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A Little Comforted...

by Ava
(Minneapolis, MN)

I was diagnosed with narcolepsy when I was 22 years old, I am now 34. My mom will tell you that from as young as 5 years old she remembers being unable to wake me up for school. In high school I would skip school to sleep.


I was misdiagnosed (which is oh so typical) with depression all throughout my teenage years. As an adult and having suffered with the sleepiness my entire life I knew in my heart that there was a bigger issue so I underwent a sleep study. They almost seemed surprised at how quickly I could fall into the REM state of sleep (within 3-5 minutes of closing my eyes).

I was prescribed medication and honestly don't even know what the name of it was as that was over a decade ago. I gave it a whirl and I have never liked taking prescription drugs so from the jump it wasn't something I wanted to do. It literally made me feel NUMB, no feelings, like a zombie so I stopped taking that and they prescribed Ritalin to me which I filled but never ever started. I figured, hey, I've managed to cope for the past 22 years I can continue to "cope" on my own.

Well, over the past year or so the fatigue/exhaustion has taken a turn for the worse leaving me in a state of uncontrollable sleepiness lasting for up to 3 days only getting up to use the bathroom, eat a small meal/snack or a drink. Prior to this the longest I'd ever gone was 36 hours in bed which was rare. Now it has become a weekly occurrence.

I am married with 3 kids (3, 8 & 15) and it has taken a huge toll on my family as well. I lost my job back in May on account of my absences/tardiness due to these sleep attacks that I have been experiencing. Prior to losing my job I had a 2nd sleep study done at my primary physicians request. Again, reconfirmed that I did indeed suffer from narcolepsy. I don't know what she thought, oh it cured itself? So, now I am on 60mg of Dextroamphetamine (10mg 6xday) which helps but the problem is...it ONLY helps when I can pull myself out of bed!

I haven't had a "normal" sleep cycle in months. When I say "normal" I mean, go to bed at a decent time, wake up for work, repeat. No, I don't abuse my medication but it has kept me up for 2, sometimes 3 nights in a row. Then, when I finally just cannot keep my eyes open any longer I CRASH! Keep in mind though that I was already sleeping for 2-3 days at a time. The problem now is that I'll crash and when I wake up my house is in complete shambles so it takes a couple of days for me to whip it back into shape; laundry, dishes, sorting mail, e-mails, errands, etc. It's like this VICIOUS cycle that I cannot get myself out of now!!!

I have lost far too much weight from the medication/not eating for days (because I'm sleeping) and I am depressed, worse than ever before in my life. I was diagnosed with bipolar about 2 years ago and the medication for that combined with the Dex just was NOT a good mixture so I have been off my bipolar meds for over a month now. Clearly not helping as my emotions are completely out of wack. I'm moody, I catch myself staring blankly into space all the time, it's like I am NOT EVEN HERE.

My husband and I had one of our biggest arguments about it last night. Prior to this, one had become quite physical, he poured water over me to "wake me up" and of course I got upset and he didn't hit me but I was pretty bruised up the next day. He's tired of me neglecting our children, which, in all fairness, yes, that is what I'm doing but what he does not understand is that it is NOT SOMETHING I AM CHOOSING!!! He is frustrated because he works and can't be home to take care of the kids, my 15 year old has become burdened with the responsibility of caring for her 2 younger sisters. Cooking, helping with homework, bathing, etc. while I'm in my bed in lala land. Well, we recently discovered that our 15 year old has been smoking weed, got suspended for doing it at school then I found her journal and discovered that she's been having sex, getting drunk and hanging out 21 year old grown men. Last summer a friend of hers notified me that she had been cutting herself so she's been on this downhill spiral of self-destruction. I know she needs me to be there for her emotionally, physically, mentally. My kids are suffering. If anybody understands that...it's ME! I carry that burden with me every single day I look at their precious little faces.

My husband refuses to learn about narcolepsy (we've been together for 16 years) yet he is so quick to judge me and belittle me. Last night was really my breaking point. He keeps telling me I need to "help myself" and his suggestion is to go to the doctor. I try to explain to him that there is NOTHING else they can do for me! He told me that I'm a worthless piece of shit, any other man would've left me years ago and what left me with an open bleeding wound was this, he said, "You are 90% of the reason our daughter is depressed & suicidal." I just broke down. What he fails to realize is THAT is an EXTREMELY heavy burden to carry whether it be true or not...I carry it nonetheless. Can you imagine walking around every day reminding yourself, "This is your fault. So is this. Yep, that too. You did this to your children."

I have been suicidal within the past few months, even going as far as googling "best bridge to jump from to commit suicide" in my city. Of course I never did it.

On top of all these horrible things he's saying to me last night he tells me he wants me to leave. He's not going to "enable" me any longer. I'm like, "ENABLE ME TO DO WHAT? To suffer from this god awful sleep disorder that controls my life?" So, I packed a bag and went to leave but he took my truck keys, said that it's "his" truck and so I asked him for a ride and he refused. He said he's not going to let me live here while I sit and hurt our children anymore. God help me, if he ONLY knew!!!

I got in the shower and I punched myself, I banged my head so hard on the wall I'm surprised I didn't knock myself out and I took a razor and sliced up my wrist. I just wanted that pain to GO AWAY! I have never in my life physically harmed myself but I can't do it anymore. This emotional pain is eating away at my soul. He is supposed to be my BEST friend!

I feel like everything I touch turns to crap. I feel like the "needy" friend all the time because I'm constantly dealing with one thing or another and I feel like everyone would just be better off without me. What is the point to living anymore? I'm not living. I am LITERALLY hanging on by a string!!! What kind of "life" is THIS? It's a constant struggle just to feel some sort of normality. I'm exhausted.

I got on the internet tonight looking for someone like me and stumbled across this page and it has given me a bit of hope, I guess. I just wish my family could understand that I don't do this TO them. I tried comparing narcolepsy to cancer when explaining it to my husband. I said, "would you treat me this way if it were cancer?" His response, "You make a conscious decision to not get out of bed." Ha! It just goes to show that he knows ABSOLUTELY nothing about this condition and how debilitating it is on a human being.

I made an appointment to see my doc next week but I don't take much comfort in that though. What else is there? More medication? Yipee! No amount of medication or therapy can help me function like a normal person and I know this for a fact. But, I want HIM to come with me so he can hear it from my doctor that THIS IS NOT SOMETHING I CHOOSE! I want him to be ashamed of himself for pouring water on me to wake me up because I am suffering from an incurable sleep disorder. I want him to feel like a coward for abandoning his wife for not having a normally functioning brain like everyone else! If anyone, I would expect him of all people to stand by my side and the emotional & physical abuse is just getting to be too much for me. I want to wake up in the morning like a "normal" person with a routine for my family but how can I do that? Is there anyone else out there who is experiencing a similar lifestyle? The 2-3 day bouts of sleep attacks? If so, please, I am begging you, I need some ideas, a solution, anything! I'm extremely close to calling it quits.

Comments for A Little Comforted...

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Jan 27, 2013
Response to Ava
by: Lynn

Dear Ava:
I hear what you are saying. It is hard enough to go through this disorder and the effects on your children. But it sounds like the support of your husband is really important and needed. I think you are a good Mom by what you do when you are able to wake up, from how concerned you are about your daughters, how you discovered what your oldest has been up to - obviously she wants to be caught. Please keep moving forward, if your children could be asked the question I am sure they would rather have their mom sleepy than not at all. Also for your husband he clearly doesn't want to know about Narcolepsy, because if he knew, he would have to accept there is only so much you can do about the condition. But there is still hope. You do make the family life better when you are able to. Also meds can be adjusted - perhaps they are too high. And perhaps there is an expert you can see on co morbid conditions (people who have two conditions at once as you do) who knows how to work with medications. I think your family needs to know what to expect on this condition - perhaps a family support group even if it on line. Your kids could benefit even if your husband refuses and they might influence him. Its incredible to me you have managed this condition for so long on your own. Please keep going - there has got to be some solutions out there.... There is always a way to function better even if its not perfect.
God Bless, I am praying for you, I hope this was helpful.
Lynn

Jan 28, 2013
i am here for you and can introduce you to your new 2nd family
by: Anonymous

hey ava, i just read my life experience when i read your story. you are not alone.

a friend that is involved with this website contacted me about your story. actually, another friend of mine was contacted as well, but she hasn't logged into facebook yet. i think that you will feel a lot better once you talk to us. i wish i could crawl through the internet and hug you and tell you that things are going to work out, but i can't do that. ;) you can let me know how to contact you, though, or i can let you know how to find my on facebook. actually, i'll give you a link to a fb group that i created a couple years ago. there are several communities on there where you can meet others and it will help you just the same as it has helped many others like us... including me. finding others like myself was literally a life saver, and i know you can understand what i mean.

here is the link. please get on facebook and join the group and let me know who you are. you have some sincere friends waiting there for you.

https://www.facebook.com/groups/narcresource/?fref=ts

-Shanna

Jan 28, 2013
Lonely Together
by: Crystal

Hi, Ava. I was contacted by a friend after they'd read your story, and after reading, I must say it was very painful. What has happened to you is not your fault, and I can see that you know that. It's difficult from any perspective to view Narcolepsy as anything but ugly especially when you're the one suffering. I wish people could see that we would give anything to be able to be normal, whatever that is. When those that we love don't try to understand I believe it makes it that much harder to fight through this condition. Tough love isn't really love at all. There are communities out there, there is Narcolepsy Network, and on facebook that are many groups where people have reached out to connect with one another. We're all family there. We even have support for family members- if they are willing to get involved in trying to understand their loved ones. Please come join us.

I remember when I was first diagnosed and trying to continue working. I would sneak to the bathroom all the time to nap without anyone seeing. I walked through life in a dream. Literally. Who would ever choose such a thing? It amazes me that people, like your husband for instance, would choose to believe that anyone would rather sleep their life away than live it! But maybe we can reach him, together. Something has to change and it can't be you. You've done nothing wrong. You have an illness, and no one should ask you to do what you can't, the same as no one would ask someone to grow a missing arm.

I understand the frustration your family has as they are sort of suffering Ambiguous Loss. But this is where communication is so important. Everyone has to work together to understand what is happening and why and what it means for the future. It doesn't have to be the worst thing ever, it's just going to be different than what is ideal. We can all still find enjoyment in life, even when we have this stupid illness. Family is very important in all of that. <3 Again, please reach out to us. I have a throwaway email address that you can contact me at if you want. dublintoastfree@gmail.com. I'll check in periodically to see if you've contacted me.

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