A Decade of Change – 2014 to 2016

Continuing the review of my decade, here is part two, A Decade of Change – 2014 to 2016.

2014

I had wasted a great deal of my life since graduating from University, at first it was a quest to get help and a proper diagnosis of why I felt so ill.  Not long after that my panic attacks started and I ended up pretty much bed bound.  Then the fight to get a new wheelchair wasted another couple of years.

In 2014 I started finding my footing with my newly found freedom.  I started becoming someone new, even Mum said I was maturing.

My work with DROP continued, helping build a basic website and sorting out personalised email addresses.  Attending meetings in person, taking training and helping deliver workshops greatly helped my confidence.  I was still a shy, reserved person at this point and easily embarrassed at times.  But people like my friend Iain, who helped found DROP, were seeing something in me that I couldn’t.  They saw someone who could be strong and had a future, who could maybe help change attitudes and help others.  Not a second class citizen, scrounging on benefits, with nothing to give back to the world.

A year of firsts

This was a year of many firsts, In January I managed my first long trip.  I hadn’t managed to visit my specialist at the Royal Brompton hospital in many years, now I felt I could.  After a thorough check over with pretty good results, I was completely exhausted, but I had coped.

I also started doing more “normal” things, beginning with going to the theatre with a close friend.  It was a lovely night out and we both enjoyed ourselves.  I visited other places with friends too, like the cinema (seeing my first 3D movie), WWT Slimbridge and more. I was no longer confined to four walls while catching up, we could go out and share experiences.

Daniel Baker with Francesca Stavrakopoulou in 2014

Me with Francesca Stavrakopoulou in 2014

My Twitter friend Francesca Stavrakopoulou was hosting a talk at the Cheltenham Science Festival.  So that’s another two firsts, meeting her and also attending the festival.

In March, encouraged by a friend, I did my first cosplay, dressing as Iron Man for MCM Birmingham, and also had a my first celebrity photoshoot.  I became the first person in Gloucestershire to be on their Personal Health Budget scheme.

Attending my first huge comiccon, LFCC, I met Stan Lee and Carrie Fisher amongst others.

A train trip to Bristol Zoo was the first time I’d used the train as an adult.  I also visited Parliament.  March was my first time on a red carpet, I had won a ticket to the première of Divergent, a pretty amazing experience.

Another major first was a visit to Hastings, I hadn’t been in many years or done such a long journey.  I had a lovely day, meeting up with family and wandering the seafront.

CIMG3661

There were many other firsts, attending a Star Trek convention was something I had dreamed of since childhood.  I finally managed this in October with my nurse Berni.

Media and Blogging

This year I was also more involved with the media doing interviews and campaigning.  I appeared in the Gloucestershire Echo and on BBC Radio Gloucestershire.  My blog became more personal rather than a technical or campaigning site, I opened up about my disability more too.  I became accepted into the “Mummy blogging” world and made many new friends there.

Towards the end of the year I received a grant from Barnwood Trust for a DSLR camera.  This was amazing and took my photographs up a level also making me learn new skills.

There was still sadness and also many struggles.  One Mummy blogger lost her child, the beautiful Matilda Mae, the community was hit hard by this and we all shed tears.  My panic attacks were less frequent but happened still.  I was also having to go most places with my Mum as day care wasn’t fully funded.

2015

This was my year of hell, that’s not to say there weren’t good times, but the heartbreak and sorrow outweighed them.

MND Sucks

a picture of me and my Aunty Cyndy

Aunty Cyndy and me

Late in 2014 my Aunty Cyndy was diagnosed with Motor Neurone Disease, in March she passed away.  She had lived next door to us for many years and her loss effects us deeply to this day.  I had not seen MND before so didn’t know how awful it was, how it strips your dignity and pride, how it takes away your voice and drains your will to live.  I couldn’t imagine anything worse for such an active woman, who liked nothing better than walking her dogs and talking to neighbours, or even random strangers.

More Loss

Dexter Hitching a ride at Staverton airport

Dexter Hitching a ride at Staverton airport

A few month later our dog, and Kara’s puppy, Dexter also died, partly due to the vet not taking our concerns seriously since he was born.  I still can’t talk about what happened easily so won’t go into it here, but it was horrible and heartbreaking.

My blogging almost stopped, I was emotionally pretty broken. People I cared about also left my life, I felt betrayed by many people too.  I did make stronger friendships with some though, ones who supported me no matter what, were always there and gave me the love I needed to go on.

The Positives

There were some positive moments too, I managed to get more funding for day staff and hired a new PA.  This gave me more independence and I was able to visit new places.  I attended several comiccons, which are my safe places where I feel I belong.

By the end of the year I became a stronger person, I also put some of my old barriers back up, not sharing so much with people.  I had become too open and honest, this can be a good thing sometimes, but it also opens you up to a lot of pain.  Some people can cope with that pain, and I admire them for it, for me it’s dangerous.  I am still more open than I was in the past and will share experiences to help others, but I will hold some things back.

2016

This year I hired a new PA for longer hours, this lead to far more freedom than I’d had in years.  She was happy driving me anywhere and a quick learner.  I set myself some goals to sort my health and care out and become fit so I could try to enjoy my future.

Brompton

One of the first things I did was book myself for a checkup at the Royal Brompton, this turned into a two night stay instead of one.  They also asked me to come back for a longer stay the next month to run more tests.

The second stay was for seven days, it went well and I blogged every day.  Everything went well overall with good results and I managed to visit a few places in my favourite city of London while I was there.

Trips

I managed a lot more trips this year, making the most of my new camera.  Some notable places were Kenilworth castle, Croome, Slimbridge, Warwick castle and Dyrham amongst others.

I took one of my Aunts to Aston Hall, a place my Nan used to talk about often, she had grown up nearby and often visited.  It was a special day, connecting with my Nan in some ways even though she died several years before.  We even visited the street she had grown up in and took a photo outside.

There were also lots of comiccons, meeting people like George Takei, Wil Wheaton, Manu Bennett and dancing with Katrina Law.  I finally managed to get a photo with my friend, the awesome Tabitha Lyons, at one too.

Holidays and Hotels

This was another year of firsts as well.  My first time staying in a hotel as an adult and my first holiday as an adult.

Photographs from Wales 2016 Powys Castle

Wales happened by chance, one of my regular carers had been asked to help out at an accessible farm there, she agreed on the condition I could come too.  We spent a lovely five days in an accessible cottage.  The weather was beautiful every day bar one, allowing us to visit Powys Castle, Halfren forest, Aberyswyth, Pistyll Rhaeadr and more.

The cottage was lovely, although my room was infested with flies, waking me up every night by landing on me and buzzing around.  I was able to take my Mum, Aunt and our dogs with us too which turned it into a proper family holiday.  Sadly the farm closed down shortly afterwards and I have only been on one holiday since, that second holiday was a nightmare and has put me off planning another one.

Looking out from the hotel over London at the Action Duchenne international conference

Looking out from the hotel over London at the Action Duchenne international conference

In November Action Duchenne held their International Conference and invited me along.  They offered to pay for everything and provide a hoist, electric bed and accessible room, it was an offer too good to turn down.  The hotel was the London Hilton Metropole, it was stunning!  I really enjoyed the stay and the conference itself.

That was pretty much it for 2016, except managing to hire a second PA near the end of the year.

The next post in the series is A Decade of Change – 2017 to 2018.

 YouTube Videos and Archived Posts between 2014 and 2016

YouTube playlist for 2014 to 2016

Click to open YouTube playlist for 2014 to 2016

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