Everyday is a struggle for me now. Why can't I just live my life the way I once did before everything stated going wrong with my health? All my life I was an out going person, someone who loved attention, singing, spending time with family and friends, washing my 2 cars every week, attending school and work, cleaning my house daily because I hate gems, taking care of others and dedicating my extra time to people and animals in need.
Now I am someone who spends 15 hours a day in bed or on the couch sleeping, having to push myself to get up to use the bathroom, no longer being able to work, forgetting the simplest words to finish a sentence, forgetting where I have placed things, falling often,bumping into things,canceling important appointments because I don't have the strength to get in the car and drive, forgetting to pay bills so I now have everything set up on auto pay, taking 3 hours to compose a simple email, oh there is so much more but I won't go on. This might sound strange but sometimes I wish I had scars or scabs on my face so people would stop saying " you don't look so"? Take it from me someone with an invisible disease, this is one of the worse things you can say to someone like me.
Now I am someone who spends 15 hours a day in bed or on the couch sleeping, having to push myself to get up to use the bathroom, no longer being able to work, forgetting the simplest words to finish a sentence, forgetting where I have placed things, falling often,bumping into things,canceling important appointments because I don't have the strength to get in the car and drive, forgetting to pay bills so I now have everything set up on auto pay, taking 3 hours to compose a simple email, oh there is so much more but I won't go on. This might sound strange but sometimes I wish I had scars or scabs on my face so people would stop saying " you don't look so"? Take it from me someone with an invisible disease, this is one of the worse things you can say to someone like me.
It becomes very depressing because there is nothing you can really do to get better. Everyday is more and more of a struggle and me makes it even worse when people ask me the following questions repeatedly. What is wrong? Why are your eyes so red? You are not the Kirstin I once knew what happened to you?Why don’t you sing anymore? How did you get narcolepsy? What is narcolepsy? Why are you not sleeping right now? Why won’t you come out with us anymore? Why have you put on so much weight?
Now I am sure all my real friends and family are just curious and want to know more so they can understand it better. But what really bother me are the people out there that are not even sure narcolepsy is real and think it is a joke. Everyone asks me why do you care what other people think? Its not that I care about what others think. My concern is about me and my daily struggles, I want people around me to understand what it is to live like this everyday, I want people to understand this is a real neurological disorder that impacts a lot of people. I want people to know how hard it is to live with it and how it changes your life.
I know this is going to sound really ugly but at least 2 times a day I find myself wishing the people that give me a hard time about it, or make fun of my disorder, would get it for only a month,so they would know what life is like to be me. Maybe it would stop them from being so cruel and help them to be more understanding.Sometimes I feel like this is only way they will understand and show sympathy for people who suffer with it.
Now I am sure all my real friends and family are just curious and want to know more so they can understand it better. But what really bother me are the people out there that are not even sure narcolepsy is real and think it is a joke. Everyone asks me why do you care what other people think? Its not that I care about what others think. My concern is about me and my daily struggles, I want people around me to understand what it is to live like this everyday, I want people to understand this is a real neurological disorder that impacts a lot of people. I want people to know how hard it is to live with it and how it changes your life.
I know this is going to sound really ugly but at least 2 times a day I find myself wishing the people that give me a hard time about it, or make fun of my disorder, would get it for only a month,so they would know what life is like to be me. Maybe it would stop them from being so cruel and help them to be more understanding.Sometimes I feel like this is only way they will understand and show sympathy for people who suffer with it.
About a month ago, things got extremely bad for me, I am certain, I was declined for a position because of my neurological disorder. For about 2 years now, I have been sick and missed a lot of work, which was covered and approved by FMLA. I finished top 10 in my department and they took everyone in the top 10 except me. Of course, I got the standard decline letter stating there were others more qualified. This put me further into my depression. All i did was think about my contributions to the business before I could no longer pretend that nothing was wrong. Pretending nothing was wrong became very hard after a while and I could no longer do it. Everyday, I would step into work and pretend I was an actor in a Broadway play. You see when I was younger I was an actress in NYC on Broadway. For many years, in many roles like Annie,Sound Of Music and Oklahoma so acting cane pretty easy for and at this point it was all i could do to hide my battle narcolepsy.
In all my year with my company, I remained a stellar performer in the department and here is how I did it. I would take my laptop home at night, work, and additional 2 to 6 hours to keep up with my peers, it was all I could do. You see a job that once took me 6 hour or less to do in a day was now taking me around 12. That is how committed I was to my company, I loved working for them and I thought they enjoyed having me as a 14 year employee. I never expected them to decline me for a home based position. A position I really needed, insurance was a must for the 18 meds I take a everyday just to function at about 50% of what a normal person does. Of course, the stress and worry of the turned down made me even sicker but guess what I did?
I tried my best to forgive and forget before it made me even sicker. Some have asked why not go to ERG? Why not fight it? Because I do not have enough energy left in me to fight anymore. I was also scared I would lose my job because they would then fire me for bring a complaint against the company. So I left it alone and I was laid off after 14 years because I had no more energy to fight. So today I will end my blog by saying, I hope one day more people will understand this disorder and help people with it instead of hurting them.
In all my year with my company, I remained a stellar performer in the department and here is how I did it. I would take my laptop home at night, work, and additional 2 to 6 hours to keep up with my peers, it was all I could do. You see a job that once took me 6 hour or less to do in a day was now taking me around 12. That is how committed I was to my company, I loved working for them and I thought they enjoyed having me as a 14 year employee. I never expected them to decline me for a home based position. A position I really needed, insurance was a must for the 18 meds I take a everyday just to function at about 50% of what a normal person does. Of course, the stress and worry of the turned down made me even sicker but guess what I did?
I tried my best to forgive and forget before it made me even sicker. Some have asked why not go to ERG? Why not fight it? Because I do not have enough energy left in me to fight anymore. I was also scared I would lose my job because they would then fire me for bring a complaint against the company. So I left it alone and I was laid off after 14 years because I had no more energy to fight. So today I will end my blog by saying, I hope one day more people will understand this disorder and help people with it instead of hurting them.
I understand. I, too, have Narcolepsy, and it's hard to even do simple things. It's a shame to think that my life is as lackluster as it is at the young age of 22. Everything is harder than necessary, and it's not that no one understands...they just don't care to even try understanding. I've been asked why I was tired and responded by explaining my Narcolepsy, and 9 times out of 10 the response will be, "Oh. I'm tired all of the time, too. Maybe you should go to bed earlier..." Anyways, I just wanted to tell you that I understand. It doesn't really fix anything, but sometimes it just helps to hear that someone else get it.
ReplyDeleteThank you for your kind words. I am so sorry to hear you are battling with Narcolepsy as well. I hope you are doing ok?
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