Have you ever seen one of those horror movies where a person gets trapped inside a doll, and it shows its eyes and that's the only sign the person is there? Some days are like that for me.
Morning- time to get up. Today was OK , a good day is taking meds at 4 and getting up at 5. A bad day well lets just say late, and the worst I wake at 12 or latter. The reason I get up at 5 is I have to get my oldest on the bus. It's the first fight of the day. Two foot, as her aunt nicknamed her, reminds me of how it was when I was little. She sleeps all night and is too tired to wake up in the morning. I can't fix my past, but I refuse to watch my kids live it out in front of me.
It is a little past 7 so the fun begins. The meds I took some time after 4:30 have little affect on the sleepiness that comes and goes. Second battle of the day the hardest of them all, stay awake. If my life were a horror movie, this would be the place where the "bad guy" was trying to catch me so he/she could put me in the doll.
Tuesday work day. I am lucky to have discovered merchandising, it allows for my "issues" for the most part. I got my first job ever when I was 20. I worked at a pet store, and I loved it! Unfortunately this is where I learned about "Time UP" it started out grate then it went down hill. As time progressed it got harder and harder to wake up before time for work. It's like you spend a lot of money on something and wind up borrowing against your next pay check to maintain it, this is ok , for a while, eventually it costs so much that you have no next check left, and not much of the next one ether. For me the it is work and instead of money, its the ability to function. Well safe to say I started over sleeping, my boss even had to call me multiple times to wake me up. Then one day he called to tell me not to bother coming in at all. He was a very good boss, not only did I learn from him, but he gave me a lot of chances when he didn't have to. After that I discovered when it was "Time Up". This was the point when I quit before getting fired.
Merchandising is the same, although it is longer to"Time Up", but it still shows up. For getting most jobs a long list of previous employment is a bad thing, luckily merchandising is't that way. My current job is one I will miss, but it is that time again. It gets harder to get going and to remember everything I need to do, so it is time to go.
Even writing these posts is tiring it usually takes all day to finish, but I am going to leave it at this for now and try to get going and do my job, in my endless sleepwalk I call life.
Tuesday, April 30, 2013
Friday, April 19, 2013
Confusion, void, Shannara, and pain.
It was a Monday, same as any other my sister and I running down the long drive way that ran through the woods to catch the bus, backpack and flute case bouncing, till we reached the road out of breath to wait for the bus to pull up to take us to school. It was the last Monday I would ever go home. While at school I spoke with my teacher about something I thought they would fix and shattered my whole world. After school in the DHR office after my mother had arrived one of the workers asked if I would like to spend 3 days in a foster home, I didn't but I knew they wanted a cretin answer and was terrified and unsure I looked to my mom for some sign as to what to say, any sign. She did not give one I didn't know it then but she had been questioned and threatened and they wanted to have any reason to continue with her some more, so she gave no sign and I knowing they wanted me to go agreed and so they took me away.
I was placed in a high risk foster home, one where the location of it was kept secret to protect the kids from their families. I don't remember what time of year or names or faces or even how long I was there, but I do remember that one girl older than me did a lot to help me and I still miss her and hope she is well and happy. She was so strong and kind, you would have had no idea she had lived in a hell like you could never imagine. I will leave the story of her hell out, as it is not mine to tell. I mention her because she held back the void from covering me completely, and gave me some hope. Then my grandmother came to take me to live with her and the void swallowed me whole. The void was a place in my mind, it transformed dream and reality mixing them together till neither was all one or the other. I was not sleepy because I was not exactly in reality but could continue what I was expected to do because I was not exactly out of it. I think of it as sleep walking and memories from this time are shadowed and faded with pieces scattered here and there like a dream that you can almost grasp till it turns to mist and floats away. One thing I do remember is a book. When I was younger I hated to read and avoided it when I could, then my sister read me a book and I loved it so much I started reading it and all the rest of the series, which led to more and more books. I used the stories as a place to hide in my void mostly the first The Sword of Shannara, by Terry Brooks. I was content to stay in my void were life was not as hard and been willing to sleepwalk the rest of my life, but they have people trained to fix that. So the therapist banished my void and returned me to the reality I wanted to escape from, leaving my mind to block from me the things I could not face.
Since that time my mind has had more trouble holding things and I am absent minded and forgetful. This did little to encourage me to stay out of bed and I tended to hide there when I could trying to escape the world and find the rest denied me every night. My weariness increased as I got older and things became harder to remember, and I became "lazier" I found a way to stay awake. I would claw my skin off, which is not a good habit but it was what I had. My fathers family had become a restricted area and having been around only them during my child hood I was hurt and ashamed when told by my mom and sister that they did not want me and would "shoot me on site". This knowledge added to my attempts to stay awake turned in to a self destructive habit that resulted in parts of my body being covered with sores, but at least I was awake. Since it has affected my life in a lot of ways, because it became a habit and to this day I have not concurred it, I was able to hide it for years, but then I started having my face break out when I became stressed and so now I ware it on my face most of the time a reminder of trying to stay awake and wish to rip off my skin to escape my life and find my past that I once had, but had lost because of talking to people who were "there to help" this I think worsend my fear of people and the trick played by DHR that got me to go to that foster home, destroyed my faith in other people. The biggest thing was I lost faith in God as well. It was a long and hard journey back to that faith but maybe it was needed to make me me.
A song by one of my favorite singers Rouge has a line that says "the very thing that empty's you shall surely make you whole" I think this is true, at least I really hope it is, and I hope everyone emptied by life find strength in living that life and the peace they deserve.
I was placed in a high risk foster home, one where the location of it was kept secret to protect the kids from their families. I don't remember what time of year or names or faces or even how long I was there, but I do remember that one girl older than me did a lot to help me and I still miss her and hope she is well and happy. She was so strong and kind, you would have had no idea she had lived in a hell like you could never imagine. I will leave the story of her hell out, as it is not mine to tell. I mention her because she held back the void from covering me completely, and gave me some hope. Then my grandmother came to take me to live with her and the void swallowed me whole. The void was a place in my mind, it transformed dream and reality mixing them together till neither was all one or the other. I was not sleepy because I was not exactly in reality but could continue what I was expected to do because I was not exactly out of it. I think of it as sleep walking and memories from this time are shadowed and faded with pieces scattered here and there like a dream that you can almost grasp till it turns to mist and floats away. One thing I do remember is a book. When I was younger I hated to read and avoided it when I could, then my sister read me a book and I loved it so much I started reading it and all the rest of the series, which led to more and more books. I used the stories as a place to hide in my void mostly the first The Sword of Shannara, by Terry Brooks. I was content to stay in my void were life was not as hard and been willing to sleepwalk the rest of my life, but they have people trained to fix that. So the therapist banished my void and returned me to the reality I wanted to escape from, leaving my mind to block from me the things I could not face.
Since that time my mind has had more trouble holding things and I am absent minded and forgetful. This did little to encourage me to stay out of bed and I tended to hide there when I could trying to escape the world and find the rest denied me every night. My weariness increased as I got older and things became harder to remember, and I became "lazier" I found a way to stay awake. I would claw my skin off, which is not a good habit but it was what I had. My fathers family had become a restricted area and having been around only them during my child hood I was hurt and ashamed when told by my mom and sister that they did not want me and would "shoot me on site". This knowledge added to my attempts to stay awake turned in to a self destructive habit that resulted in parts of my body being covered with sores, but at least I was awake. Since it has affected my life in a lot of ways, because it became a habit and to this day I have not concurred it, I was able to hide it for years, but then I started having my face break out when I became stressed and so now I ware it on my face most of the time a reminder of trying to stay awake and wish to rip off my skin to escape my life and find my past that I once had, but had lost because of talking to people who were "there to help" this I think worsend my fear of people and the trick played by DHR that got me to go to that foster home, destroyed my faith in other people. The biggest thing was I lost faith in God as well. It was a long and hard journey back to that faith but maybe it was needed to make me me.
A song by one of my favorite singers Rouge has a line that says "the very thing that empty's you shall surely make you whole" I think this is true, at least I really hope it is, and I hope everyone emptied by life find strength in living that life and the peace they deserve.
Thursday, April 18, 2013
Mad relatives, lots of yelling, and the two sides of the coin.
It seems the normal response to any condition that people don't understand is usually to yell. I have no idea what it is supposed to accomplish, maybe they think it would motivate or clear up the whole issue. When I was 12 I was placed in my grandmothers home. Until this time I had not spent a lot of time with her, only visiting once in while,at this time I found out how different my mothers way of parenting was from her mothers. My mother went trough several jobs,in a verity of professions. I remember that she was always very tired, my father preferred to use lazy and was sure to do things to help cure her of it. Some of it worked in a way, her habit of sleeping trough her alarm was one he helped her with. He took an Oogah horn (which I haven't the foggiest how to spell, so hopefully you will understand it is a horn that is named for the sound it makes, VERY LOUDLY)and connected it to a timer and a car battery then set the timer for after her alarm was set to go off. They had a water bed and my mother always said it was the hardest thing to get out of, but I have heard she had no trouble that day. On that day she learned to levitate, which she did when when that horn went off straight up and across the room and did not touch foot to floor til she had smacked it hard enough to stop it. I was not around for this and although she tended to be very tired a lot of the time, I don't think she has slept through an alarm since. My grandmother on the other hand got up early and was going the whole day. I no longer got to rest during the evenings and sleeping in was not an option. school on the other hand did not change much I still had a long walk to the bus stop even had the same teachers, my sleepiness I think stayed about the same for the most part at least. My grandmother had 4 kids, two girls, and two boys. All of her kids are determined that she was happy. My inability to conform to this change and grandmothers constant having to hunt me during the day (I usually was trying to nap) made me the target of many scoldings most of which included them saying "Just do what she wants, and you should know what to do, It's not that hard." I never wanted to upset her but as she once told me"Your mother was my worst child and you are worse than her!!!" I put this at risk of reproach but I am not saying she nor her kids are unfair or wrong as a matter of fact I did not make it easy on her and she still is one person who still tries to improve me, it took a long time but, I learned that a lot of the time she is right and the rest of the time she knew how to look it up. I used to think she had it out for me, I now think she just has faith in me.
The differences between my mom and her mom are vast and yet not so much. Years ago my mom had a sleep study done, she found out she had narcolepsy, not long after my only sib was next and as a weird twist my grandmother was next. I was not tested at that time due to my family being sure I did not have it. But about 5 years ago I had my test and so now my family has 4 diagnosed cases, and my sister and I are the 3rd generation. The weird twist ... none of us have the same major issues, even though we have common symptoms. It just goes to show how hard it is to identify people who have it.
The differences between my mom and her mom are vast and yet not so much. Years ago my mom had a sleep study done, she found out she had narcolepsy, not long after my only sib was next and as a weird twist my grandmother was next. I was not tested at that time due to my family being sure I did not have it. But about 5 years ago I had my test and so now my family has 4 diagnosed cases, and my sister and I are the 3rd generation. The weird twist ... none of us have the same major issues, even though we have common symptoms. It just goes to show how hard it is to identify people who have it.
Wednesday, April 17, 2013
The attic light is dim
Well I have no idea what I am doing, I only know what I am trying to do, and who I am . Hopefully that will be enough.
Hello I am a mother, a wife, a daughter, a part time employee, a dreamer, a hard worker, a crater, and a Narcoleptic. The funny thing is, when you tell someone that you have Narcolepsy for the most part they ether have no idea what it is or they want to know what you drive so they can avoid you on the road. The second is due for the most part because of what they think they know. What you see in the moves is not always how things are. I think the reason for the dramatizing of this condition is due to its lack of drama, as far as move making can see. I am only one of many people with narcolepsy ( or PWNs ) who are trying to be heard, we want to let others see our world so they can understand how things are on our side of reality.
First I do not fall asleep in the middle of conversations, at least not were anyone can tell. If you ask my best friend she will say I seem to lose track of the conversation, or get off track. Second I look and act like, well almost, normal. I get my kid on the bus, drive, work, shop, and all the things one has to do in a day. Third I am not LAZY. PWNs don't really like that word much. We hear it A LOT. This misconception is on the other side of the spot light, it is what the people closest to us see. Confused? Well I will try to open your eyes, and if you are willing I will try to show my reality to you.
I have suffered the symptoms of Narcolepsy most of my life. When I was little I tossed and turned all night and then in the morning could barely drag my self out of the bed. If you are thinking: Well there's your problem you should have gone to bed earlier, it is a bit more complicated. Every one has a internal clock, this tells your body when to sleep and wake. If you are a morning person it says wake up at dawn, normally this clock can be adjusted. Mine is stuck on night. In other words day = night and night=day. For me to stay awake during the day could be compared to the before mentioned morning person to go from 1st shift to 3rd. This persons brain is set to day light =awake, dark= sleep, so when they suddenly need to sleep during the day so they can work all night, their brain says "Hey wake up" and they have a hard time falling asleep and getting the rest they need for work that night. Normally your brain can adjust to this change and so it can do its "night job" which is to fix up your body and give you that refreshed feeling. Mine on the other hand seems to have automatic reset, so even though I get up in the morning and go to bed at night it never seems to get the hint. I also have always had a tendency to dose off when not active. I spent most of the 5th grade in trouble for that, part of it landing me in break detention, my teacher would read from the text book or something else that required all of us to be still and listen, and next thing I know WHAM! my head hits my desk. This never went over well with my teacher, who commanded me to go to bed earlier. I like to think I tried to do so, and I know I tried not to fall asleep in her class. My hardest efforts for the most part were in vain. My head would fill with cotton muting the voice of my teacher, which did little to help my efforts, my eye lids would grow heavy and it was like trying to open your eyes when they are crusted shut. The darkness would creep in starting at the edge of my vision slowly covering my eyes making it hard to see, I would hold out as long as I could not yet old enough to realize that having to focus all my thoughts on simply looking like I was awake to avoid getting in trouble, that I was missing the lesson and would still lose. I am not saying "Were it not for this I would be the best student ever!!" I most likely still would have been poor at best but I'm sure it didn't help. I knew I wasn't supposed to fall asleep and nothing is as shocking as when you feel all fuzzy and then someone slaps your face with a board, which is what it felt like, and as I was trying to figure out what had happened, here came the teacher to add to my fright, because that's the thing about sleep attacks some times they creep up so you can fight and some times you feel like a mime who just walked head on it to one of those invisible walls.
If you have been able to follow this far good if not I am sorry,like I said I'm just a mom, ect. not a writer or trained pro. I'm just trying to bring attention to a condition that dose so much to a person and still is for the most part unknown,in hopes that if my little girls develop it the pain and depression it can cause can be lessened if not prevented. And all the people who have this and don't know (I read that only a few people with it ever find out) will have a chance to get help. I also hope that the people who have loved ones with this will be able to understand what it is and what it dose not only to the mind and body but to the spirit, a simple remark made in fun can be a devastating blow. If I can help one person I will be happy I wrote this. I have a 2 year old demanding my attention so I will stop here and continue latter.
Hello I am a mother, a wife, a daughter, a part time employee, a dreamer, a hard worker, a crater, and a Narcoleptic. The funny thing is, when you tell someone that you have Narcolepsy for the most part they ether have no idea what it is or they want to know what you drive so they can avoid you on the road. The second is due for the most part because of what they think they know. What you see in the moves is not always how things are. I think the reason for the dramatizing of this condition is due to its lack of drama, as far as move making can see. I am only one of many people with narcolepsy ( or PWNs ) who are trying to be heard, we want to let others see our world so they can understand how things are on our side of reality.
First I do not fall asleep in the middle of conversations, at least not were anyone can tell. If you ask my best friend she will say I seem to lose track of the conversation, or get off track. Second I look and act like, well almost, normal. I get my kid on the bus, drive, work, shop, and all the things one has to do in a day. Third I am not LAZY. PWNs don't really like that word much. We hear it A LOT. This misconception is on the other side of the spot light, it is what the people closest to us see. Confused? Well I will try to open your eyes, and if you are willing I will try to show my reality to you.
I have suffered the symptoms of Narcolepsy most of my life. When I was little I tossed and turned all night and then in the morning could barely drag my self out of the bed. If you are thinking: Well there's your problem you should have gone to bed earlier, it is a bit more complicated. Every one has a internal clock, this tells your body when to sleep and wake. If you are a morning person it says wake up at dawn, normally this clock can be adjusted. Mine is stuck on night. In other words day = night and night=day. For me to stay awake during the day could be compared to the before mentioned morning person to go from 1st shift to 3rd. This persons brain is set to day light =awake, dark= sleep, so when they suddenly need to sleep during the day so they can work all night, their brain says "Hey wake up" and they have a hard time falling asleep and getting the rest they need for work that night. Normally your brain can adjust to this change and so it can do its "night job" which is to fix up your body and give you that refreshed feeling. Mine on the other hand seems to have automatic reset, so even though I get up in the morning and go to bed at night it never seems to get the hint. I also have always had a tendency to dose off when not active. I spent most of the 5th grade in trouble for that, part of it landing me in break detention, my teacher would read from the text book or something else that required all of us to be still and listen, and next thing I know WHAM! my head hits my desk. This never went over well with my teacher, who commanded me to go to bed earlier. I like to think I tried to do so, and I know I tried not to fall asleep in her class. My hardest efforts for the most part were in vain. My head would fill with cotton muting the voice of my teacher, which did little to help my efforts, my eye lids would grow heavy and it was like trying to open your eyes when they are crusted shut. The darkness would creep in starting at the edge of my vision slowly covering my eyes making it hard to see, I would hold out as long as I could not yet old enough to realize that having to focus all my thoughts on simply looking like I was awake to avoid getting in trouble, that I was missing the lesson and would still lose. I am not saying "Were it not for this I would be the best student ever!!" I most likely still would have been poor at best but I'm sure it didn't help. I knew I wasn't supposed to fall asleep and nothing is as shocking as when you feel all fuzzy and then someone slaps your face with a board, which is what it felt like, and as I was trying to figure out what had happened, here came the teacher to add to my fright, because that's the thing about sleep attacks some times they creep up so you can fight and some times you feel like a mime who just walked head on it to one of those invisible walls.
If you have been able to follow this far good if not I am sorry,like I said I'm just a mom, ect. not a writer or trained pro. I'm just trying to bring attention to a condition that dose so much to a person and still is for the most part unknown,in hopes that if my little girls develop it the pain and depression it can cause can be lessened if not prevented. And all the people who have this and don't know (I read that only a few people with it ever find out) will have a chance to get help. I also hope that the people who have loved ones with this will be able to understand what it is and what it dose not only to the mind and body but to the spirit, a simple remark made in fun can be a devastating blow. If I can help one person I will be happy I wrote this. I have a 2 year old demanding my attention so I will stop here and continue latter.
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