Sunday, 11 June 2017

Fragile X Research Trip To Edinburgh Scotland

As many people know I have Fragile X a learning disability you can read more here http://sarahbobbeal.blogspot.co.uk/2015/02/my-disability-fragile-x-syndrome.html and so when my mum got a letter through about volunteering for research in Edinburgh I thought it would be good to go to possibly help others. We booked our trains and a hotel to Scotland I also wanted to go away somewhere as I don't really go anywhere because I get travel sick :(

Day One Travelling Tuesday 6th June 2017
Me and my mum travelled from Braintree to London Liverpool Street, then we caught the tube to Euston to then get a train to Crewe and then onto Edinburgh. The journey going wasn't good at all because our train seats were backwards not good when you suffer from travel sickness :(. When we got to Crewe and got off the train in the fresh air I felt a bit better but it still wasn't nice.  We arrived at Edinburgh at about 4:30pm after a 7 hour journey. The hotel we stayed in was called Motel One and was right opposite the station and was a nice room especially the shower!. We went out to Pizza hut for dinner which was good.

Day Two Wednesday 7th June 2017
This day was the research day which was a taxi ride away at the Patrick wild centre, the scan was at a different hospital. I was really nervous and anxious about it but I thought I'd be ok after having a practise one and talking through what will happen. First I answered some questions and did some word/picture tasks some were easy and some were hard but it went okay. Then we went over to the other place for the scan I was given ear plugs, headphones and some padding around my had, then there was a thing that goes over the face and then some binoculars which shows pictures and I had to press a button. When I first went in the scanner I really panicked and had a button to press because I wanted to get out. I felt claustrophobic,my heart was racing and my hands were sweaty and I felt scared. I then got the option to have the scan without the thing over my face but I still felt panicky and anxious, I got upset a few times during this and afterwards when I'd decided I didn't want it done after all I felt like I'd let people down and just felt over whelmed. After we had been there we went onto visit the castle which was good and the weather was good! (the best day) the castle was interesting my favourite part was the prisons (I've watched a lot of docs!). We then went back to our hotel and then went out to look for somewhere for dinner and ended up in the filling station which was really nice!.


Day Three Thursday 8th June 2017
It rained for most of the day! oh bother anyway we went shopping, looked around a money museum and had a little bite to eat in patisserie Valerie. I bought 2 Cath Kidston bags (I'd never been in there before!) one was from the Disney 101 Dalmatian collection and the other was a blue bag with ducks on and I also got a purse/little bag these ones were in the sale. In the evening we went to Prezzo for dinner which was nice.

Day Four Friday 9th June 2017
Going home day :( our first train of the day was at 10am so we had to be up and ready, we had breakfast in this little cheap café around the corner it was ok but there was water on the floor and the delivery was everywhere so not really ideal but ah well. The train journey home was much better because we had face forwarding seats I listened to my music and just looked out the window so I didn't feel funny. I also napped a lot! well it was a 10 hour journey home. We got to Peterborough and had a few hours wait for the next train to Ipswich, then we got to Witham and then had to wait again for the train to Braintree and then we got a taxi back home at 9pm! such a long day!.

I had a good time despite the weather but that's Scotland for you! I would go back again and possibly take part in other Fragile X research should they do any.

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Thanks for reading and I'll be back soon with more posts.

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