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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All In A Day’s Work

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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New Year, New Start

Here we go then. 2017 is going to be very interesting indeed, as shortly before Christmas my mother and I moved to London! Hence I’ve been very quiet in this blog recently. Relocating has been the plan for some time, but thanks to curveballs of one kind or another being thrown our way, it’s only during the past year that it’s finally come to fruition. It does feel like now is the right time though, and we feel that it’s been worth the wait to get this much needed fresh start.

I love London, and already feel very comfortable here, having visited regularly in the past because of relatives we have in the city. And the home we’ve moved into is one we’ve inherited. So we know the house, we know the area, we know how to use the trains and buses to get around, we know many of the attractions, and I’ve also familiarised myself with apps like Citymapper and Street View to help me get around. So in terms of navigating the city, I don’t have any concerns there, and have already been doing a lot.

Which is where this post comes in, as I want to summarise what I’ve been up to during my first full month in the capital.

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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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