No, I am nor that mother, I am not that one. No, I am not going to apologize for not being that one. I am not the one to pop my children in the mouth or curse them out if they get flippant. No, I am not trying to be their friend instead of their mother because I don't. What I am is a tired, parhologically sleepy, cataplexic who is doing the best she can with what she has been given, which unfortunately doesn't include much moral or emotional support at all.
I try to remain optimistic and positive as much as possible but it can be hard. The funny thing is it is not this disease Narcolepsy that is starting to make me bitter. It is the people around me and the stupid things they say.
Well, I am about to put it all out there now, because I am tired. I don't mean because of the Narcolepsy either. I am tired of pretending I feel OK when I don't to help or support others who don't know or appreciate just how much it takes out of me.I am tired of fighting to hide or disguise my Cataplexic attacks or working through them for fear of what people will think if I give in to them because I have kept them hidden for so long. I am tired of people doing no better than me trying to give me advice on what I need to do better when they don't know the first thing about what it is like to have Narcolepsy with Cataplexic and haven't taken opportunity one to try to find out.
I am tired of stupid statements like others have Narcolepsy and work. Well guess what, most of those others are going through the exact same thing as me.How do I know this? I talk to those others. I am friends with those others. How many of those other Narcoleptics have you spoken with? Just because you don't hear about it like other diseases, don't for one second think that it is NOT a major, major struggle for most Narcoleptics to make it through an average day. Narcolepsy is one of the most misdiagnosed, misunderstood, misinterpreted diseases and being pathologically sleepy is hardly the only effect it has on us, so let me explain once and for all what an average day is for me.
4:30 am I pull myself out of bed after being in and out of sleep all night. More likely than not, I have been up since about 2:00 am and have not been able to fall asleep. When I am asleep, I spend most of it in REM going in and out of the most disturbing dreams.Some mornings I will wake up to a Cataplexic attack where I am just too weak to move. Guess what though: my kids need to eat. I have bills to pay and so, if I am still weak after waiting for my attack to pass, I push myself with everything in me to fight through it and make my way to work. I get dressed, make my way to the bus stop fighting the feeling to collapse and praying to God asking how much longer I will have to keep doing this.
I catch the bus to work hoping I don't fall asleep, fighting anxiety attacks that I will fall asleep, miss my stop and be late. Yes, this has happened to me more than once. Sometimes I panic because even though I ride the bus regularly, I am too out of it to know where I am most of the time so I get confused and panic. Guess what that does. Bingo, another attack so by the time I make it to my last stop, my little body has gone all limp again which means I have to make the long walk from the bus stop feeling as if I am going to collapse at any moment. Now comes the fun part, crossing the street or the expressway feeling so close to collapse wondering if this will be the day your body will just not fight anymore. How much fun do you imagine it is crossing a busy intersection with the feeling your body is going to give way at any second? And again, I ask God, how much longer.
Now, I won't go through my whole work day. I take stimulants that don't really work but would have the average person high as a kite. I try to stay awake enough to not make any job threatening mistakes and wish the day would end so I can try to sleep for however long I can. When my day finally ends, I make my way back home still fighting to stay awake. Once home, I literally struggle to force myself to stand long enough to make dinner because the girl's have to eat. Hopefully, I won't zone out and nearly burn down the kitchen because Yes, I have done this on numerous occasions. You see, simple things like reading a paragraph, cooking, having a conversation without having an attack, normal, everyday things most take for granted, I struggle with everyday. I can talk to my children and try to teach them right from wrong, but I can't chase after them, follow them around or beat on them nor do I want to. It takes all I have to make it through a day. I take meds to sleep and meds to stay awake and they barely work. I don't argue because that will just make all my limbs go weak.I am not lazy. I am not a horrible mother. I am not a drug addict and I am not going to keep explaining myself or addressing other people's perceptions about what I should or should not be doing. Anyone that cannot understand can step, jet, blow like the wind, poof be gone. I find it funny that people who barely know me understand more about me than people who have been around for years. So, as of today, I am making a new start. I am who I am and I am a Narcoleptic and it affects pretty much every single aspect of my life, including how I deal with life situations and I refuse to be stressed or upset by people and their unsolicited opinions when they don't know fact number one about what it entails. I don't need sympathy because God has provided me with a strength most of you will never understand. Now, I don't even care if I am understood or not because I don't have the time, energy or inclination to even care what some of you think anymore. I actually feel more liberated now because I realize how little those thoughts and opinions matter. So before opening up your mouth to give me advice on something you know nothing about, save it and peace out because I am so over it.
