Well - I see some of you have been around the narcolepsy block a while, while others like me are new to this game. Not that any of us are new to coping with the symptoms it seems.
Honestly, the last time I "remember" sleeping like a "normal" person was when I was eight years old...and I'm less than a month away from the big - Four-Oh....so ya, it's been a LOT of tests including a LOT of sleep studies...living on stimulants for years and only progressively worsening fatigue and illness....remember one stage where I was contracting and making very little. Without insurance I went every week to the cheapest pharmacy I could find to buy my week's worth of Provigil - for $250 at the time, i.e. $1,000 a month. I'd get my grubby little hands on those few pills like a junkie with his dealer...and then I just had enough left for bologna and bread. How I used to feel such jealousy for those folks pushing their carts full of a variety of food ... me and my barren little my basket and my crackly pharmacy bag. That year I cleared $20,000 in income and had $11,000 in deductions.
I remember saying at one point, How many thousands of dollars do I have to spend to learn how healthy I am? I honestly could not tell you how many sleep studies I've had. I lost count some time ago. Don't even ask about other bizarre tests - like getting shocked 250 times or having needles with electrical currents running through them...oh joy.
Let's stop here and insert - Me: Happy, cheerful, encouraging by day, lately - whiny and feeling sorry for myself. I actually thought when I told some folks about my diagnosis I was going to get some validation. How many of you have heard the ol' "You just need to..." <insert lifestyle change/mental adjustment> i.e. <go to bed earlier> <push harder> <stop being weak> <when you sleep too much it just makes you more tired>....and how about when I was at my parents and my father would break down my door (I did have six alarm clocks blasting, roommates used to say my room sounded like a bomb going off) and YELL in his deep, thundering voice "Get your A** UP! You're gonna lose your job." And all I wanted was for him to leave so I could go back to sleep.
Last summer the onsite nurse for my company called the paramedics because she was convinced I was having a stroke. I kept begging her to just let me sleep. I actually napped in the ambulance, sirens blaring and some four hours later awoke, asking why the doctor hadn't arrived. He's tried to wake you multiple times and we couldn't. I have been seeing a sleep "specialist" (somewhat renown!) for FIVE years!!
Am I allowed to be upset about this? To be told I'm weak or lazy - some deficiency that i could/should be able to just "will" myself up out of...and then when I try to tell people now...it's not even better. Oh, yes, I'm tired too!! Really? You are? Do you take the modern day equivalent of speed four times a day plus a little to just drag your sorry butt home to sleep some more? And just this weekend my father had the gall to tell me the real issue is all my medicine...in other words, it's just in your head. If you would just stop those dr's and pills and exercise you would be okay. There's nothing "really wrong with you!"
How many people got the, "Are you taking another nap?" talk? I really am not wimpy, whiny, full of self-pity typically....but I'm really tired of being tired. I know everyone on this forum is and forgive me, I really just want someone to know how much strength it takes to live WITH this crud! I know it can't happen, but I wish my naysayers, really could just slip into my mind for five minutes to try to live through it all.
The constant battle to know when I actually DO need ANOTHER dang pill....versus putting my foot down and saying NO MORE! And all the people who love to tell me how FEW pills they take. Oh, why thank you very much. Wasn't that helpful to my life? I guess we're all selfish by nature and in my selfishness I will say here and here only - for just a couple of minutes, could we let it be about me? Without judgement? Or condemnation? Could somebody acknowledge this condition isn't a result of bad decisions on my part? Could somebody say, Wow. That sounds really harsh. Way to go for fighting through thirty-one years of increasing fatigue and illness, through angry bosses and lost jobs and having people tell you to give up on a normal life and just take disability and fighting for the closest thing to a normal life as you can get.
Sometimes I feel like if it weren't for medical advances natural selection woulda taken me out...some days I kinda wish it did, but mainly I keep on fighting, holding out for (ya it's cliched) a "better tomorrow."
Soooo, I was up to six stimulants with a mixture of amphetamines and Provigil and a C-Pap machine to haul with me, gawd forbid I should ever want to spontaneously crash at a friend's house after an evening out. Also have a lovely little cocktail of other symptoms - type II diabetes with worsening neuropathy, hypothyroidism, blah, blah, blah. Yes, it seems my body has all but broken down.
I'm trying to not want Xyrem to be my salvation, but look to it as an aid for assistance. The worst of the side effects are past, but I wonder if I'm not trading in one set of issues for a new set of issues. To cloud the matter further, I started a new diabetic med and of course like every pill it has its own lovely little symptoms list ... and I would hit that jackpot of course! (i.e. got the side affect now treating THAT!)
And I could hardly eat before .... now... oh my gosh. And since I'm severely overweight despite eating about 1/2 what most healthy people I know eat, I really don't think people believe me when I tell them I can't eat. I mean it's an issue. I feel sick from hunger and I don't want to eat. I force down a few saltines or applesauce and have solace for a few minutes....it is about 10:00 p.m. before I want to eat anything. Just as it's time to take my medicine.....
I love not feeling exhausted. Is there anyone here who has seen a betterment to their life through a Xyrem regimen? Or just anyone to say - hey, it won't always be this rough? I'm really struggling right now - enough to pour out my sob story to strangers cuz I refuse to be THAT person on FaceBook and no one i know wants to know how hard it really is...I can see them start to sorta freak out after only a couple details, so I really limit what I tell people.
I think about life as a football game sometimes....How the players bound onto the field in overflowing energy and enthusiasm....fast-forward and it's the end of the third quarter and the first string is still in...and they pause for a second before arising from the ground after a tackle...their movements slowed...slurred by the wear of the exertion....My fight feels all gone. I just don't want to fight just to feel normal. Worn and tired....I really hope someone can tell me a story of hope to help reignite my flame to keep on....keep on....keep on....