“Dear Diagnosis” is a Blogathon by Julie Flygare inviting all narcolepsy and chronic disease bloggers to write a letter to yourself on your diagnosis day. http://julieflygare.com/dear-diagnosis-blogathon/
Here is my letter...
Here is my letter...
“Narcolepsy is not my excuse. It is the reason I forgive myself.”
-As stated on a Narcolepsy/Cataplexy education group by a fellow Narky advocate, Katie Ratcliffe and quite possibly the best advice to apply.
Wow. Narcolepsy. I know, right?
Pretty crazy, but dear just stop there. Do not question why, when, how, etc. All you need to do right now is take a deep breath. Kudos. You’ve been right all along. There was something wrong. Now you can take a moment of peace. It is time to breathe it all in and love it all out. Forgive yourself.
Guess what? You are not crazy or lazy! Things are going to get better. I promise. You finally have a valid diagnosis and shortly after things will start to fall into place. These insane bouts of depression have been a result of not knowing you had Narcolepsy. Everything in the past will make sense. You will be able to come to terms with everything you have dealt with for the past 5+ years. The oh so beloved "Narky" status is going to explain A LOT!
You have much to learn about this diagnosis. I realize you are just like the majority of people who have misconceptions and you will feel angry about that later. However, soon enough you will understand what this all means and have the opportunity to advocate.
Although you do not know anyone who has been diagnosed with Narcolepsy, I can assure you that you will not feel completely alone. There are supportive and aspiring communities online. This is where you will find the best advice... such as, Narcolepsy is going to be the reason you forgive yourself.
These communities will give you plenty of resources. They will also allow you the opportunity to speak directly to the FDA about your specific situation. Yea yea! Oh, and make sure you hang up the phone when you are done talking to the FDA because they will forget to disconnect your phone line. Resulting in about a thousand people unexpectedly hearing your side conversation. Heehee.
Now I won’t lie. You will continue to live on a grey cloud filled with denial, however the sun shines much more often. It is nothing like the cards you were dealt before. Starting out, the biggest component is going to be trial and error with the medications. Just keep on keeping on with naps included!! You will find many new, fun, exciting and different ways to cope.
Also, please do not be afraid to tell people when you feel overwhelmed! You have no control over this weakness. The only way to stay strong and healthy is by letting it take control when needed. It is ok to give in. Stop hiding it. You are not crazy. You can forgive yourself.
Lastly, do not forget that quote. Now go nap away my dear! You have plenty of time to figure it all out.
Peace, Love and Happiness,
Cara (aka Emille Rae)