somehow, i still can't get rid of depression - and pain.  had a very bad narcolepsy attacks for the last three days: i just freeze suddenly, and next thing i know it's maybe 15 minutes or maybe 4 hours later...  i learnt to recognise the first symptoms of when it's likely to come, so if i'm driving, i can estimate whether i have time to get back home, or it would be safer to pull in and sleep till i wake up.  but the driving is likely to go in the next few months - unless the neurologist (i have an appointment for 5th september) finds a way to keep me more alert and helps me regain the balance, because it's pretty bad...

Maurice said yesterday that i looked great.  i know he meant well - but whenever i hear something like this i want to scream 'it doesn't bloody matter how i look, my illness is invisible but it's killing me anyway!'.  on that note, i suddenly remembered a song i used to sing years ago: 'it's so funny to be dying when all you want is to live / [...] how funny it is to thing about something / and know you lack the words / to jump without warning from the sunlight / into the darkness of a laughing moon / it's amusing to want and not be able to / or be able but don't want / [...] / don't die yet, Pinokio / try to be through another night' - how well i understand these words now...  it's not that i want to live at all cost (in fact, the worse the pain, the more often i start to think how much longer would i be able to withstand it - and what for: there is no cure anyway, and my life is getting more and more difficult by the day, i'm becoming dependant on others with even the easiest tasks like cooking for just one person, ironing, shopping, cleaning, showering, getting dressed - and those who know me well from my 'normal' times know, that i was always fiercely independent, moving with a speed of light, doing everything i could and more - but what is left of the former me is the name and the outer body, because the inside of my body is all fecked up).  there is so many things i 'want but am not able to'.

Laura recently asked me, if there is anything on my bucket-list that i still might be able to do, but am likely not to be able to sometime soon.  it was the most unexpected, yet the most understanding and caring question anybody had asked me since i got ill.  it showed me the care, the respect for me as a still-valid human being.  the illness strips this validation off the person, and more and more often i became just an invalid, not a 'normal person' any more.  and it hurts...