I sometimes wonder what i must look like,from the outside ,when i'm having an 'episode'.Though i have to be careful not to let my curiosity get the better of me or i fear i may never leave the house again. I,ve just come round after spending the last three quarters of an hour trying to unsuccessfully stay awake. I was desperatly trying to watch the end of a film but although i think i managed to see most of it it was through a haze of semi consciousness. I was trying to move , to pick up the remote control as i needed to turn the volume down to work out if the sounds i was hearing really were M calling me, or if it was just my brain playing tricks. I couldn't pick it up though because i couldn't move, even though it was on the floor next to me. This must've lasted about three quarters of an hour, then i just suddenly came out of it. And i know the sensible thing would be to now go to bed but i need to clear my head first, get rid of the confusing blur

I just can't get used to using the word 'disabled' to descibe myself. Its such a loaded concept, i always feel like i'm lying when i say it. Which i don't very often. As little as is possible in fact. It's mostly been avoidable, partly through denial but it has become neccessary to claim myself as such (or do i mean 'admit'?) in order that i get to sit my exams at home. If i didn't do so i would have to get on a train , where i would immediatly fall asleep, then if i was fortunate enough not to miss my stop, arrive at the exam hall dazed and confused and tired before sitting down in a warm, quiet room whereby it would probably take me less than half an hour before i fell asleep again, previous to which i would have gotten extremely tired, unsuccessfully tried to fight it and gone in to 'automatic behaviour' which would involve me writing all kinds of nonsense whilst falling asleep. So it seemed like the best idea.Although i did still have to think about it for some time beforehand ,such is my pathetic fear of 'labelling'.
I've just had to phone up the Disabled Students Office to find out about an assessment and i still feel like i am talking about someone else .Someone who really is disabled. Perhaps if i hyphenated the word i could relate to it better. Dis-abled. Seems somehow more appropriate.

So its ,narcoleptic Sunday again.I don't remember the last time i had a Sunday evening without being reminded that neither my brain nor body are of 'normal' functioning.I have no explanation for this, as to why i always have these episodes on Sundays or to why they differ from the other days. Generally, i suddenly get overwhelmingly tired, painfully so. I become so exhausted, so overcome with the need for sleep that at that point there is nothing i would trade in for it(should a situation ever occur where i was given that option..) "On this side we have a million pounds and Brad Pitt, on the other , sleep time.." There is no question as to where i would go, and i'm not about to be able to buy all the shoes i want .(Brad Pitt was a bad example as lovely as he is, hes just not my thing but i couldn't actually think of anyone i actually did fancy at that point. Yes, there is a delete button on my computer but this is all about allowing my thoughts as they come, pretty much how i always write really). But i'm digessing slightly. The usual overwhelming need to sleep is always accompanied by my trying to fight it. I think i have become so used to doing this over the years, in situations where it has been neccessary, that my brain kicks in to action almost automatically. Even if i am in a position where i could actually have a sleep , i try to fight it. The fact i also do this when it happens late at night, when M is in bed is evidence that there is little logic involved. And i never win anyway. Sundays are different though, i usually start off a bit cataplexic which soon turns into sleep paralysis. I feel my body gradually becoming paralysed, aware that i would be unable to move should i need to. The last thing to go tends to be my eyelids, but even when i become unable to keep them open my brain still isn't shut down as i am still able to hear , so tv becomes like radio until eventually i shut down completely. Often in the stage between my eyes closing and finally falling asleep i start hearing things which aren't really there, a kind of aural hallucination i guess. Hence the name 'narcoleptic Sunday'.

I've just woken up on the armchair so i'm feeling a bit vague. I think i must've been asleep for about three hours. Its always confusing ,waking up after suddenly falling asleep, trying to work out how long i was out for, if i recall knowing i was about to sleep and what was i doing immediatly before.
I'm not going to start documenting every time i fall asleep, that would be ridiculous as well as making a whole load of work for myself.I think if i did i would be horrified. Obviously i am fully aware of my 'sleep issues' but i have to try not to think about it all too much. In a way that of course thats not possible, my whole life is dictated by this condition and it is neccessary that i consider it in everything i do. But it needs to reside at the back of my mind, not up in front. As something i am quietly aware of but not emotionally overwhelmed by. The thing is , if i actually allowed myself to really consider just how much of my life i have lost and will continue to lose through narcolepsy, the humiliation and frustration of suddenly falling asleep, the impact it has on my daughters life, i don't honestly know if i would be able to cope. Now i've admitted that it won't be said again.

So someone at the job centre actually did what he said he would and my giro has just arrived at last. Part of me feels i shouldn't complain because it's all sorted now, so what's the point in dredging through it all? Right now i am just relieved that i can actually get some money in my purse, or rather, pay the car tax, pay for school trip, pay for cubs and so on. And i feel enormous gratitude for the man i spoke to who got it sorted out and sent to me. Whenever this occurs, that someone is kind and helpful, i always want to thank them but i know if i called the job centre to do this they would just think i was wierd. Probably stop my benefits on the grounds that if i was so pleased to get - what is technically- a small amount of money , i probably didn't need it. Thats one thing i have learnt over the years, if you appear too grateful or not self pitying enough they will assume something is amiss. I once made the unfortunate mistake of responding to self important, patronising benefits 'advisor' (i use that term loosely), who informed me that my life was terrible , that i actually felt myself lucky as i had a roof over my head and didn't live in a war torn country. My benefits were stopped.

The title of this post comes from the way i would most hate to see myself described, yet the way i see myself sometimes. How i imagine the Daily Mail would depict me.
I have had narcolepsy more than half my life and it has totally dictated how i live, yet i could count on one hand the number of people aware of this , and that includes my doctor. i would rather be seen as a bit crap, a bit lazy than be labelled as someone with a medical condition. Which is pathetic, i know.It is something that troubles me constantly, and goes against all other elements of my personality. I am always the one who 'has to be different'. Thinking back to my teenage years i guess ther was an element of intention in this, of rebellion, but then i never wanted to be like everyone else when i was a kid. Now though, i have come to believe it is an intrinsic part of me. So my fear of being seen as narcoleptic is in contrast with the rest of my psyche. I am an intensly private person. Perhaps because of all of the above, although when i think of my family that pretty much describes us all. As such, writing about myself like this is a somewhat strange and perhaps therapeutic act. I am hoping it might be anyway. Sometimes i think i would be better off if i 'engaged' with my condition more but then i go through phases of researching it on the internet and become saturated.
The fact i live off benefit kills me everyday. i am hugely ashamed and enormously grateful. Unfortunatly this makes me an easy target to be messed around by 'the system'. And believe me, i have been.
My daughter is the centre of my world. I try so hard to be the best i can for her, yet being a 'narcoleptic benefits slut' and single parent (inevitably..), i constantly disappoint myself.
Overall i am incredibly grateful. So my life could be better, whos couldn't Whats more important is the overwhelming knowledge that it could be a hell of a lot worse.