So it’s here! And I’m not procrastinating (well, much anyways) about writing a post about it! I have finally hit the half-way point in the trial! Only three months more to go and then they can start actually treating me – which honestly can’t come soon enough.
So I guess it’s best to give a basic run-down on what’s gone on so far – arrived midday on Tuesday, went through all of the usual tests (memory, YGTSS, the annoying one where I have to touch blocks in a specific sequence etc). By the time we had finished doing that there wasn’t enough time to do any settings changes so I went back to the hotel (no hospital bed this time, but at least it meant I got to spend some time with Holly!) and met up with some friends from the internet. My tics were better than they have been on any visit to London before at that point anyway!
On Wednesday, they started to play with the device settings. This has been my favourite part of the process so far! No blinding for this part – I’m allowed a short break from the head-screwing and know it is on while they play with different settings and voltages. That was yesterday, they pushed one setting as far as my brain would take it (started to get a bit too drowsy with no real impact on the tics with the last adjustment so I asked them to dial it back a bit!) – but this setting is amazing! I can’t quite let myself feel proud about it, because it isn’t me doing it – but I was so happy that I could wheel around busy London streets with Holly and not be having attacks or kicking/injuring tourists (although I did accidentally back my chair against one lady, who got in a right mood even though I apologised profusely!).
The only unfortunate part of the process was that last night I fell asleep at around ten, as I was incredibly drowsy (I do find that I end up very drowsy after stimulation changes quite often – apparently a normal side effect) and woke up at *drum roll* 4am.
It does feel so weird, I just ticced and although I don’t really notice them that much anymore – I think that was my first twitch for well over a minute at least! I feel naked… but in a nice way! It’s sort of like having an annoying “friend” around for years shouting in your ear and then suddenly they are gone. Sorta feels a bit strange without them there, but at the same time it’s so relieving!
On to today! Today we’re going to try a few different configurations and settings today, so possibly a little more intensive! Will try to remember to write another blog post – but no idea if I will remember (or just spend a week or two procrastinating as usual).
On a slightly more serious note though, I am still incredibly nervous, scratch that terrified, about the switching over tomorrow! If I was on before, I will go away off and vice versa. Really not looking forwards to that.
Fingers crossed that I’m going away switched on!