A moment of thought

Such a strange month I’ve had.  It’s been a very interesting time inside my head – lol….nothing particularly bad going on in there, but lots happening at once.  Thought I’d try to unscramble a bit and rather than writing yet another draft that never gets posted, actually write something I want to share.

The first issue that’s changed things for me is the new diagnosis and medications I’m taking.  The narcolepsy meds are working very well and even though I do have to take twice the daily recommended max dose, it seems to be worth it so far.  Mind you, they have no idea how this drug works and, of course, don’t know what side effects it may have in the end but it’s always a risk/benefit deal when it comes to medicine.  Being awake makes my life much more full and makes it a hundred times easier to cope with the rest, I’m in.

When I first start a new medication I tend to resist it some;  I’ll not take a dose one day for no reason other than to sabotage the benefits it brings.  I work hard to get around this and I know it’s stupid…..you can either take a drug or not take it but wavering back and forth won’t do anyone any good; I know.  Still…..  I learned the hard way not to skip my antidepressant and, later in the game, not to mess with the dose of pain meds for the arthritis.  Now, after a good long time of consistent doses and use, they are delivering the fullest benefit they are able to and it helps.  A lot.  The new med is easy to remember to take because when I don’t take them I am hit but a wall of tired.  The feeling is nauseating and has a vertigo-effect on me now…..the feeling when the tired starts to creep up behind me.  If it happens I’ll instantly realize the cause and take my afternoon dose and within an hour I’m back to where I was; awake, alert, engaged and enjoying life again.

The only down side of this change for the overall better is that being awake for normal hours has set my dream issues into overdrive.  The specialist said this might happen – she says I have an REM disorder along with the narcolepsy, although they two are likely one and the same.  A rapid drop into REM sleep is part of narcolepsy; however, the inability to move into deeper sleep cycles and to stay ‘stuck’ in REM most of the time I’m asleep does not quite jive with the diagnosis.   No matter what it’s labeled, it’s a pain in the butt and the specialist wants to treat the symptom with more meds, which I expected.  Although I generally only sleep 6-8 hours a night now (yay!!) I think I dream as much as I did when I slept 16-18 hours, just all packed into the shorter time frame.  The dreams are vivid, constant, cyclic and repetitive in nature and theme.  I’ve been talking/yelling/laughing/crying and walking in my sleep every night and I do not stop for hours, Dayne tells me.  I’ve been having dreams of waking up to find myself in a strange environment I don’t recognize and although I now something is very wrong, I can’t figure out what.  I’ll start to adjust to my surroundings and something will shift and the scene will melt into something else and I’ll think I’ve woken up again…..it goes on and on until I either wake for real or Dayne wakes me.  It’s not frightening but it is very disconcerting and disorienting.  One very recurrent theme of late seems to centre on destruction and loss of control and safety.  I’ll keep this short…


On the weekend, I dreamed I was on a bus that was driving down an open highway somewhere in a desert.  There were two dozen of us, or so, and one driver.  The world outside the bus windows was all the same colour as the wind kicked dust into the air all around us.  There was absolutely nothing out there to break the wind as it roared on through.  We approached a small town but I could tell from a long way off that the place was abandoned and most of the buildings had crumbled to the ground.  It didn’t look like a disaster site; no bomb or man-made annihilation but it also didn’t seem to have been destroyed in a natural disaster like a storm or earthquake.  Everything simply seemed like time had passed without anyone tending to the small cluster of buildings and grounds and the place was crumbling away and joining the dust that swirled to the skies.

“Where is everyone?”  I asked, many times, but kept getting hushed by my fellow passengers.

There was someone or *something*  out there that had taken everything from us and we, as an entire species, were left cowering in corners of the world, trying not to be seen.  The bus was in constant motion which was the only way we seemed to be safe.  Somehow, whatever chased us could not see through the metal frame of the bus.  I suddenly understood why everyone was lying face down on the floor and joined them, quickly.

We moved about the bus on our bellies, slithering like snakes to avoid being seen and destroyed on sight.  I crawled using my fingers and toes all the way to the front and asked the driver where we were headed.  He said he didn’t know; all he knew was that he could not stop driving because anyone who had, was gone; vaporized into nothing by unseen enemies.

“Is there anyone left on other continents?” I asked, almost silently.  “There must be someone left somewhere…”

No one answered me but I was glad.  I didn’t want to hear the answer.  (end dream)

The dream started like that and a scenario would play out and I would die, or worse, cause the death of everyone else on the bus.  Every time I failed I would fall to the floor where I stood and feel the life draining from my body, no longer afraid but so very sad.  Then, a crack of light would appear before my closed eyelids and I’d open them to find myself alive and well, belly down on the floor of a bus, crammed in with strangers who were all waiting to die.  I can’t quite explain how emotionally taxing that can be after the 10th time through.  I’m usually kind of against taking anything that will make my dreams stop…..they are so much a part of my life and always have been so not dreaming feels like a sort of death to me.  Now, however, I would happily let these cyclical, exhausting dreams rest awhile and do nothing while I sleep other than rest my body and soul.  So, there’s that.  So far the doc has only tried me on Klonopin, which I’ve taken before many times and although it worked wonders for the anxiety that used to chase me around, it did nothing to improve my sleep.  (Not entirely true – they do make me drowsy but I’m plenty drowsy on my own without adding more.  Plus, they don’t even touch the dreams.  I’m at a much higher dose than I was for anxiety so I told her I’d give it a try.  Nothing so far….been taking them for 2-3 weeks each night).

There.  I’m going to stop there and post this before I get lost in something else.  I have more to write out and really need to get some stuff out of my head, but I’ll post now and add more later.  I have two weeks vacation coming up and I need to get myself in order at work so I’m only desperately behind and not crisis-level behind before I leave.

Hope everyone out there in blog-land is in a happy place today.  xx


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About Grainne

My name is Grainne. This blog has been with me for years now and has served as a journal, a confessional, an outlet and a place for me to create and express my love of life. Thank you for stopping by and for becoming a part of this life long journey of mine. I appreciate every single one of you who takes the time to do so. :)

5 responses to “A moment of thought”

  1. Birdie says :

    You waited way too long for a diagnosis and I am glad that you are finally having a life outside sleeping. The dreaming must be exhausting though. Those dreams that step their ugly foot into our awake lives don’t happen to me often and I can’t imagine having them every night.
    I guess Colt is out of school for the summer. Hope you are all having fun!

  2. KittyHere says :

    Glad to see your post and to hear that parts of your life are improving. Wish your dream-life would quiet down. If there is a pharmaceutical solution go for it. (Says she who can panic over med changes.)

  3. The Sound of Ed's Voice says :

    I am SOOOOO happy to hear you are getting to have your dream sleep and daytime cycle now!!!

  4. rootstoblossom says :

    Wow can’t believe it is narcolepsy, you struggled so long. Glad to hear something keeps you feeling more awake. One step at a time, we can do this!

    • Grainne says :

      So surprising isn’t it? Made me think of you and all the medical diagnoses, surgery and treatments you have had in the last few years. Still aligned with you, it seems. Xoxo

      I’ve known you here for so long. I’m thankful for it. (Hugs tight). Xox

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