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, 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.

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Sight Village 2019

Last week I had a great time at the Sight Village South East event in Kensington Town Hall. It’s an annual exhibition showcasing the latest technology, products and services for blind and visually impaired people, and is one of a few Sight Village events held around the UK by Queen Alexandra College every year.

I’ve attended previously in 2016 & 2017, so having missed last year’s event it felt like a good idea to go back this time. But this occasion was slightly different, because although I did have a little look around, I actually spent most of the day working on one of the stands. So it was very interesting to be on the other side of the desk, as it were, talking to curious visitors rather than being one of them myself. So I just thought I’d give you a quick rundown of the day and who the exhibitors were.

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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.

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June 2019 Favourites

We’ve reached the halfway point in the year, and summer is finally blessing us with decent weather. And I’ve had a very busy month!

Firstly, there have been some disability related developments, most of them positive. In particular, I’ve spoken at a conference, been a guest on a podcast, and I was filmed for another documentary. So my visual impairment led to a few great opportunities in quick succession, I’m happy to say.

On the downside, I’ve finally received the call-up letter to switch from Disability Living Allowance (DLA) to Personal Independence Payments (PIP). This basically means I have to fill out a huge form about how my disability affects me, and then have a face-to-face assessment with a health professional, so the government can decide if I’m entitled to benefit payments. It sounds relatively simple when worded like that, but most disabled people will tell you it’s anything but. So that’s going to be on my mind a lot over the next couple of months at least, and I’m not looking forward to the process. But I’ll let you know how it goes at a later date. I’m not going to bore you with a rant about it in this post!

Thankfully, apart from that, I’ve been able to enjoy the month in many other ways. I went on a lovely weekend break with my girlfriend, I’ve been out in London for more exhibitions and walks, my girlfriend and I enjoyed a new film at the cinema, and I’ve enjoyed new TV shows and music releases at home. So there’s plenty to get through. As always, I’m not sponsored by anyone mentioned here, I’m just sharing these things because I enjoyed them. And I hope you enjoy this month’s post and video!

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May 2019 Favourites

Hello again, and welcome to my latest monthly recap. I’ve been a bit quiet here this past month, and that’s because I had to take a step back while working on a couple of important things – neither of which I can give you a lot of detail about in this post, although I will briefly tease you about them.

A lot of my time was spent preparing for this year’s Aniridia Network Conference. Not only was I going to be capturing photos and video, but I also had to prepare and rehearse a talk of my own, about how I’ve grown in confidence with aniridia. So that was naturally on my mind a lot. The successful event took place on 1 June, and all of the talks were filmed, which I’ll be editing and uploading to the charity’s Youtube channel in the weeks to come. So I’ll share my talk with you at a later date. In the meantime, do also keep an eye out for Aniridia Day on 21 June, which will raise awareness of the condition worldwide, and show your support if you can.

I was also on camera during May itself though, for another exciting reason, because a mini documentary was made about me by a wonderful group of film students. I really enjoyed the experience, and I’m very pleased with how the film’s come out. I’ll tell you all about it in a separate post later, after the video has been published (although there is a sneaky preview in the video relating to this post). It was made for a major disability charity, so I’m waiting to see if they’ll post it first. But I have permission to publish it on my own channel as well, so it’ll end up there in due course. In any case, I’m really looking forward to sharing it with you!

Those events aside, there are still some other bits and pieces I can tell you about in this month’s post and video. As always, I’m not sponsored by anybody mentioned here, nothing has been gifted, and all opinions are my own. So let’s crack on with it, and I hope you enjoy as per usual!

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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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August 2018 Favourites

It’s now time to do my August Favourites post and video, to bring myself up to date before I get into an eventful September. August was again busy on the social media front, and there was important stuff going on at home too. But I also had time to go out and do a nice variety of things as well. So it was another productive and enjoyable month, and I hope you enjoy reading about it.

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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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Aniridia Day – My Aniridia Sight

Happy Aniridia Day! Following the shining success of last year’s launch event, this year it’s back and there’s loads going on today.

For starters, there are hours of live webinars taking place all day, with talks and Q&A sessions by patients, parents, doctors and researchers from all over the world. And I’m involved in one of them, because myself and James Buller will be discussing living with aniridia. So do join us if you can!

But the other major part of the day is the Aniridia Sight campaign, where people post a photo of a scene, and then describe how they see the same scene from the same position – i.e. when they take the place of the camera, what can they see with their own eyes?

So in this post, I’m going to share my contribution to the Aniridia Sight campaign. And you can do the same, by sharing your Aniridia Sight photos and descriptions to the Aniridia Day Facebook group, or posting on social media with hashtag #AniridiaSight and tagging @AniridiaDay. I hope you all have a great day, and you find the following description about my sight interesting.

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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.

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.

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.

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

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