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.