February 2018 Favourites

Well, what a way to start a new month, with snow all over the place! Winter has seemed very reluctant to let Spring take over, but hopefully things will warm up in the coming weeks now.

And the cold weather didn’t stopped February from being an eventful month. Following on from my January 2018 Favourites, it’s now time to look through what I’ve been enjoying in February. And even though it’s the shortest month, I seem to have packed quite a bit in! So I hope you enjoy this post and video for February.

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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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2017 Review – My First Year In London

As I mentioned in a recent blog post, this Christmas marked my first anniversary of moving to London, and 2017 has been an amazing year.

I said it in that post, but it’s worth saying again – thank you so much to everyone I’ve met and interacted with during the year, whether it be in person or online. By reading, liking and sharing my content, leaving comments, asking questions, sending me private messages and emails, giving me opportunities for guest posts and public talks, and even meeting up in person, you’ve helped to make this year a very special one for me. Especially Fashioneyesta, Aniridia Network UK, Nystagmus Network, East London Vision, South East London Vision, Thinking Bob, VocalEyesRNIB, Scope, Life Of A Blind Girl, My Blurred World, Luke Sam Sowden and All The Stations, but also everyone else that I’ve had any kind of contact with during the year.

Everyone has been very positive and supportive, and your involvement has enabled me to start this new chapter in my life with confidence and comfort, and fun and friendship. And for that I’ll always be very grateful. 2017 will forever be one of the most significant and happy of my life, nothing will take that away. I hope everyone else has had a good 2017 too, and I hope 2018 is a very prosperous and Happy New Year for you!

So I wanted to do an overview post, running through the things I’ve been up to in the busiest year of my life to date. It’ll give you a good sense of how things developed, and will allow you to check out any blog posts or videos you may have missed if you only found me relatively recently. You can also check out a comprehensive list of places I’ve visited on my Out & About Adventure page at any time. I also recommend you look back through my Youtube videos, especially my London videos and disability videos as there’s no way I can list everything here. And there are loads of Instagram photos you can enjoy as well. So I hope you enjoy my little journey down a very busy memory lane!

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Treats, Terror, Tea & Theatre

Time for another catch-up on what I’ve been doing lately, and with this past week including Halloween, it was only fitting that I did a couple more things to celebrate the occasion, following on from the Ghost Bus Tour I did the previous week But I’ve also been to a couple of other things too that aren’t related to it. All in all, I’ve been entertained at a museum, the cinema and the theatre, and tried another dining experience that’s new to me. So I’ve had a nice bit of variety, and I hope you enjoy reading about it.

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Warriors & Wizards, Drones & Dinners, Crafts & Chocolate

This past week has been a very busy one, as I’ve been to an audio described exhibition, an audio described theatre show, a football field for a Youtube project, a new social group, a craft show and a chocolate show. So Iin this post I want to summarise it all and bring my activities up to date.

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Building My New Social Network With A Visual Impairment

I’ve shared overviews of this story as guest posts on Scope’s community forum and the Nystagmus Network’s newsletter. Many thanks to them both for featuring me! And if you’ve found me via one of those articles, hello and welcome! 🙂

On September 30th, I gave a talk at the Nystagmus Network’s Open Day about how I had been building a new social network for myself in London. It was my first time giving a public speech about myself, but it went really well. I spoke for about 15 minutes, then we had a group discussion for the next 15 minutes. It got a very positive response, and I got chatting to many people as a result of it, so I was very happy with it. I’ve written blog posts about how I prepared for it and my experience at the Open Day, as well as publishing a vlog of my trip on Youtube.

So this post is a written version of that speech, and I’ve posted a video version that I filmed on the same evening. Both are longer than the actual speech I gave at the Open Day, as without constraints on time or length I’ve been able to explain things in a bit more detail. So the actual speech was a slightly more concise version of this, although 15 minutes was still quite a bit of time to fill!

Obviously my situation is unique to me, and everyone’s circumstances will be different in their own way. I’m just giving examples of the things I’ve done. The overall aim is to show that it’s important and worthwhile to try things that interest you and grasp opportunities when they arise, as you never know what will result from them. You may have to push yourself out of your comfort zone a bit, and I know that can be easier said than done. It was a challenge for me, and it still can be sometimes. But the more you try things, the more confident you’ll get, and you’ll soon start to reap the rewards of your efforts. Otherwise, you’ll always be asking yourself ‘what if’, which is never helpful.

So I hope you enjoy reading this. Thank you to Sue Ricketts and the Nystagmus Network for asking me to share my story at the Open Day, and to all those who responded to it so well.

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