Been Sara’s Birthday weekend sadly she has been stuck down with Man Flu! And joking aside has been very unwell we did go for a birthday meal, and such but it’s been a miserable few days! We where supposed to go to a 40th birthday party as well which just didn’t happen.
But moving on to ME! It’s the 3rd rehab day, and a very positive one, met my KeyWorker who has given feedback from some of the tests, and what they have found. I also have been tested on emotional responses ie could I work out what people where thinking?
Possibly most interesting and terrifying was the Physio who has had a quick test, and found the weakness, in my leg foot and tracking of my eyes. There is talk of the doing the Epley manoeuvre which I’m guessing will not be fun! Physio is always vaguely terrifying since they do push to the point of failure ie falling. It requires a leap of faith, that the young woman can and will catch you! We shall see if it can improve my balance which is very poor in low light.
Had only a half day at hospital this week, since my KeyWorker was ill, which was a shame, hopefully just a cold etc? But on the other hand it means I get to rest, which I haven’t managed much of, and very tired at moment.
Been quite amused, that I have a KeyWorker since in work I normally am one for others.
Had been rather anxious, about this, the 1st week of the 4 week program, 4 Wednesdays in a row. Mainly because I wasn’t sure what was going to happen.
It’s been quite good day, I’ve been introduced to a Occupational Therapist, two Psychologists and a speech and language therapist. I have also got the results from the cognitive testing they did, my attention/working memory wasn’t that bad, which I had expected to do poorly, but rather my processing speed was quite poor. Few other bits and bobs, and as expected my visual memory tests I was in the top 5% which is as I’d expected/hoped since this was what I scored before in the dyslexic tests some 30+ years earlier so that’s pleasing to the ego if nothing else!
The Occupational Therapist is also my KeyWorker which is quite odd since I’m used to being others KeyWorkers!
Went to the Ethiopian restaurant that we have for many years possibly 20 at this point last night with the people that we met on Usenet which is in fact where we met in the first place, and I was still a postie, at that point, the photo above was made by one of my friends from that time!
Was good to see people I hadn’t seen for years, we are looking a little greyer now!
So been to The Wolfson Center in Queen Mary’s Hospital today, where I was met by assistant Nero psychologist, where I have done 8 hours of questions and tests! To say I’m tired is a understatement!
But hopefully it will allow me to understand the damage done to the little grey cells! I should get feed back I think when I come in for the Cognitive program which is 4 days, let’s see how it all goes!
Watched Chris Packham documentary about his and others Autism.
One of the thoughts I had that swirled about, watching this was the question asked was if you could cure your self would you? For most it’s quite a difficult question since the disability or what ever one wants to label it, has often shaped you. For example where I begin and stop and where the Dyslexia is difficult to measure. As much as it did cause me grief particularly in school would I really want to remove me? It’s part of who I am, which is what most folks say what ever they might have/be. Have to be honest I’d roll back time to not have my head injury in a heartbeat!
The other thread which I guess is the other side, is viewing things as a Gift, which happens in the Dyslexic and Autistic Community’s and most though not all other disabilities/label which tends to be honest, starts with wanting to be positive, moves though sugar coating to attempting to rationalise, I always found it intensely annoying!
This Blog by a Mum of some Autistic boys explains it well.
I’m down in Wales for Paul’s 50th, which was a surprise party at the Bridgend Inn in Brynmawr he looked very surprised I’m impressed that Ceri managed to organise and keep it a secret from him!
Was good to see people I hadn’t seen for many years! And some new people as well, I have always liked parties. I did have to crash out early as I needed enough brain to drive home, but I wasn’t the first to go!
I have also been picking Sloes to make homemade Sloe Gin which I was chatting to Hannah and others, about last night. With Dad which was nice also chatting as you do about cakes and WI!
Above is the Shot Tower in Crane Park, it’s part of my new commute which is also part of a much older commute, Sa and I think oddly that I’m doing better with the longer commute, the fact it’s so far been much, quieter than Holmesdale. Is probably also a factor.
We went to see the new Bladerunner film, which was great, I don’t always do great at going places like cinemas or music festivals even quite small ones. But our local cinema and two near Mum and Dad are small fairly swish ones, that have much less over sugared teens so I don’t overload before we have even got into the screen, we have had to just walk away before now, as I’ve just had information overload, I also have managed to fall on someone etc.
There is quite a interesting video on the guardian site called The party with an impression of an Autistic teens experience of a party, and the information overload due to it.
Quite interesting that though it’s similar it’s also quite different, on the whole loud in of its self I don’t have a problem with, it’s the intensity and of the music/tv/film. I do tend to in the cinema have to look away/close my eyes at points that I feel overwhelming, not many but normally a few places in the film.
In other news one of the chaps from my local Headway group has been in touch so I and Sa add our experiences to his site, Brain Injury TouchPoint which is a great idea, how it can gain traction and information out of the brain injury bubble I’m not sure but you don’t know until you try!
I am due to get some cognitive testing some 4 years down the line? It was supposed to happen a year or so ago, (it did happen originally but I was so convinced that everything was just fine!) but in that time the Wolfson unit moved from St George’s to Queen Mary’s. And I fell though the gap, which had been frustrating they have apologised which was nice of them.
I’m quite excited about it, I hope it will allow me to understand what has changed ie what’s broke what’s bent and what’s fine! I had very good results a few years back in with Physiotherapy from the Neuro Rehabilitation service in Kew, which at the time I wasn’t convinced at all, at one point I’m being asked to stand on one leg while a young woman throws a soft ball at me!
But it improved much to my surprise my balance immensely for which I’m very grateful and I now understand how that system works or not as you where.
So I’m hoping that Wolfson can do that for me now. Give me knowledge and closure as you where. So my life isn’t just about my head!
After just over 4 years, the house I’ve been working at for the past 4 years is closing down it may or may not open in the future.
But the guys and us will be spread to the winds, I’m stressed/nervous since I it is rather short notice plus there is the whole everyone knows me and that I’m mildly odd and have problems with some things, which is worrying.
My commute is a fair bit longer 12 vs 3 miles and much busier!