The Festival Season Rolls On!

We have now experienced V Festival, and what a weekend it was! After managing to secure such fantastic positions at the previous, much smaller festivals, we were pretty certain that there was  no chance of us getting up close when competing with a whopping 90,000 people! Equipped with our wellies and flowers in our hair - what else could you need? - we made our way to Weston Park.  We arrived in plenty of time, giving us the opportunity to check out the site for accessibility. We decided not to camp this year, but after seeing the facilities, we are seriously considering it for next time! I've never been camping at all yet - the whole 'Glamping' thing sounds rather appealing actually - but I guess all I'd really need is a relatively big tent and an electrical hook-up for my overnight machines and charging my power-chair.  We retrieved our wristbands for the accessible viewing platform just in case it was, for once, in a good position, yet, once again, you'd need binoculars to see anything. We slowly made our way around the arena, checking out where everything was and as we approached the main stage, we realised that there was actually a space on the front barrier! My chair immediately went on to turbo-charge, and sped across the field - it's amazing what you can do when a front row spot is at stake!

We made it!

 

It's quite ironic really because, despite not actually needing to lean on the barrier for support, nothing can beat that feeling when my tiny fingers wrap half way around it, and nobody can move me away!

 

 

 

This festival was quite different from the others as there was more than one stage, and so people were generally wandering about, popping in to see an act, and then moving on again. This was our original plan, you know, just to meander around the stalls etc. but after miraculously claiming such a great spot, there was no way that we were going to risk losing it! Driving at speed across a bumpy field really is necessary at these events if you want a bit of atmosphere as well as a good view, but it's not something that I want to be doing every 30 minutes or so. It can be pretty painful on my neck and so my sister Candice has become expert at holding my head in place as we race along, but hey, nothing worth having come easy, does it? As I say, each of the earlier acts would play for about 20-30 minutes, and then a large number of people would leave to go and see another artist somewhere else. This meant that every time someone finished, we could move in towards the centre just a tiny bit. It didn't seem much at the time, but looking back, we did move a fair way closer! The crowds did start to build as we got to the third or fourth act and, as you would expect, the security team began to feel rather anxious for my safety. I don't blame them one bit, and in actual fact, I'd be worried if they showed no concern at all, but we did manage to convince them that, truthfully with the front barrier beside me I was in no danger of being pushed over. My chair also provides great solid protection if the crowds were to push forward, and my mum, sister, and my PA, Sally, stand behind and to the side just incase - quite frankly to protect others from hurting themselves on my metalwork more than anything else!

  

Day 1!

 

Day 2!

 

 

 

Having a prime spot though often comes at a price, and this time it was the inability to move away for anything, whether it be to fetch food, drink, or even to avail yourself of the facilities (although from what I've heard, that might have been for the best....)! After nearly 12 hours of standing - well, sitting for me - on a field in the centre of England, you're bound to get quite chilly, and as I've said before, this causes quite an issue for me. Driving is hard enough with a cold hand, but having to try and dodge all of the rubbish that's left behind after a festival is a nightmare! Two people have to walk in front of me kicking away all the empties, to clear a pathway, but on the bright side, they say this is a great way of getting the blood circulating again in their legs after their long stint standing. When you do finally reach the car at around midnight, you still spend at least another hour or two queuing for the exit - camping on site was sounding better and better by the minute!

The traffic wasn't too bad on the first night as most people were staying over, and so there was still time to head to McDonald's Drive Thru to collect our compulsory midnight feast. It has now become a tradition that we have a well-deserved McDonald's after every concert, as we've usually had hardly anything to eat all day! When we arrive at home it can be anything up to two 2 hours before I'm actually in bed, by the time I've sorted everything out and then hooked up to my machines. As well as my ventilator, I have a SATs monitor that attaches to my toe and measures my oxygen levels and heart rate overnight, and it alarms if they rise above or fall below a certain number.  I've been using all my machines for about 10 years now, and so they really don't bother me, in fact, I kind of miss them if they're not there!



 My machines

 

We woke up early again the next morning and left the house at around the same time, praying that we'd be as lucky with the traffic as we were the previous day. Thankfully we were, and made it in even better time as we knew exactly where we were going, unlike before - in our defence, it doesn't help that one of the important signs directing us to the venue had fallen down! All of the staff on the gates and in the car parks etc. were great and let us park in the same spot, making it really easy for us to head right on in. After such terrific luck with our position on Saturday, there was absolutely no way that we'd match it a second time. We didn't dare to even hope... Whilst wobbling over the grass past all the delicious food stands, we once again spotted that there was space on the barrier just one or two people across from where we were before, and once again, my chair grew it's wings, and it flew! I can't really put into words that feeling of having achieved what we so desperately wanted to achieve, but I suppose it's just a mixture of relief, satisfaction, and a huge amount of joy. All the acts over both days were amazing, but also quite different to what I've seen before. Each and every one of them had so much talent, and the whole event showed me just how much I want to be involved with the music industry in some form or another in the future.

Front row, bottom left!

To any wheelchair users looking to get a front row spot at a concert/festival, I would say that there are four main things that you need: preparation, commitment, determination, and resilience.

Before I go, I would just like to say a HUGE congratulations to my sister, Candice, who yesterday received her GCSE results, and has achieved an astonishing ten A*s and one A!!! She certainly deserved it, and we are all extremely proud.

My gorgeous sister ready for her prom!

Write soon,

Tilly,xox

 

 

 

 

 

 





 

My Chair Really Can Fly!

Ever since last summer we have been counting down the days until the festival season began again, and on Saturday it finally did! Before we left though, a photographer came from the Daily Mirror  as they were doing a follow-up on some of the previous Pride of Britain winners. That was an amazing night, and I'll definitely write all about it some time soon.



Candice and I all ready to go!

 

We were really lucky last year at Total Access Live to be able to get a spot very close to the front ,but we never expected to even nearly match that for the second time. At most concerts there is a designated platform for wheelchair users, but it's that far from the stage that it's practically in the next county! I understand that for some people it might be good to be away from the lights and loud noises, and of course I wouldn't want to block the rest of the crowds view, but you honestly need binoculars if you actually want to see anything! We arrived a few hours before the gates opened, and sat at the front of the accessible queue with our stress levels rising uncontrollably until it was time to go in. They let the VIP's and the wheelchair users in a few minutes early to avoid the crush, but it was just enough time to have a little head start.

The distance from the queue to the stage...

 

As soon as we were given the go ahead I, along with my PA, Sally, headed for the stage with my chair on top speed - I never knew it could actually fly! It was so touching when the people that had arrived before us were cheering me on and saved me a space on the barrier. I couldn't believe that we'd made it to the front ahead of a crowd of 15,000!

 



 So stressful, but so worth it! (Front row, middle right)

 

I don't know what I'd do without my chair at these concerts, because if I couldn't go up and down, I wouldn't see a thing! I have an Etac Balder, donated by Caudwell Children (http://www.caudwellchildren.com/)  and it really is out of this world. It's quite entertaining because some of the singers/bands on stage spend a long time looking down at me and the chair in the crowd, just trying to work how on earth a wheelchair user has got so close! My Neater Arm Supports (http://www.neater.co.uk/) are also fantastic for festivals, as without them, how would I be able to join in with my arms in the air and clapping along?

 

There were lots of great acts this year, but Union J and Ollie Marland had to be my favourites. We first met Ollie at the opening of The Donna Louise Children's Hospice's (http://www.donnalouisetrust.org/) charity shop in Stoke in 2012, and since then we've seen him at a fair few different events and concerts.

 

Me and Ollie Marland, Dec. 2012

 



He has been so genuinely lovely every time and, as well as being extremely good looking, he's very talented. He is becoming more famous by the day, having just signed his first record deal, but none of it has stopped him really caring about his fans, and he goes out of his way whenever he can to ensure that each and every one of them feels special. We're also so privileged to have got to know his biggest fans, his parents, who have also gone out of their way to make magical things happen for Ollie's supporters.

 



 One of the best moments of my life when Ollie mentioned me on stage!

 





After staying until the very end and then having to bump my way back across the field and negotiate my way around the mountains of litter, it must have been at least midnight by the time we got home, but we were still up at the crack of dawn the next morning to get ready for OsFest! This was a much smaller festival, but they still had some really big acts such as Luke Friend and Union J (again, I know!). From the event organisers to the security and parking staff, everyone was so kind and helpful which really does make all the difference - we even got a VIP upgrade! My Mum and Sally were able to relax in style, whilst my sister and I were frozen to the barrier, determined not to move until the very end. We amazingly managed, after bumping over the field on turbo charge again, to squeeze onto to the front row, smack bang in the centre!

 

My amazing chair working it's magic! (http://www.etac.com/uk)

 



More people started to arrive as the time for some of the bigger acts neared, but the wind also began to pick up rather rapidly too. During one set (Elyar Fox for those interested), the whole of the crowd had to be moved to the other end of the field as there was a high risk of the stage blowing down onto us all. There were some rather angry people as you can imagine, as some had camped overnight just to get a spot near the front. We were really disappointed obviously, but kind of accepted that we weren't going to even get close to where we were before - that's if it continued at all! I completely understand, and it wasn't their fault that there happened to be a passing hurricane on that day! All I can say is thank you so much to the lady that upgraded us!  Because we were VIP's we were able to sit in the tent and try and warm through whilst the people in charge came up with a plan B. I can't drive at all when my fingers freeze which is kind of an issue, and so it was pretty handy really. This luxury also meant that we were that little bit closer to the stage, giving us an advantage if the wind were to eventually drop and the concert to continue.

 

Fortunately, it did in the end, and Candice  and Mum were miraculously the first to get back to the barrier at the front - they are very proud of themselves for that. The girls around were so understanding when they heard that my Mum was only saving the space for me, and when I eventually rolled up they all stepped back and made a corridor for me to squeeze through. The concert was great after that - despite the weather -  and we were recognised by Union J (aaahhh)! The rain really didn't matter because, as long as you keep all your electrics in your chair dry, it really makes no difference. Having said this, there was a very kind person next to me who held up an umbrella in between acts to whom I am very grateful.

 

Here are just some photos of the highlights from the weekend:

 

Union J - Total Access Live!

 

You can just about see us on the front row!

Photo credit: Signal 1

 

 

Union J - OsFest!

 

Luke Friend - OsFest! (He then looked down and put his hand on my arm!)

Photo credit: Aquarian Photography

 

The countdown continue and I'm just polishing my wellies - yes, I do wear wellies - all ready for V Festival!

 





Write soon,

 

Tilly,xox









Week Two of The Summer Hols!

Week two of the summer holidays began with a trip to the Orthotics department at the hospital to have my foot splints re-cast. Ever since I was little I have worn hard, plastic splints on my wrists and feet to try and slow down the deviation that comes with my condition, and every year or so I go in and have them re-cast using Plaster of Paris. I used to clear the waiting room when I was younger with all my screaming, but it really doesn't hurt at all. It was just 'fear of the unknown' I guess. They aren't exactly the most comfortable things in the world, but as long as my feet stay 'shoe-shaped', I don't really mind (I'm rather fond of my shoes to say the least). They do rub sometimes, but they're nothing compared to the spinal braces that I wore up until I was about 8 years old, which encased me in even more hard plastic from my shoulder blades to my pelvis - now that was sore!

 

    



 My spinal brace and foot splints.

 

 Another part of my disability (SMA) is Scoliosis, where the spine curves and can eventually compromise things like the respiratory system, and so a brace is used to try, again, to slow it down. When you reach a certain point, it's time for spinal surgery. I have a scar from the top to bottom of my back from when I had rods placed either side of my spine in order to try and straighten it all out - it honestly transformed me. They had to be extended in surgery every year or so to make sure that my trunk could still grow, as I was only young and small when the procedure took place.

I know this looks quite scary, but minutes later I was sat up chatting and eating McDonald's!



In September 2013 I went down to theatre, one more time with feeling, to have my rods replaced and then fused to my spine. The two main operations (the first and the last) take about 8 hours, and so it can be a long day for my Mum and Dad - time flies for me under general anaesthetic! I had begun to lean to the left again over the last 12 months, the name 'Leaning Tower of Tilly' slowly making its return, and so my fabulous surgeon decided that it was time for me to become the Eifel Tower. I had some pins placed around my pelvis at a diagonal from the bottom of my rods - et voila! - if you were to look at my spinal x-rays now, the Eifel Tower you would see.

The past few days have been spent with some friends, and so it was lovely to see them and have a catch up. Lexi (our Golden Retriever) loves everyone she meets, and so having three relatively small children in the house, all desperate to play and cuddle her, is heridea of Heaven. She is beautiful though, and so gentle too. We went down the route of Dogs For The Disabled, but soon realised that it just wasn't for us, and so we found Princess Alexis (she allows us to call her Lexi) - she is perfect.

Our Princess Alexis.



Lexi absolutely adores Rudyard Lake, and so she comes along with us every time we go. We took our friends there, as Rudyard Sailability had a group down called PHAB (Physically Handicapped and Able Bodied) Camp, and we were going to help out. The people who volunteer on this Birmingham-based camp are all fabulous people, and are they're there for no other reason than to make sure that these young people had the best time possible. Our friends were completely and utterly astounded and inspired by their energy, enthusiasm, and commitment, with their young boy saying that when he grows up he wants to become a PHAB volunteer - that says it all in my opinion.

Every evening we'd come home to a delicious meal, lovingly prepared my Dad, who I must say is a most excellent chef. He is that brilliant in fact, that my sister once told Gordon Ramsey at the Pride of Britain Awards that our Dad was the best chef in the world - he agreed with her straight away of course, but then whispered something into my Dad's ear, and you can imagine what sort of thing it was. I don't know what we'd do with out him, as he's not only Head of Catering, but also Head of Maintenance, Head of Ironing, Head of Food Shopping, Head of Technology-Fixing.... the list goes on and on! He tends to look after things whilst my Mum is helping me with various things, and so along with my sister Candice, and Lexi of course, we all make a pretty good team!



Daddy's little girl.x

One last thing before I go, sort of a 'Tip of The Week' thing really, is that my new phone case arrived in the post a couple of days ago, and it is ideal for someone like me who has a tendency  to drop things. It comes with a detachable chain so that I can wear it instead of trying to balance it on my knee whilst driving which, let's face it, was never going to work.

New Phone Case!

 



I can't have it in a bag as, in an emergency or just in general, I wouldn't be able to reach it, dig it out etc. and so I thought I'd share it just incase it would be of any use (there are other styles available, but it wouldn't be complete for me without a little bit - okay a lot - of bling). It'll be especially handy over the coming week, as the festival season finally descends upon us! I'm sure you'll here all about them in my next blog...

Write soon,

Tilly,xox