So the year didn’t start well, a lack of care staff, being treated badly by people I thought were friends or at least cared about me, loss and things generally going badly in 2015. I made a decision to take control of things, sort out my health as best as possible and not suffer so much emotional pain in 2016, I have stuck to this fairly well I think, and although 2016 has certainly not been the best year I’ve had it’s been better than 2015, and sets a strong foundation for 2017.
At the beginning of 2016 I was again reliant on patchy agency care due to my personal assistants leaving, I couldn’t get up and go out often and things were generally rubbish, I put out adverts for new personal assistants, although I was scared after how badly things had turned out with the last few. I managed to find one in February for my day shifts, she has turned out to be really good, allowing me freedom again and although young she’s provided competent in a crisis, I may never fully trust anyone again, but she’s close and it’s not her fault I can’t.
In March I managed to get an appointment for a check up at the Royal Brompton, this was my first step in sorting out my health, it was a good trip with a follow up appointment arranged. In April I was back at the Royal Brompton for a weeks stay and a barrage of tests, my medications were altered to improve my health, experts seen and local referrals made, a good start to getting things back on track.
I forced myself to get up as much as possible, increasing my stamina and improving my health, I booked events so I had goals and things to keep me busy, this helped keep my mind occupied and less depressed. By the summer I was getting up most days and not getting exhausted, I managed to attend my friends wedding in Dover, visited my Nan’s birthplace of Aston and even had the first holiday of my adult life, you can see pictures on my Flickr page.
In September I finally saw the dietician, she was very helpful and I’m trying out new things and increasing my calorie intake, this seems to be working as I got weighed this month and appear to have put on a stone in weight since March! I have kept busy into the colder weather, attending the Action Duchenne international conference (my first adult stay in a hotel), going to Marvel Universe Live (my first real show) and walking the dogs most days.
This month has been a little stressful, my day assistant was away for most of it meaning getting up and going out was limited as I have to build up trust in agency carers, I was irradiational worried site would say she was leaving when she returned like one of my previous personal assistants had. I also had to let my night personal assistant go about two weeks ago, this was difficult and no fun at all, I had to put myself and others first though and he just wasn’t working out.
Then as I’m sure you all know Carrie Fisher died, out of all the celebrity deaths this year it has hit me the hardest, I met her in 2014 at London Film and Comiccon, we hadn’t had time to really speak more than a couple of words but she seemed such a nice person, she insisted on the photographer giving me two photos and stroked my beard. It was an experience I will never forget, she made me feel special, and has been part of my life since watching Star Wars as a child, I will miss her and the world seems a less special place without her.
To end on a more upbeat note here are some celebrities I’ve met this year, Sam Jones, Alix Wilton Reagan, Manu Bennett, Tabitha Lyons, Violett Beane, George Takei, Wil Wheaton, Willa Holland and Elizabeth Henstridge. There are some I didn’t manage to get a photo with that I should also mention, Kunal Nayyar, Chase Masterson and Katrina Law, they all helped bring some more enjoyable moments to my year.