Nystagmus – Page 2 – Well Eye Never

February & March 2020 Favourites

Well, what a year this has turned out to be, huh? Perhaps we should just rename it 2019B or 2019.5 and start 2020 again next January. It’s like we’ve had a faulty software update in the calendar that needs serious debugging and virus-checking before it’s rolled out again.

Obviously I’m not dismissing the tragic side of things by saying that. My heart goes out to everybody who has lost loved ones or been severely affected in some other way, and I sincerely hope you all stay safe and well as best you can. Please follow the guidelines on hygiene, distancing, isolation, etc, because it really will save many lives. It will take a few weeks at least before we start seeing the impact of such measures, but they will help, and we will get through this. Huge thanks to all our incredible health and care staff, as well as the many other people providing essential products and services.

Beyond this introduction, I have no desire or intent to write posts about the situation, as it’s not nice and there’s enough about it online already. However, I have created a Covid Resources page, where you’ll find many links for information, advice and support, plus many ways to stay connected and entertained at home, which I hope you find useful.

Clearly this is going to change what I’m able to do and post about for a while. So in this post and video I want to wrap up my recent museum and theatre visits, as well as disability related updates and TV favourites, for both February and March. That way, I can move forward with a clean slate as I settle into a temporary new routine.

All of which means there’s a fair amount to cover here, making it a good distraction from everything that’s going on. I haven’t been sponsored or gifted by anyone to mention them, and all opinions are my own. So I hope you enjoy!

September 2019 Favourites

Those of you who have been following along recently will know that I had some issues in August that stopped me going out much. I was still able to do a July & August Favourites post, but the August part of that wasn’t very substantial.

September has continued to be rather mixed, as I’m still having an issue with my feet, so I didn’t get out too often. I think it might be hives of some sort, but the antihistamines are keeping them right down, so they’re not getting worse and are tolerable. It means I’m able to get around more easily, and also go out and about if I don’t overdo it. I’ve got a dermatologist appointment on 2nd November (which was thankfully moved forward from the original date of the 30th), so hopefully we can start sorting it out then.

And for those wondering about my Personal Independence Payments claim, no decision has come through yet. But I had 3 text messages to say they had the report from my face-to-face assessment, and then 2 letters in the post to say they have all the information they need to make a decision. So I just have to wait and see now.

Despite all of that, however, I’ve still ended up with a fair number of things to write about for September. I did manage to go out over the course of a weekend, when my foot was behaving, plus I’ve got some exciting videos and articles to share that I’ve been involved with, and there are some TV shows and music releases I want to mention. And as usual, no products in this post are gifted or sponsored, and all opinions are my own. So I apologise that there won’t be much in the way of London-specific stuff this month, but I still hope you enjoy this post and video as always.

What Is Normal? (Documentary)

I still find it very humbling and flattering that so many people have taken an interest in my adventures over the past few years, whether it be reading my blog, watching my videos, or seeing me speak at events. I’m very grateful to everyone for the support and encouragement, and I wouldn’t be doing this if nobody cared, so thank you.

I never imagined that I’d have a documentary made about me though. Yet that’s exactly what happened for the first time a few months ago. It was an exciting experience and I’m delighted with how it turned out.

I’ve held it back until now for various reasons. Firstly, whilst I have permission to post it regardless, I wanted to give a bit of space for its creators and sponsors, including a major charity, to publish it first if they so wished. But I also had a few things distracting me over the summer too, as regular followers will know, which has further delayed it.

But now’s a good time to release it, as it ties in nicely with the recent publication of my Aniridia Network Conference talk – Growing In Confidence With Aniridia – which was filmed shortly after the documentary was completed. Soon after that I was also in a second documentary – See Differently by Yiwen Feng – which featured myself and others. You can find out more about my speech and that other film in my June Favourites. I was certainly getting my 15 minutes of fame around that time!

In this post, therefore, I want to share my first ever documentary with you, and give a behind-the-scenes insight into how it all came together. I hope you enjoy it, and please do share the film around on social media.

So without any further ado, I present my documentary debut – What Is Normal?

February 2019 Favourites

The time has come for another favourites post and video, looking back at February. It’s the shortest month of the year, and this is going to be one of my shorter Favourites posts, because there’s been a lot of behind the scenes stuff going on, in a good way.

In particular, I’ve been spending quality time with my girlfriend Claire, and of course we celebrated Valentine’s Day together, as well as meeting up regularly in general. So naturally I’m not going to write about anything personal here.

But also, a sudden influx of wonderful opportunities have come my way over the past few weeks that have filled up my calendar for March. I can’t say too much yet, but keep an eye out for a special guest post on Disabled Access Day on March 16th, a review of the Transport For London Access Day that I’m going to on March 19th, and later on some special cultural reviews. My blogging efforts have really been paying off lately it seems!

Also don’t forget to claim your free tickets for Naidex, Europe’s largest show dedicated to disability and independent living, on 26th & 27th March in Birmingham. You’ll see me posting a lot about it on social media as it approaches, because I’m an ambassador for them. This just means we exchange posts promoting each other, I’m not paid or gifted to mention them. I just really enjoyed the show last year, so I’m looking forward to going again.

Back to February though, and there are still some things I am able to write about, mainly focusing on museums and entertainment. As always, there’s a video to go with this post, and I’m not affiliated with or sponsored by anybody I mention here. So I hope you enjoy my latest roundup!

Out Of Orbit – My Charity Nystagmus Abseil!

We did it! 🙂 On Sunday 21 October, after a month’s delay due to the typical British weather, I finally got to do my charity abseil down the ArcelorMittal Orbit Tower in aid of nystagmus research. That’s a drop of 80 metres (262 feet) from the UK’s tallest sculpture!

It was my first ever fundraising challenge and my first ever abseil, and therefore a big deal for a beginner like me. And it was an amazing experience, which I’m excited to tell you about in this post. I’ve also made a video that includes headcam footage from my descent, so do check that out as well.

Donations closed on 23 March 2019, and I raised £920 (+ £143 Gift Aid)! Thank you all SO much! Everyone who donated prior to the initial publication of this post is listed at the end, and are also in the credits of my video (unless you were anonymous of course). But if you’d like to donate even though the deadline has passed, please feel free to donate to Nystagmus Network and/or Moorfields Eye Charity directly. Thanks!

So I hope you enjoy reading about my abseil adventure, including my fundraising achievements and what happened on the day itself! Thanks again for your support!

September 2018 Favourites

Time for another monthly update, and it’s fair to say that September was very busy and productive, as well as throwing up one or two surprises, which in turn are paving the way for a very interesting October. There is of course a video to go with this post, and I hope you enjoy this little catch-up as usual!

Nystagmus Network Open Day 2018

Even though my abseil for nystagmus research has had to be postponed (it’ll now be on 21st October), nystagmus has still been the big topic this month, because on Saturday I attended the annual Open Day held by the Nystagmus Network.

This was my second time going to this event, following my experience last year when I gave my first public talk. So this year was much more relaxed, because I didn’t have to do anything! And it was a wonderful day, so I thought I’d give an overview of how it went.

June 2018 Favourites

Time for another monthly favourites post and video, this time looking back over June. It was a significant month on social media for a few reasons, plus I also got to see 2 theatre shows, went out to a few museums and did a few walking tours in the nice weather. So there’s plenty to mention.

My Visual Impairment Aids & Gadgets

I use various things to assist me in my day-to-day life as a visually impaired person, just to make things easier or more accessible. It means I can be independent and do many things that normal people do. So in other words, I’m still leading a normal life, it’s just that I dcao some things a bit differently to people with regular sight.

Naturally my iPhone is a huge help these days, but I’ll talk about the features and apps I use there in a separate post. In the meantime, you can see a list of my apps here, with an older video about them that I’ll update when I do a new post.

So in this post and video I’m going to tell you about various other aids and gadgets that I use, and a few used by my mother as well, as she’s blind. I’m not affiliated with or sponsored by any companies mentioned here, and these are all my own opinions.

So I hope you find this post interesting. And let me know if there are any particular aids or gadgets that you use a lot, or if there’s anything you recommend I should check out.

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.

June 20^th 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.

June 21^st 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.

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

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