Rare Disease Day Photo Challenge

Update (March 1st) – I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂

Happy Rare Disease Day! 🙂

Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.

1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.

There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.

This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.

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January 2017 Favourites

Well, here we are then. After all the planning we’ve done and the curveballs that have been thrown our way, my mother and I are finally living in London! 🙂 We’ve already had our first Christmas as new residents, and now 2017 has got off to a very busy and interesting start.

So I want to bring you up to date with what I’ve been doing over the past few weeks. And instead of posting journal entries like I was doing in Devon, with everything randomly mixed together, going forward I want to try and write more structured Favourites posts each month, where I share the things that I’ve been enjoying the most in the city and elsewhere. The aim is to include details of social events, museum exhibitions, theatre shows, walks, travel, TV, films, music and anything else that takes my fancy.

This first month has been all about settling in of course. There have been plenty of things to sort out at home and regarding my job, but I’ve also got out and about a lot too. In particular, I’ve attended several events by a social group called Thinking Bob, who I’ve been curious about for a while, plus I’ve also been to a museum and had a few nice walks. So there’s a lot to get through here, and I hope you enjoy it!

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Homeworking

I consider myself to be very fortunate to have retained a steady job for 12 years now. For many (far, far too many) disabled people, gaining employment is way more difficult that it needs to be, and attitudes still need to change in many areas. So I do count myself lucky, and I’ve worked hard to keep my position, by doing jobs promptly and to the best of my abilities, and earning the respect of the colleagues and customers that I interact with. And I do like the work, because of the people I share it with, the variety of tasks that I do each day, and the fact that I’ve learned a lot from it over my time there.

Moving to London, however, led me to assume that I would have to ditch that job and get a new one. Not necessarily easy, given that there are so many people in London also looking for work no doubt, coupled with the fact that I have a disability. But I would at least have a good deal of experience to build on and promote myself with. And maybe there would be better opportunities for training and a higher salary with a London-based job. So I was very prepared to go down that route. If it took a little while to find work, so be it. There would be no harm having a change, so it would be worth the effort. But as it turned out, that was one less thing to worry about.

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Journal – Christmas 2016 (Moving To London)

Finally, after nearly 120 journal posts – and thank you so much for reading if you’ve gone through some or all of them – my mother and I have now moved away from Devon into my Nan’s house in London, which we inherited when she passed away.

So in this post you’ll find out how we’ve settled in over the festive period, sorting through various bits and pieces, having problems with BT, going shopping and taking some nice walks. I also got to see my best mate and his wife who were visiting the city, signed up for some social events in January, watched a lot of TV, and was shocked to hear about the deaths of 3 very popular entertainers.

Going forward, I’ll be sharing my (hopefully many) adventures in London in a monthly roundup format, as I’ll explain at the end. But for now, I hope you enjoy this bumper post about my long-awaited arrival in the capital!

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Journal – December 2016 (Moving Preparations)

Welcome back. We’re literally on the home straight now with these journal posts, as Mum and I have been getting ready to make the move to London at long last, and arrangements are being made for me to start homeworking. So I hope you enjoy reading about our final preparations!

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Journal – October-November 2016 (London Visit)

Welcome back to my latest journal posts. There wasn’t anything worth writing about in September, but recent weeks have been pretty eventful.

Down in Devon I’ve been to a stand-up comedy show with some work colleagues, and there are updates on our house sale too. I’ve also paid another visit to our new place in London, where my Aunt gave me a little tour of the local area, I went to the Sight Village exhibition and an aniridia meetup, I oversaw the installation of a broadband line for homeworking, and I made contact with a fellow blogger I’ve been following for a while. So I hope you enjoy it all!

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Journal – August 2016

Hello again. We’re still edging towards our hopeful move to London, as we’ve had more viewings of our house in Devon this month and I’ve been doing some research into socialising in the capital, plus I’ve celebrated my birthday of course. So I hope you enjoy these journal posts as always!

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Journal – May-June 2016

Welcome back to another set of journal entries. Things were pretty quiet between February and April, hence I’ve waited until now to do an update. So there’s plenty to mention here, including good news about our planned house move, my first proper attempts at blogging, some notes about the elections and EU referendum, and more. I hope you enjoy!

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Journal – December 2012 (London Weekend)

Following my Nan’s death, my mother and I have had another weekend trip to London this month. So that’s the main topic here, along with other little bits and pieces including initial thoughts about homeworking, a news story about a prank call made by a pair of Australian DJs, and a bit of humour sent to me by a friend. I hope you enjoy!

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