9 replies to this topic

[Katty0]

I was diagnosed with narcolepsy in early April this year. At first the medicine really helped (Adderall XR) but now I am back to wanting to sleep all the time. My Dr. upped the dose to 25mg in the morning and and extra 5mg when I get off of work, that helped for about a week... Now I sleep til the last minute in the morning (sometimes after, making me late), nap for lunch, I take another nap when I get home from work at 5pm... Sometimes I wake up for a hour or two... sometimes I dont.

I am so tired of being sleepy. I lost my boyfriend of 3 years in early March because of a lack of motivation. I don't lack it... I am just too tired to try. I am so tired it hurts.

I know it is really cheesy, but I have no one to talk to that understands so I wrote what is below. I am not a writer at all, but I had to get it out. Can anyone out there relate to this? I don't want to sleep the rest of my life away... I slept through my late teens and early twenties. I turn 26 in less than a month and I just want to be awake, not walking around in this fog anymore.
Before I was diagnosed with narcolepsy I alway thought I would have time... I would get better soon and have the energy to really LIVE. This is something I wrote knowing I'm never going to be normal, or have the energy to move forward in my life.

I Dream.

Waste of time, waste of space, waste of breath
Time is flying, I am crawling;
Need to stop, need to catch up, need to breathe,
Pieces of my soul torn away by the moments flying by,
No time to think it through, grab what I can, ignore what I can’t.
Don’t stop, I can’t catch up, is there any need to breathe?
Life is slipping through my hands; just go to sleep…
Just let it go, just dream of the life I will never have.
Dream of the friends, the man, the children that pass me by,
Dream of the plans I’ll never plan.
It’s all just a dream, a pale resemblance of reality.
Watch the world move on, and dream of a place for me.
I dream of a world I am a part of, a world that waits for me,
I can dream, forced to sleep, too tired to try, I dream…
Moments, minutes, miles I will never get to experience;
How much do they matter when I dream?
So jealous, so tired, so defeated.
Why me? Who decided I don't get to live?
Why can't I wake up from this unending nightmare?
I stand on the outside, to tired to run the race.
Just too tired, I drag my feet and keep moving...
And I dream.

[Megssosleepy]

I think every member on this site can relate and understand. It really isnt fair the cards we have be dealt. But knowing is power... I am still trying to come to grips that I have been sleeping my life away. I also lost 2 relationships because of the need to sleep, and sleep, and sleeeeep... Doesnt make me to much fun I guess.

Have you tried Xyrem yet? If not I have to say its worth the crazy side effects, and from what I have read they don't last forever!

I liked your writing by the way, but it made me sad because I feel the same way. I look forward to my dreams more then I do the day infront of me. All day long all I think about is my bed

We should just keep our fingers crossed that more advances in Western Medicine will happen for us! That don't cost a fortune!! Id have major surgery to fix this BS!!

Anyways... Hang in there, thats really all we can do!

[Contemplative]

Dear Katty0 and Megsosleepy,


Thank you for baring your soul and sharing the immense pain and struggle (and hope - Meg). And Katty0, your poem so touched my heart. I remember, clearly, being in such dire straights for relief, that I considered not continuing to live like this anymore. Many years later, I hate to say, I am SO glad, that I did not act on those urges and instead stayed the course, difficult as it has been. Both modern medicine, behavioral modifications, and support from others like yourselves, has pulled me through. I wrote the below as my response. Thank yous for the opportunity, truly, to share this with you.


The tiredness and overwhelming sleep attacks, the unending race
The hypnagogic hallucinations mix reality with dream world; take up space

Thought I was crazy and alone
Come to find out it's a disease; no longer the unknown

Knowledge is power as many say
Can't keep my eyes open, the sandman at bay

On this board there are many whom can relate
Glad I didn't quit, pursued help; followed fate

Bared my soul for others to see
Now I know, it's not me, it's narcolepsy

Scheduled naps and set times to sleep and wake
Medications I somewhat relunctantly take

Do what I can to share my story and spread the word
It does get better, gray skies turn bright, prayers heard

The best source of strength is having someone whom can understand
My feet, finally back on dry land.


All the best,
Contemplative

[Megssosleepy]

Dear Katty0 and Megsosleepy,

The tiredness and overwhelming sleep attacks, the unending race
The hypnagogic hallucinations mix reality with dream world; take up space

Thought I was crazy and alone
Come to find out it's a disease; no longer the unknown

Knowledge is power as many say
Can't keep my eyes open, the sandman at bay

On this board there are many whom can relate
Glad I didn't quit, pursued help; followed fate

Bared my soul for others to see
Now I know, it's not me, it's narcolepsy

Scheduled naps and set times to sleep and wake
Medications I somewhat relunctantly take

Do what I can to share my story and spread the word
It does get better, gray skies turn bright, prayers heard

The best source of strength is having someone whom can understand
My feet, finally back on dry land.


All the best,
Contemplative

Thank you for this, I am finally starting to see the light at the end of the tunnel and it is really wonderful to hear that some of us can get past the difficulties and see the "gray skies turn bright" This support group has become my life line to push myself forward and learn how to cope and except and forgive myself and others.

[Katty0]

Thank you for this, I am finally starting to see the light at the end of the tunnel and it is really wonderful to hear that some of us can get past the difficulties and see the "gray skies turn bright" This support group has become my life line to push myself forward and learn how to cope and except and forgive myself and others.

Sorry for such a delayed response! I was in a funk and just focused on work lately...

Thank you both for responding. I just needed some true empathy and you all have helped by just being there.

I am currently on 25 mg of adderall in the morning and 5mg in the afternoon... honestly it isnt working anymore and I am struggling badly to get up and be at work at 7:30am... Not sure what I am going to do to make that easier

[Megssosleepy]

Sorry for such a delayed response! I was in a funk and just focused on work lately...

Thank you both for responding. I just needed some true empathy and you all have helped by just being there.

I am currently on 25 mg of adderall in the morning and 5mg in the afternoon... honestly it isnt working anymore and I am struggling badly to get up and be at work at 7:30am... Not sure what I am going to do to make that easier

Have you tried any other meds? Maybe you can find one that will work better for you? Having been gone so long I am sure there is plenty of new stuff to read on the NN that may help as well

[Contemplative]

Sorry for such a delayed response! I was in a funk and just focused on work lately...

Thank you both for responding. I just needed some true empathy and you all have helped by just being there.

I am currently on 25 mg of adderall in the morning and 5mg in the afternoon... honestly it isnt working anymore and I am struggling badly to get up and be at work at 7:30am... Not sure what I am going to do to make that easier

I, personally, have been on adderall before early on in my treatment and it stopped working and I got so desperate for relief I entertained suidial ideation and ended up in the psychiatric ward more than once until now I feel much better than that and there is still plenty of room for improvement, and I have been on many other drugs including Focalin IR and XR versions at varying doses, timings, and combinations (this is an isomer of ritalin), Provigil, Nuvigil (adversely affected my mental status), dexedrine (caused double vision), and Xyrem several times. I'm missing some others, point being...

It is often a process of trial and error. Being aware and charting how I felt on each, the positives, the negatives, the side effects which I tried to tolerate for 2 weeks since they usually did go away, and the most important thing is to have open communication about how I am feeling and responding with EVERYONE on my treatment team. Have you approached your sleep specialist/neurologist, primary care physician, or nurse? I certainly don't want you to suffer needlessly. Please keep us posted and sending you hugs and a bit of spare energy.

C

[exanimo]

I can definitely relate. This diagnosis, this lifestyle, is not fair to anyone. Not us, nor our friends, families, or coworkers. But I like to tell myself this:
The world just wouldn't be able to handle me if I was normal and awake all of the time.

I tell myself this because regardless of my diagnosis, I am an amazing person. I am smart and I have so many goals. I am not going to *let* Narcolepsy get in the way of my life. I will accommodate it, and I will acknowledge the limitations it sets for me, but it will not determine my life.

This is a poem I wrote not very long after being diagnosed:

Even when I cannot bear the tears
The earth cries for me.
They pour down around me
cascading over me
An intimate portrayal
of my sorrow.

I wonder if I will ever
return from this eternal sleep.
I was not prepared
for the prognosis of
eternal sleep
nor the swelling of grief
I feel in my chest.

Burning to break free
from the blackness
never to reach the sun
for this night will forever
be prolonged.

But even when I cannot bear the tears
the earth cries for me
a downpour of the minutes
that will pass me by
as I sleep.

But these clouds of time
and sorrow
will pass.
I will live again
even if I wake only briefly,
I will feel again.
But for today
for now,
the sleep draws me in
under the hazy blanket of my unconscious.

And as I sleep, the earth
will mourn for me
spilling through in haste;
healing our afflictions.

[Hank]

That was beautiful- like Mozart's Requiem- one of my favorites. If it's going to be sad, make it beautiful. I hope the clouds part- One of my favorite cheezy 70's songs is Mr. Blue Sky by E.L.O. Please post more if you have written others- what a gift you have.

[DeathRabbit]

That was beautiful- like Mozart's Requiem- one of my favorites. If it's going to be sad, make it beautiful. I hope the clouds part- One of my favorite cheezy 70's songs is Mr. Blue Sky by E.L.O. Please post more if you have written others- what a gift you have.
http://www.youtube.c...h?v=WFtTTBDGlbk

http://www.youtube.c...D6&feature=plcp

I wrote a song too, not long ago inspired by Narcolepsy and personal relationships and depression and other emo stuff. It's a whole lot more plebian than ex's, but I'm too derpy to do better.

"Visual agnosia
an obscuring miasma
byproduct of the sullen swell

follow me closely
hold me tightly
we might just escape

the road to hell

ten fathoms deep
TEN FATHOMS!
wounds ever seep
TEN FATHOMS!
ten fathoms deep
TEN FATHOMS!

we must still escape

the road to hell"


It's also a take on a relatively unknown verse of 50 men on a dead man's chest. "A sudden plunge in the sullen swell, 10 fathoms deep on the road to hell. Yo ho ho and a bottle of rum"