Straight-Up Good

Reason #1383509 why Xyrem is worth all the hassle: 

Pre-Xyrem, I was taking 150mg of Nuvigil (armodofinil) and 40-60mg of Adderall a day, plus coffee, and I was still a zombie, sleeping all the time and low, low functioning. I might as well have been taking sugar pills for all the good those stimulants did — they certainly didn’t keep me awake!

I have been on Xyrem for a total of four months now, titrating up slooowly. About a month ago I got up to 3.5g twice a night, which is the lowest dose that works for me (I start feeling better during the day on this dose). I’ve stayed at 3.5g since then.

I now take 10mg of Adderall to wake up in the morning and that’s it. That’s it! I sleep for about 8 hours a night and take one 20-minute nap in the afternoon, if at all. I don’t even drink coffee anymore!

And here’s the kicker: I feel pretty decent throughout the day, and it’s my own energy, not fake-feeling stimulant energy. It feels so natural, it’s amazing. Soon I hope to go from “pretty decent” to straight-up “good”. 🙂

Sorry!!!

Wow, I’m the worst. I haven’t written at all since I came home from Spain three months ago. I’m sorry!

In my defense, it’s been a weird three months. To summarize, I came home, was a pathetic slug on the couch for quite a while, started a free trial of Xyrem, loved it, everything was awesome, had to stop my trial of Xyrem to do a sleep study for insurance, went back to being a couch slug for weeks, did the sleep study (spoiler alert: I have narcolepsy), went back on the trial of Xyrem, had a SUPER RARE AND WEIRD reaction to Xyrem because I didn’t titrate back up, spent a week in the hospital, left the hospital and am now taking a little bit of time off from all meds to reset my body while I wait for my insurance to pay for my first real, non-trial shipment of Xyrem. Once they pay up (which will happen very soon, I hope!), I’ll get my first month of my very own Xyrem and will be good to go.

Even being hospitalized is not going to scare me away from Xyrem. It’s amazing. It’s a miracle drug, I’m telling you. It might be an actual miracle. I’m going to write a lot more about it because I think every narcoleptic should be on Xyrem, it’s THAT GOOD.

Case in point: when I was on Xyrem, there were days when I had to seriously ask myself whether I felt normal or not.  It was like,”What is this weird feeling of nothing being wrong with me? Is this how everybody feels all the time?” That’s how close to ‘normal’ I was!

It was like having a second chance at life, I felt better than I have in years and it was like my future was unlimited. The huge divide that I felt between myself and everybody else vanished because, for the first time, I had one foot in the land of the awake. My other foot will probably always be in Dreamland, but at least with Xyrem I can exist in both worlds.

I’ll write at length about Xyrem soon because if there’s one thing I’m good at, it’s talking a lot about the things that interest me. And when I feel good, it’s FUN to write and I WANT to write, which is amazing too. Everything comes so easily when you’re not exhausted.

Thanks for sticking with me. I am seeing the light at the end of the tunnel and I can’t wait to tell you about how great life is right now.

Perspective.

It’s strange — what’s the right way to look at things?

I’m moving to Spain. I went to college, my parents are still together, I have a home and I have enough food to eat and I have a phone and a computer. I have people that love me. I am living better than 99% of the world’s population.

The only thing I’m missing is a few neurons in a small part of my brain. Why does it matter so much?

I’m trying to cultivate a genuinely positive attitude, and to appreciate what I do have without guilting myself into gratitude. It’s difficult, though, because it’s so easy to feel guilty about everything. About being too sick. About not being sick enough. About having the nerve to feel pain when there are people on our planet who are refugees, as if there’s not more than enough suffering to go around.

Sometimes I try to will myself into a more functional body, as if there’s a relationship between health and attitude. Don’t you have enough? Then why do you still feel sick? Why can’t you just be happy and make it go away? If you were less spoiled and more appreciative of the good things, you wouldn’t feel so bad.

I’m not sure where the balance lies. Is there a way to acknowledge my own suffering without downplaying all the blessings in my life? Is it alright to feel bad and be thankful all at once? 

I don’t mean to be overly negative — just to be clear, I don’t wallow in misery. I know that our world is beautiful; I can see it, and I want to appreciate that beauty as much as I possibly can. I want to have the right attitude, and I want to rise to the challenge that life is asking of me. I think I can do it — I’m just trying to figure out how.

Gratitude —

I think the secret to being happy is being grateful.

I’ve never felt that having narcolepsy was unfair — difficult, frustrating, upsetting, yeah of course, but not unfair. Life owes me nothing; I have no claim to being healthy. I don’t deserve to even be breathing, and I have so much more than just breath — I graduated from college, I have a family that loves me and running water and a house and talents and when I want to buy a stupid Covergirl eyeshadow at Wal-mart, I can, because I have disposable income.

Every heartbeat is extravagant, and we can do nothing but receive, and I don’t want to receive passively. It is a gift just to exist in a world that spins around the sun in living color.

That is the one of the blessings of having narcolepsy — I can’t live as if I have all the time in the world to live and accomplish my goals and pursue what matters to me. I don’t have time. I don’t know what I’ll feel like tomorrow, or even an hour from now, if my meds will help or if I’ll be smothered under the weight of sleep.

Every minute that I feel good is a blessing, every morning that I can wake up early enough to take a shower, every time I get to do something that is more than just surviving. Even things that are objectively boring, like unpacking my belongings, a week late — I did it, I had the energy to do it and I did it, and I’m grateful.