I am sick and tired (no pun intended) of the way Narcolepsy rules my life. they way it makes me too tired to leave the house to go out for a drive, or catch up with some friends
I feel like all i ever do is sleep. i barely have the energy to see my friends or go out and enjoy myself, and hate spending my life in bed. I am completely bored at home but don't have the energy to do anything about it. I really enjoy work, as those few hours are generally the only time i get out of the house. i would love to get out more and go to the beach, or be able to go to the cinema with mark without falling asleep. i would love to just be able to ring someone and have a conversation with them without feeling tired and unable to focus on what they are saying.
I wish for one day I had enough energy to have a proper tidy up in my home, borrow a lawn mower and sort the lawns out. or clean my bedroom propery
I feel really down lately as i feel as if im not gettting much out of life and i'm completely unable to make the most of it
i just wish things could be different
Sunday, 29 December 2013
Sunday, 15 December 2013
My journey to diagnosis
All my life I wanted to do something useful and helpful for people, I didn't ever want to be stuck in a dead end job doing the same thing every day.
I also always had a fascination with big machienery. diggers, dumptrucks, trains and planes so decided that when I grew up I wanted to be an aeronautical engineer (building aeroplanes) and in oreder to do this i needed to pass 3 years of physics in high school in order to study physics at university.
Thankfully I loved physics. I was always good at maths and numbers, and physics was easy to pick up and understand. I passed my first year of high school physics with A's making me top of the class in 2008.
For the first half of 2009 physics was great and I was still top of the class until march/april when i found myself unable to stay awake and focus. I would sit at the table and my eyes would droop and my head would just fall in funny positions. Sometimes i could hear everything around me and be unable to respond and other times I was completely asleep and had no idea until I woke up confused as to why we were talking about totally new things. Initially I passed this off as the result of problems at home making me unable to sleep during the night, but as this was occuring daily at school in many of my classes I became concerned and went to the doctor. the did some blood tests and found nothing wrong so taught me how to relax myself at night in order to sleep better but this didnt help. next they made me do a test with a sleep mask and moniter to test me for sleep apnea but still found no issues. These tests went on for ages without finding any issues so I gave up with the doctors.
While the doctor stuff was going on I was struggling to cope with my schooling. I was getting behind in all my classes, including physics. I was still passing, but not with the grades i would of liked. My first ever C was a major shock to me and I broke down. I lied to my parents about my grades as they were difficult to talk to and unsupportive and didnt see anything other than an A as a passing grade. this lying continued all throughout 2009 where I told them my exam results were a lot better than what they actually were to avoid disappointing them. I never told them anything was wrong medically
In 2010 I only had one more year of high school and physics to go until I could go and study physics at uni, but things were getting increasingly worse. somedays I didnt go to school because i physically didnt have the energy, and if I did go I would sleep in classes, and my teachers were very concerned. this year was the make or break year and I broke. I tried to keep up with my classes the best I could, and passed my assignments throughout the year, but as the final exams approached my sleep and lack of energy impacted my ability to study. I failed my physics exams and my goals were crushed. I was so gutted.
I also tried out for the army shortly after this as i thought that something physical would help keep me alert and awake. I paased my /english and maths papers in 2010 so this meant I was eligable to sign up. I did all the testing to join, passed the physical and written, but failed the medical due to the sleep problem which had been occuring for two years now, which I still had no diagnosis for. I was referred to a specialist but was unable to make the appointment as I had no way to get there, My mum had moved away and my dad was often working and unable to help me out.
I spent all of 2011 waitressing part time and this was depressing. I felt that this random sleep issue had prevented me from leading a meaningful fullfilling life. people often thought I was lazy and unmotivated but in all honesty I just didn't have the energy to do anything. It was the worst year of my life, when I wasnt working I was stuck at home in a bad relationship. I was living with my boyfriend and we argued a lot. unfortunately it was the only place i could live at the time and had to put up with it. between that, a boring job, and health issues everything became too much and in november I broke down and behaved in a way that led to me being arrested and locked in the cells for a night (I was attacked my my boyfriends friend and defended myself with a knife because no one else would help me) and having to face court. My court case carried on for 3 long months and this was very stressful on me and I realised I couldnt live life like that. I decided to look into other options of things I could try studying and just see where I get. I decided to sign up to study occupational therapy as it sounded interesting and rewarding.
I began my study in Feb 2012 and found the course interesting and there was quite a lot of physical learning which helped keep me awake. I enjoyed it, so I was able to make myself get out of bed in the mornings. everything was going well, with fewer sleep attacks until placement.
My first placement was in Timaru hospital in may 2012. it was a community placement meaning i was working with people in their homes. the first week went well, but it snowed the second week, and people had there fires and heaters on. sitting on their couches in the heat made it difficult to stay awake and I would be dozing off within minutes, this made me look bad. I was also falling asleep in the MDT meetings at the hospital, and luckily the neurosurgeon picked up on this and pulled me aside for a bit of a chat. we talked about my sleeping and what had been happening at school over the last few years.Then he set up an appointment for me to do a sleep study in Dunedin when I returned home in July.
I did the test in July and the results came back in August. They told me it was a condition called Narcolepsy which I had never heard of before, but they told me it effects REM cycles and chemical levels in the brain. They said it is what had been causing my difficulties in class. from there we began talking about medical options to help me control this.
From there things began to get better, my studies improved significantly and I was able to explain to my lecturers why I had been sleeping in class, and they were able to help me from there. They allowed me to take recording devices to class to catch up on things I miss when I'm asleep and allow me to play with things in class to keep my self awake.
It is now the end of 2013 and I can say that things have gotten better for me, This year I ended my abusive relationship, and ended up meeting a very lovely guy who makes me happy, joined a sports team and learnt how to play rugby, got myself a job and of course I have passed my second year of occupational therapy. After a long road of struggling I have finally been able to begin sorting my life out and getting back on my feet, and think things can only get better from here
I also always had a fascination with big machienery. diggers, dumptrucks, trains and planes so decided that when I grew up I wanted to be an aeronautical engineer (building aeroplanes) and in oreder to do this i needed to pass 3 years of physics in high school in order to study physics at university.
Thankfully I loved physics. I was always good at maths and numbers, and physics was easy to pick up and understand. I passed my first year of high school physics with A's making me top of the class in 2008.
For the first half of 2009 physics was great and I was still top of the class until march/april when i found myself unable to stay awake and focus. I would sit at the table and my eyes would droop and my head would just fall in funny positions. Sometimes i could hear everything around me and be unable to respond and other times I was completely asleep and had no idea until I woke up confused as to why we were talking about totally new things. Initially I passed this off as the result of problems at home making me unable to sleep during the night, but as this was occuring daily at school in many of my classes I became concerned and went to the doctor. the did some blood tests and found nothing wrong so taught me how to relax myself at night in order to sleep better but this didnt help. next they made me do a test with a sleep mask and moniter to test me for sleep apnea but still found no issues. These tests went on for ages without finding any issues so I gave up with the doctors.
While the doctor stuff was going on I was struggling to cope with my schooling. I was getting behind in all my classes, including physics. I was still passing, but not with the grades i would of liked. My first ever C was a major shock to me and I broke down. I lied to my parents about my grades as they were difficult to talk to and unsupportive and didnt see anything other than an A as a passing grade. this lying continued all throughout 2009 where I told them my exam results were a lot better than what they actually were to avoid disappointing them. I never told them anything was wrong medically
In 2010 I only had one more year of high school and physics to go until I could go and study physics at uni, but things were getting increasingly worse. somedays I didnt go to school because i physically didnt have the energy, and if I did go I would sleep in classes, and my teachers were very concerned. this year was the make or break year and I broke. I tried to keep up with my classes the best I could, and passed my assignments throughout the year, but as the final exams approached my sleep and lack of energy impacted my ability to study. I failed my physics exams and my goals were crushed. I was so gutted.
I also tried out for the army shortly after this as i thought that something physical would help keep me alert and awake. I paased my /english and maths papers in 2010 so this meant I was eligable to sign up. I did all the testing to join, passed the physical and written, but failed the medical due to the sleep problem which had been occuring for two years now, which I still had no diagnosis for. I was referred to a specialist but was unable to make the appointment as I had no way to get there, My mum had moved away and my dad was often working and unable to help me out.
I spent all of 2011 waitressing part time and this was depressing. I felt that this random sleep issue had prevented me from leading a meaningful fullfilling life. people often thought I was lazy and unmotivated but in all honesty I just didn't have the energy to do anything. It was the worst year of my life, when I wasnt working I was stuck at home in a bad relationship. I was living with my boyfriend and we argued a lot. unfortunately it was the only place i could live at the time and had to put up with it. between that, a boring job, and health issues everything became too much and in november I broke down and behaved in a way that led to me being arrested and locked in the cells for a night (I was attacked my my boyfriends friend and defended myself with a knife because no one else would help me) and having to face court. My court case carried on for 3 long months and this was very stressful on me and I realised I couldnt live life like that. I decided to look into other options of things I could try studying and just see where I get. I decided to sign up to study occupational therapy as it sounded interesting and rewarding.
I began my study in Feb 2012 and found the course interesting and there was quite a lot of physical learning which helped keep me awake. I enjoyed it, so I was able to make myself get out of bed in the mornings. everything was going well, with fewer sleep attacks until placement.
My first placement was in Timaru hospital in may 2012. it was a community placement meaning i was working with people in their homes. the first week went well, but it snowed the second week, and people had there fires and heaters on. sitting on their couches in the heat made it difficult to stay awake and I would be dozing off within minutes, this made me look bad. I was also falling asleep in the MDT meetings at the hospital, and luckily the neurosurgeon picked up on this and pulled me aside for a bit of a chat. we talked about my sleeping and what had been happening at school over the last few years.Then he set up an appointment for me to do a sleep study in Dunedin when I returned home in July.
I did the test in July and the results came back in August. They told me it was a condition called Narcolepsy which I had never heard of before, but they told me it effects REM cycles and chemical levels in the brain. They said it is what had been causing my difficulties in class. from there we began talking about medical options to help me control this.
From there things began to get better, my studies improved significantly and I was able to explain to my lecturers why I had been sleeping in class, and they were able to help me from there. They allowed me to take recording devices to class to catch up on things I miss when I'm asleep and allow me to play with things in class to keep my self awake.
It is now the end of 2013 and I can say that things have gotten better for me, This year I ended my abusive relationship, and ended up meeting a very lovely guy who makes me happy, joined a sports team and learnt how to play rugby, got myself a job and of course I have passed my second year of occupational therapy. After a long road of struggling I have finally been able to begin sorting my life out and getting back on my feet, and think things can only get better from here
Sunday, 8 December 2013
Job time
Yay
I got a job care giving and doing home support.
I've done two days so far and I'm really enjoying it apart from the early mornings.
I've been getting up at 8 for 9.30 starts, but have to get up at 6.30 tomorrow for an 8am start... ugh i really don't think I can do that. I will probably ignore my alarm, roll over, go back to sleep and be late. not a good start.
Thankfully the shifts are quite short. 8 - 12 tomorrow which i think is managable. i hope
oh well off to sleep for me. I'm feeling quite exhausted. hence the terrible spelling and lack of capital letters
On a side note I am doing well with the not having caffiene. In the last 3 weeks I have had 2 cans of V which is a big improvement on 2 a day. I feel heaps better and healthier.
I got a job care giving and doing home support.
I've done two days so far and I'm really enjoying it apart from the early mornings.
I've been getting up at 8 for 9.30 starts, but have to get up at 6.30 tomorrow for an 8am start... ugh i really don't think I can do that. I will probably ignore my alarm, roll over, go back to sleep and be late. not a good start.
Thankfully the shifts are quite short. 8 - 12 tomorrow which i think is managable. i hope
oh well off to sleep for me. I'm feeling quite exhausted. hence the terrible spelling and lack of capital letters
On a side note I am doing well with the not having caffiene. In the last 3 weeks I have had 2 cans of V which is a big improvement on 2 a day. I feel heaps better and healthier.
Tuesday, 26 November 2013
Holiday Challenge
Yay. exams are over and done with :) which means break time. I am so grateful for a long rest, but have actually begun looking for work.
I've actually set myself a challenge for over the holidays. NO MORE CAFFEINE especially energy drinks cos they are my downfall.
Day 4 now and I haven't had one yet. The first 2 days were terrible. I spent my whole weekend in bed as I did not have the energy to get up. yesterday was great thought. i felt better, had energy and managed to begin tidying my room. I also caught up with a friend who had been away for 6 weeks.
Today was execellent. I got up early and went exercising. Then I walked to the mall to buy a gift for my secret santa and had lunch, got groceries and went home
I think this has been awesome for my health...
But I find myself missing the taste of redbull and really really wanting one :(
I've actually set myself a challenge for over the holidays. NO MORE CAFFEINE especially energy drinks cos they are my downfall.
Day 4 now and I haven't had one yet. The first 2 days were terrible. I spent my whole weekend in bed as I did not have the energy to get up. yesterday was great thought. i felt better, had energy and managed to begin tidying my room. I also caught up with a friend who had been away for 6 weeks.
Today was execellent. I got up early and went exercising. Then I walked to the mall to buy a gift for my secret santa and had lunch, got groceries and went home
I think this has been awesome for my health...
But I find myself missing the taste of redbull and really really wanting one :(
Saturday, 16 November 2013
Just a general whinge about stuff
I hate saturdays with a passion
I know it's my day off and I make so many plans to do so many things.
Today I was meant to go to the library to write my 2500 word essay, its due on tuesday :(. I slept until 11.30am woke up, had a smoke, watched tv and then went out for the afternoon to get lunch (took longer than I thought) got home at 4.30pm had an ice cream and went to sleep until 8pm.
it is now 10.30am and I have managed to write a measly 200 words.
I am so bad at spending my saturdays sleeping :(
I am also very stressed about these upcoming assignments. I have to write an essay, draw a bathroom plan, make a pamphlet about wheelchair usage, administer a writing test, and i have an oral and written exam. all in the next 6 days
I am too stressed to even write my essay :(
My stupid narco brain won't work
and i just wanna go to sleep
I know it's my day off and I make so many plans to do so many things.
Today I was meant to go to the library to write my 2500 word essay, its due on tuesday :(. I slept until 11.30am woke up, had a smoke, watched tv and then went out for the afternoon to get lunch (took longer than I thought) got home at 4.30pm had an ice cream and went to sleep until 8pm.
it is now 10.30am and I have managed to write a measly 200 words.
I am so bad at spending my saturdays sleeping :(
I am also very stressed about these upcoming assignments. I have to write an essay, draw a bathroom plan, make a pamphlet about wheelchair usage, administer a writing test, and i have an oral and written exam. all in the next 6 days
I am too stressed to even write my essay :(
My stupid narco brain won't work
and i just wanna go to sleep
Tuesday, 12 November 2013
sleepy school time
"good morning class, today we are going to be talking about"
"and then make sure the client..."
" remember to bring to bring your rulers to the next lecture. see you all tomorrow"
oh crap I've done it again. It's hard to get an education when your falling asleep in class and missing the content. This is a daily struggle for me though, on my journey to becoming a qualified occupational therapist.
Don't get me wrong, I love occupational therapy and I'm very passionate about it. But surviving 5 days of lectures a week, trying to listen to lecturers, read stuff and take notes while battling with narcolepsy is a full on struggle. some days are ok and everything goes well. somedays i try my best but still manage to end up sleeping on the desk.
its very embarrassing in a class of 80 people.
I missed another class this morning. 8.30 am starts are just to full on especially when the lectures run non-stop until 12. i haven't got the capacity to focus that long. I hate missing lectures, I know they are important to my education and if I could stay awake my grades would benefit. but somedays I physically don't have the energy to get out of bed.
I thought the meds were meant to fix things :( classes are better now, but i still spend the day feeling mentally exhausted with no energy for anything.
each day seems to be the same.
"and then make sure the client..."
" remember to bring to bring your rulers to the next lecture. see you all tomorrow"
oh crap I've done it again. It's hard to get an education when your falling asleep in class and missing the content. This is a daily struggle for me though, on my journey to becoming a qualified occupational therapist.
Don't get me wrong, I love occupational therapy and I'm very passionate about it. But surviving 5 days of lectures a week, trying to listen to lecturers, read stuff and take notes while battling with narcolepsy is a full on struggle. some days are ok and everything goes well. somedays i try my best but still manage to end up sleeping on the desk.
its very embarrassing in a class of 80 people.
I missed another class this morning. 8.30 am starts are just to full on especially when the lectures run non-stop until 12. i haven't got the capacity to focus that long. I hate missing lectures, I know they are important to my education and if I could stay awake my grades would benefit. but somedays I physically don't have the energy to get out of bed.
I thought the meds were meant to fix things :( classes are better now, but i still spend the day feeling mentally exhausted with no energy for anything.
each day seems to be the same.
Monday, 11 November 2013
Dear Diagnosis
This is my first blog, relating to my Narcolepsy and I thought i would start by sharing my Dear Diagnosis letter. I will get better at the blogging thing over time. but here is my first attempt.
Dear Diagnosis
It’s nice to
finally have an explaination for the sleeping in class and not being able to
watch movies. I’m just upset we didn’t find out earlier, I would have been able
to apply for assistance for my physics exams. I’m really gutted I didn’t get
into physics at Uni.
It’s ok though. I
really enjoy studying occupational therapy. It’s very hard though some days. I
feel like I miss a lot of important information when I fall asleep in class
though. Its also very embarrassing in a room of 60 people that I barely know.
I am excited about
finding medication to help me. I hope this helps with my ability to function in
Class. I hope it helps my grades improve. C’s & B’s are great and I’m just
happy I’m passing, but I would love to get an A one day. Here’s hoping.
I am also excited
about the thing’s I’ll be able to do with medication. I hope this means I can
see my friends more and go out more often instead of sleeping my weekends and
spare time away. I want to take up a sport. And go fishing more often.
Well diagnosis I’m
glad I finally found out about you. It’s nice to have an understanding of why
these horrible things are happening to me and I am definitely looking forward
to the treatment, and the new things I will be able to do.
Here’s to a better
future
From Jessie.
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