Nystagmus Network – Well Eye Never

January 2021 Favourites

Well, that month was a long year, wasn’t it? I thought January might be relatively quiet compared to December, but it was clearly very difficult for 2021 to get steady on its feet amongst the fallout from 2020, for reasons that we’re all too familiar with from the news.

January also marked a significant milestone for me, as it’s now 10 years since my father passed away. It’s amazing how quickly that time’s gone, when it inevitably dragged so much at first. And after all these years, not a day goes by when he doesn’t come to mind for one reason or another, he’s always present. I get my sense of humour from him, and he was always supportive and encouraging and fun to be around. That’s him you can see behind little me in the header image for this post. As I haven’t had any reason to take interesting photos myself lately, it seemed appropriate to use one of him on this occasion, and I dedicate this post to his memory.

And in the present, Captain Sir Tom Moore has very sadly passed away at the age of 100. He was one of the brightest lights of the pandemic, raising nearly £40 million for NHS charities, and his positive attitude to life filled us all with hope and motivation at a time when we really needed it the most. So he will be very dearly missed, and his charity foundation will undoubtedly continue to do lots of great work in his honour in the years to come. Condolences to all of his family and friends and everyone who came into contact with him. And thank you Captain Tom for everything you’ve done. We will walk on through the storm, with our heads up high and hope in our hearts, thanks to you. RIP.

Still, despite all of that, there is also much to be happy about. Green shoots of hope and positivity are breaking through, and I have some good news of my own to share in this post, along with the usual rundown of entertaining things that I’ve been enjoying. And none of it is sponsored or gifted as usual. So let’s crack on with it, and I hope you enjoy this month’s post and video!

September 2020 Favourites

Autumn is now upon us, as is the second wave of the pandemic, and I know this will be a very difficult period for many, just as the whole year has been. So I hope you’re all continuing to keep safe and well as best you can.mu

For my part I’m still doing fine thus far, and still keeping myself occupied. I’ve been getting out and about more, and have continued to enjoy various forms of entertainment at home. So here’s my latest post and video roundup, in which nothing is sponsored or gifted as usual. I hope you enjoy!

Lockdown Favourites – Weeks 13-16

Hello again. Miraculously we’ve made it past the halfway point in the year, although admittedly it feels like a lot more time has passed. Months effectively haven’t existed for a little while now, with all the weeks just blurring into one continuous sequence.

It’s also strange to think that we passed 100 days of lockdown in week 15. That seems to have gone by quicker than I’d expected, although I know for many that time will have dragged terribly, and certainly early on I found it difficult like everyone else. But I’m glad I’ve been able to settle into a new routine and adapt during that time. Connecting with friends, homeworking, blogging, music, TV and film have all got me through it, and are continuing to do so.

So I hope you’re all continuing to keep safe and well. Our lockdown measures here in England have been eased significantly further again, and the government have ended their daily briefings, but as the virus is still in circulation we all have to remain very cautious. There will inevitably be local outbreaks, which may lead to lockdowns of certain towns and cities as and when necessary (as Leicester have already found), but we just have to hope the entire country won’t be shut down again. The most vulnerable people who are still shielding will have to remain indoors until early August, when they can finally go out again if they feel ready to do so.

Regular readers will know that my mother and I have been voluntarily shielding, even though we’re not explicitly required to do so, for my mother’s safety in particular. In recent weeks I have been getting out a little bit more though, and Mum’s been at once, as I explain during this post. It’s just around the local area though – I still don’t intend to use public transport for the time being, even though there are safety measures in place for train travel, as the risks still feel too great and there isn’t anywhere that I need to go.

So here’s my latest update on the things I’ve been doing and enjoying over the last few weeks, with accompanying videos for weeks 13-14 & 15-16. None of it is sponsored to appear here, but I was paid to attend the CXcon event as you’ll see. I hope you enjoy looking through it all!

Lockdown Favourites – Weeks 9-12

Hello again, I hope you’re continuing to keep safe and well. It’s been a strange few weeks for me. It started with the loss of my uncle over the Bank Holiday weekend, although fortunately he didn’t have the virus, and my mother and I are hoping to go to the funeral to support my aunt if the rules allow. And then of course we’ve had the Dominic Cummings scandal, which I’m not going to rant about, suffice to say there’s been a major misjudgement of the public mood by him and the government, they’ve lost a lot of trust and goodwill.

On the plus side, however, our lockdown has been eased in various ways, including the re-opening of non-essential shops, the compulsory use of face coverings on public transport, and the partial re-opening of schools. But many scientists feel too much is being done too soon – and if the experts are wary then so am I, because I trust their judgement the most. So I’m happy to continue staying locked down, because I have no compelling reason to go out anyway, and my priority is still protecting Mum by not bringing the virus home.

Best wishes to my friends and followers in the USA as well, all our thoughts are with you right now. Black Lives Matter, and those taking advantage of peaceful protests to cause destruction and misery have no respect for peace and equality. I sincerely hope that stability and civility is restored very soon. We should all be pulling together at all times, but it’s more important than ever during this pandemic.

Anyway, apart from all that, I’m doing fine and have been quite productive, and I’ve continued to find lots of pleasant distractions. So let’s get into my latest post about what I’ve been enjoying, and there are accompanying videos for week 9, week 10 and weeks 11-12. Apart from the Def Leppard box set noted in the music section, nothing else is sponsored or gifted here, and all opinions are my own. So I hope you find it interesting!

Lockdown Favourites – Weeks 1-4

Hello there. I hope you’re all keepinng safe and well, and that you had a nice break over Easter, with plenty of chocolate goodies or whatever you like to indulge on.

I think we’ve all earned a few treats at the moment, given that things have felt very strange since we went into lockdown on 23 March. Like everybody else, I was very anxious about the situation at first, and it’s still going to be a concern for a while, because all of the changes to our lives are a lot to get used to. But I know that we’re doing it for the right reasons, to save lives.

I do also feel that my mother and I have been adjusting as well as can be expected, we feel relatively relaxed at the moment. It also helps that I’m not checking news and social media updates as often as I was initially, and I’ve muted certain phrases and blocked various accounts to make browsing social media a calmer experience. Things like that certainly make a big difference to one’s mindset.

I’m already a homeworker too, so that’s made things easier. Although, as it happened, I didn’t fully go back to work straightaway, because by chance I had already booked the first 2 weeks of lockdown off to use up my annual leave quota (after an illness last year meant I couldn’t use as much holiday as I’d hoped). Granted, I couldn’t use that holiday time to go anywhere nice, except the local park, but the time was very useful to ensure that Mum and I were stocked up and could start settling into this temporary new way of living. So it’s only been the last couple of weeks that I’ve started getting into a proper routine again (and even then Easter ensured that I had 2 four-day weeks).

But of course, many people have far more important, difficult and stressful jobs than I do. So if you’re a key worker – including employees and volunteers in the health service, social care, retail sectors and local authorities, among many others – then thank you!

It’s a very uncertain time, and we don’t know how long this will last, but I want to keep myself occupied as best I can. There are certainly lots of options for things to do – and if you need any ideas, check out my special Lockdown Resources page – so I’ll try my best not to get bored. Indeed, it feels like time is moving more quickly again, after the month of March felt like a year. Maybe it’s because I was already used to homeworking and spending a lot of time at home, and because I’m finding plenty of ways to stay busy and entertained.

So with that in mind, here’s my first lockdown post about the things that have been keeping me occupied. There are 3 videos to go with this – for weeks 1-2, week 3 & week 4 – because with more free time I’ve been able to produce videos a bit more frequently, at least for a little while. So I hope you enjoy looking through this selection.

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.

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.

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this: