Dear Patrick

About a year ago, on October 25th, 2012, I was officially diagnosed with narcolepsy. If I could send a letter back in time to myself on that day, here is what it would say…

Dear Patrick,

The next year is going to be difficult, but at least you finally have some answers to a lot of the symptoms and problems you have been experiencing for a very long time. Fortunately you are done with psychologists and psychiatrists misdiagnosing you and you don’t have to do any more sleep studies or uncomfortable neurological tests. It is going to take awhile before you start to get better, but you will, it will just take some time.  You will try different medications that won’t help you but eventually you will find something that does. You will feel worse before you start to feel better and you will have several job changes as well.

It is hard to believe that you had such a serious condition for so long and it took so many years to get a correct diagnosis, which is very frustrating. Especially since you have been telling doctors about being extremely tired all the time and nobody ever bothering to check to see if you have a sleep disorder. There will be many challenges along the way and you will  have troubles with your marriage, but in the end it will be stronger than ever. After working with your doctors and trying different medications your condition will begin to improve and you will feel better than you have felt in a very long time. However, you will still have some bad days where you can’t focus and feel like sleeping all day but those days will start getting fewer and farther in-between. Even a year later things aren’t perfect but they are slowly starting to get better and the future seems brighter than you ever imagined that it would.  You may not notice that you are becoming a stronger person, other people may notice it before you do. The best thing to do is not to give up and try your hardest to improve your situation and you will get the results that you thought were impossible. In the last year you have also not had a single car accident or traffic violation and lately you haven’t been forgetting things quite as much as you used to, although it still will happen more often than you want it to and that will probably not change but it’s best not to let it bother you too much. Things may be overwhelming right now and the future may seem hopeless but I just want you to know that a lot has changed in a year and I believe that things will only get better for you in the years to come.

 

*This was written as  part of Julie Flygare’s Dear Diagnosis Blogathon, learn more here: http://julieflygare.com/dear-diagnosis-blogathon/*

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9 thoughts on “Dear Patrick

  1. Patrick – thank you for sharing your amazing letter looking back over the past year. “You may not notice that you are becoming a stronger person, other people may notice it before you do.” My throat clenched and eyes filled with tears reading this beautiful description. How very true! I’m so glad you are able to see some light in the future, as I must admit I was still struggling to find any perspective a year after my own diagnosis. Time has this incredible way of changing our vision and I know you will continue to get stronger with time. Keep going, I’m cheering for you! Big smiles and many thanks, Julie

  2. Thanks for sharing your letter Patrick. I too can’t believe no Drs. thought to send me to a sleep center. It seemed so obvious once a Dr. recommended that! Man!

    I am so excited for you to have a proper diagnosis so you can get down to sorting it out. I have a suspicion it’ll be an on-going task as new/better treatments are developed and our bodies change over time. The good news is, us PWNs have each other for support as we figure this all out. 🙂

    Best of luck to you Patrick! Thanks for your share! 🙂

  3. I love this post well done!
    It is sad that many doctors first assume depression instead of sleep disorders related to exhaustion… I think sleep disorder is more visible by (results and sleep tests), than depression scales are, and i think both are important to be honest.

  4. Thanks For sharing your story. I’m glad you finally got the help you needed. It’s sad that so many go through years like this. Making more people aware of narcolepsy is part of our journey now.

  5. I just found this blog and it has made my day. My boyfriend was diagnosed several months ago, and narcolepsy has been increasingly affecting his life. Just this week, he was insomniatic for nearly 3 days, missing two final exams because of his need to sleep. It’s heartbreaking for me and hard to understand what he is going through, especially because we have live 3000 miles apart at the moment, but reading about your experience is invaluable and gives me great comfort that we aren’t alone! Thank you for sharing.

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