It actually was self explanatory.....

I had such a wish the floor would open up and swallow me Narco moment today. We’re having our annual Halloween luncheon and several people decided to dress up for the costume contest. I was standing at the fax machine sending some authorization requests when a lady who works in another part of my office came walking by. She had a stuffed dog on her shoulder, a bag of dog treats on her hip along with a pooper scooper type thing. I couldn’t get my brain to connect the dots of what she was-even after she pointed out that her t-shirt said, “I am my dog’s trainer”. I saw it and read it and STILL couldn’t break through the fog. As she was walking away she said, “I thought it was pretty much self explanatory” which made me feel like an idiot. Adding to my feeling like an idiot was the fact that since I was still in a fog I couldn’t even think up a good cover for why it wasn’t so self explanatory to me. I tried to mutter something that ultimately didn’t make sense and heaped on some more idiot juice. This is why I just keep my mouth shut most of the time. Would it have been easier for me to just say, “sorry, I’m having a Narco moment”. Perhaps, but I’m not sure if she would have recognized that fogginess as part of Narcolepsy and honestly I was in no shape to explain it. Has anyone else had a moment like that when you just wish you could rewind the last conversation or the situation like a game tape and correct it? Ugh, swallow me up floor, seriously.

Hindsight.

Hindsight is 20/20 they say. I’ve been thinking back on all the signs that I should have maybe seen indicating that something was seriously wrong and how I explained them away. The earliest thing I remember was when I was a little kid. I was waking up one morning and there was a huge man looking at me from my bedroom door-looked like an old west miner-cowboy kind of dude and I was terrified. I just laid in bed frozen. Looking back I wonder if that was maybe a hypnogognic hallucination. That’s the only one of those I remember having so I’m not sure. I remember many many times through the years I’d be cleaning my room and just suddenly needing to sleep (don’t know why it always seemed to be while I was cleaning my room..ha!). I’ve always always been able to sleep 12 or more hours at a time and still be sleepy. I was diagnosed with Antiphospholipid Antibody Syndrome when I was 17 and Lupus shortly after that. For a long time I just attributed any and all fatigue to that. When I was single, it wasn’t as bad because I could nap whenever I needed to if I wasn’t working or going to school, and when I was doing both I just figured I was supposed to be exhausted because I was burning the candle on both ends. I remember many a weekend alternating homework and sleep and nothing else. Once I got married and had twins I of course contributed the disabling fatigue almost solely to being a new mom to twins. Then something else happened. I was seeing my doctor who was trying to help me lose some weight and he gave me phentermine. While it did help me lose some weight, it also woke me up. The difference was so dramatic I couldn’t believe it. I was actually awake. I knew eventually I would need to come off it but was terrified to. Eventually came when we moved and I had to find a new doctor. I ended up losing all the weight I needed to lose and phentermine was no longer an option. This brings us up to the last few years. I went from being a stay at home mom to working a full time job and I no longer had the luxury of being able to nap when my kids did. This is when my symptoms really started to get out of hand. I started falling asleep on the phone while on hold and nodding off at red lights on the way to work. I would routinely have episodes of automatic behaviour especially while driving- there were so many time I’d drive somewhere with no recollection of doing it once I got there. I told my doctor how bad things were getting and he ordered a sleep study which I did not schedule. I had absolutely no knowledge of narcolepsy or how it really worked, and I really didn’t think I had sleep apnea so I scrapped the recommendation. The turning point came when I had an absolute emotional breakdown while talking to a friend at work because I was so tired and was fighting so hard to stay awake. She convinced me to schedule a sleep study right then. Ironically, I work for a company specializing in sleep disorders and sleep studies and still had really no knowledge of Narcolepsy. It sure was a shock to me when I was diagnosed. The more I started learning and reading about it, the more signs and symptoms I began to recognize, including some mild cataplexy I’d been having that I didn’t understand. Do I have a point to writing all this? I’m sure I do…I guess I just really wish there was a good way to make people more aware of what Narcolepsy REALLY is and how it REALLY manifests itself. I mean Narcolepsy is grossly undiagnosed. How many people are out there suffering because the only idea they have about Narcolepsy is what they’ve seen on Deuce Bigalow? I work for a company specializing in sleep disorders and I didn’t know! Sadly I don’t think you’re going to see any PSA’s on the matter any time soon. Maybe Dr. Phil or Oprah should do a show on it (though I don’t care for Oprah and personally wouldn’t watch her show…well, maybe if it was on Narcolepsy I would). At any rate, I know a lot of you reading this are Narcoleptic and this long entry is no doubt taxing your focus so I’ll end it here. Hindsight really is 20/20.

Has it really been a year?

One year. Next week it will be one year since I was diagnosed with Narcolepsy. Honestly, it should have been months sooner. I was referred for a sleep study last June but decided I didn’t really need it…even though I work for a company that does sleep studies. Long story short, after a few more months or things going downhill fast and a few more naps at the red lights on my way to work, I was talked into having the sleep study done. The only picture I had of Narcolepsy was what I’d seen on Deuce Bigalow. I in no way even considered that maybe I was Narcoleptic as I’d never once fallen asleep in my soup. What an education I got. My doctor suggested that I check out the Narcolepsy Network website and that was a tremendous help. I really felt alone at first-I still don’t know even one other person in my area who is Narcoleptic. I know they exist but I don’t actually “know” any of them. Any PWN (person with Narcolepsy) I’m sure would agree that unless you live it, you really can’t appreciate how frustrating and debilitating it is. People don’t think it’s a “real” disease. Or they think you’re just lazy, or crazy or both. I’m more than happy to explain it to anyone who asks me about it, but it can be kind of involved and I have a tendency to lose people somewhere in the process. After awhile you just stop trying to explain. I’ve been extremely blessed that I have insurance and that my meds are covered…including my obscenely expensive Xyrem prescription. So many PWN have to struggle with it without insurance or medication because they just can’t afford it. I seem to have found the right treatment for me over the last year-the Xyrem has made such a huge difference that I’m pretty much off the amphetemines save for maybe a half of a pill in the mornings. This next year hopefully will be much better than this last year. My next project is to try to lose some of this weight I’ve put on since I started working full time about 2 years ago. I’ve read a lot of information that says that the hypocretins that are destroyed in the brains of PWN are also connected with metabolism and weight, making it more difficult for PWN to lose weight. I suppose it also doesn’t help that PWN are maybe just too dang tired sometimes to do more than concentrate on staying awake. I know I’ve been there. I tend to seek out sugar when I’m the most tired just for the pick me up-that definitely does not help I’m sure. I can’t help but wonder how much more energy I could gain if I lost some weight. I have about 50lbs that need to come off-surely that would have to make a difference.

House of Cards

So it’s been a little bit since I last posted. Things have been busier than usual-all last week my husband’s truck was giving him problems which meant a couple evening trips to the shop. I’ve also had bronchitis for two weeks now which meant a few down nights on the codeine cough syrup. Oh, and a night spent in urgent care with my son who also has bronchitis. All these things threw my whole weekly schedule off, and my day isn’t very forgiving. Weekends are worse because we try to take care of all the overflow from the week, which can be substantial. Throw in a day or more of not feeling well and down comes the house of cards. I really wish I was in a position to bring someone in once or twice a month to at least scrub my bathrooms or help with yard work. Man that would take a lot off. Wolfie had made a comment on my last post about society’s way of looking down on people who slow down to take a break. Sad but true. I’m always afraid of dropping one of the balls I have in the air at any given time but really it’s inevitable. Even with the knowledge I have about Narcolepsy I feel guilty about taking any weekend time to nap unless everyone else in my house is napping too. That somehow makes it acceptable. I think it would be easier if I did have some help with getting some things done that have been needing to get done-like raking leaves for one. Sometimes just the thought of it all is overwhelming. I’ve got family coming to visit the first weekend in December and already I’m thinking of the oodles of things that need to be done. I really need to find the off switch for my brain-and not the narcolepsy off switch either. On a good note, I’m trying to cut down to half an Adderall in the mornings and it seems to be going well. I feel awake without being wound so tight and nervous. Its hard to find the right balance sometimes…..

Worth the crash?

Okay, here’s the question of the day-kind of a rock and a hard place question. I realize that if I have a great day and end up overdoing it, I’ll more than likely hit a wall the next day and get absolutely nothing accomplished. That being said, that day that I’ve gotten so much done fills me with such a feeling of, well, accomplishment that its almost worth it to feel like crap the next day. Anyone else know what I’m talking about? The days that I take it easy, sure I feel okay but there’s that voice in the back of my head that won’t stop reminding me of everything that has to be done and how far behind I’m getting by just sitting around. I’ve been thinking about whether the wonderful feeling of normalcy is worth the crash day afterward. I’m starting to think that maybe it is. I’d rather have great days of feeling like I can do it all like I used to then everyday of feeling worthless. The downside of that is when people see me have a great day they don’t get why all my days aren’t that way. That can’t be helping my case. I don’t know if my hubby ever sees it that way. I often wonder what the people closest to me REALLY think. Of course that voice pops up saying “Who cares what other people think?”. Sadly enough I do care. I don’t want to be viewed as that hypochondriac who had the plague last week and was surely dying of some flesh eating virus the week before that nobody takes seriously. I often times feel like people think I’m making this stuff up. I keep the bulk of how I feel about this confined to this blog which is why anyone reading this seems to get the real nitty gritty of what bubbles up once I get on a roll. Sorry about that-my efforts to not be whiney about it in my day to day life leave me no other place to spit this all out. Today I was composing an email and used the word “write” when it should have been “right” and in this post I used the word “role” then edited it to say “roll”. I used to NEVER make these mistakes so it really makes me sad when I struggle now to find and use the correct words. I’ve also got wind that our company’s insurance is looking to contain costs somehow as they are spending such a huge amount of money on healthcare-I guess my $1500 a month Xyrem doesn’t really help that. I’m a bit anxious to see what changes are made to the health plans come the first of the year. I hate writing about only gloom and doom so I’ll share a funny story with you. My hubby has introduced our 4 year old twins to the original He-man cartoons (thanks Netflix!). Jim has been trying to get them to say “By the power of Grayskull, I have the power!”. So the other day I hear one of my boys running through the house yelling, “By the power of God, I have the power!”. It was hilarious.
Thanks for all the comments also-its great to hear from you guys. Its nice to be able to share the ups and downs of this crazy condition and hear about other peoples’ experiences too. Makes me feel so much more normal having people to compare notes with.

The Silent Scream

Disenfranchised. I think about being Narcoleptic every single day. Its hard not to-its constantly in your face. Some symptoms obviously are worse than others but for me the hardest symptom is my Swiss cheese brain. I was reading the news today and came across the word “disenfranchised”. I know this word. But as I sat there staring at it blankly I couldn’t recall the meaning. It was right there at the tip of my brain but I just couldn’t grab it. All my life (until recently anyway) I’ve been an over achiever and honor student. I shouldn’t have had to stop in the middle of an article to Google words I already know! The frustration of it almost brought me to tears right in the middle of my office cube. Also, having a conversation shouldn’t have to be a major expenditure of energy. Having a conversation for me is agonizing sometimes because of the energy I need to now spend on not blanking out or trying to organize a rational sentence in my head and hope to God it comes out of my mouth the way I want it to. I don’t really talk to people anymore as a result. At a recent office get together I was labeled as “quiet”. If anyone from my school days would have heard that one they would surely have dropped over in a fit of laughter. I’m so frustrated. I would love to go back to school at some point, but how in the world can that work when I can’t recall things I ALREADY KNOW!! I’m sure my test scores would be wonderful after a bout of catch that thought. I don’t mean to rant, but I’m having a hard time with the fact that I don’t recognize myself anymore. I liked who I was-I want that person back. Now I’m stuck here with this sand sifter brain and unpredictable body. I’m really angry and there’s just no one and nothing to really direct my anger toward. I really don’t think any of my non-Narco friends or relatives really understand (how could they). Worse though, I don’t know that the people closest to me really care to understand. No one ever asks me questions about it or seems to really be listening if I try to explain it. It makes me feel stupid when I mention I’m having a sleep attack and I’m either completely ignored or looked at like I’m a nut case. Its funny-I see a big difference in the way my Lupus is talked about and treated and how the Narcolepsy is talked about and treated. Its very obvious to me that the general consensus is that Lupus is a “real” condition and Narcolepsy is not. I’m screaming inside my head right now.

Not feeling much better is great news!!

I got my last “official” call from the Xyrem nurse asking how things were going. I knew this call was coming so I really tried to think about how things really are going instead of tossing out the cursory fine or good. The truth is I don’t think I’m seeing as much of a difference with the Xyrem these days-which may be a good thing. In the beginning, I noticed a big change-I started getting up in the mornings without being completely bleary-eyed. Now taking my Adderall doesn’t have to be the very first thing I do, I can wait until I go downstairs after getting ready for work. I’ve been able to cut back from 3 doses to 2 doses of Adderall daily. In the beginning this was all a pretty big change and very noticeable. Now I think I’m just used to feeling better and its harder to remember just how bad things were. The way I feel today is worlds better than I did pre-diagnosis, but I’m so used to feeling better that what would have once been a great day for me is now not quite so wonderful when I do have sleep attacks. I know this is not coming out the way I want it to (thanks Narcolepsy!), so I’m hoping you all get what I’m trying to say. Its like my threshold for symptoms has decreased since I don’t deal with the really really bad symptoms on a day to day basis. I don’t fall asleep at red lights anymore. Its not all I can do to stay upright during the work day anymore and my cataplexy is pretty much gone. I still have sleep attacks during the day and they are still really a struggle, but its not all day long usually. There are actually times I forget to take my Adderall in the afternoons if I’m having a really good day. That is so much of an improvement-before the Xyrem I would watch the clock just hoping to get through until I could take my next dose. And even then most of the time I would feel the effects of the drug-the increased heartbeat, the sort of all over body “buzz”, but still be tired through it. What a horrible way to feel (as most of you already know). A couple weekends ago my boys spent the night at their grandparents house-which meant a Saturday morning of sleeping in for me. Usually the way this would play out is that I would sleep until close to noon, about 14 or so hours, and then get up out of guilt for being in bed that long. That was pre-Xyrem. This last time though, I woke up at about 8:30 am and was not able to go back to sleep! My husband laughed when I woke up so early-I had made no secret of the fact that I intended to sleep in…way in.