Thought I’d give this one a flippant title. I am terrified though! Even though I am constantly reassured that any data is good data, I genuinely worry about affecting the results somehow!
Another worry for me is that this period of a few days where it was switched on and had a calming effect might have a lasting effect on the general waning status of the tics at the moment. This seemed to happen before with a medication – I was on it for a few months (starting when I was very bad) and when I came off of it, kept the calmness. Seeing that in text makes me realise how stupid it is, but I still worry. Worry worry worry!! *facepalm*
Today the stimulation was “randomised” again. This means that it is now either off (if I am going to be off for three months) or turned down from this morning’s setting (which was a very, very nice setting!). It was explained to me that if it was left on it would be on a lowered setting – for fairly obvious reasons it can’t be made too blatant to me that it’s on. Then there would be no point in the blinding in the trial!
I do understand why this is a necessary part of the process, I just wish that there was a better way of doing it! The DBS team have have handled this really sensitively and tried to reassure me at every turn, which is nice. Doesn’t help the obsessive thoughts though!
I might choose not to post again about the DBS for a few months (not that anyone can see these posts yet anyway!) because I am genuinely trying very hard not to think about whether it is on or off. Just going to do my best to go about my normal life and play it by ear.
Really hope that this can help towards get this treatment approved and funded by the NHS and in turn help others!