When life gets tough…

This is the first thing I’m doing this morning. If I don’t write now, I won’t. Life is indeed tough right now. It’s funny.

I said, way back when, that I didn’t know what this little project would turn into. Now my name’s on it, so I can run but I can’t hide.

I started this fancy new medication back at the beginning of June for my dear narcolepsy, and it’s taken the majority of the past 6 months for me to start feeling a difference. June, July, August, most of September, less of October, and parts of November (when I was sick, ugh) I hovered a few ticks above and below where I’ve been for approximately the last three/four years. I knew I had to be patient; while I didn’t physically feel all that different for a long time, I was much more aware of it. Prior, my focus was always school, family, volunteering, clubs, sorority, group projects, friends, jobs, preparing for grad school. This time, there were barely any other distractions (besides the ones in my head), so when I started to feel a difference, I knew it wasn’t just me rushing to make a burst of energy that I’d regret later.

I’d wake up and feel like I’d actually had a night of sleep and could take on the day – I started planning and prepping for the future.

I’m learning that the future isn’t ready for me yet though, because if I’m not taking care of the present, the past will just keep repeating itself.

Case in point: that fancy medication I mentioned? I haven’t had it for a week now, due to silly regulations, fine-print and general lack of urgency in our healthcare system. And when I say fancy, I mean extremely expensive and difficult to obtain. Sadly, no doctor is going to have any samples of this chilling in their office, and neither will any U.S. pharmacy, save for the one holding my prescription hostage (kidding… kind of). Considering I’ve spent about an hour on the phone every (business) day for the past week pestering various entities, I don’t think I’m the only one ready to have my medication again.

When you have narcolepsy, you brain has essentially forgotten how to “deep-sleep.” This is not exactly the same as REM sleep – which seems to be the coveted stage among the public. If you aren’t dreaming, you aren’t getting good sleep, right?

False, for the most part. Yes, you need REM for processing information from the day, but if your body isn’t restoring itself with some dead-to-the-world sleep, it doesn’t matter how much information you’ve got in your head – you won’t be able to use it (alternatively, if you are getting the best sleep on the earth but have no processing of information, you aren’t going to be all that useful). I have no trouble dreaming. In fact, that’s what a majority of my time spent sleeping is. I also have the oh so awesome ability to dream while awake, which sounds cool when you say it like that, but it could actually be that I’m hallucinating. Ya know, the same thing we judge people with schizophrenia for?

In fact, I dream so much, I have memories of my dreams. I usually remember anywhere from 2 – 4 dreams each night, in explicit detail. And not just for a few minutes after I wake up; bits of my dreams will pop into my head throughout the day, not just from the previous night, but from several nights ago, or several weeks ago. Or longer. Since starting this paragraph, bits of five different dreams have popped into my head, that I had from between 1 and 10ish years ago. I can’t recall them on the spot, and have since learned to not try.  Sometimes my dreams mesh with each other, or when I’m in one dream I’ll be reminded of an event in another dream and they start running together.Then those start running into reality… Coupled with the fact that language becomes harder. I mean, it’s taken me three days to finally get this coherent. It’s not that I can’t speak or anything, but I have to put a conscious effort into responding to people – think about what they’ve said and then what I’m saying. Usually it just means my sentences are slow with a bunch of pauses; sometimes I have the thought and after a few words the other end of the sentence flies out of my head.

If you had seen me, for instance, 10 days ago when I took my sister back to college after Thanksgiving break, and compared it to now, I’m like two different people. That’s how quickly I’ve been slipping back to where I was before starting that medication. The medication that’s taken 6 months of discipline and lifestyle changes to get me to where I’ve been, suddenly isn’t available. I could make a 4-hour-round-trip driving, run a few times a week, interview for a job, see my friends or even leave the house more than once a week. Sure, this came with sacrifices, including:

  • pretty much can’t drink anymore
  • have to be aware of when I eat
  • have lost a significant amount of weight
  • still need a nap almost every day
  • obsessively organize exact time-tables if I’m staying anywhere overnight or have commitments before noon

But I couldn’t care less. I have energy! I’m AWAKE! I can DO THINGS! It’s been amazing!

key_drawing drawing by yours truly to break up the wall of text

I wish it were as simple as finding a key in front of me to unlock this mess, but it is not. It never is. I don’t want anyone to pity me with writing this – it sucks. I’m frustrated, angry and would love nothing more than to figure out how to prevent lapses of very necessary medications, or how to make coping with situations like this more accessible. And to also get my meds.

I’ve already outlined the situation to a research survey I’m participating in (which conveniently contacted me this week for an update) – I know I’m not the only one who has dealt with this. But I’m going to try and find more platforms to bring attention to this problem, because I (as far as I am aware) completed all steps on my end of this ordeal in a timely manner, beginning in October. I prepared ahead, then promptly completed other paperwork, and still I am told that I need to do x, y, and z to fix a systemic issue. Ping-ponged back and forth between pharmacies, insurance agencies, doctors offices,  and call centers as both the middle man and the customer/receiver of care.

This is tough, yes, but I can handle it. I survived 8 years of high school and college like this. Writing about it gives me a voice and strength – I’d suggest it to anyone in their own tough spot. If I can write 1,100 words running on the equivalent of 2 hours of sleep for many other people, you can objectively complain as well (please know what you’re talking about though, or else research it). Along with that, writing gives me confidence, which besides energy, is something I will always be happy to have more of.

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