July 2018 Favourites

Time for another monthly favourites post and video, looking back at July. Things were very busy and successful on the blog and social media this month, I enjoyed some fun social events, museum visits and other entertainment, and I even got a bit sporty for once, all while enjoying the sweltering heatwave. So it was a pretty good month, and I hope you enjoy my review of it.

And if you do enjoy reading about the things I get up to, I would love it if you would consider sponsoring my charity abseil in September. That would mean a lot to me. A massive thank you to my amazing sponsors so far! I’ll keep updating that shoutouts page as donations come in, including links for fellow bloggers, so do chip in if you want a mention. You’ll also get mentions in my videos as well, as a couple of people have done in this case. Quite a few people have donated since I filmed the video last week!

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The Sunshine Blogger Award

I enjoy doing Q&A tag posts, whether they’re disability related or on other topics, as they’re a nice way to connect with other bloggers so we can get to know each other better, and it’s also lovely to be invited to participate in them.

And this time around, appropriately for summer, I’ve been very kindly nominated for the Sunshine Blogger Award. This award is given by bloggers to other bloggers, to recognise and celebrate the creativity, positivity and inspiration in their work.

So to be nominated just once by anybody is a great honour. But over the last few weeks I’ve been nominated THREE times, which is extremely flattering! So thank you very much indeed to Holly (Life of a Blind Girl), Luke Sam Sowden & Carol (The Invisible Vision Project), it’s very generous of you all to nominate me! They’ve all asked completely different questions too, which is wonderful. So I hope you enjoy reading my answers to them all.

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May 2018 Favourites

May was a lovely month. The weather’s been gorgeous lately, for the most part, and with no major events going on it’s been quite a relaxing few weeks .But there are still various bits and pieces I’ve enjoyed, and want to mention in this latest post and video update. So I hope you find this interesting.

To start with though, I just quickly want to plug a couple of upcoming events in June that will interest some of you. They’re for people all over the world to join in with, not just the UK. The more the merrier really, as it will help to spread vital awareness in both cases.

Sue Ricketts talking to a lady at the Nystagmus Network table ,with a tall poster next to it giving details of the charity.June 20th will be Nystagmus Awareness Day, which is its new permanent date, having moved from November. This year’s theme is Nystagmus In The Open, where people are being encouraged to do outdoor activities to raise funds and generate awareness. Sue, who runs the Nystagmus Network, is opening her garden for people to visit, for instance. People are also being invited to submit their stories online to show how amazing people with nystagmus are.

The Aniridia Day logo is a cartoon style image of the Earth, wearing sunglasses, smiling and giving a double thumbs up. Curving over the top, in yellow text with black outline, are the words “Aniridia Day”. Below the Earth in bold black text is 21 June, and below that the address for aniridiaday.org.June 21st will then be Aniridia Day. This is the second time it’s been held, as it was a big success last year. This year’s awareness campaign is called Aniridia Sight, where we want people with aniridia to share a photo or video of a scene, and describe how they see it through their eyes. So the more people that get involved, the more we can show how varied the vision of people with aniridia is. And then there will hopefully be live webinars too, for people to discuss aniridia related topics e.g. doctors, researchers, people with aniridia, etc. If you’d be interested in doing a webinar on the day, please fill out the form to sign up.

So now that’s out of the way, let me tell you what I’ve been up to in May.

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Disabled Blogger Tag

This Q&A tag is a wonderful creation by Elin at My Blurred World who recognised that, in amongst all of the many blogger tags out there, disabled bloggers didn’t have a tag for themselves. I’m one of the people she nominated to do it, and I’ve also been nominated by The Invisible Vision Project, Amanda Gene and Life Of A Blind Girl, so thank you to all of you! 🙂

So here are my answers, as a post and a video. I hope you enjoy it and find it interesting!

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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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January 2018 Favourites

After a very eventful and successful 2017, I’ve been looking forward to seeing what 2018 would bring. And this year I want to try and get into the habit of doing monthly favourites posts, so you can get a good overview of what I’ve been enjoying, both out and about and at home. That way I can cover little things that I wouldn’t otherwise mention, as well as the bigger stuff that I’ve written longer posts on, which I’ll link to here.

So this is the first post, for January. This month I’ve been mostly doing things indoors given the cold weather outside. So I’ve been going out to various museums, and have also been to the theatre, while at home I’ve been watching a couple of the DVD sets I bought last year, to catch up on those. And I’m also making an effort to start listening to more audiobooks this year, as I only did one in 2017, which was bad of me (although, to be fair, book-reading wasn’t top of my to-do list having just moved to a huge city!).

So I’ve been keeping myself entertained in various ways, and I hope you enjoy this post and video recap of the month!

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Blogger Recognition Award

As if nominating me for the Liebster Award wasn’t generous enough, Holly from Life Of A Blind Girl has also nominated me for the Blogger Recognition Award twice this year, in January and October, which is very kind indeed, thank you Holly! Do go and check out Holly’s blog, as she publishes lots of great posts about visual impairment, disability awareness and her hobbies and interests.

Update: Since writing this post I’ve also been kindly nominated by Amanda Gene for the same thing, so do go and check her blog out as well.

The Blogger Recognition Award simply requires you to write a bit about your blog and give advice to new bloggers, and then nominate other bloggers to do the same, to share the love and give them some exposure and recognition. So that’s what I’m going to do here. Thanks again to Holly for nominating me!

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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 or a social media promotion, 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. And I’ve written blog posts about how I prepared for it and my experience at the Open Day.

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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New Year, New Start

Happy New Year everybody! I hope it turns out to be a happy, comfortable and prosperous one for you. If you’re currently going through any difficult times, then I hope the coming year brings some positive vibes and fortune for you.

For me, 2017 is going to be very interesting, as shortly before Christmas my mother and I moved to London! Hence I’ve been very quiet in this blog over the last few weeks. 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, that it’s been worth the wait to get this much needed fresh start.

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Journal – October 2006

June 2021 Introduction:

It’s time for another bunch of entries from my old journal. This month we had a lot of building work done on the ground floor of our home, and I met up with my friend in Exeter. Plus I bought some more DVDs and music as usual, and wrote about some news stories that caught my eye, among other bits and pieces. So I hope you enjoy!

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