Taking on Narcolepsy as a New Mom: Guest Post by Cherae Robinson

by julie on May 21, 2013

REM Runner’s Intro: Meet Cherae – a teen mother, college graduate, medical assistant, 20 year old woman with narcolepsy. Young people with narcolepsy may worry about having children, wondering if they’ll have the energy to care for a child. Fair enough. Yet I’ve met many inspiring parents living with narcolepsy. I’m thrilled to share one amazing story today.  

“As the days go by, we find new ways to cope.”   -Cherae

 

As a freshman in high school, I was full of life and energy. I was athletic and on the varsity cheerleading squad, cheering on our football players. I was hanging out with friends and always on the go. My sophomore year I started to notice a change in my lifestyle. I found myself never wanting to do much, and constantly needing a nap after school.

Not long after, I got pregnant at age sixteen so I thought my symptoms of being tired, constantly needing to nap and always feeling groggy were related to being pregnant. I hadn’t a clue that narcolepsy and obstructive sleep apnea were the cause of everything.

After my son Ashten was born, I found myself still always wanting to sleep but what mother of a newborn isn’t tired? I struggled daily, but I forced myself into the habit of fighting to stay awake. School was still on my plate, but I also knew I had to do everything I could to give my son a better life.

My friends called me in the mornings to make sure I was awake for school, and one of my very close friends would come pick me up every morning to make sure I got there. In class, I tended to fall asleep, but my friends saw this and would tap me and talk to me to try and keep me awake and focused. After school hours, I always had my friends over to help me, I would sneak in a nap right after school. If i didn’t nap – I would get to be grouchy and non-talkative to everyone. But I often looked at my little boy and knew it was all worth it.

Finally high school graduation came and my son was right there in the crowd. Soon after high school graduation, I went straight into college and my close friends and their families continuing to help me.

While in college, I noticed a change in my son which ultimately changed both of our lives. At age 2, my son was diagnosed with ADHD. He bounced off the walls and couldn’t pay attention to me. I found myself crying at night sometimes because he was so hyper and all I wanted to do was sleep.

When Ashten started an ADHD medication treatment, his energy levels calmed down, and I was able to sit him down and talk with him. I told him, “Mommy is sorry that we don’t go out much and we have a lot of movie nights, but I feel there is something wrong with Mommy, cause Mommy is always tired.”

At this time, Ashten could recognize my sleepiness, and I could tell it affected him. After a few discussions, it seemed that he could understand. I couldn’t ask for a better little boy, we have built a bond that can never be broken. If he sees me starting to dose off, he curls up right beside me and will take a nap with me. I’ve trained myself to NEVER fall asleep when I have him unless he is to nap with me.

There has been times that I’ve had to call a friend and tell them I couldn’t make it and they would come right over and let me sleep. I would sleep for hours and not wake up and sleep through the whole night. When I woke up, my friends had feed, bathed, and even cleaned my house, and would wake me up the next morning.

Not only were my friends my light at the end of the tunnel, Ashten’s father worked with me because he knew the hyper full-of-life energetic version of me and saw how my life had spiraled downhill into always sleeping, so he would get our son every other day to help out.

My symptoms gradually got worse, but with the help of my friends I managed to get through college with flying colors.

I went to a few doctors trying to find answers but they all seemed to think it was related to my high TSH levels. But I finally found the one doctor who put out a helping hand. I told her I just couldn’t do it anymore. I told her that my need to sleep was affecting my son. Instead of playing outside or doing other things, we were always inside relaxing. I didn’t want to continue to live like that.

I recently went to my sleep study and during my MSLT they actually told me that I didn’t need to stay for any more naps cause during my first three naps I had fallen into REM, which indicated narcolepsy. I was put on medication and it has changed my life so much. I had forgotten what it feels like to have a life, go out to do things, to live a normal twenty year old life.

Its heartbreaking to know that all this time this was the condition and no one listened to me as it was slowly taking over my life. It ruined my relationships with significant others, family, friends. I feel like I missed out on so much in my young years because I didn’t have the energy to get up and go. I was home sleeping.

Once I found out I had narcolepsy, I had the answers to give my son. I sat Ashten down and explained it to him. He looked up at me and said “It’s okay, Mommy.” Every day is a struggle but Ashten and I get through it! We always say these struggles make us stronger. We’ve built a bond through all this, and it has brought us so close. As the days go by, we find new ways to cope.

I’m sharing my story to connect with other young girls, to show that even though we do suffer from this sleep condition all things are possible. All things from getting pregnant at 16 to graduating high school, going on to college and graduating all while living with the condition of narcolepsy.

Never doubt yourself – you can do anything you put your mind to. A good support system is a life changing factor, I couldn’t have done any of this without my friends. I may struggle from narcolepsy but I refuse to let it take over my life.

REM Runner’s Closing Thoughts: Thank you Cherae for sharing your incredible journey on my blog. Despite facing adversity as a new mom with narcolepsy, your courage, determination and positive attitude are awe-inspiring. 

{ 5 comments… read them below or add one }

Jessica August 30, 2013 at 3:01 am

Wow. Cherae, you are truly inspirational. I think all women with Narcolepsy who are hesitant/worried about having children should read this. It shows that although it may be tough, it is completely possible and worth it.

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Arianne October 28, 2013 at 10:31 am

Inspiring, Even Before I Was DiagnosEd I WantAs MotivateD. IM 3Month Pregnant And Struggle Everyday With ThingsA Lot OF People Take For Granted. Even Educating FriendsI Don’tBelieve They Truly Understand The Effect It Has On Us, EspeciallyBeing Pregnant. I’m Blessed To.Have Great Family And A Understanding HUsband Without Them I Don’tKnowWhere I Would Be……Sleepin More. Lol

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Ly'Nae June 30, 2014 at 5:31 pm

What a blessing to have been diagnosed when you were. My children were older 8th,5th ,2nd grades. I had my first child at 21. I was not diagnosed until my 30’s. I will soon be turning 45. I also went to different doctors and counselors put on anti-depressants because I am sleeping all the time. Dahhh who wouldn’t be with 3 kids and a husband working swing 12 hour shifts not understanding why are you tired staying home all day and me not understanding myself. But the overwhelming quilt I felt for not taking my kids to the park or going outside to play established the foundation of quilt and destruction of my self esteem I have spent years trying to regain. we would be on our way and a sleep attack would . I felt guilty about everything my daughter didn’t do well on a spelling test it was because I fell asleep trying to study with her. Not to mention the issues it caused with my husband.
When I was diagnosed I was sooooo happy to find out I actually had something.
I started taking provigil and was told it was ok for me take a nap I had not realized how limited my existence had been. The first time I drove to my daughters basketball game I was extremely excited because If I could help it I never drove 15- 20 minutes from my house for fear of what I know now was a sleep attack and getting stuck in traffic was literally torture. It affected every area of my life to where I went, what type of jobs I applied for, and at times job performance. I remember getting reprimanded for falling asleep during workshops. I also remember my mother telling me in 5th grade that my teacher called and said I needed to go to bed earlier because I was falling asleep in class.
My journey with Narcolepsy has been long one and I appreciate blogs like this because when I was diagnosed you rarely heard mention of Narcolepsy. Along with some other issues such as ADD and Sleep Apnea. I have to constantly remind myself I am not just lazy or unorganized but these are legitimate disorders and need to be taken seriously. I am very grateful for the people in my life that are supportive and understand I am not making excuses or using these things as a crutch….
I am grateful to those that share their stories. This has inspired me to make others aware of Narcolepsy. So I often I get from people I fall asleep all the time too. Or from professionals I had a psychology teacher tell me I think that is insomnia or something else. Really? I moving forward taking classes and living my life. I’m going with the 40’s are the new 20’s. And I’m like fine wine getting better .-) Going to take a nap now…. just kidding 😉

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Jenny May 23, 2015 at 1:20 am

My daughter recently turned one. When I was pregnant my narcolepsy was almost no existent! My doctor said this made sense because it is an autoimmune disease and those can be suppressed when pregnant. However, once my daughter was born it came back full force. My wonderful husband did all the night time duties! We decided this was best after several hallucinations involving the baby.
She is a toddler now and I am a full time teacher. I am exhausted. I want so badly to take a nap, but I also do not want to waste those 4 hours a day I get to spend with my daughter. It’s really hard managing everything. My husband tries to understand, but he just doesn’t get it. He is frustrated at the fact I can’t decide what to have for dinner. He doesn’t understand how hard it is to make simple decisions and that I am more than just tired.
Finding this blog helps. Knowing that I am not alone and what I feel is “normal”. Well normal for us!
Thank you and please keep posting, so I don’t feel so misunderstood!

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Stephanie Chase April 14, 2016 at 3:32 am

I am 32 years old and 4 months into my 4th pregnancy. It seems to be more challenging each time but usually starts to get better around 20 weeks or so but always has come back within a few months after giving birth for me. My children are 12, 7, 15 months, and due in October

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