A Decade of Change – 2017 to 2018, a lot happened in these two years, I was admitted to hospital with angioedema, appeared in the BBC/Netflix series Requiem, had a holiday, was presented with an award from the High Sheriff of Gloucestershire and more.
2017 – Spending time in hospital and on a TV set
The year began on a Star wars theme. For Christmas my Goddaughter bought me tickets for the Star Wars Identities exhibition in London, I visited this in January and it was amazing. Next I went to my first IMAX film, Rogue One, it wasn’t the best experience as wheelchair seating is so close to the screen you have to lean back to see anything. I will admit I shed a tear at the end too.
In May I had my second holiday of my adult life, a trip to a farm near Hastings. I had done a lot of research and preparation to ensure everything would be accessible and go smoothly, with emails written and phone calls made. I booked the holiday through DisabledHolidays.com.
Things started going wrong on the journey down. Stopping at a service station my carer and Mother got out of the van, leaving me inside with our dogs and the car keys. After a minute or so I heard “click”. One of the dogs had stepped on the car keys, locking me in! Mum, who was standing just outside the van, realised immediately, as did I. My stomach twisted in a knot, I broke out in a cold sweat and the panic started. My carer rang me on the phone and I was able to talk to her, helping stop me having a full blown panic attack. I was stuck in the hot car, worried the dogs may knock out my ventilator house for an hour!
Arriving at the cottage there was no one to welcome us or explain how things worked, we were just given a key. It looked nice at first, but we soon started finding issues. The hoist supplied wasn’t big enough, it took two carers and Mum to get me out of my chair with it, it also had to go at a strange angle to fit under the bed. The bed itself wasn’t a hospital style bed. It was a cheap electric bed, it didn’t offer head support when sat up, making things extremely difficult for me. The heating in my room didn’t work and neither did the second electric bed. I was ready to go home, but the owner came in the evening promising to try to sort things out.
The whole holiday ended up being a nightmare in the end. Nothing was fixed, the owner was rude and the animals seemed to be kept in poor conditions. To top it off the weather was cold and wet all week.
In July I was contacted by Gillian, our local MDUK coordinator, she said they had been approached by a TV company who were looking for someone be an extra in a new series. There weren’t many details at this point and I was also told someone else had already been approached too. Shortly after I was contacted by the production company, the show was called Requiem and was a supernatural drama series to air on the BBC.
I was of course very interested, sending photos and answering questions. Not long after they said I had got the part! It was an amazing experience and I made a new family. I felt right at home on set and have been keeping my eyes open for more roles ever since. You can currently watch Requiem on Netflix.
DMD Pathfinders and other Charity Work
I became a trustee of DMD Pathfinders early in 2017, this is the only charity specifically supporting adults with Duchenne Muscular Dystrophy and user led. This year I cond a mental health group supported by Barnwood Trust, giving workshops to help people understand Mental Health issues a little better. I continued working with MDUK too, becoming a member of their Content Advisory group and helping wherever I could.
This year was the first time I had been hospitalised as an adult. I woke one night with extreme stomach bloating and excruciating pain. Eventually we called an ambulance who administered pain relief, I decided, against their advice, not to go into hospital. Not long after this my GP arrived to check me over, the pain had increased again and he was very worried. There was no choice this time, he called an ambulance and I was rushed to hospital.
I ended up spending two weeks in hospital, the doctors and staff didn’t think I’d make it home, neither did I! The first day, tests showed my stomach had stopped working, possibly due to a blockage or twist. They really didn’t want to operate as with my condition surgery is very high risk, they also explained that without surgery it was highly likely I would die.
Then my whole body started to swell, my throat almost closed, it was touch and go more than once. I was on the emergency surgery list for a week, during which I was starved. Fluids and medication were given through the multiple drips attached to me. The whole week I was little willing the entire body to survive. I was barely conscious most of the time, eventually my bowel started working again and the swelling went down. I owe my consultant my life for holding off on surgery and trying every other option he could think of.
We are still not entirely sure of why this happened, the main culprit seems to be angioedema caused by perindopril (which I had been taking for many years). You can read the full story in my blog posts Two Weeks in Hospital.
The rest of the year
I managed to attend a few comiccons and improved my Wheelchair Flash cosplay, which has been a fan favourite ever since.
Although I didn’t manage to blog much this year I did start the first part of my ongoing blog series, finding Middle Earth.
2018 – Fame and recognition
After the events of the previous year I decided to make the most of 2018, a year I nearly didn’t have. The first thing I did was to treat myself and booked tickets for the Warner Brothers Studio Tour in January. It was brilliant seeing the Harry Potter set and exhibits. It was very busy making if difficult to get close to anything though, especially with tourists often blocking my wheelchair.
I received an invitation from Gloucestershire CCG to speak at the South West CCG’s Integrated Personal care conference. Originally I was asked to be part of a panel, this changed as the event approached and on the day itself I was in a room alone, delivering my experiences and answering questions to around seventy doctors and healthcare professionals!
After this I had another invite, this time from Heddi-Joy, second assistant director on Requiem and more recently His Dark Materials. She invited me to attend the Requiem Première in Cardiff. Sadly Heddi couldn’t make the Première but I did get to catch up with some of the crew, including Mahalia Belo director of Requiem and The Long Song. I also finally mett Lydia Wilson the leading actress. At this point I still wasn’t allowed to mention that I appeared in Requiem due to my NDA, I had to wait until the show aired! I have kept in touch with a lot of the cast and crew, meeting Bella Ramsey later in the year at a comiccon.
When Requiem finally aired I was able to tell the world. I was quickly contacted by the Gloucester Echo and BBC Radio Gloucestershire. I did interviews for both, appearing on Faye Hatcher’s morning show and in the paper.
While I was enjoying all this fame my cat Willow had to be put down. This was one of the hardest things in my life, and I still tear up now at the thought of seeing her go. One of the last pictures of her is the one above, taken by Faye Hatcher a couple of days before she passed away.
March saw the arrival of snow, I’ve always loved the pristine beauty that is brought by snow. It covers the landscape with a white blanket, hiding the blemishes below. I of course wanted to get out in it, my wheelchair practically glides over snow, it’s a lovely, smooth experience.
Although beautiful snow has it’s downsides, especially when you are in a wheelchair and can’t maintain body heat well. I pushed myself maybe too much at times, my mask quickly filled with condensation, making breathing awkward. My body temperature also plummeted a couple of times, especially at the top of Birdlip when stuck outside my van!
I joined a mindful photography course hosted by Ruth Davey and sponsored by Artlift early in the year. My hope was to improve my photography and learn new skills. The course didn’t focus on the technical side of photography but more on slowing down, looking around and using that to help both your photography and mental health. I think it has helped me take photographs of things I normality wouldn’t, also to look a things in a different way. The mindfulness exercises are also something I try to use now to calm down when stressed.
During the course I made new friends and have been inspired by several peoples photography skills and styles. In our last session Ruth invited me to take some portrait shots of her. She knew I struggled with them and that it’s something I wanted to improve. One of the photographs I took has been regularly used by Ruth in media, so I can now say I have taken a professional portrait shot!
I started receiving care from a new agency at the end of 2017, one carer particularly stood out. Originally she was booked for waking nights, but after my PA booked a holiday she did some days to help me out. Over time my carer concentrated more on days with my PA doing more nights. Having two people who could take me out and about made things much easier for me to enjoy my life.
The summer involved trips to lots of new places. Some of note are Barry Island, where I got stuck in the sand, West Wycombe, where the beginning of Labyrinth was filmed and Black Park. This new freedom also allowed me to try other new things, I attended my first “gig”. This was at a local pub where a Twitter friend was performing. I had a great time and I have become even better friends with Verity since. Other visits included the Sudeley castle spectacle of light and seeing my first Firework display as an adult at the end of the year.
I was also able to attend more comiccons. Meeting Zachary Levi, David Tennant, Bella Ramsey and having chats with various other celebrities including Chase Masterson and Ingvild Deila.
During the summer Brendan Coyle messaged me saying he was performing in a play in Bath. Brendan wondered if I’d like to come along. I couldn’t wait to see him again so arranged care, which proved tricky as both my PA and main carer were away. The play itself was great, with Brendan putting on an excellent performance. We also met up outside the theatre for a drink and chat both before and after the performance. Brendan and his friend introduced me to a couple of other cast members, including David Suchet.
Near the end of the year I was invited to the Gloucestershire NHS 70th anniversary awards ceremony. I had assumed they just randomly asked several members of the public along. The event was hosted at the Cheltenham racecourse and extremely extravagant. I soon realised everyone else there worked for the NHS in some capacity. It was a lovely and unique experience, although to this day I don’t know how I got an invite.
The High Sheriff of Gloucestershire
I have tried to always attend the MDUK Spirit of Christmas concert since I got my wheelchair. This year I wasn’t sure I’d make it, I was feeling extremely ill and had a virus. On the night itself it was touch and go, but I pushed myself and went. On arriving we were welcomed as always and invited to the VIP area. After a few minutes the crowd was hushed, something was going on. The High Sheriff of Gloucestershire read a speech, all about me! He then presented me with The High Sheriff of Gloucestershire Award in recognition of great and valuable services to the community
I had met the High Sheriff at the Spirit of Christmas press launch and we had chatted about various things. The last thing I expected was for this to lead an award, I don’t do what I do for recognition so that was never even in my mind. I suspect the ladies from The Forest of Dean MDUK ranch may well have given some encouragement to Charles too. I’m honoured to have received though the award and it’s now proudly hanging on my wall.
The next post in the series is A A Decade of Change – 2019 Year in review Decade of Change – 2019.
YouTube Videos and Archived Posts between 2017 and 2018
Click to open YouTube playlist for 2017 to 2018
Blog Posts –[SimpleYearlyArchive type=”1483228800-1546214400″]