Tuesday 26 November 2013

Hospital today was Good but also a Bloody Joke.



Hospital today was good but also a bloody joke.
We left home at 1.30pm to travel to the Royal South Hants Hospital in Southampton as my appointment was for 3.00pm. We arrive at the Hospital at 2.45pm and roll in. I got to reception desk to check in and do all that, I get called and handed a card, and I have to go for an x-ray. We head down to x-ray and check in down there. (It said on the board that wait for x-ray was 1 hour) I waited more like 2 hours before I was seen, and 45mintues of that was spent in the waiting room in one those stupid Hospital gown. As I was in having my x-rays done my mum told me after that Mr. Evan Davies sent his secretary round to see where I was because my appointment was for 3.00pm. 

I haven’t seen Mr. Evan Davies in about 7 years. (And I didn’t see him till gone 5.00pm because of the delay at x-ray, I’m happy he stay to see me as he was ready to go home)

He said my Scoliosis had got a little worse from the time before. (Before the curve was 40% dirge and now it’s about a 43%) he said so it’s nothing really to worry about, and as I do not have any back pain of discomfort when sitting there is nothing they can do.
    
After the summer of weird episodes of pain that I thought were linked to my back, today has been closure for me and fantastic news that my Scoliosis had only got a little worse.

On the move again today for Hospital

On the move again today. Back to Southampton this time for Hospital, to see the spine doctor.  I had  an appointment for  21/1/2014 and it got reschedule to today Tuessay the 26th of November at 3 o'clock.
My mum seems to think that they have pushed it forward because of the scan i had on my stomach and I'm finding out I have an enlarged spleen.
Maybe it is, i don't no all I am hoping for is that it is good news and my spine hasnt got any worse.
Good or bad news i will do a post later tonight.

Sunday 24 November 2013

30 Seconds To Mars and a Nightmare Journey



Yesterday’s adventure to London was good times; just the journey both was a nightmare.

I meet Chris yesterday in Winton (here in Bournemouth) at a cafe for breakfast, then we jumped on a bus and headed for the train station. We got to the train station early and we had an hour to kill. He grabbed a coffee and we just sat in the little cafe inside the station and chatted, then he went for a quick smoke and I waited on the platform. A train lady came over to me and asked which train I was getting, I said the 12.59 to Waterloo, she then asked if I had booked ramps, I said yes I have, she asked my name,  I said Justin Scrimagia. She said great I will let my colleague know, but I think she may have forgot to as it was a fellow passenger that told a train man and he got the ramp out. We got on the train and it got delayed leaving Bournemouth and then delayed again at Southampton. Added about 20mins on to our journey, we arrived at Waterloo and their meet us at the train with the ramp to get me off the train.  We then headed for the underground for the tube, busy as hell and oh yes further delays on the tube line we needed.

Having finally making to the O2 arena, we meet up with some friends who were also going to the gig (Abi and Zoe) we all went to Garfunkel's restaurant for food, it was nice good food and good company. After filling our belly’s we had some time kill before heading in for the show to begin.

First up was the support band You Me At Six now Hate is a strong word But I really, really, really don't like them. I will give it to them though they did their job they got the crowd fired up, and for the people who are into them they were loving it and having a good time. After You Me At Six finished I think there was a delay with 30 Seconds To Mars as it took ages for them to start. When they finally hit the stage it was great, a good set they played of new and old hits. The only thing that did annoyed me a bit was Jared Leto stopping to talk, now I understand why he was doing it to make the crowed feel like they were part of it. It got to the point where I was like dude just shut up and sing, when he did sing it was great and the stage show and lighting they had was just wow, it was fantastic to be apart off.

After the show had finished and missing one tube back as it was full. We made it back to Waterloo with about 15mins to go before our train left, so we get to our platform and we see a train man and Chris goes or to him to say we need to get on this train can you get the ramp. The man’s reply, I don’t know nothing about it not my job. 10mins later he come to us and goes I’ll go get someone for you, me and Chris just look at each other and go he could have done that 10 bloody minutes ago.  A train man comes over with the ramp and we get on the train. Now the deal was because they were doing work on lines, the train was only going to Southampton and they were laying on buses back to Bournemouth.  I got told as I can’t get myself on the bus they wound lay on a taxi back to Bournemouth. (Look see play things by the book and you still get nowhere)

Southampton Central (SOU) -  Assistance in transferring between trains,
Assistance at station for alighting,
Wheelchair user requiring ramps at destination station,
wheelchair accessible taxi required to BMH
 

We got of the train at Southampton and leave the station and go outside to no taxi, we go back in the station to talk to the staff and explain it all to him. He goes maybe they are the other side, so we go the other side and no taxi. We got stuck in Southampton for just over 30minutes and then a taxi driver outside the station, asked what was going on we explained it all to him and in the end he was the one to bring us home.
Both he and the two staff at Southampton were fantastic, lovely people. Bournemouth station will be getting an email of complaint by me, as it was a complete fuck up and lack of communication by Bournemouth. 

Apart from the nightmare of a journey, had wicked time at the gig live music is just the best. :-)

Friday 22 November 2013

London Baby

Here we go.

My first blog out on the road, well train. We are off to London baby. :-) i'm with my best friend Chirs, and we are going to see 30 seconds to mars 2night at the O2 arena. So some may say why 30 seconds to mars??  when you like other heavier bands, well I like what I like and I will admit that 30 seconds to mars are a bit of a guilty pleasure. (We all have them)

I have been a good disabled person and pre-booked my ramps so i can get on and off the train. I only down part of to days adventure is, on the way back we have to get a taxi back from Southampton to Bournemouth. This is because they are doing work to rail lines. And they are lying buses on from Southampton to Bournemouth but because i am no longer able to walk i can't get on it. So taxi back it is, (South West Trains) are paying for the taxi not me. This isn't the first time I've had to do it, which it kinda sucks but hey ho it beats getting stuck at a train station in the cold and it's a way home.

Just throw in a plane and a boat and we will pretty much cover all forms of transport today haha. Lets go have some fun in London town. :-)

Thursday 21 November 2013

FA + Falling = Warzone



It is only Thursday afternoon and this week has been a bit of a warzone for me. FA has been getting the better of me, I have falling a few times mainly off the toilet when trying to get back into my wheelchair. Like today I totally over shot my wheelchair and face planted on to the cold floor. No major injuries just a few grazes and a bump to the head.  My mum and brother had to help me back into my wheelchair, I feel so silly when I fall and can’t get myself back up.

Afterwards my brother was asking me why I have a big problem with asking for help. I was trying to explain to him but he didn’t understand it, all I could say was that I get a huge rush of self gratification when I accomplish something on my own. I love the feeling, I guess you could say it’s my drug I am addicted. That’s why I prefer trying to do things myself, rather than asking for help.

Is it just me?? Am I the only FA or wheelchair user who feels like this?? Or is it some sort independent code that we disabled people have build into us??

This may sound a little crazy but I tend to feel more human and alive, knowing that I have accomplish something on my own doesn’t matter whether it’s big or small.
For now in my life with FA are getting harder do Yes I will admit that. (First time I have admitted it) so for as long as I can I still want to do the things I can do for now on my own. I know FA will get worse over time and it will come to the day where I will have to ask for the help for the most basic of tasks.  Trust me that is on  my mind every day and as always we will cross that bridge as and when I get to it, as for now hopefully that’s something  future Justin to deal with.  I’m just going to keep living my life doing the stuff I can and maybe asking for help with the stuff I can’t, see I am leaning baby steps :-).