Friday, November 1, 2013

Dear Diagnosis

My first blog post!!!

I don't always read Julie's posts but I did today. She started a Blogathon inviting people with narcolepsy and other chronic diseases to write a letters to themselves on the day of their diagnosis. I obviously loved this idea enough to start my own blog.

I don't foresee me writing very many posts but who knows. Maybe I'll start doing this instead of time consuming videos... eeek!

Here it goes:

Dear Billie,

Yes... it's me, your future self. I know you are scared of what the future may bring but let it be known you are still the same silly Billie. First off you need to call your mother right now and tell her you need her to drive you to your appointments in the city. You are not a safe driver. You cannot focus on two things at once let alone drive.

Stop being so stubborn and let the people who care for you help you. Yes you think you are tough and you've made it this far in life having a condition you cannot explain. You were right in your research about the hallucinations and sleep paralysis. You have narcolepsy, its not the other way around. It does not own you. Your symptoms get better once you start taking care of yourself and become middle aged. Joking, but really you will soon have the lifestyle of a 60 year old. It's fine though because you will feel wonderful (most days.)

It's OK to scream, to cry, to run until you cannot lift your feet, to nap for hours, to not get out of bed for days. These things motivate me now. I remember how bad it was and you need to go through these lows in order to gain a higher understanding.

Don't worry about what others think of you. You're not contagious and you're not going to die from this. It's nothing to be ashamed of. Stop trying to be the old you and tell your friends about the new you. I know, I'm bossy now. No more "free-spirit, living in the present." You have schedules, to-do lists and sticky notes everywhere.

The future is bright with not as much fog. Remember to smile and put a positive spin on everything you do. Continue to listen, love and grow.

Billie

3 comments:

  1. Billie - I love this letter and congratulations on your first blog post! "...you will soon have the lifestyle of a 60 year old. It's fine though because you will feel wonderful (most days.)" You are as witty and on point in writing as you are in your videos. "It's OK to scream..." Thank you for this paragraph, I needed to hear this today. Thank you for sharing your letter and I look forward to reading more posts in the future. Your friend, Julie

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  2. Thanks for sharing. Keep up the blog. Good for making other aware of what you are going through on a daily basis. I say this, and I don't blog. But, I might try it as well. I am a narcoleptic mother of a severe narcoleptic. May be too much to write about.lol

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