Tuesday, September 1, 2009

the bad bits

Hypnagogic and hypnapompic hallucinations are associated with narcolepsy and for me, it was frequent hypnapompic hallucinations that first led to suspicions that I had a sleep disorder. When you don't know what they are, these kind of uncontrollable hallucinations are very scary, even when you know what they are, I find that they still leave me very shaken and disoriented.

I first had one when Sausage Boy was a young baby, I thought I was hearing voices and given I was suffering from depression at the time, so did my GP, thankfully my psychiatrist realised they were associated with sleep, though it still took me almost another three years to be diagnosed with narcolepsy.

Unfortunately I do find that if I have one that it really sets me out of whack, I take an hour or more to feel that I've recovered physically and it has often meant that I've had an unintended delayed start to the day, which is what happened this morning, Andrew wanted to see if Sausage Boy could cycle to school, so after feeding Grace at 7, I stayed in bed listening to the radio and at some point I drifted into a state of hallucination. One of the problems I find is that I don't know what is real or what isn't, I don't actually know for certain whether I'm still in that state or not. At one point, I thought I'd get out of bed and mentally that is exactly what I did, but lacking the physical sensation of my feet hitting the floor meant I had a brief sensation of being in free fall. Several times I also thought that Andrew had come in to the room and was interacting with me and I was hoping he'd realise the state I was in and wake me up, only I'd then find he wasn't there, as it turned out he'd gone straight from school to work.

I finally "woke" up at about 9.30, it had been my intention to go to a La Leche League meeting, which would have required me leaving at that point, normally if I wake late, I would just throw my clothes on and go, but as I mentioned, such experiences don't usually leave me feeling like I normally would on waking up. I called Andrew as I wasn't sure if I'd need to pick the bike up etc. Even though I was attempting to have a normal conversation, he quickly picked up on something being not right. I wasn't distressed, but somehow my brain was still not functioning normally and this was evident in my tone of voice and choice of words. I usually feel an intense need for sugar afterwards, I'm not sure whether this is physiological or psychological, but I gave into it and had some chocolate along with a cup of tea.

I hope this gives an insight into living with narcolepsy.

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