The White Bear

The end of the first three months of the trial is approaching!  That means that I will go in for a few days for the usual battery of tests, possibly have another screening and then I will go away for the final part of the trial.  During the final part the state of the stimulation will be reversed – so if, for example, it is on now – it will be switched off.

I have been trying incredibly hard not to think about the trial or the status of the stimulation since the start, but along with anxiety about affecting the results etc (even though I have consistently been told by the DBS team not to worry about this) and other general obsessions/intrusive thoughts that has been very difficult.  I completely understand why it has to be done like this, but in this case understanding does not necessarily make the problem any easier to deal with!  I have had to be in the dark from day one!

Since the operation things have calmed down – especially in comparison to how things were beforehand.  Since my last adjustment things have waned a lot – I am really calm when I am inside compared to before and outside I am the best I have been in months!  Don’t get me wrong, there hasn’t been some magical turnaround moment, I’m still unable to make food, handle hot things without burning myself, handle sharp objects without hurting myself or walk.  But the general intensity has been decreasing!  It could be a natural wane in symptoms though.

There lies the source of my current anxiety.  On top of the usual anxieties and intrusive thoughts, I have the added question that if it does turn out that I’m switched on right now and the stimulation is causing this drop in symptoms – what is it going to be like if I go away from London after to start the second part of the trial and I end up switched off?  The main thing I’m worried about is an abrupt return to anything close to the levels pre-op.  Not only would that mean three months of a return to that horrible place – I have had a few close calls already on damaging the chest unit.  As it stands it has moved slightly and the corner constantly presses against the underneath of my skin!  I am still waiting for my body to get use to that, but at the moment it hurts whenever I hyper-extend backward.

Trying not to think about it but this situation is making me think of the “white bear problem” – OK, stop what you are doing.  Do not think about a white bear.  Kinda hard not to think about a white bear isn’t it?


About unexpectedmonkeys

My name is Al, I was diagnosed with Tourette’s Syndrome in my mid teens and it has definitely not improved with time! I’ve discovered how interesting it can make life but I’ve always tried to keep a positive attitude and keep moving forwards.

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  1. Deep Brain Stimulation posts published! | Unexpected Monkeys - May 18, 2015

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