Diagnosed with Narcolepsy 3 months before GCSE Exams Watch

JWilliams01
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Yo, My name is Jack

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I only made this account to vent but ill read any replies, and maybe respond if anyone has questions about it :)



I WAS a very bright student who was predicted many grade 7's and A's in year 10 and 9 but in the last few months (from January) my grades have gone skydiving to the point where i'm barely passing exams, and still are on the decline, due to my rather unexpected diagnosis of the sleeping disorder Narcolepsy.

The amount of school i missed and still do miss is astronomical, and unfortunately there is not enough time left to make up for all that lost work at home, ive had to drop Economics and ICT in order to focus on my core subjects, where even still i got dropped to Double Science as i missed ALL of unit 3 in Chemistry, Biology and Physics

Due to all of the afore mentioned, my motivation levels have dropped significantly, i find it hard to even get out of the bed in the morning as it's a "whats the point situation" im never going to achieve as i should have, so why should i bother, knowing im always gonna be seen as a failure.

Also, the sheer ignorance what Narcolepsy even is, and how people can just tell me to stop being lazy, really infuriates/upsets me with that person and the world, as in fact it is a disorder as common as Multiple Sclerosis (about 1 in 2,000 in the UK are effected)
It also seems like Nobody, not even the doctors are able to sympathise with how much this actually affects me, and im guessing all the other people, suffering from this very debilitating disorder.

In order to purge the ignorance of Narcolepsy, and even just inform some of you fellow students of the science behind Narcolepsy or if anyone is just curious about it, im open to reply to any comments left, and will try my best to help you to understand, as it will help the world to realise, what it is in its entirety .
Thank you,
Jack
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chelseadagg3r
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(Original post by JWilliams01)
Yo, My name is Jack

Spoiler:
Show



I only made this account to vent but ill read any replies, and maybe respond if anyone has questions about it




I WAS a very bright student who was predicted many grade 7's and A's in year 10 and 9 but in the last few months (from January) my grades have gone skydiving to the point where i'm barely passing exams, and still are on the decline, due to my rather unexpected diagnosis of the sleeping disorder Narcolepsy.

The amount of school i missed and still do miss is astronomical, and unfortunately there is not enough time left to make up for all that lost work at home, ive had to drop Economics and ICT in order to focus on my core subjects, where even still i got dropped to Double Science as i missed ALL of unit 3 in Chemistry, Biology and Physics

Due to all of the afore mentioned, my motivation levels have dropped significantly, i find it hard to even get out of the bed in the morning as it's a "whats the point situation" im never going to achieve as i should have, so why should i bother, knowing im always gonna be seen as a failure.

Also, the sheer ignorance what Narcolepsy even is, and how people can just tell me to stop being lazy, really infuriates/upsets me with that person and the world, as in fact it is a disorder as common as Multiple Sclerosis (about 1 in 2,000 in the UK are effected)
It also seems like Nobody, not even the doctors are able to sympathise with how much this actually affects me, and im guessing all the other people, suffering from this very debilitating disorder.

In order to purge the ignorance of Narcolepsy, and even just inform some of you fellow students of the science behind Narcolepsy or if anyone is just curious about it, im open to reply to any comments left, and will try my best to help you to understand, as it will help the world to realise, what it is in its entirety .
Thank you,
Jack
I'm really sorry to hear this, Jack I can sympathise in a way, because I was diagnosed with Chronic Fatigue Syndrome while in school and it got particularly severe, even leaving me housebound for a few months, in my final year of school and GCSEs, meaning I also had to drop subjects and didn't do as well as I used to be capable of.

My advice though, is to try and push your school into discussing exceptional circumstances with you with regard to any exams or coursework. It can help get your grades up a little by understanding that you aren't performing to your best and usual ability because of such an awful thing.

It's really great to see that you want to educate others about your condition. I know I just wanted to crawl into a ditch and hide there, so it's really brave of you. Maybe you could make a little handout or something to give to your teachers and friends at school? I made gathered some information specific to my condition, including a copy of 'the spoon theory', and forced them all to read it. I felt really stupid at the time, but it helped people understand and empathise a lot better.

I know you're not lazy, and don't ever let people push you into thinking that. Even if no one else wants to believe you sometimes, just stand your ground. You are trying and persevering, and that's what really matters.

I already know a fair bit about it, having almost been diagnosed with it myself, though of course don't know how it feels to have it. How would you describe it to someone who doesn't have it? Are there any other feelings people might be able to relate to that you feel in a magnified and more constant way?
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JWilliams01
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(Original post by chelseadagg3r)
I'm really sorry to hear this, Jack I can sympathise in a way, because I was diagnosed with Chronic Fatigue Syndrome while in school and it got particularly severe, even leaving me housebound for a few months, in my final year of school and GCSEs, meaning I also had to drop subjects and didn't do as well as I used to be capable of.

My advice though, is to try and push your school into discussing exceptional circumstances with you with regard to any exams or coursework. It can help get your grades up a little by understanding that you aren't performing to your best and usual ability because of such an awful thing.

It's really great to see that you want to educate others about your condition. I know I just wanted to crawl into a ditch and hide there, so it's really brave of you. Maybe you could make a little handout or something to give to your teachers and friends at school? I made gathered some information specific to my condition, including a copy of 'the spoon theory', and forced them all to read it. I felt really stupid at the time, but it helped people understand and empathise a lot better.

I know you're not lazy, and don't ever let people push you into thinking that. Even if no one else wants to believe you sometimes, just stand your ground. You are trying and persevering, and that's what really matters.

I already know a fair bit about it, having almost been diagnosed with it myself, though of course don't know how it feels to have it. How would you describe it to someone who doesn't have it? Are there any other feelings people might be able to relate to that you feel in a magnified and more constant way?
I am so sorry for the late reply ive been terribly busy the last few days, Yeah i know myself im not lazy, its just sad people close to me, even like my girlfriend cant understand that, even while taking medication, getting up in the mornings/staying awake is a whole bunch harder than it was around a year ago.

Well, to describe it is quite hard, its a feeling i had never felt before these episodes of EDS started to happen around October 2016, but id guess the easiest way is to say, you'll be sitting down (only happens for me when in a resting state so while standing im usually fine) and an absolute wall of exhaustion hits you, like you havent slept in years, consequently you start battling with your body which is trying to force you to sleep, and nearly every time the urge to sleep overcomes you so you just basically fall asleep, not matter what im doing, i cant stop it, just postpone it.
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lalala1122
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Hey Jack, I know this is kind of late but i am just being diagnosed rn and kind of just want to talk to someone who actually understands what I'm going through. (Just started my A-levels btw, pretty sure we r in the same year). I have my sleep examination v soon to confirm, but i pretty much 100% have narcolepsy.I'm pretty sure I first got it at the end of 1st year of GCSEs. It didn't affect me too badly in GCSEs as the symptoms were only quite mild then. It's definitely got worse this year and it and is making me feel kind of ****. Just wondering how bad yours is and what symptoms you have? As you said, not many people really get how annoying it is or understand. I've been in most my lessons but have missed a lot it (sleep attacks), and am constantly tired. I don't now about u but my memory is also getting kind of bad and i feel it is related. Idek but I completely get the feeling of just being so done with it all - I'm kind of worried about my A-levels, as like u I used to be an A*/A student (not any more!). And yeah pretty sure everyone just thinks I'm lazy and rude... dot think they will ever get it properly.
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