It feels like I'm in limbo at the moment. I'm stuck in my flat and living a sort of non-existence at the moment, waiting for the council to finish assessing my housing application so I can be moved and waiting for my GP to find some way of sourcing me a wheelchair that has some sort of stabiliser to stop me from lurching my way backwards and further into head-injury land.
My symptoms have definitely improved a bit, that much is evident.
I had the usual obsessions I get with times like this, things like "what if it's dying down and I don't know about it because of the meds" - but that was put to bed when I missed a dose by about four or five hours last week and had my first major tic attack since I left hospital.
It's a confusing place to be, I feel like I'm in stasis, the symptoms have improved to a point where my tics are still severe, they are still limiting well... just about every aspect of my life. But I've lost all real basis for comparison, it's like I'm forgetting how bad I am because it's constantly there.
Another weird trade-off seems to be that as the tics have become less constant - in terms of tics per minute, which now actually varies again instead of being constantly bad all of the time - they seem to still be very, very violent. At times they more violent than they were before! I'm finding myself slamming backwards very hard when I hyperextend, banging my teeth together with seemingly endless amounts of force, hitting myself in the forehead and the throat harder, the list goes on.
But that's where it has stopped - things have stayed here for a while now. No significant improvements, no significant worsening. I can keep myself mostly calm if I stay in the flat, or my occasional assisted visits to friends houses in the evenings, but my occasional attempts at getting out and doing other things have meant me meeting the realisation that I am still considerably worse than I think head on. Not to mention the seemingly endless calls to the DWP, CAB, HMRC etc etc ad nauseum... which always set me off.
I think that's the most confusing thing at the moment, having lost that basis for comparison that I mentioned, I seem to have lost all of my ways of telling if how bad things really are, it's confusing - I actually seem to have gotten used to things being this bad very quickly. I just need to keep reminding myself that OCD aside - yes, the meds are working. They definitely are doing their job. Stop questioning it and obsessing over it constantly! Stupid Alex! But there's the flip side of that as well - the fact that feel like I'm forever wading through a sea of mental treacle trying to think through the haze of Diazepam, Baclofen and the co-codamol I have been given for the pain. That probably isn't helping with the general feeling of confusion. The other thing I'm obsessing about is still worrying about becoming addicted to the first and last ones mentioned there, I have never had to take so much Diazepam every day for so long! Not at this dose!
Even with my helmet I am still suffering constant headaches from banging my head. My back arching and the "axial drops" (I still don't know if that's the correct term, it is what was on my discharge summary from the hospital) are still preventing me actually standing for more than a second or two before I'm driving my knees into the floor.
I also am so used to putting on the happy face and pretending that everything is AOK that I fool myself sometimes, I forget how closely I feel like I am skirting madness at the moment until some tiny thing pushes me over the edge and I find all of my hastily built dams collapsing and the inevitable wave of hopelessness and depression washing over me.
Ok this post is going nowhere and to be honest... I don't even think it has an overriding point to it. I feel like it has gone around in circles, but still, I'm going to post it. Here, three or more (I have no idea anymore) months in to the worst waxing episode of my life yet, this is what's going on in my head.