Guest Post: Dear Robin

by julie on November 9, 2013

RobinGuest post by Robin in response to the “Dear Diagnosis” Blogathon prompt. Read more letters and join us here.

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Dear Robin,

Ok! Finally an answer for why you have been exhausted for 12 long years! Why you’ve never seen the end of a movie, fall asleep in the voting booth, and can’t seem to get it in gear after having given birth 15 months ago. Sure, you sleep when the baby sleeps, but you also sleep when the baby plays, carefully positioning yourself across the threshold of her playroom door. She will wake you if she tries to leave the playroom…you hope.

Your doctor, the one who thought your severe, chronic migraines might be related to sleep issues, was spot on! But, what you don’t know yet, is that he will soon be moving, out of state, and those great stimulants he put you on, they don’t work long term. Same with the sleep aid, not really a long term plan, but all of this is hindsight, 20-20.

Your family doctor is fine prescribing your monthly dose of Ritalin, same for the Ambien. She is not a “sleep doc”, but you feel so much better with these medications that you will spend the next 10 years in denial. For a decade, no one knows you are not well. You tell only your husband. You hear the horror stories, but that’s not you, you have your meds, you feel great! Poor fool, ignorance is bliss.

You’re going to continue going through the decade, blissfully unaware of major changes occurring in your body. You choose to ignore the weight gain, you’re tall, so pulling off 184 pounds is easy. The elevated cardiac enzymes, must be a testing error. The increasing aches and pains, nothing that Motrin can’t handle! 

But then, one day you will become aware of something that will scare you, the Ritalin, when did it stop working? You’ll find yourself taking two at a time…. After a while that little trick no longer works. The Ambien, not working as well either, so you’ll start adding over the counter sleep aids, only to find yourself awake in two hours. You’ll start having frightening nightmares, or are they real, you won’t be certain of anything. Your coordination will start to falter, you’ll start arriving places, but have no recollection of having driven there. Your world will become very isolated, even from the loved ones in your home, as sleep takes priority over EVERYTHING!

On one Sunday, in the fall of 2011, You will be so upset with yourself, but when you try to explain your frustration, you’re going to find that you can’t find the words for ordinary household item, much less find the words to articulate your feelings. You’re going to be scared. You are going to find yourself questioning the quality of life….you’re going to be petrified.   

Now, before you work yourself into a complete panic, there is a positive  that comes from hitting rock bottom. You will find a new sleep doctor who will save your life. You will start on new medication that will allow you to be an active participant in life. It’s going to take time, patients, and structure, and a TON of each of those! Heck, you won’t even know that the new treatment is going to even going to work until you awaken on morning 47, and you won’t feel “good” until morning 124! But by then, you’ll have developed great sleep hygiene, an awesome routine, positive habits, and a brighter outlook on life. 

Before you know it you’ll start educating yourself and others about narcolepsy and cataplexy,  you will reach out to others for support and learn that you are not alone. You’ll go to your first Narcolepsy Network Conference and meet others who really “get it” and your life will be  forever changed.  You have suffered alone for 23 years, alone no more! You’ll work with that great new sleep doctor to start a local support group, and you’ll be offered several opportunities to help others navigate their own life-changing treatment. You’ll stress time, patients, and structure to those just starting out on their journey.

As you approach your two year mark on your treatment, you will take inventory on your accomplishments: you’ll take pride in having earned your SCUBA certification with your entire family in Hawaii, you’ll add a tennis trophy of your own to the case dominated with your daughter’s tennis hardware, you’ll create beautiful memories on a three-week (very active) tour of Spain in the summer of 2013. Oh, and you’ll be in the best physical and mental health of your life when you celebrate turning 40! 

Love, 
Robin

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