Yesterday I had reprogramming. I hope it’s gone well, I’ll hopefully know in a few days once my nerves settle down. We’ve set up a new programme, which has 3 programmes (locations) running within. One from the back of my head up over the top, for the greater occipital nerve, one from behind the ear to the top of the ear to cover the lower occipital nerve and a third along my jaw. This tracks my trigeminal nerve to cover my face pain. The first two locations are the targeted areas of my previous programming, but are set up using a slightly different part of the nerve for the same effect. The thought behind this is that my nerves are sensitive and either get used to stimulation easily, or get overstimulated. So I will run this new one for a few weeks, or until it’s not effective, and then switch to the old programme. I will keep repeating this pattern in an effort to keep the nerve ‘guessing’ and to stop overstimulation. So I’ll have to give it a couple of months so we have a chance of seeing if this works.
I also spoke to my surgeons registrar Tuesday and following his advice the doc I saw last week has put a referral in for a CT of the lumbar spine and head. MRI is a firm no with the implant being in my head because of the high risk associated with the metal I now have vs the magnets of the machine. So CT is the only option. She’s also referring me to my old neurologist so she’s in the loop and can give her input on the scan results and next steps. She’s certain that ‘we’re clearly looking at a nerve issue here’ so hopefully the scans can show what’s going on and how to move forward. In light of this, I’m going to ask to postpone my appointment with the rheumatology physio next week, where she wants to discuss ‘what is pain’. Aside from it sounding like a monumental waste of my time, I think it would be an even bigger waste until we know what we’re trying to treat/manage.
So a lots happened in a few days and I’m quite exhausted now. And in pain. So much pain. Interestingly today my HC switched sides and stayed that way for 12 hours which is rare for me. It happens, but normally for an hour or two. This was all day and it felt like sheet lightening in my head, followed by a pick axe to the temple. This was actually how my HC started, 30 seconds of this severe pain. I genuinely thought I might have an aneurism first thing. So it was an absolute delight when I had to drive to Bristol and back. But that’s just the way the dice roll sometimes.
Otherwise there’s not a lot to report. I passed another unit of my safeguarding course and I managed to see all my friends between Friday and Monday which was lovely. I’m of course paying the price, but with all these things going on I just haven’t been able to switch off and rest. I just feel wired and find myself constantly reaching for my phone or food for a distraction. So I decided seeing everyone was a good idea and I honestly have no regrets. I needed to see them all and feel normal for a few hours while all this absolutely abnormal (for a 30 year old) shit is going on.
I’ve let a lot slip the last week or two. Well the last few months if I’m being completely honest. I’ve had so much on or to deal with that I just haven’t been able to see my friends as often as I, or they, would like. But I also feel I haven’t been able to contribute to my volunteering as much as I normally would. And as some will have noticed I’ve not even had anything in me to do much writing, which is my strongest ally when it comes to maintaining my MH. Without writing I am not truly processing life, I merely come to write updates. But I seem to have lost the spark where it comes to writing to just clear the mind. The sort of writing I never thought about. I now seem to have too much in my head that I can’t for the life of me identify one thing to start writing about. So I wrote another update instead!
I suppose an update is a good place to start decluttering. I wrote the above last night and today I’m feeling awful, but I finally feel like I can post this and just rest for the day. So an ‘update’ after getting things organised and my reprogramming done seems to have done the trick.
HC & Me 