Thursday, 9 August 2018

Powerchair Update | 6 Months On

Back in May I started off my 3 month powerchair update by talking about how I couldn't believe how time had flown by so quickly and I could quite easily start this post off the same way because already another 3 months have passed and I've now had my new powerchair for half a year. I'm not sure at which point I should stop calling it 'new', I feel like I could blink some days and I'd be sitting here writing my 1 year update and other days it feels like only yesterday that my life changing gift was delivered.

I did so much in those first 3 months, including my first theatre trip in nearly 2 years, doing 2 photoshoots and going on live TV! I felt like I couldn't top it but at the start of every month I find myself remarking on how many exciting plans I have, I'm waiting and waiting for the moment I come back down to earth but it hasn't come yet.

I wasn't planning on doing regular updates but I think these posts are a good reminder of how much of a difference the right wheelchair can make to a persons life. Obviously in my first post I covered in detail how life changing my powerchair has been and I don't want to end up repeating myself too often so I think the updates that follow it will mostly be about everything I've done, everything I've achieved because of my powerchair. Almost like my calendar laid out, but with photos and explanations!

Photo by Maciek Tomiczek

Changing Places Campaign 

On May 11th I attended my first in person campaign, and that was Sarah Brisdion's Pants Down 4 Equality Looathon to raise awareness of the need for more Changing Places, something I've talked about on my blog before. It was so good to be a part of it and I ended up staying a lot longer than I anticipated, made possible by my powerchair. Changing Places aren't something I personally need but thousands and thousands of disabled people do and the countless stories of disabled children being changed on the floor and disabled adults having unnecessary surgery to place permanent catheters should be enough for anyone to want to help.


BHF Interviews

As you might know I've been involved a lot with the British Heart Foundation over these past few years, being in their patient advisory group and working on smaller projects every now and then too. A few months ago I got the opportunity to sit on an interview panel at the head offices to interview candidates for a role that would be very centred around patients, so it made sense to have a patient on the panel. It was an incredible opportunity and we interviewed in May and July, I learnt so much from the experience and came to the conclusion that teenagers should be the interviewers when practising interview skills because you learn so much sitting on the other side of the table! After each day I crashed for several days after, my powerchair can't solve everything sadly, but I never would have been able to accept the offer to be involved if I still had my old, unsuitable powerchair. Little things like the swing away joystick made a big differences on those days too, I was able to get right up to the table like everyone else and my cup holder was handy for my coffee for the 9am starts!


Leeds 

Some of you may know that I spent one year living in Hull (I moved back to Hertfordshire in Autumn last year) and there isn't much I miss from that 'experience' but living near to Leeds is definitely one of them. For me Leeds is everything good about London, but without it being so busy and loud that you can barely move and think. I've also still got friends up there so I planned a trip, a few days away, for during May. It was so nice to just get away and relax, do some shopping and catch up with Kat and Chloe. I also finally got the piercings I'd wanted for years, there isn't anywhere accessible near me to get piercings or tattoos and I knew of a place in Leeds with alright access so it made sense to get them done! The journey to Leeds on the train takes several hours which used to end in me being in tears due to pain with my old powerchair but now I can tilt back, manage my pain and enjoy the journey. I'm actually heading back up there next week as part of my 21st birthday celebrations!


West End Live 

As a musicals fan West End Live is an event that has been on my radar for several years now, but it's such a full on day (or a whole weekend if you're brave!) that it's never been possible in my old powerchair and certainly not in my manual wheelchair. It was probably the longest and busiest day I've spent out the house so far and it still took me days to recover but it was so worth it. I tilted back quite far in my powerchair throughout the whole day and this kept my pain at bearable levels.

My Mum came with me, I inherited my love for theatre from her, and we had so much fun together! This was the catalyst for the long list of shows we booked afterwards, everything from Everybody's Talking About Jamie to Heathers to Kinky Boots. We both loved being able to sing along at West End Live, something that you can't and shouldn't do in theatres, we especially loved belting out One Day More from Les Mis! As I say, it was exhausting but I smiled so much that day and was just beaming by the end of it. Meanwhile, my bank account was being drained, it might be a free event but wow, you will make up for that with how many shows you book after!

Photo by Maciek Tomiczek

Oxford with Quantum

One of the goals on my 2018 plan was to visit 3 new places this year, and finally 6 months in I made a start on that by visiting Oxford for the first time! I was very kindly invited up to Oxford by Quantum, the company who make my wonderful powerchair, to explore the city and tour the HQ where the magic happens. I won't spend too long on this because I actually wrote a whole post about my experience, including the photos from our day in the city centre. It was amazing to see where my chair was made and meet the people who take it from an order on a piece of paper to a fully functioning piece of equipment. It was fascinating!

Whilst I was there they even made some changes to my powerchair! They gave me new castor wheels (the 4 small wheels) because I'd done nearly 250 miles by that point (I'm close to 300 now) and they were starting to wear out, as well as changing the drive wheel accent colour from silver to black to match the rest of my powerchair and they even added a USB charger port so I can now charge my phone from my powerchair! I don't need to worry about taking a portable charger with me anywhere now, I just plug my wire in underneath my left armrest and I'm good to go, it doesn't use much battery either.


London Pride 

Last year I attended my first Pride, which was Hull Pride, after having come out as bisexual not long before that. I'm lucky that the people I love around me just accepted it immediately and didn't question whether it was just a phase. Attending Pride and being involved with the LGBT+ community was something I had a lot of nerves about though, I'd seen a lot of biphobia online and as a disabled person I also didn't feel particularly welcome due to poor access and inclusion of minority groups. I finally found the courage to attend London Pride last month though, I really had no idea what to expect and I was attending alone but I can honestly say that I had so much fun. I felt like I could totally be myself and I had much more confidence than usual. I talked to the strangers around me, blew kisses back and forth with Richard Arnold (ITV presenter) and sang Spice Girls songs as loud as I could.

I used the iLevel on my powerchair (the rise function that puts me at eye level with people standing) to help me see over the barriers and get the best view possible and it helped so much. I get a bit of anxiety in crowds and I think I would have struggled a lot if I had been at waist height with everyone surrounding me, so I was very grateful for the iLevel on my chair! Unfortunately the heat that day was horrendous and I chose the side of the road that was in the sun (lesson learnt) so 4 hours in and I was pretty exhausted and so started to head home! I'm so ready to do it all over again next year though, and hopefully it will be a little cooler.
Bat Out Of Hell The Musical

If you follow me on Twitter then you'll know that over the past 6 weeks I've developed some what of an obsession with Bat Out Of Hell The Musical. I first saw them perform at West End Live and the mixture of incredible vocals and memorising choreography had me hooked and I booked my first ticket not long after. There's a full review of what I think of the show on my blog and seeing it twice more after that has only made me sing it's praises more. I'm constantly listening to the cast recording and so far I can't go 2 weeks without seeing the show! The access rate ticket is only £15 which is only helping to feed my love for the show, because it's just so affordable compared to my other favourite, Les Mis, for example.

I even went to stage door the last time I saw it and the cast and other fans couldn't have been nicer, I was there for at least an hour, if not longer, and thanks to my tilt and recline functions on my powerchair I was able to manage my pain and not have to worry about the time. I even got some compliments on my powerchair from the other fans and cast, and had a conversation with Rob Fowler (who plays Falco) about some of my suggestions on how to improve access at the theatre, I was so surprised when he asked me! Improved access at theatres is something everyone should care about, not just disabled people, so it was a pleasant surprise. I've asked for tickets for the show for my 21st birthday so I've got at least 2 more trips planned for the next month too, honestly I need to be stopped!


Everybody's Talking About Jamie

Believe it or not, I do still have interest in other musicals though! Another standout from West End Live that me and my Mum both loved was Everybody's Talking About Jamie, we were interested beforehand but it really was their performance of And You Don't Even Know It that had us hooked. I won't say much because I've got a full review coming soon but we both had a lot of fun and the second half in particular was fab! It was also the first time I'd sat in the stalls as a wheelchair user and the first time I'd been able to see the whole stage from a wheelchair space, which was just incredible. It's a shame that it's such a novelty for me but I was just enjoying every second of not twisting and moving my body to see as much as possible. The tilt on my powerchair also came in handy because the incline was quite steep, so tilting back helped me to sit level rather than really far forward. I was also very grateful for my powerchair being mid-wheel drive with a small turning circle as the platform lift wasn't very big!

Photo by Maciek Tomiczek

I've done so much throughout these past 6 months, more than I could have ever imagined and I truly am catching up on the years of life experiences that I've missed out on. During this past month though I've also been struggling with some guilt and I'm finding myself justifying everything. Even now I want to explain and justify things.

I spoke about this a little on Twitter and everyone reminded me that they donated to my powerchair because they wanted to see me doing these things, they wanted me to have those experiences. Being reminded of that has helped but I think I will always have some guilt for as long as I'm reliant on benefits for, society is very good at making you feel guilty for spending money on anything that might be considered fun or extra when you rely on benefits. Hopefully with time I'll be able to care less about those opinions though and just focus on living the best life I can.

For now though, I'm looking ahead to all of my exciting plans which include a trip to Leeds, my 21st birthday, plenty more theatre trips and the Superhero Series Triathlon!
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2 comments

  1. This is a fantastic post , I've not read your previous posts but I'm certainly going to have a look at your blog. I'm so glad you are able to do things you couldn't previously . I am also super super jealous of getting to go sing along to showtunes ....my dream!!!!
    Congratulations , someone loved this blog so much they added it to our #blogcrush linky

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