Thursday, 22 October 2015

Strictly on wheels: Strictly Audience Experience from disabilty/ chronic illness perspective

copyright: Sian Wootton
In the queue to get our tickets validated

Today's post is the second on my Strictly audience experience, but today I'm going to talk in more detail about the experience from a disability/ chronic illness point of view. For more of an overview of the experience take a read of my first post Strictly Audience Experience if you have not done so already. To set the scene, as it were for this post I want to refer back to something I said in my post Taking Chances, which was "life is still for living. Each opportunity is a gift. A chance to have something more than a closed off world of drawn curtains, high pain levels and mobility aids. Where all you see in a week is 2 or 3 people and generally that's just to give you some kind of assistance. More than ever lately I have felt the heartache of how small my world has become. How separate I feel from the real world, the world just behind my closed blinds or just downstairs. I spend so much time listening to all that's going on and not being able to be a part of it. Yet my resolve to try and make this life as good as it can possibly be for myself is at the most determined it's ever been." For me applying for Strictly tickets was part of this. I am such a big fan and it always makes me smile. I'd often watch and wish I was there so putting myself in with a chance of being there was an easy decision. To then find out I had won tickets and was one in 4.5 million was very exciting. The excitement actually drained me quite badly but that's ok, getting to be that excited about something is a big deal and quite precious.

 Of course when you need to start thinking about the how to's, things get a little more complicated. Just leaving the house with a disability/ chronic illness can be a big palaver. But with plenty of planning it can all come together. And with experience and common sense you have a good understanding of the precautions you need to take. You just have to hope your health holds up enough for you to actually make it. As soon as we found out we had tickets we looked into hotels to stay the night before the show and after the show to break up the trip a bit and make it more manageable. Especially given we had to travel down from North Wales and needed to be there early the morning of the show to get our tickets validated. Luckily we found the Ibis Borehamwood, which is really close to the studios and so we booked that straight away. I then started to look into trains, however having never used the train with my wheelchair and not really feeling very confident in doing so given the greater margin for things to go wrong we later decided that Mum would drive us down instead. It just seemed so much easier than getting a lift to the train station, getting one train, then another train, hoping assistance was there and they had the ramps (even though we would have prebooked), then finding a taxi that would take my chair. As well as have to struggle with our luggage. And have to book each part of the journey separately rather than purchase one ticket. It's all a bit much. At least with driving we could take our time, stop as much as we needed and know that we could just pack up the car and go. We weren't relying on several other factors that could easily go wrong. It also meant we could pack as much as we wanted and not worry about creasing our Strictly glam outfits haha. Plus the added joy of heated seats, which are ideal for back pain. Going in the car certainly did make a big difference and although I couldn't switch off too much as chief navigator, it was certainly less stressful, which meant I wasn't wasting precious energy that I needed to pull me through the event. As I was going to need every last scrap of it. To learn a bit more about the mechanics of energy and it's role in M.E sufferers and how we try to manage it for activity/ events take a read of my post Let me put this in a way you might understand.

 A few days before I did start to panic because I caught a cold that left me feeling quite rotten. A cold on its own might not be a lot but a cold on top of a chronic illness can be very draining and make you much worse. I was also miserable that I might have to miss out. Cue lots of hot blackcurrant, steam, vicks, olbas oil and vitamin C and luckily it held off enough to let me go. It was funny though because as soon as we got back in our hotel room I was coughing and hoarse again. I do accredit some of the hoarseness to cheering though of course. Thank you to the cold gods or the Strictly gods, whichever of you it was.

So moving on to the more interesting bits. I did think about just sending my Mum to get the tickets validated in the morning so that I could stay in the warm and again make sure I saved up energy. Especially after the what ended up as a 6 hour drive and not a great deal of sleep. However I wanted to get the full experience of this opportunity and thankfully I didn't feel too horrific that morning. So I wrapped up in a blanket to help keep my legs warm (I find they get cold very easily with not moving and then that can cause pain) we both joined the queue to get our tickets validated. Luckily the weather was dry and not too cold. If it had been raining or really cold I probably would have stayed at the hotel, not wanting to make myself anymore unwell and potentially not be well enough to make the show. It felt nice to be in company and chat to people that love Strictly just as much as I do. This again is something so small but it can mean a lot when you're used to only close family.

We were told that we needed to come back at 5pm rather than the 3pm it stated on our ticket, which was good as it meant a little longer to rest and recover from the morning  before the show. Cue lots of lying very still. One achievement that could easily have got lost in all the hype was that I managed to take my first stand up shower in about 3 years. Yes it was only 2 minutes, it made me pretty dizzy and my Mum was on stand by but I did it. Things like this might seem small but they are big achievements when you haven't been able to do them in years. All glammed up, including my blinged up wheelchair we arrived back at the studios for 5pm and were told to join the front of the queue so that they could get anyone in chairs or others with reduced mobility into the marquee first and seated at the front near the entrance to the studio. Making it easier for us to have access into the studio later on and not be fighting through the crowd. This was one thing that I was a bit worried about before going, getting through crowds is never easy when you're not at people's eye level. I had visions of struggling to get through the crowd of people but luckily good foresight on their part meant this was avoided. I do love that level of organisation and planning, the stage manager in me was very pleased. Even when I needed to get back to our space in the marquee after going to the toilet (the swankiest disabled loo I have ever been in) the staff helped to clear a path for us. It does get you a few stares or sympathetic looks and can make you feel a bit awkward, however it's much better than having to fight to be heard and seen whilst avoiding laddering anyones tights.

Speaking of the staff I really have to commend them, they made the whole atmosphere of being there even more of a pleasant experience. On a practical level they were really helpful, holding doors open so we didn't have to struggle with the door and ramp. Helping us up and down the ramps, in particular the steep ones and at the end of the time when they had got a bit slippy. And it all seemed very instinctual. We never had to ask for help. Someone always just appeared and helped with a smile on their face. From holding the toilet door open as Mum wheeled me up the ramp to helping us down the slippy ramp at the end of the night. I felt so looked after, but never patronized or made to feel like a problem, as can sometimes be the case. It was nice to feel like a person. Whatever training they have in place regarding persons with restricted mobility it's working.

They were very aware to communicate often and to accomodate the different needs that everyone had. The audience manager sought out those of us in wheelchairs and asked whether or not we could transfer into a normal seat to know where to seat us. She then said that we would be one of the first to enter the studio to get us seated safely and at roughly what time. Other members of staff spoke to those with sticks and other mobility aids about their needs and capabilities to know where best to seat them, ensuring their comfort. And they also made sure any pregnant women had a seat by the doors too. One woman looked in so much pain I was convinced she'd go into labour. What a birth story that would have been. This discussion I believe is important as it shows an understanding that everyone is an individual with different needs. But it's also done in a discreet way too, which I found very respectful. 

 I did find that the music in the marquee was too loud. A lot of people struggled to be heard over it and I know my Mum who wears a hearing aid and another person that I was speaking to that also had a hearing aid found it hard to know what people were saying because of the background noise. I know we were about to go listen to a live band but as I can find noise quite draining I felt very conscious that it could drain me of the energy and concentration that I really needed for the main event.
 

Copyright: Sian Wootton
with my validated tickets, resting before the show


When they bought us into the studio I had such a wave of nostalgia. Seeing the props and the white gaffa tape marking the walkways reminded me so much of my stage management days, pre illness. From the marks on the dance floor to the extensive lighting rig and fly tower it all made me gulp in reminiscence. It bought back how much I miss working and all that I'm missing out on. But rather than get upset I decided to use that feeling to make me even more determined and dare to dream again that things one day might be different. As well as simply getting to sit in such a great seat getting to revel in the behind the scenes of one of my favourite shows and feeling very lucky that I got the chance to experience that. That in itself is beyond compare. Nevermind getting that opportunity when you face so much hardship.

We were given plenty of time and not rushed to transfer into our seats and my Mum showed them how to collapse my wheelchair properly. I'm not sure if they needed to do so or not because I'm not sure where they stored our wheelchairs after we took our seats. But they were respectful that they were a piece of valuable equipment and treated them as such. Once we were seated one of the members of staff also let us know where he'd be should we need anything or need to leave the studio.

The one other thing I found difficult was that the chair was uncomfortable. I really should have thought on and kept my cushion from my wheelchair but I wasn't really thinking practically at that point. My head was just screaming "Aahhh you're in the Strictly studio." Plus I should have taken my painkillers a bit sooner rather than worry about getting them out of my bag shortly before the show began and I suddenly thought "ouch I'm in a lot of pain" and "doh I've not had my pain killers." Taking my tens machine with me would have been a good idea too. By the end of the show I was in a fair amount of agony, I could barely get out of my seat and back into my wheelchair. But I did have help. I did ask if Pasha could come lift me into my chair but sadly this didn't happen.

 It took a while to get off to sleep that night but this was more from trying to wind down as I just felt so ecstatic. I was high on life. Like how has this just happened to me? This is so very far from my everyday life. I just feel very lucky that my health held up enough to let me do this. Yes it hurt a lot afterwards and I was very exhausted. It took two weeks to fully recover. However it was a happy two weeks spent reminiscing. It made the pain and fatigue much more manageable and worthwhile. I know a lot of people think it's cruel to suffer so much for having fun or trying to do something normal (not that this was normal) but I don't mind too much as I can justify it. It still hasn't sank in that it actually happened. No matter how many times I have rewatched that episode. But I am beyond grateful that it did. I got the chance to make a dream a reality. That's priceless. And no matter what the road ahead has in store I'll always have that. Sorry I'm being so sappy.

Again I want to say a big thank you to everyone that works at BBC shows and tours for helping make the experience even more joyful and stress free. You have a great team that you should feel very proud of. They could easily get overshadowed by the celebs and glitz and glamour but they really do add to the experience and make a big difference. I actually want to go work for them if I ever get this illness under control.

Sian X


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