There was no real way I could top 2018, but I have tried my best to get out and about, so here’s A Decade of Change – 2019 Year in review.
The year had some highs but also lots of sadness. My care, health and wheelchair have also caused lots of issues and stress and I’m honestly glad we are now in a new year.
Parts of this post may be triggering for some people, please don’t read it if you feel it may have a negative effect on your mental well being.
This year hasn’t been all bad and it’s good to focus on the positives, so I will start with some of those.
The beginning of the year saw me visiting my old University, Oxford Brookes, for an interview with the Alumni officer. This was the first time I’d been back since graduating over twenty years ago. The place had changed a lot, but it also felt familiar and gave me the urge to study there again.
Following this was an exhibition of work from our Mindful Photography class. This was my first exhibition and it was very enjoyable. The weekend was somewhat exhausting but it was great to see how popular it was and chat with the visitors.
Being able to attend my friend Verity’s album launch was another highlight. Verity and her band have worked so hard to get where they are today, they also put on an awesome performance.
I attended lots of comiccons too, mcm, Collectormania, Wales Comiccon, Destination Star Trek, Geekmania Gloucester and LFCC. Highlights of these were long chats with Karen David, Annette Badland and Robin Curtis.
The beginning of of the year began with my wheelchair cutting out more regularly. My care agency began letting me down more often by not covering shifts or listening to my concerns. My Mother had an operation on her knee which proved unsuccessful. Then my bed broke down leaving me stuck for 24 hours without food or drink. I also had punctures on my wheelchair and the van’s tail lift broke down.
I have since replaced all the tyres and the power module on my wheelchair, in the hopes it will last me another couple of years. The reality is though that I’m going to have to start approaching charities and doing some fundraising very soon!
My anxiety has increased and I eventually fired all my care agency staff except one. This wasn’t an easy decision and we had warned both them and Continuing Healthcare what would happen if things didn’t change. The stress had become too much and was making me ill. We hoped a new agency would be found quickly.
We have been through several agencies since, none providing full cover. They all want more hours and money but don’t provide a safe or understanding service. One quit after three days, Supposedly because my care was too complex (they had done an assessment and knew exactly what they were getting themselves into). Another proved awkward from the start. They put demands on us, then providing inconsistent care and carers. They promised care and then left Mum to cover the shifts. Eventually they quit saying that I was cancelling too many shifts.
The replacement agency is poor and Mum has a knee replacement soon. Continuing Healthcare have agreed to six weeks of full care, which is amazing. Of course there’s still an issue, we only have two carers who are safe. They can’t work 24/7 for six weeks. We’ll sort out something though.
In August I woke up to an extremely bloated stomach and awful pain. My mind immediately flew back to my hospital admission in 2017. After the pain didn’t ease we called my GP out. As soon as he walked in and looked at my stomach, he said, “That’s not normal is it?”. Then he rang an ambulance. They arrived quickly and I was soon in Cheltenham general A&E, wired up to monitors and a drip.
I had an X-Ray and a scan, after viewing these I was officially admitted with a pseudo blockage (the same diagnosis I had originally back in 2017). I lay on my bed on the ward anxiety high and feeling very ill. Eventually the specialist arrived. After reviewing the scan again, and checking against my discharge scan from 2017, he was happy for me to go home. There was obviously something going on. He wasn’t worried though as my stomach was still making noises and working.
I received a message on Facebook in April from an ex-carer, the news was shocking and completely unexpected. Berni, my nurse and friend for many years had died. She had suffered a massive aneurysm! I was shocked and sad, we hadn’t spoken since she resigned (we were both extremely stubborn people). I had always expected to see her again one day though. We had been like family for a time, I wasn’t sure they would want me at her funeral, but I needed to go. I checked with her family who were pleased I wanted to be there.
For the funeral dressed smartly, but wearing my Star Trek socks, my Star Trek pin badge and my Star Trek uniform top under my jacket. I think Captain Bernadette would have approved. The funeral was heartbreaking, her children’s, some still very young, eulogies had me in tears. The crematorium was packed, she had touched so many lives and deserved that. I was sad it was too busy for me to get close enough to DeeDee to talk to her, I tutored her for a while and she still means a great deal to me.
In July I received a message, this time on Twitter, from my friend Ruth’s account. Ruth often vanished for a long time and would then just pop up with a message. This time it wasn’t her though, it was her husband. He knew I was close to Ruth. Although only ever talking online we had been through tough times together, both offering each other love and support over many years.
Ruth had taken her own life. I knew she had suffered so much over the years, losing three children and then her Mother. I knew the deep pain she had felt, we had talked many times about it and she had wanted help, someone to listen. This time she hadn’t reached out to me, or her other friends, she had made her decision. I love Ruth and I feel great pain and miss her, but she felt this was her only way to escape her pain, I will never judge or be angry at her for that.
I feel for her family, her children, her husband, her friend Kylie who loved her so very deeply. There’s nothing I can do to take away their pain, but I will do what little I can. Ruth’s family are as amazing as her, I had never spoken to her husband before she died. I knew of him only from what Ruth had told me, a good man she loved very deeply. I can now call Greg a friend too.
Later in July I got another message on Facebook from an old school friend. More news I couldn’t bear to hear, Dryden, my best friend at primary school had died in a car accident. This time I felt a numbness inside along with the pain, my brain was trying to cope, I’m not sure I’ve come to terms with everything even now if I’m honest.
I hadn’t seen Dryden since we were teenagers, we were inseparable back then, getting into mischief and having fun and adventures. When I left Hastings we lost touch for a while, eventually reconnecting on Social Media. My last trip to Hastings was stressful and I hadn’t met up with any friends, but I had promised him next time I visited we would meet up.
Now we wouldn’t get that chance. His brother, who I remembered as a child messing around at the dining table when I visited the family for dinner once, invited me to the funeral. Hastings is a very long drive and I wasn’t sure my carer would agree to drive there and back in a day. I was lucky and she did.
I managed to get to Hastings in time for the service, meeting his family outside. They welcomed me with open arms, “you are family I was told”. The service was a lovely one, everyone was strong, there were tears but it was about sending Dryden off how he deserved, with respect and love. One eulogy mentioned the special friendship between me and Dryden, which touched me deeply. I wasn’t able to go to the crematorium, or send off at a local café afterwards due to time constraints, but I am glad I managed to get there. I needed to say goodbye to someone who was like a brother.
I’m sure you are either bored, or extremely depressed, by now so I will move on to more positive things again.
This year I have spent more time with Barnwood Trust than ever before. I have continued working with the mental health group they help to facilitate, but have also taken on other roles.
Barnwood Trust moved it’s base this year to Overton House in Cheltenham. This building is far more accessible and welcoming than their previous offices. It is also only ten minutes drive from where I live, making it easier to visit.
During the year I have built a better relationship and understand of the Trust than any time before. Barnwood seem to be making a big effort to make new and deeper connections with people and communities. This year I have been invited to take part in Mental Health and wellbeing at Work training , a private showing of the play Statements and a leaving gathering for the lovely Molly. I feel much more a part of their community and have developed working relationships, and friendships, with many more of the staff.
I have also been doing new and challenging things with the Trust. Such as co-facilitating, and being a critical friend, for group stocktakes. One very new style of involvement with the Trust was being part of a group looking at internal communication. I was very lucky to have been given the role of leading this group of both Barnwood Trust staff and friends of the Trust.
The project tested me in many ways, teaching me new skills and making me adapt for each group meeting, trying to get the best from everyone involved and not leaving anyone out. I was supported throughout the project by the great team who work at Barnwood. But I was also given the freedom, and trust, to run the project how I wanted.
I have visited lots places this year, some I know well and others new. Two of the new places were the Malvern Hills and Oxford town Centre, visiting these places led to my second blog post in my “Finding Middle Earth” series. Exploring is always fun so finding new places in Gloucester was a very pleasant surprise, we ventured down the canal paths finding hidden parks, open spaces and wandering livestock.
I also returned to places like Barry Island, Slimbridge, Black Park and West Wycombe to name a few. On a return visit to Gloucester I was pleasantly surprised to find Jodie Whittaker talking to fans outside the Cathedral. I was lucky enough to grab a photo with her before she headed back inside to film scenes for Dr. Who.
One person I definitely can’t leave out of this post is my Goddaughter Coral. Coral used to live in the same block of flats as Mum and myself. We have known her since she was born and she’s become more than a Goddaughter, she is family. Earlier this year she visited with some exciting news, she was pregnant! It was a surprise but also lovely news, she wanted us to be two of the first people she told, she also wanted us to be a big part of her daughters life.
On December 23rd Reme-Rose was born, later that same day Coral brought her round to say hello. I saw Reme-Rose twice in that first week and got some lovely cuddles. I’m sure she will become another big part of our family and I’m hoping to spending as much time with her and her Mother as I can over the coming years.
Rounding up a Decade
Writing these last few posts, and also seeing the amazing article Kim Horton wrote about me this year, has made me reflect on the changes in my life over the last ten years.
I began the decade bedbound, with severe panic attacks, depression and agoraphobia, with no hopes or ambitions for the future. My life wasn’t awful, I had friends, I was doing things that I had a passion for. I was confined to my own four walls though, friends would have to visit me or talk online, there was little face to face social interaction.
At night I was awake talking and working with people in different time zones. In the day I slept, it was a routine I got used too. I still now generally sleep with my light on, feeling ill otherwise.
Now I have a wheelchair , visit places like London, Wales and Birmingham fairly regularly, help charities and can’t stand being indoors. I still have anxiety and low days but they are mostly under control.
I am also different person now, one who gives talks and presentations without embarrassment, regularly does interviews, talks to celebrities, has been on television and has earned recognition from his county.
None of this would have been possible without the support and encouragement of friends who understood me. It would also not, I am sad to say, have been possible with help purely from the state. Both Mental health professionals and wheelchair services, amongst others, let me down, not giving the support or equipment I needed. But I am grateful in a way, without my struggles I wouldn’t have seen the power and love communities give. That the press, with kind hearted reporters, has the power to do great good, or that I’m not alone.
YouTube Videos and Archived Posts between 2019
Click to open YouTube playlist for 2019
Blog Posts –