dealing with narcolepsy, wedding planning, a law degree and some new fitness goals…

Dear Diagnosis

“Dear Diagnosis” is a Blogathon started by Julie Flygare inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day.

I graduate from University tomorrow (well technically, seeing as it’s 205am, I graduate “today” – thank you narcolepsy and your late night inconveniently timed alertness).  This has been an extraordinarily tough week for me.  Just my exams are done, graduation is approaching, I cut back to one lovely part time, 3 day a week job, right when things start to settle down… I experience several paralysis episodes that were extremely frightening.

I have been meaning to write my “Dear Diagnosis” for several weeks now, and this felt like the right time.

Dear Nic,

I know it feels a little bitter sweet to finally have those words in black and white in front of you.  I also know, that you have known that these words were coming.  Relish in the relief you feel now to actually have a diagnosis.  So many others wait so much longer than you and have to fight so much harder to sit through those tests and be referred to the right places.

Some days you will feel like narcolepsy consumes you.  Some days it will fill you with fear, the unknown, ironically you will lay awake at night filled with questions about the future, marriage and babies and your career.  You will wonder many times if a Law Degree was too high a bar to set and you will not recognise this new person who questions her limitations and boundaries and who actually says out loud to people “I cannot do this”.

You will learn that saying “no” is ok, that setting limits is important.  Don’t bite off more than you can chew.  But, stay busy.  It is incredibly important for you to feel like you are accomplishing things and making the most of every moment.  You can do this.  You are strong and brave and clever and you have a brilliant brain that will amaze and surprise you constantly.

Stay grateful.   Don’t stop dreaming 😉 (like you have a choice!) You have so very much to be thankful for.  Life is beautiful and you will come to appreciate the wakeful moments more than anyone else you have ever known.

You will quickly learn that you are not narcolepsy and narcolepsy is not you.  You are a person who happens to have narcolepsy.  You also have blonde hair, big feet, scars on your knee from riding your pushbike and a penchant for cheese and olives.  Narcolepsy is a part of you now and it always will be, but it is not all that you are.

Do not get frustrated when people do not understand because, trust me, they will not understand.  Just remember that there was also a time when people didn’t understand diabetes.  Be vocal but stay calm, be persistent and determined.

You will inspire.  You will succeed.  Your path will be so very different to how you ever imagined it to be.  But it is a beautiful path nonetheless and it is your path.

Don’t be scared, even though everything that you hoped wouldn’t happen, will happen.  Your symptoms will steadily worsen, your cataplexy will become obvious, even to strangers, and yes, the paralysis will come, and it will be scary and you will be terrified.   But you will be ok.

You will find that through all of this, while your head is in the clouds and you continue to dream big, this amazing man (your soon to be husband) will absolutely astound you with his devotion and love. You will learn that the words “sickness and health” mean so much more than you ever realised.

No matter what happens, each time you wake up from a nap you will see so much love staring you right back in the face, so stay grateful and look forward, always.






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