Unfortunately, I don't think my experience with sleep/respiratory medicine specialists is unique. Of the people I've talked to, especially in Sydney, about narcolepsy and how to manage it, all of them have commented about how frustrating their doctors are. At the very least mine took me seriously (I know of people whose doctors have just put their sleepiness down to basically any other excuse except attempting to diagnose the ACTUAL problem) but I'm now at the stage where I have the diagnosis and I do reasonably well on the drugs, but I have peripheral problems which my specialist is unwilling to examine or take into account, instead associating it with other medical issues.
Basically, I'm coping pretty well (damn sight better than last year) but.... I'm not great. And I don't know how much of my current mental/physical state is just to do with having narcolepsy, or if it's something I can act on. My biggest frustration is my focus and my inconsistent cognitive abilities. I would say that, normally, I am intelligent, I can effectively maintain and contribute to a conversation, I'm reasonable, I can hear properly and I am not all that easily distracted. However, more often than not, I find myself:
- irritable (occasionally irrationally so, particular when I'm teaching)
- unable to process what I hear (meaning I ask people repeat things, sometimes 3 or 4 times, or I find myself having to deduce the meaning of a conversation by the little snippets I have actually heard, rather than just processing it in real time)
- having difficulty playing music. This is the MOST irritating thing. I'm a good musician. Not great, not solo quality, but pretty good. My sight-reading skills are ridiculously awesome, and my experience in musical theatre means I have the ability to pick up music pretty quickly after playing through it once or twice - an extremely handy skill to have when playing symphonies etc. Thus it makes me incredibly annoyed when I find myself doing stupid stuff, like miscounting rests, unable to figure out a simple rhythm in a bar, having my fingers splay everywhere as I try to play a slightly complicated passage. When I have trouble playing something difficult, I put it down to lack of practice, but it's missing all the easy things that really makes me annoyed and worried.
They're the three biggest things that worry me. I tried to communicate this to my specialist, but her answer (this time and the last time I brought it up) was that, basically, errors in cognitive functioning aren't related to narcolepsy, they're related to my depression/drugs for that, whatever.
Now... yes, I know she's the doctor. But really... surely a condition that is due to a malfunctioning element of the brain, which negatively affects the sleep process, would surely then in turn have some kind of negative/adverse effect on cognitive functioning? It is well established that the period of sleep for humans is the time when the brain rejuvenates - it reconciles memories, rests, clarifies etc. If narcolepsy means that the normal human sleep process is disrupted/changed, wouldn't that therefore lead to cognitive/behavioural modifications during waking hours? That's my logic, but according the doctor, no. That's not the case. Somehow I just find that hard to accept. But it means that, if my logic is right and the narcolepsy is affecting me in this way, then I still need to change some things about how I'm handling it, in order to make my waking life a little more... normal.