are on this journey – but I am glad to hear that my words resonated with you.