February 2022 Favourites

Well, what a month this has turned out to be, as the world lurches from dealing with a nasty microscopic invader to a much larger and more evil one. I’m not remotely qualified to talk about the catastrophe unfolding overseas, but my thoughts are with the Ukrainian people at this unimaginably horrific time, along with all those working to support and defend them, and all the journalists reporting from the area. A lot of courage is being shown out there against the onslaught, supported by unprecedented unity amongst countries around the world, all far greater than Russia had bargained on.

There are many ways to help the Ukrainians, including donations to appeals by the Disasters Emergency Committee, British Red CrossUNHCR Refugee Agency & United Help Ukraine, along with children’s charities Save The Children, UNICEF & Voices Of Children, as some examples. But it’s also important to find ways to help yourself, your children and others, given that a lot of the news is very distressing. For example, there’s no shame in muting words on Twitter, unsubscribing from news feeds, and generally reducing how often you access the news on TV and online, as I’ve been trying to do. It doesn’t mean you don’t care, it just gives you control over how much you’re exposed to it, so it isn’t too distracting or overwhelming. It’s also great to see that the BBC are making use of shortwave radio and the dark web to make the news available to Ukrainian and Russian civilians who would otherwise be prevented from accessing it.

All of that has completely overshadowed everything else of course, in what was already a busy month for news, with the final Covid restrictions being lifted in England as we cautiously return to relative normality, the excellent gold medal won by Great Britain’s female curlers and the silver won by the men in the Winter Olympics (and good luck to our Winter Paralympians too!), plus the rough weather from Storm Eunice that caused myself and many others to get sucked into a live stream by Big Jet TV, of planes attempting to land at Heathrow, with Jerry Dyer‘s entertaining commentary. There’s certainly been a lot going on!

As for me, however, things have been pretty quiet this month, as expected. I haven’t been to any museums or theatres for a start, but I am getting back into all that stuff in March, where I’ve got quite a lot booked or planned. And I did still go out and about in February. In particular I was delighted to do my first bit of socialising this year, when I met up with a good friend for a meal in Pizza Express and a walk around Regent’s Park. And I’ve had some nice long walks in Central London, ticking several more streets off my map. You can see a few photos of things I saw on my Instagram & Facebook pages, including Westminster Cathedral, the Little Ben clock outside Victoria Station, and nearby sculptures called Lioness and Lesser Kudu & Essential Bonds.

Apart from that though, it’s mainly just a few TV shows and films that I have to mention in this month’s post and video. So this is going to be relatively short, but I hope you enjoy!

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October 2020 Favourites

Here we go again. It’s time for Lockdown 2: Electric Avenue, so the cases don’t get higher. It’s not quite as severe as the first one, with education settings remaining open in particular, but there are still very tight restrictions nonetheless. And it had been inevitable for some time. The use of different ‘tiers’ to set regional rules was keeping the infection rate lower than it otherwise would have been, but it wasn’t quite doing enough to drive cases down. So we didn’t have a choice, sadly, as many other countries have found.

There are still lots of reasons to be optimistic, thanks to the ever-improving knowledge about the virus, the better treatments now available, the developments of mass testing, and the very promising results of vaccine trials. But right now we have to be vigilant to get through the winter safely, and it’s important to take care of ourselves and look after our mental health during this time.

I feel relatively calm about it thankfully, as I’m fortunate to have a steady job, priority grocery deliveries, family support, regular contact with friends, blogging projects, local walks, entertainment, etc to help pass the time. And we’ve pre-ordered our meat for Christmas from a farm we like, so that gives us peace of mind too. I still greatly miss seeing friends in person and visiting interesting places of course, nobody wants this. But right now my mother and I feel safe and comfortable, which is the important thing. We’re more prepared than the first time around, when the uncertainty and panic buying made it really difficult to begin with. So we know we can get through it, having done it once already.

But for many other people it’s going to be a lot harder, due to physical and mental health issues, loneliness, loss of employment and business, financial worries, family and domestic problems, the loss of loved ones from the virus or other causes, and so on. So please do help others if you can, either by direct support or by charitable donations, because every little bit helps. And do also sign the petition by Mind calling on the Government to invest in a Winter Mental Health Support Package.

And if you’re in a position where you’re struggling, then my thoughts are with you, and please know that you’re not alone. And don’t be afraid to seek help or support, there’s absolutely no shame in that. If you’re unable or too anxious to talk to someone you know, then there’s lots of advice and support available from the Samaritans, counsellors, mental health charities, other charities relevant to disabilities and health conditions, support groups on social media, etc. I know it’s easier said than done – I’ve had to confide in friends about difficult things in the past, most of us have to at some point in our lives. But having any kind of support network, even if it’s just one person you can reach out and talk to when you need it, is a massive lifeline. Use it.

And to my American friends, who are going through a stressful period with their election right now, we’re all thinking of you too. You’ve had enough to deal with in 2020 on top of the pandemic as it is, without this in the mix as well. At the time of publishing this post, the outcome is still not clear, but I sincerely hope that common sense and decency prevails in the end. Stay safe out there.

But anyway, with all that said and done, let’s get into my latest monthly update, which is what you came here for in the first place. In this post and video for October there’s plenty to mention as usual, including my latest appearance on national radio, my walks out and about, and the various bits of entertainment I’ve been enjoying. None of it’s sponsored or gifted as usual, and I hope you find it interesting!

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Lockdown Favourites – Week 3

Happy Easter! I hope you’re all staying safe and well as best you can, and that you’ve had a nice break over this long weekend, with plenty of chocolate goodies or whatever you like to indulge on. I think we’ve earned a few treats at the moment. Or 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! You deserve even more special treats than the rest of us!

Following on from my post last week, here’s my next roundup of the ways I’ve been staying occupied and entertained over the past 7 days, including a video as usual. So I hope you enjoy looking through it. And don’t forget that I also have a huge list of Covid Resources that I’m updating regularly, including information, support and entertainment links, that you can check out as well.

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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!

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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.

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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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My First Aniridia Network Conference

One of the first people I met after moving to London last year was James, a trustee at the Aniridia Network. He got in touch after he saw me writing about aniridia on my blog, and noticed that we had other things in common too. So we met up and became friends, which was a great welcome to London in my early days here.

Over the months since then, I’ve became a voluntary communications officer for the charity, which involves helping out with blog posts, social media content and email newsletters, as and when time permits. One of the first things we did together was to edit the promo video for the first Aniridia Day last year, which was very successful.

And now the latest project has been recording and publishing material relating to the Aniridia Network Conference, which took place on 14 April. It’s their flagship annual event, bringing together people with aniridia, parents of children with the condition, medical professionals, researchers, etc, for a day of presentations, activities, socialising and information gathering.

And this was my first time at the conference, so I was really looking forward to it. Not only would I be helping out with filming, but I was also asked to give a speech there as well, so it looked set to be a very busy day!

So in this post I want to tell you how it went. And this is just my own personal perspective, this isn’t part of my social media work for the charity. They are of course welcome to quote from this post, but they haven’t asked or sponsored me to write this. You can see their own updates about the event, including photos, videos and feedback, on their websiteFacebookTwitter and Youtube pages, with much more to share over the coming days and weeks. But for now, here’s my own experience of the day.

Continue reading “My First Aniridia Network Conference”

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