Metamorphosis

Things are changing around here.
Everything from attitude to location.

A Flux

A Shift

A Tide

It’s all about letting go and acceptance.

Nothing stays the same forever…

I decided my blog, after so many years should reflect that.
After all its a narcolepsy blog right?
Maybe it should look a bit more… sleepy?
Just follow it like a river in the direction that its taken me?

Up To My Ears in… Poo.

Its 3 am. Or maybe 4. I have some pretty important stuff happening tomorrow and I can’t seem to get it out of my head. I have had such positive feedback about my current ideas and intentions, regarding my new project/or possible .org. So many people rooting for me and I am so wound up with excitement that I am up way past bedtime. I really needed to release this energy, so I hit the garden for a while.

There is something to be said for gardening at night. Especially here in southern Georgia. It is cooler, fewer distractions, no neighbors up making racket…traffic etc…(did I mention its cooler?)  it’s really a good time to be alone in your thoughts while being up to your ears in fertilizer and dirt. As I spent time re-potting basil and tomatoes, I thought about the seeds I will be sowing tomorrow, the Ideas I will plant in the minds of some of my peers. People who have graciously given up their time to listen me as I attempt to plan the next few chapters of my journey. I am forever grateful for this opportunity, and their generosity.

Just like all of the plants I have handled tonight, given enough water and sunlight this project should thrive. But should it remain in a dark corner any longer, it would  wither away and die.
Its time to bring Dormez-Vous Studios out of the dark and into the light.

But first, I need a shower.

Broken Dreamers

Broken Dreamers

I break things.

Pencils Break
Dishes Break
Glasses Break
And Body Parts
Especially Body Parts

Having Cataplexy means
Destruction is kind of what I am good at.

The list goes on and on….

Promises Break
Commitments Break
Dreams Break
And Hearts
Especially Hearts

Having Narcolepsy Means
Hearts will break when Dreams can’t act.

It doesn’t end here….
….What I mean is, It is not the end.

Fevers Break
Water Breaks
Dawn Breaks
Coffee Breaks
Especially Coffee Breaks

Having Hope means
Not forgetting all of that.

There is still hope for us.
We are more than Broken Dreamers.

 

NO means NO… (Probably Not. Maybe. Ok.) WAIT… NO.

I been able to do a lot of things I really like doing lately. I learned how to do wire work with my sister and helped her with her wedding, I spent time with my boyfriend just chilling out and vegging in front of the TV. (Seriously, not something I do… like ever.) even took a boat out to the channel entrance and sat under the stars one night and playing tag with a dolphin. I have been doing a lot of sewing and writing and went to see a play with some friends, and many other things, that I have put off for way to long.

I have just been so happy and having such a great time, that I had to wonder, why don’t I do these things anymore? Why am I always so tired and stressed out? Be cause I’m an idiot. That is why. I push my self way to hard, way to far and have so for way to long. It was easy at first. I was filling  void. Still am. Trying to prove myself to people who will never pay enough attention to anything I do to notice anyway. Trying to prove that even though I can’t work I’m not completely worthless. I realize this now. something I should bring up with my therapist I guess.

Being happy came as a complete surprise. I haven’t been in a long long time. I was content with that version of “normalcy” though so its never been an issue… till now. I am really lucky to have such great friends and wonderful people surrounding me at this point in my life. And I know like all things this moment cant last forever and I dont want to miss out on this place in time because I was to busy trying to save the world/myself, all the while waiting for the other shoe to drop… Because something bad always happens….

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I need to start learning the meaning of no, and really exercising that.

 

What No means to me:

“I have looked at my calender and decided I just cant do it right now.”
“If there is someone else that can do this, then that is a good idea. I dont have to do it all.”

What No doesn’t mean to me:
“I would do this, but I just dont care.”
” I would do this, If someone else asked, but I dont like or trust you so… NO.”

I really need to find my balance. I had it for a while, but the scales are tipping favorably in new directions for me and it is time to really decide what the next few years will mean for me. I am pretty excited about that. And I hope desperately to not screw it up with scheduling conflicts! I want to spend many more nights looking at the stars and just, “Be Happy.”

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Busy Busy Blogger Bee (Version 12.03.13)

This quarters Busy Bee has been myself! I have rarely had a chance to write, let along read much online here lately. With several events happening, National Sleep Awareness Week was last week,
and several projects in the works, I just have not had the time sadly. Something I hope to fix over the summer.

There have been a couple of blogs I really want to mention though, one of them I just discovered recently.( He managed to find me first, commenting on my last post: “OMG She’s Coding”) I hope to have more time to read more of his work. Nathan Fox, an EMT with Asbergers, who has just recently published his first book, “The Eyes Of An Autistic Yogi”.

(Click picture for Amazon link)

The blog post in particular that caught my eye, “Autistic Internet” (January, 20, 2012) I found to be very insightful and strangely familiar. I really think a lot of people with narcolepsy have so much in common with Asbergers and autism, thought processes, stimming, etc… that is something I would like to explore a little more some time. It’s incredibly interesting, and make so much sense, at least in my head…
In the article he says:
“The Internet is autistic. It is a disjointed and information populated place we go in search of some answer, finding but broken bits filling a myriad other questions. There are the gems out there, intact and pure for where we can draw inspiration. Yet it remains a universe we desire to moderate, control, while still trying to understand its nature.”  ~ Nathan Fox @TheAutisticYogi on Twitter

Just sit and contemplate that for a moment.
So often I am witness too, and have even complained myself, how people with out narcolepsy, our friends and family etc,  just cannot understand us because they don’t have it themselves. As a result of these “close to home” experiences we deal with, we sometimes seclude ourselves and assume it will be like that with everyone we meet. Yet here is someone, who I have no idea who he is, who does not have narcolepsy, yet … he gets it. Even if he does not know he does.

He may not be as tired, or have the worries of collapsing, but “Yet it remains a universe we desire to moderate, control, while still trying to understand its nature.” is a statement that speaks not just for the internet, and autism, but for narcolepsy as well.

Only having time to read just a bit this last quarter, I am super glad that Nathan’s blog is the one I came across. It has given  me a whole new angle of which to think about things when I am working on trying to communicate with others. Its something many of us struggle with, and there are a lot of lessons I think we can learn from our autistic friends.

Definitely take the time to read his blog and his book is available on Amazon.com click the picture above to go straight to the page. I am really looking forward to reading it myself!

OMG She’s Coding!

For National Sleep Awareness Week, I Give You My 100th Post!

So there you are lying on the ground, unable to speak or move but can hear everything around you. If you have a very severe case, (as I do) Your breathing may have become shallow, and your heart may have slowed a bit, but you are not in danger. Being left alone you will get up in a few seconds to a few minutes. But once you hear some well-meaning, unsuspecting stranger try to intervene, your fears kick in, triggering even more cataplexy, and it can take longer and longer for you to get up. It’s like you have one attack after another, after another, after another…

Code Blue? Not always true!

“Coding” is not a word you want to hear during a Cataplexy Attack.
It pretty much ensures someone is going to call 911, and maybe even attempt to “revive” you, possibly break your ribs, bruise your organs or even cause an arrhythmia which could in fact kill you. All this while you are completely conscious, and completely vulnerable. Due to the American Heart Associations Hands Only CPR campaign, the general untrained public has practically been given a legal license to try to be superheroes. I know AHA means well but that literally terrifies me to no end.

AHA’s  website literally states: “It’s not normal to see an adult suddenly collapse, but if you do, call 911 and push hard and fast in the center of the chest. Don’t be afraid. Your actions can only help.”  This is NOT TRUE. Performing chest compressions in that manner on a heart healthy person is in fact dangerous. In their FAQ , AHA addresses the question of seriously injuring some one who is not in cardiac arrest by reiterating their point of view and suggesting that: Hands-Only CPR could still help by causing the person to respond (begin to move, breathe normally or speak). If that occurs, Hands-OnlyTM CPR can be stopped. Otherwise, chest compressions should continue until EMS providers arrive. For someone dealing with severe cataplexy that is not necessarily true. Especially if fear is a trigger for that person. No one want to be stuck motionless and unable to respond while their ribs are being broken. Which, according to AHA FAQ, happens at least 1/3 of the time.

Now, to be VERY clear, I am not saying attempting to save someones life is not important. But I truly believe if you see this happen to someone, If you see someone fall like this, you should always always always check for medical alerts first. More and more people with narcolepsy are carrying information on them in some manner to alert others to their condition. Please take half a second to look for wrist bands, necklaces, and ICE contacts in cellphones. Even if you do this, and THEN start chest compressions, you are still acting faster than the ambulance can get there.

Coding and More Coding:
Using QR codes to avoid mistaken blue codes is my new favorite thing.  Using QR codes for medical alert information is gaining in popularity as the technology for scanning them has become available to the general public via smart phones… If a person stopping to help you in an emergency has a smart phone they can access the information that you provide on your personal QR Code with a simple scan. These things have more room for more information making a description of Narcolepsy, Cataplexy and how to deal with it more complete. Even if you haven’t simply fallen down, and truly do need medical attention, they will need to know other basic information about you and that people many with Narcolepsy have issues with anesthesia. Something like that could truly save your life. You can also link to websites for more information. And since the person who is helping likely knows how to work their phone really well,  it will be quicker and easier for them than looking at a tag that says “narcolepsy” and then trying to Google it if they don’t know what it is. (Or worse saw it in a movie!) There are organizations and companies that provide services to develop these QR codes for you for a fee, but it is also really easy to do yourself if you are just planning to stick to the basics. Here is a list of free QR Code Generators that might work to suit your needs if you plan to go this route!


I am not trying to be an alarmist…

The post is based on my experiences,and triggers of my *version* of  Narcolepsy & Cataplexy, which happens to be very severe. (I am well aware that it is not this bad for many people, no need to bring that to my attention.) My fears of falling in public have driven me to solitude, and severe social anxiety. It’s difficult to explain to others that I am afraid of  being in public and people, because I fear they might injure me in some way, and have them  understand that with my condition and the lack of general public knowledge of this disorder, that is a very real possibility for me. (I have actually developed many fears as a result of my diagnosis. I will have to get into that some day…) My anxiety, though admittedly, perhaps extreme, are based on facts, logic and personal history. And they are very real.  (Side note: I have suffered physical abuse by EMT’s who were attempting to make me stop “faking it”, I have been taken advantage of simply because I could not move, seemingly unconscious and unable to defend myself, and I know many other people this has happened to as well. It’s the scary stuff, the taboo subjects of narcolepsy, that no one wants to address. But it is there. And it is real.)  Look around yourself in your world. How much do the people in your area know about narcolepsy and cataplexy? How safe are you from your would be saviors?

I implore you to do something about this. Wear your tags. Carry your wallet card. National Sleep Awareness Week is this week, March 4-11 2012. If you did not have time to organize an event to spread awareness on a large-scale, at least take steps to protect yourself from well-meaning bystanders. Personally drop off pamphlets from your doctor or organizations such Narcolepsy Network, Wake Up Narcolepsy or The National Sleep Foundation, to EMS, police and fire responders, close to your home and work locations. Take a few minutes to explain them the importance of them understanding and encourage them to ask questions. Nothing is scarier than hearing an EMT say: “Cataplexy? Whats that?” and then listen as they accuse you of faking a seizure, or juice up their defibrillator.

Kryptonite for Narcolepsy: How it Works

I recently received a message from a good friend of mine with Narcolepsy who has been going through a particularly hard time. She asked me to remind her that she is a strong and good person. And of course I will do that, but it really got me thinking about just how *strong* Narcoleptics are. How much of our strength is a direct result of the constant uphill battle with our disorder. Our very strength is derived from our debilitating weakness. Our only other option is to become severely restricted emotionally, and I have seen that. For a while, I have even done that. And that is no way to live. Even Superman, after repeated exposure developed a tolerance to Kryptonite.

Emotions Are Our Kryptonite

So many of our symptoms are triggered by the onset of emotion, not just cataplexy. I cant have a decent argument, even if I am winning, without needing to go lay down immediately afterward. (IF I even make it to a bed that is.) It is completely exhausting to even *FEEL* anymore.  Oh and of course if I get pushed to the point of cataplexy, which more often than not, I do, then its all over… I am defeated, pushed to the ground by the weight of my own desire to be and act human when it is clear Android would have been a more appropriate choice… Emotionless and unphased by the human condition. Able to stand strong in the face of all exhilaration, all anger,  all fear, surprise, laughter… even love. The list goes on… I cannot stand it.

Literally. I CAN NOT STAND. It wont let me.

Seriously, Lex... So not funny.

Kryptonite comes in many colors and can effect you in many ways. Some forms or colors of K and their subsequent effects are very much like symptoms of Narcolepsy making it easy to identify with.

The Green K’s ability to bring Superman down to his knees in an unavoidable and often painful collapse.  Much like exaustion.

Red K pretty much does the same thing but is usually only temporary, similar to cataplexy. Red K also has the effect of paralysis, and hallucination, which definitely will ring a bell!

Black K can split a person into two different personalities, (bipolar much?!)

And Silver K will cause paranoid delusions, hallucinations and hyperactivity. And which one of us hasn’t dealt with that at least once?

Happily not all the Kryptonite out there can be said to coincide with Narcolepsy, (Seriously like we really need to kill off plant life or become radioactive on top of all the other crap too right?) but enough of it does to really make you think. Dealing with so many diffrent kinds of kryptonite or emotions in our case coming at us on a daily basis, Its really amazing any of us are able to function at all. We are our own heroes everyday fighting this battle.

Symptoms of Narcolepsy: Never a boring moment.

All fun fascinating facts about Kryptonite, but lets just stick to the basic original Green K for the sake of argument. (And my dwindling energy to get this posted…) Even Superman eventually because of the constant bombardment of his enemies using Kryptonite against him, had to enlist Batman to help him out. So regardless  of how super you are, how strong, or how good, it is always going to be ok to ask your friends to help you fight your battles. Whether you are saving the world, or saving your sanity, it is much easier to do with people by your side who understand. We are our own heroes. We all know what it feels like to be the only Kryptonian on the planet…

You ARE a STRONG and GOOD person.