As frustrating as it is tonight, the insomnia is actually getting better. I'm now on half the dose I was when I started and tomorrow (well, today) I'm dropping again to be on almost a quarter. I've noticed that the sleeplessness is becoming more intermittent - last night I slept soundly the whole time and apparently even managed some twitching, something I haven't done for a while. I've also had a few more day naps, which have been good. And I guess it is good that I'm now finding I have a whole lot of time, albeit at fairly odd hours, to just do a whole lot of stuff. Like update my blog! And clean, write stuff, organise... The house hasn't looked this neat since probably the last January holidays.
But I'm still very much looking forward to being my non-prednisone self. I have really not enjoyed constantly feeling jumpy and shaky, like I'm on a high. It's how I felt when I was on dexamphetamine and I didn't like it. I haven't enjoyed feeling my heart pumping like it's about to explode out of my chest. I haven't enjoyed feeling like everything is moving too slow - I've also found myself having to stop and listen while I'm teaching or in conversation with someone because I've realised I've been talking at a million miles an hour.
I guess that, for me, an effective treatment for narcolepsy would mean not just taking something that would keep me awake, keep me stimulated. I can see why that might be the most important thing for some people, but for me it's not. I want to be awake, sure, but not at the cost of who I am, or my cognitive function, or my creativity. I've found these last few weeks I've been incredibly organised but so... Basic, even uninspired. My ideas for music lessons have come straight out of teaching books and I've actually been dreading teaching a little, particularly kindergarten (they're a tough bunch to handle) because I've felt like I'm basically heading into the classroom with nothing but a blueprint to go off, without any idea of whether it will actually become what I think it will. I don't like that feeling at all.
On a side note, one of my readers sent me some info a few weeks ago about a narcolepsy study they were doing at the Woolcock Institute in Sydney. I went in on Monday and volunteered some if my blood, which will be sent off to the US along with about 2000 other samples where researchers will be looking for bio markers in the blood that could indicate a particular gene or protein associated with narcolepsy. The theory that narcolepsy is an autoimmune disease seems to be gaining traction, too, so it's all working towards something positive. The doctor said they still needed one or two more samples, so if you're in the Sydney area, give the institute a call and see if they still need volunteers! Do your bit for sleepy science.