This is me - Newsletter Spring 2015

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Spring 2015

Moving to Belfast I can’t believe the difference in the temperature between Belfast, where I am now living and studying, compared to Cambridgeshire where I moved from! It was so much warmer down there!

The other day I was listening to Radio 1. One of the DJs had just come back from Belfast and said it was: ‘A fabulous city that you have just got to visit.’ I couldn’t agree more! My move here has been a good thing for me. I am currently studying Theology in Belfast, which I am loving. Getting accustomed to student life and the workload has been ok so far, and I have met some really cool people here in Northern Ireland. I live on a farm about half an hour south of Belfast; I love being outside and occasionally help out with the

Nic Shaw, Shine’s part-time Youth Work Coordinator

cows and sheep. We also have three dogs called Lizzy, Jen and Tilly.

I managed to get out and see some of you over the past few months and have a chat about the good and the not-so-good stuff. Even though the young people of Shine are all over England, Wales and Northern Ireland, that has not stopped you from calling me up to talk, which is great. I know that a bit of support is often welcome.

You guys deserve medals for the things that you take in your stride!

Regardless of the change in location, you will be pleased to know, that my work for Shine has continued! This is Me has had a couple of great new additions and is still growing. Its been good to meet up with you and find out how you are doing.

Coffee project These past few months of changing around for me have sadly had a knock-on effect for the Coffee Project. But, don’t worry! I will be resurrecting this soon and brewing up at a coffee house near you. Keep your eyes peeled for dates of events coming to a Costa near you soon.

Get in touch with me on T: 07456 669205 or E: nic.shaw@shinecharity.org.uk or find me on Facebook C facebook.com/Shine.Nic.Shaw

E: thisisme@shinecharity.org.uk with photos, messages and ideas for your club! www.thisisme.org.uk

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My selfie with Simon

By Tegan Welch Hi! My name is Tegan. I am in my seventh year of having a shunt and I’ve luckily never had a problem with it. I have read some member’s posts on the This is Me Facebook group and a lot of people have had a lot of problems with their shunts. I am always very careful about what I do, but I recently discovered that rope bridges are not good though!

I have done some awesome things through my life. For example, I have been to Disney Land, and not very long ago I went to London for the weekend to watch the X-factor. I even managed to get a selfie with Simon Cowell! Out of all the judges, he was the only one that stopped for autographs, which surprised me. The only bad part to the whole weekend away was having to wait in line to go into the arena. The X-factor show was supposed to start at 7:30pm but it ended up starting at around 10:30pm. But, the wait was definitely worthwhile, because we got to see some amazing acts, such as Kerrianne, Only The Young, and Chloe Jasmine. One of the worst acts was Blonde Electra!

During that weekend me and my family also went to Wembley stadium and had a tour, where we had our photo taken with the English FA Cup. That weekend was one I will never forget!

This is just a little insight into my life – I hope to see some about you sometime!

“I even managed to get a selfie with Simon Cowell! Out of all the judges, he was the only one that stopped for autographs, which surprised me.”

Did you know?

The This is Me club now has a massive 240 members!

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Robin’s remedies Shine’s Robin Barnatt gives advice on self catheterisation “But catheterising takes so long, and makes me feel so different from my friends…”

We all need to empty our bladders regularly; it’s a part of life, and essential for keeping us healthy (especially our kidneys, which remove lots of unwanted chemicals from our blood). But emptying bladders is not always so straightforward for people with spina bifida. The nerves to and from the bladder don’t always work so well, and so you need to catheterise. Some people find this very frustrating and, for a lot of people in their teens and young adulthood, it’s a REALLY sensitive issue. Maybe your parents did it for you as a child?

Or someone came into school to help? But now, many of you won’t want someone doing that – so it becomes YOUR responsibility.

Having to do something like catheterising might make you feel a little different from others; it can also be hard to remember to do it if you don’t get the feeling that you need to go. But it is a big deal. Regular catheterisation makes ‘accidents’ –

wetting yourself, or leaking – less likely, and you will probably get fewer infections down there too.

Most importantly, it keeps your kidneys safe, and maybe keeps you out of hospital!

To make sure you remember, you may consider the following: • Try setting reminders on your mobile phone.

• You could ask a close friend to remind you.

• You may like to ‘timetable’ it into each day at particular times as routines can be very helpful.

We all have to do things that can seem a bit tedious, but this is one thing not to skip – a few extra minutes could make you feel more comfortable around your friends, and if you are more comfortable then you are likely to be more confident that these little accidents won’t happen.

If you have a health question, contact Robin on T: 01733 555988 or E: robin.barnatt@shinecharity.org.uk

The This is Me mascot Nic Shaw: Last year I was outside building a porch for the front of a shop, when I heard a strange sound. After hunting around, l discovered a little kitten no bigger than my hand, hiding underneath a big flower box. When he came out he didn’t scratch or hiss he just whined! I thought he was the puurfect candidate for a This is Me mascot!

This is T.I.M, named after This is Me, and he has now been living with Nic in Belfast for three months. After a couple of days in the house, he soon began to warm up and show his ninja cat skills. He can now scale up the back of the armchair with ease. Out in the yard are two large sheep dogs, Jen and Lizzy. When they first saw T.I.M., he climbed over the house, got on the roof and jumped down in front of them. Even though this was not the smartest move, he soon fended off the two dogs with a hiss and introduced them to his claws.

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Shine hot seat

Kaela Moore

Shine quizzes This is Me member, Kaela Moore Kaela is 12 years old and has spina bifida and hydrocephalus. She lives in Buckingham with her little sister Becky, two cats, Skittle and Merlin, and a dog called Alfie. Kaela loves swimming, horse riding, and playing the violin.

Your top-prize possession Terence, the tiger. My mum bought it for me before I was born. It was the only toy she bought before I was born.

The temptation you cannot resist Chocolate cake!

The thing you would do if you were invisible for the day I’d eat lots of chocolate cake and no one would see me!

Your pet hate People talking when I watch TV. The person who influences you the most My mum; I always talk to her if I need to and she is always around.

The book that holds a lasting depth I don’t really have one special book, but I love all Roald Dahl books.

“I’d eat lots of chocolate cake and no one would see me!”

The piece of advice you would give to someone younger Never go to bed on an argument.

The film I can watch over and over I have too many too choose! Matilda, Home Alone, The Witches, Elf...

The song that means the most to you I love ‘Shake it Off’ by Taylor Swift – every time I hear it, it makes me happy and my sister and I love to dance around to it!

The ambition that continues to haunt you I have tried several times to canter when horse riding but I have fallen off twice and it is a bit scary.

The person from history I would like to sit down and chat with I don’t know much history so I choose my Great Granny. She died when I was a year old and I would have loved to get to know her better.

“I would go to New York. Lots of films I have watched have been filmed there” 4

How would you spend your dream 24 hours?

I would go to New York. Lots of films I have watched have been filmed there, so I would visit all those places I have seen in the movies.

Fun at Hogwarts

by Angela Bailey, Shine Support and Development Worker Nic and I met fourteen very excited This is Me members and their parents/carers (who were equally excited!) at the Harry Potter Studio Tour in Watford on the 24th October 2014. Felix and Nicole were extremely pleased to see one another again as they had met at the Cadbury World Tour and were soon exchanging email addresses.

Everyone received their Harry Potter Activity Passports at the beginning, so that they could be stamped along the way and provide a souvenir of the tour. We were led through to a room where we told about the history of the Harry Potter books and films, and then taken to a cinema for a presentation.

We all stood in awe as we were taken into the Great Hall, which is featured in all the films, and the start of the tour began. It was fascinating to see how small the robes were that Harry, Ron, and Hermione wore when they started at Hogwarts! We all wandered around the inside sets, which included Hagrid’s Hut, Mrs Weasley’s kitchen, Harry and

Ron’s bedroom, the Ministry of Magic, and the Chamber of Secrets. Some members stopped in the Green Room to have photos taken riding a broomstick.

The tour then continued outside and we saw the Night Bus from the film Prisoner of Azkaban, the Weasleys’ car, Hagrid’s motorbike, and Privett Drive. We then had the opportunity to try Butter Beer and stop for lunch and a chat.

It was fascinating to see how small the robes were that Harry, Ron, and Hermione wore when they started at Hogwarts!

The tour continued with a display of the animatronics and then the highlight for many – Diagon Alley! Some members were very brave and stopped for a photo with a Death Eater. Last stop was the gift shop where we could purchase a variety of wands, scarves, and other Harry Potter memorabilia.

The Harry Potter experience was an event enjoyed by everyone and a day never to be forgotten!

“The Harry Potter experience was an event enjoyed by everyone and a day never to be forgotten!”

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Shine Youth Council Over the weekend of the 10th–12th of October, we had our first youth council in Coventry. There were six young people, Aaron Mckane, Amy Macdonald, Rosie Booth, Megan White, Rowan Ford and Simeon Wakely. The rest of the team were made up of, Andrea Daye who volunteered, Elaine Adams (Shine’s Support and Development Worker from Coventry) and the carers or parents of the students.

‘I enjoyed my time in Coventry at the Shine weekend, where the first Shine Youth Council was set up. We stayed at Hereward College and the accommodation was excellent.

The highlight of the weekend was getting to meet new people from across the UK. It was interesting seeing what they have done in their local area to promote Shine and it helped me to see what I can do in my area.

We were even interviewed on the radio, to help us let the people of Coventry know that we were in their city setting up the Youth Council, and

having our first get together to decide what we want to do in the future. I really enjoyed the T-shirt and jumper design session. We designed one specifically for the Youth Council so that when we are at a Shine event, we can wear them to promote the Youth Council. I would like to thank Nic Shaw for organising such a fun and packed weekend!’

Aaron McKane, Shine Youth Council member.

‘The venue was amazing and very accessible for everyone.

It would be a suitable place for other residentials or our next Youth Council meet up. Over the weekend, we talked about what a Youth Council is and the roles we have as people.

We also talked to the other members in the Youth Council about our experiences and shared them with people in the This is Me club!

The radio interviews were really good, considering the small amount of time we had to get everything together.

Everyone was so nervous but with the support of the other youth Council members, the interviews were great. One thing we did learn; when you mix the Youth Council with pancakes, you get a very hyper Youth Council, especially when you add a guitar to the meeting – it just ends in laughter!’

Amy MacDonald, Shine Youth Council member.

Supported by

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We want to hear from you!

Have you ever been in the newspaper, magazine, or any other media apart from Facebook?

At This is Me, we are always looking for articles to put into your newsletter.

Over the past year I have been traveling around to various This is Me events, where I get to meet loads of young people connected with Shine. I’m constantly surprised by their approach to life, the activities that they are interested in, and the cool things they get up to. I have met climbers, guitarists, swimmers, farmers, computer whizz kids, hairdressers, radio DJs, writers, artists, sailors, basketball players, and fashion gurus.

We’d love to hear from you here at Shine Head Office. Why not write up a short account about yourself and your interests?

Or, perhaps you could share a story about your experiences, whether it be a recent hospital visit or a holiday.

All you need to do is email us your article up to 250 words plus a good photo. We can then publish your article in the This is Me newsletter. We also love to see your drawings so why not share your cartoons or sketches with us! Not only does it mean that This is Me members get to know you a bit better, but it’s also a fantastic opportunity to get your work published – which is great to put on your CV! Cheers, Nic!

We want to hear from you!

Come on and get your voice heard! Please email Nic Shaw on E: nic.shaw@shinecharity.org.uk

Shine’s Lifelong Opportunities Programme 2015

Shine’s Summer Rez! A residential event for young people aged 12 – 16 years with spina bifida, hydrocephalus or intracranial hypertension.

Organised lively activities including archery, music workshop, taiko drumming, kite flying, arts and crafts (including glass painting) and jewellery making. There will also be lots of opportunities for socialising.

Venue:

The subsidised charge to each Hannahs @ , e n participant is £200. Payment can y Seale-Ha be made by cheque or bbot, Newton A debit/credit card or by Devon Q pre-arranged instalments.

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Monday 10th August – Thursday 13th August 2015

Places are limited so please register your interest as soon as possible. Closing date for applications 27th March 2015 To find out more about this event or request an application form contact: Joan or Denise T: 0113 255 6767 E: office@shinecharity.org.uk Reg Charity No 249338 Shine, 64 Bagley Lane, Farsley, Leeds LS28 5LY

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Upcoming events A couple of weeks ago I had the opportunity to get out to Todd’s Leap in Northern Ireland. The purpose was to see if this was a venue that would be good for some activities. It is an outdoor activity centre that has offroad Land Rover tracks and it also has the longest zip wire in Ireland that goes across a valley. We are looking into the possibility of running something at this exciting venue – so keep your eyes peeled!

Because the Harry Potter Tour was received with such a great response last year, and because we could only offer a limited number of spaces, we would love to do this again sometime this year and give some more of you the chance to come along. We will keep you posted!

I will also be continuing to run the coffee project this year.

Our Youth Council will help me to run this – keep up the good work, guys! We made such a good start with our brand-new Youth Council last year, and we will run meetings a couple of times a year. Cheers, Nic!

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SMALL CLAIMS This is Me

~ Civil Division ~

If you have a small claim, we want to hear about it! Email your story to Nic E: nic.shaw@shinecharity.org.uk Jessica Price, This is Me member, says: ‘I had to stay in hospital overnight, because they were going to do tests on me in the morning to decide whether I needed an operation. Mum and I really didn’t want to stay, but then we got told that Jonathan Ross was going to come and visit me to ask me about my hospital stay. He came in with cameras and sat next to me – I was so excited, I wanted to cry with joy! Turns out, they were filming for the Comedy Gala series that year!

Join us on Facebook!

This is Me has a closed Facebook group, which is private so you have a safe space to network with other young people with spina bifida and/or hydrocephalus. Members ask each other advice about school work, they can get in touch with a member of Shine if they have a health issue, or simply share a few jokes, or keep in touch with their This is Me friends! If you are 13 years old or over and want to join the group on Facebook, just request to be invited at C www.facebook.com/groups/Shine.ThisisMe or contact Nic at E: nic.shaw@shinecharity.org.uk Reg Charity No 249338