Out of Balance

Yesterday I had an appointment with a Neuro-Psychiatrist to discuss stuff with regards to the upcoming surgery. I usually find those sorts of visits stressful anyway but to make things a bit more difficult the original letter asking me to make an appointment never arrived – so my first letter was one telling me I had seven days to make an appointment or I wouldn’t be seen.  The short notice (this was late last week) so I didn’t have time to arrange for someone to accompany me.

My tics were pretty bad – as expected in those sorts of situations, not extreme by the standards of a few months ago, but still bad enough for me to feel all out of balance today.  I always find that it’s the same after an emotionally draining day where I have been extremely twitchy.  It’s not just the aches (I feel like I got beaten up by someone – technically I guess I did but it was by myself) and the pain in my head.  I also find that I seem to be devoid of happy chemicals in my brain.  I feel completely flat.  Everything seems to be making me feel a down and all I want to do is crawl back into bed and sleep the day away but I can’t because then I would probably have even more trouble getting to sleep tonight!  I was told years ago that when I have an extended “attack” like that – although I would just call that one a bad day in general, it was a bit long to be an attack in my mind – that apparently it can throw a lot of brain chemicals out of sync which is why some people experience a definite “low” afterwards.  How much truth is in that I don’t know – it was a long time ago that I was told that.  I’d be interested to know if other people find this as well – I do get this quite often if I have a very bad day.

The amount of meds it took to keep me in a state where I wasn’t hurting myself too severely has probably contributed to the general lifeless feeling, for the first time in a while I almost hit my top dose of Diazepam yesterday (I took 25mg over the course of the day).  Not to mention the co-codamol, I had to take the full dose yesterday to quell the pain and try to stop the feeling that my head was going to close in on itself.  It wasn’t just the tics directly either – unfortunately the wheelchair in the Patient Transport vehicle wasn’t really designed for people with tic-type issues, so every time I hyper extended backwards I drove my shoulder into a bar which poked up at the top of the chair – so now the joint is painful and the movement feels impeded.

The meeting went fairly well, it was just discussing my (rather tangled) medical history and in their words “making sure that they could look after me properly while I was under their care”.  Which makes sense I guess, it’s nice that they seem to be covering all bases.  Not really much else I can say about it to be honest, I always feel a little bit unsure meeting new Psychiatrist-type people as you don’t really walk away with a result as such.  She seemed like a friendly enough lady though and also seemed very interested in treating my OCD after the surgery – which I politely semi-declined as I have made a lot of progress working through those issues on my own and it has given me a sense of achievement and pride.

I am so lifeless today I couldn’t even summon the energy to be properly angry at Arriva Patient Transport when I phoned them to complain.  Although I did get an apology, the complaint is being made official and apparently a note will hopefully be added to my record with them to make sure that it doesn’t happen again.  (Bearing in mind this is the second screw up with Patient Transport recently!)

To cut a long story short my appointment was at 2.  I was originally told to be ready for 9.30-10am, which made sense (the journey never takes less than 3 hours from home to there).  When I called on the day at 10am because I had heard nothing I was told that the crew would be with me for 10.30.  Still OK, although I told them that much later and they would be pushing it, from experience.   To which I was told “no, we have time estimates we know what the journey time will be”.  Then I was told that actually the crew were going *on duty* at 10.30, and they didn’t reach me until 12.  We reached the Hospital in London at nearly 4pm – meaning that as a result although they were still able to see me, my appointment had to be cut down in time considerably.

The funny side (kinda) is that I broke yet another stretcher due to my back slamming tic (that makes two now) and another wheelchair footplate (again with the two).  My friends told me that I should keep some sort of kill card!  He’s not wrong…  So involuntarily destructive at the moment!  Medical equipment, the towel rack at a friends house, my toes, various bits and pieces of my flat!  If I start keeping score at this point I’m going to be winning.  Not quite sure at what, but surely winning is winning right?

I’m going to give up on the rambling now, apologies for the probably quite drab and depressing post I’ll do better next time.


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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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