Hi all, I hope everyone is enjoying what looks to be the start of Spring. It’s been another busy week or so for me, with not much time to relax and enjoy the sunshine yet. A big part of last week was Mcm Comiccon Birmingham 2019, you can find out all about it below.
I do need to make some me time to get out in nature with my camera an practice some mindful photography.
The Photography Show and Puncture
I was supposed to attend The Photography Show on the 18th with one of my good friends, unfortunately after a meeting the Wednesday before, about building a disabled people’s movement in Gloucestershire, I got a puncture! With carers on annual leave we had to pay for the local wheelchair shop to come collect my wheelchair and fit a new inner tube, they did this on the Friday.
The Friday also involved a lady from SALT visiting to try new voice amplifiers while mine is being fixed, unfortunately none were really loud enough. She did lend me a slightly better microphone though which I’m temporarily using with a portable speaker I bought off Amazon. It’s far from ideal as it doesn’t have any feedback cancellation, so my carer regularly has to adjust the volume depending on what environment I’m in to avoid ear drum hurting screeches. I also had a visit from my clinical psychologist, I do like packing things in while carers are away.
So everything was on track right? Almost, we checked the tyre on Sunday morning and it was completely flat again! As the shop only opens on weekdays this meant missing the photography show and getting it repaired again on Monday, they didn’t charge us as it was a faulty valve, but still a wasted day and wasted ticket.
Mcm Commiccon Birmingham 2019 Day One
On the Wednesday of that week I had a meeting with Barnwood Trust to go over plans for our next mental health workshop, it was a good and productive meeting, although only two of us trainers could make it.
The next few days involved final preparations and design changes for my comiccon costume, this time it was a different version of The Flash, Jay Garrick. Mum is great at making the actual costume from my designs.
I wish I could do the physical part myself but at least I am in control of the whole thing and can help with ideas on how to put it together, what materials to use etc. At some point I am going to have to invest in a 3D printer so I can use that for small parts we currently do in foam, it should make the process easier and give me even more control.
On Saturday I was up early and ready for Mcm Comiccon Birmingham 2019, I was hoping to get there by 9 AM as we aren’t that far from Birmingham. The best laid plans of mice and men as they say never quite work out.
Driving up the M5, and in the fast lane, someone started pulling in towards the side of our van. I could see this dirty, blue, jeep like car getting closer and closer out of my side window, moving very fast, my carer managed to swerve narrowly avoiding the central barrier, she couldn’t slow much with cars behind us without causing a major pile up.
He of course just zoomed away, after looking to check on me in her mirror my carer could see my head was hanging off my headrest, along with the top of my body, and my ventilator mask loose! She got us on to the hard shoulder and quickly got me back sitting in my chair properly, with mask reattached, we then drove on to the next service station to check everything else.
We arrived at the NEC about ten, shaken up and in pain, it was quicker to get there than to turn round and go home. I also thought it was probably best for us both to be able to get out, rest and de-stress a bit before travelling back.
I managed to catch up with my friend Tabby, but I really wasn’t feeling well and was in a lot of pain so we left around 3 PM. Other highlights of the day were a talk with Felicia Day, Osric Chau and The Umbrella Academy panel, but overall it wasn’t a good day for me.
Mcm Commiccon Birmingham 2019 Day Two
On Sunday I got up early again, there was no care cover the night before so my Mother kindly got up early and dressed me. We arrived at comiccon before 10 AM which was great, with pain medication and a safe journey up I felt far better and was able to enjoy the day.
My friend Tabby was doing interviews that day, the first one was with Charles Martinet, the voice of Mario, it was great fun and Tabby did a brilliant job.
I went to Felicia Day’s panel and managed to have a chat with her later in the day, I don’t think she remembered me from sending a care package a few years ago but she does have a lot of fans so it’s completely understandable. Felicia is an amazing woman who I admire greatly, so just getting the chance to have a chat and get a photo with her was amazing.
The rest of the day was also great, I met various friends, including a girl I’ve known since she was just a baby (my Goddaughter’s older sister), now cosplaying for the first time, as Zero Two :) Tabby gave me hugs which is always one of the highlights of attending these events as it’s the only time we get to meet in person, lots of people took photos with me and as always the whole thing was full of kind, non-judgmental fellow geeks.
Naidex and Aston Hall
Monday I should of rested but as it was nice out I decided to take the dogs out, firstly we took Kara for a play in a local park, she hasn’t had much chance recently to go off lead and play with her ball which she loves. After Kara we headed out to another park a bit further away with Peppa, as soon as we got in the gates I received a text from Mum saying my GP was coming round in ten minutes or so! We had taken about forty minutes to get to the park so we chose a different route and Peppa got a good run, we were back in under thirty minutes and just before the GP arrived.
He gave me a steroid injection in my shoulder as I’ve been suffering with pain in it for some time. With weak muscles around the joint the shoulder gets more strain and the shoulder pops out a bit quite regularly. I should have got in bed after this but I would have felt guilty not taking Mya out too.
Tuesday I attended Naidex, again at the NEC in Birmingham, I was hoping to find stuff of interest for people with Duchenne as trustee of DMD Pathfinders. Nothing really jumped out at me, there were the normal adapted vehicles, wheelchairs etc. but nothing amazing.
By twelve it had started getting very busy, with the amount of wheelchair users in attendance I really think they need to devise a better way of organising the aisles, maybe one way traffic flow, wider aisles and set areas where groups can stop to chat.
I decided I’d head off shortly after this, and as the sun was starting to peak out between the clouds, we headed for Aston Hall which was fairly nearby. Aston Hall has a special place in my heart as my Nan was originally from Birmingham and had lived nearby as a little girl, I remember her telling me stories of regularly visiting the place with her friend, probably in the 1920’s.
The hall itself wasn’t open but I was able to wander around the park, take photos and relax a bit. We had chats with a couple of friendly locals too, it’s always nice to feel welcome in a place, I think Nan would have been happy about this.
More Meetings and another puncture
Yesterday, Wednesday, I popped to Gloucester as I had a research meeting to attend there in the afternoon, I also wanted to get Mum a present ready for Mothering Sunday. The morning went quickly, buy I managed an hour or so after shopping to wind down at Gloucester Cathedral before heading to my meeting.
We got home around 4 PM which just gave us time for a quick dog walk before my second meeting of the day, a Zoom meeting with DMD Pathfinders. The walk was a little rushed and I got another puncture on the way back, this time in my other side wheel!
There was no time to get to the wheelchair shop before it closed and I have no proper care in again until Sunday so my carer was sent off to get a can of flat mate. So far the inner tube seems to be holding up, but I can’t properly test it until Sunday, I’ve now ordered some 4-ply thicker tyres which will hopefully help, another expense I could really do without.
Today I’m stuck in so am catching up on emails, making appointments and writing this blog post. I also had a visit from the Royal Brompton outreach nurse, as I don’t live locally to the hospital they send someone out every six months to check blood gasses, blood pressure etc.
My results were all perfect, and the nurse was very pleased, my lungs were perfectly clear and blood pressure good, the blood results also show I currently have no infections, Potassium and other levels are also great. It’s very reassuring having this regular check between my annual sleep studies in London.
I think that’s about all for now and apologies for such a long post, I currently hear Mum snoring outside laying in the Sun and have my bedroom door open letting the smells of Spring inside. I hope everyone enjoys the rest of this lovely week and I’m sure I’ll be posting again soon, but hopefully about more relaxed days.
Please also follow me on Twitter for other news and updates, also the domain https://daniel-baker.eu has now expired so please update all your links to point to https://daniel-baker.photography instead. This wasn’t an easy decision but with the Brexit shambles, and notifications that .eu domains would not be available for UK residents if we leave I had to future proof my domain name.
One final thing that I have to share is that my friend and director Mahalia Belo has been nominated for a BAFTA for her work on The Long Song, I am so pleased for her and nobody deserves this recognition more, so well done Mahalia x