Sliding into September

We’re into the final third of the year. As I work at a university, September is a busy month as new students arrive to enrol and returning students come back after the long summer break, so campus is going to be busy again after a quiet few months. This month also sees my employer adopting a consistent hybrid working policy at long last, which means I’ll be working three days a week in the office from now on. Previously it was just two days a week in the office, but there were times when I would work an additional day in the office and so I’m not too fussed about the change.

I’m also off to visit one of the universities in Leeds this month for a meeting, as part of a collaborative project that I’m involved in across several northern universities. We normally meet online, so it’ll be the first time I’ve met some of these people in person, which is nice.

Schools

Our ten-year-old goes back to school this week, to start their final year at primary school. They’ve put on a growth spurt recently and so we’ve had to buy all new school uniform in recent weeks, even though they’ll only need it for a year.

In the coming weeks, we’ll be heading along to open evenings at the local secondary schools. Whilst all three of us are pretty sure which school will be their first choice, we’ll investigate the alternatives as well. The application has to be submitted by the end of next month, and then we find out the outcome in March next year.

Railcards and birthdays

My disabled person’s railcard is up for renewal this month; I’m hoping the renewal process is straightforward and I won’t have to provide evidence that my hearing hasn’t somehow magically improved. That being said, the fact that I have an epilepsy diagnosis and have been deemed medically unfit to drive are also valid eligibility criteria. I’ll be purchasing a three year railcard, as over three years it’s cheaper than a standard annual railcard. And as I can use it for commuting, it saves me quite a bit of money – especially with me being in the office more often now.

Christine has her birthday next week; as with last year, it’s not a round number, but we both have the day off work and so will probably go somewhere for a nice lunch.

Bathroom renovation

Following our new kitchen in 2022, the next big renovation project on our house is our upstairs bathroom. Work probably won’t start this month, but we have had the majority of the new bathroom furniture delivered. Indeed, there is currently a brand new bath sat in its packaging in our living room, and we had to move half a tonne of tiles into the house last week. I’ll post more when work starts; most likely in November but we’ll see.

A recovery update

A photo of a jar of calcium and vitamin D supplements, and a box of Levetiracetam tablets

It’s been four weeks since I last wrote about my recovery, following my seizure in May. Because August is my busiest month at work, most of this month’s blog posts were written in advance and so I haven’t talked about what has happened with my health since last month. Things have happened and so it’s about time for an update.

I had a third seizure

Earlier this month, I had seizure number three. Number one, as mentioned, was in May and resulted in me breaking both my arms; seizure number two was in June. I managed not to have a seizure in July, but then had a minor one earlier this month. Like the second time, I was already in bed, so I didn’t fall and my head was supported. And again, like last time, Christine was there and was able to time it. As per Epilepsy Action’s advice, it’s not really necessary to call for an ambulance for seizures lasting less than five minutes, and once I’d come round, we all went to bed. I even went off to work as normal the following morning, with only a sore tongue from when I’d bitten it to show for it.

I’ve been fine since, although my neurologist advised my GP to increase the dose of my anti-seizure medication, Levetiracetam (more commonly known by its brand name, Keppra). I’m still on a relatively low dose for now though. It also, unfortunately, resets the 12 month seizure free period that I need to have to get my driving licence back. So, I won’t be able to do any of the driving for next summer’s holiday either.

I have a formal epilepsy diagnosis

Speaking of my neurologist, I had a call with them at the end of last month, where they stated that I met the requirements for a formal diagnosis of epilepsy. This, incidentally, was before seizure number three.

We’re still trying to work out what is actually causing the seizures, as there doesn’t seem to be a specific trigger. I’ve had two electroencephalograms (commonly known as an EEG or ‘brain wave scan’):

  • a standard EEG test last month, which came back normal and included a strobe light test
  • a ‘sleep deprived’ EEG test last week, where I stayed up all night, and then had the test first thing in the morning. That meant that I fell asleep during the test, and so they could monitor my brain activity whilst asleep. I then spent the rest of the day in bed. I’m still waiting for the rest of this.

Meanwhile, my ENT surgeon is looking at booking me in for an ear procedure that may help, whilst I await the results of another CT scan.

I also have an osteopenia diagnosis

On top of all of this, last week my DEXA scan results came back, showing that I have low bone density for someone of my age. This would likely explain why I ended up fracturing both arms during my first seizure. The medical term for having low bone density is osteopenia, and people with osteopenia are at greater risk of developing osteoporosis if it’s not managed well. I’ve probably developed it partly as a side-effect from having been on steroid-based asthma medication for over 30 years, but being able to breathe is important to me so I’ll take the compromise.

The good news is that osteopenia doesn’t need to be managed with medication – regular vitamin D and calcium supplements are usually sufficient, as is regular exercise and avoiding smoking and excessive alcohol consumption.

I still have some further blood tests to do, just to make sure that there’s nothing else causing my osteopenia that needs flagging up.

My mobility is getting there

I’m starting to regain strength in my arms, and my dexterity and mobility is improved. There’s some way to go before things are back to normal – I still struggle with getting things over my head, and putting a backpack on and off is a bit of a challenge, especially when wearing a coat. But I can do almost everything on my own now, with Christine just helping a little bit with showering and sorting out my shirt collars, for example.

I’m also in significantly less pain – whilst I’m still taking paracetamol and/or ibuprofen most days, it’s more as a response to acute pain flare-ups, rather than keeping chronic pain at bay.

I’m back at work full-time

I’ve been back at work full-time this month, and worked the extra hours for Clearing as per usual. Whilst I have been a little more tired on an evening than I would have expected to have been before May, I feel I’m coping well.

So I’m getting there. There’s still more tests and procedures to come, but I reckon I’ll be closer to my pre-May normal by the end of the year. I’m already not far off.

Augustly Advancing into August

A photo of York Minster, taken in April 2005, to represent Yorkshire Day which is August 1st.

Happy Yorkshire Day! The region where I was born and still live celebrates its identity and history today, and for probably only the second time this decade, I’ll be spending all day in it. Indeed, this weekend is very much the calm before the storm, as for the next two weeks I’ll be working six-day weeks (Monday-Saturday) ahead of Results Day next Thursday and Clearing. It’s our busiest time of year in university admissions.

As such, this weekend is likely to be a quiet one. Besides work, we have no firm plans for the rest of the month, but we may squeeze the odd day out – especially closer to the August Bank Holiday weekend. Which is especially late this year as the 31st August falls on a Monday.

I guess there will be some time spent preparing our ten-year-old for their final year at primary school. They’ve put on a growth spurt recently and so it looks like we’ll need to buy all new school uniform, as their clothes were getting a little small when they finished last month. And then we’ll have to repeat it all over again next year when they move up to secondary school and have a completely different uniform.

Most of this month’s blog posts were written last month, and include several about our holiday in Wales – the first of which will be ready to read on Monday.

Unblogged July

Time for another round-up of things that I’ve been up to this month that I didn’t blog about. As with June’s update, it’s back to being a little longer than May as I’ve been able to do more things as I gradually recover.

Back from Wales

Our holiday in Wales was once again just a week, and so we got back last Saturday – all of this week’s blog posts were written before we left. Blog posts about what we did whilst we were away will start appearing next week, once I’ve had chance to write them.

We’ve decided collectively (our household plus my parents) that we won’t be making it a third year in Wales, having been there last year as well. So there will probably be a ‘what we didn’t do in Wales’ post, like 2024’s Northumberland post, coming later next month.

Returning to the office

Me standing in City Park in Bradford

Another update on my recovery is that I’m back to working full-time hours, and back to hybrid working. This means I’ve successfully managed the commute by train to Bradford and back a few times now, and made it through a work day in the office.

I realise that I’ve touched on this in my review of my OneLife ID wristband but it’s been nice to get out of the house and see my colleagues again. Working all the time at home was okay when we were all doing it (because we had to during lockdown), but when only some of us are at home, it can be a bit isolating.

At present, I’m (mostly) just working two days a week in the office, but this will go up to three days a week from September, as part of a wider policy change at work. To be fair, I’ve often gone into the office on extra days before, so it’s not a huge change for me, and I’m glad that we get to retain our hybrid working privileges.

This week also marked the first time I’ve taken my backpack into work. Since the fall, I’d previously not been able to get the straps onto both shoulders, and so I’ve just had a smaller shoulder bag in the meantime. However, my mobility has improved so that I can finally wear my backpack properly, albeit by putting it on in a rather inelegant way. Still, it’s progress.

Octopus Electroverse Plunge Pricing

On the way back from Wales, we got to take advantage of Octopus Electroverse Plunge Pricing for the first time. When electricity supply is exceeding demand, then public car charging providers who partner with Octopus Electroverse offer a discount when you charge your electric car (or plug-in hybrid). For us, this was 30% – we saved £2 on a quick 15 minute top-up – but can be anything from 20% to as high as 50%.

Generally this happens when it’s particularly sunny and/or windy, and so the electricity being generated by solar panels and wind turbines is higher than the demand. Whilst wind turbines are usually commercially owned and can be turned off (despite this being a massive waste of green energy), energy companies will still pay out for exported electricity from domestic solar installations (like ours). So, offering lower prices for electric vehicle charging gives electric car owners an incentive to charge their cars at a time when supply needs taking out of the grid.

It’s still not as cheap as charging at home, but being able to save a little money is always welcome.

New glasses

I’ll blog about them in more detail when they arrive, but earlier this week I had a routine eye test and found my prescription has changed slightly, again, so I’ll be getting new glasses next month. I’ve been wearing glasses for five years now, and these will be my third pair. My current (second) pair will then become my backup glasses, and I’ll be donating my first pair (current backup pair) to charity.

OneLife ID emergency medical wristband

A photo of my OneLife ID emergency medical wristband

Seeing as how, at the time of writing, I’ve had two seizures in two months, I’ve decided that I needed an emergency medical wristband, just in case I have another seizure. After reviewing various options, I settled on one from OneLife ID, and you can see a photo of it above.

The most well-known provider of emergency medical identity accessories is MedicAlert. But with that recognition comes a cost – not only do you have to pay for the bracelet or necklace upfront, but they also want at least £3 a month to make your medical information available. OneLife ID, by contrast, doesn’t charge an ongoing membership fee.

I went for their Sports ID wristband, and specifically one that includes a QR code that quickly brings up a page with my name, photo and year of birth on it. It’s engraved metal, with a silicon strap that’s similar to most smartwatches. As well as the QR code, there’s my name, my medical conditions, my wife’s phone number, and the URL that the QR code points to. Obviously, I’ve blanked out the details in the photo above, and the QR code leads somewhere else.

Accessing emergency medical information

On the back of the engraved panel is a 4 digit PIN code, so once someone has scanned the QR code, they then need to enter the PIN to access my medical information. This provides more detail about my medical conditions, as well as what medication I take, my NHS number, details of my local GP surgery and my blood group.

Clearly, if I’m having a seizure, I’m not able to give this information verbally, and so having a wristband on will hopefully help any Good Samaritans and medical professionals access my medical information quickly. As such, I wear the wristband whenever I’m out of the house. Of course, I really hope I don’t get another seizure – not least because it’ll reset the 12 month period that I need to be seizure-free before I get my driving license back. But if I do, then hopefully it’ll give members of the public the confidence to help me.

Meanwhile, at work, I have a printed A4 poster from Epilepsy Action pinned by my desk about what to do if I have another seizure.

Setting up my OneLife ID

The OneLife ID web site is a little dated, but setting up your profile is relatively easy and can be done as soon as your wristband has been produced. You can include as much or as little information as you want – there is, of course, a balance between privacy and making sure that you receive fast and accurate care.

My only concern long-term is that the OneLife ID web site closes down, making the wristband less useful. As I’m not paying a monthly or annual fee, there’s a risk that the company could shut down in the future. Should that happen, then hopefully by then I won’t be at risk of seizures any more.

There are other alternatives, and Epilepsy Action has a list of several companies selling emergency medical ID products. OneLife ID seemed the best fit for me, but it’s worth looking at the others as well.

Changing Places Toilet Awareness Day

The logo for Changing Places Awareness Day on the 19th July

Today is Changing Places Toilet Awareness Day – an annual event to raise awareness of Changing Places Toilets which offer enhanced facilities for people with profound disabilities.

Those of you who read my days out posts will note that I usually include the availability of a Changing Places toilet in the accessibility section. Whilst I have had issues with my arms in recent months, I’ve been fortunate that I don’t need the extra support that a Changing Places toilet offers. However, I have friends and colleagues for whom such toilets are vitally important.

What makes a Changing Places toilet?

Changing Places toilets are a step up from what I suppose you could call a ‘standard’ disabled toilet. They’re usually larger, to accommodate a wheelchair and two carers, and include an adult-sized changing table and a hoist. They allow adults who are unable to get themselves out of a wheelchair themselves to use a toilet, and allow carers to change incontinence pads on a clean, flat surface.

It’s estimated that 250,000 people in the UK would benefit from the enhanced facilities that a Changing Places toilet offers. Without them, it’s very difficult for these people to attend school, college or university, work, or just have a nice day out.

How many Changing Places toilets are there?

The number of Changing Places toilets has grown quite quickly in recent years, and there are now over 2500 registered on this map. Where I live in Sowerby Bridge, there are two, with a further two in Halifax. There are four in Bradford city centre, and my workplace has one. Most big shopping centres now have them, as do many larger museums.

Registration is voluntary, and so there may be places that have such facilities that are not on the national map. It’s also worth noting that the map includes some toilets which don’t meet current standards – they may not offer the full range of enhanced facilities, but still offer more than a standard disabled toilet. You can follow the links to each venue’s page to find out exactly what’s available at each toilet, and there are usually photos as well.

Changing Places toilets are an important part of enabling disabled people to live their lives outside their homes, and be able to go to the toilet with the same dignity as able-bodied people. They allow disabled people to be more included and achieve equal access to opportunities. I think they’re really important, and whilst not every single public space needs to have one, having them available will make life so much easier for disabled people. I’m therefore happy to champion those places that provide them.

Giving an honorary degree to Rosie Jones

A photo of (from left to right) me, Dr Jo Buckberry, Dr Emma Brown and Rosie Jones

I don’t often talk about my day job on here, but one of the things universities like to do is award honorary degrees to various celebrities, sportspeople and community champions, alongside our regular graduates. And on Wednesday this week, I had the honour of being a VIP guest at one of our graduation ceremonies where we awarded Rosie Jones with an Honorary Doctorate of the University (HonDUniv).

The photo above, taken after the ceremony, is of me, my colleagues Dr Jo Buckberry and Dr Emma Brown, and Rosie. I’m one of the co-chairs of the LGBTQ+ staff network at work, whilst Jo co-chairs the Disabled staff network and Emma co-chairs the Neurodivergent staff network. We all co-signed Rosie’s nomination for an honorary degree, alongside the chair of the Women’s staff network, way back in 2024, so it’s taken a while to become a reality. But I also think it speaks volumes that four staff networks all jointly nominated Rosie for the award.

A photo of Rosie Jones receiving her honorary degree from Anita Rani at the University of Bradford.

Polymath

Rosie is something of a polymath. She’s probably best known as a stand-up comedian, and appeared on Series 18 of Taskmaster, but she’s also a writer, podcaster, actress, and more recently started The Rosie Jones Foundation, which supports people who, like Rosie, have cerebral palsy. It’s a testament to Rosie’s strength and resilience that she has achieved so much, and I feel she’s a great role model for people with visible disabilities like cerebral palsy.

Her speech at the graduation ceremony was great; I often volunteer at the ceremonies and I don’t think we’ve had an honorary graduate drop an f-bomb like she did. To be fair, for those used to Rosie’s comedy, I would have been disappointed if she hadn’t swore. Also, we did give an honorary degree to Brian Blessed, but this was in the years before our ceremonies were recorded so I don’t know if he swore.

Her degree was conferred by our chancellor, Anita Rani, who is also known for several things including presenting Countryfile and Woman’s Hour, and as a former Strictly Come Dancing contestant. Her books are both great if you get a chance to read them. On the same day, we also conferred an Honorary Doctor of Health degree to former footballer and pundit Chris Kamara.

It was also great to chat to Rosie’s parents; Rosie hails from Bridlington, where my paternal grandparents lived for many years. I used to visit there a lot when I was younger. Rosie herself is absolutely lovely.

They say to never meet your heroes, but Rosie is one of mine and she’s fab. We need more disabled, queer, northern women in public life and Rosie is a trailblazer in this regard.

The four stages of getting better

I’m still getting on with my recovery, and I’m slowly regaining the ability to do tasks that I couldn’t do immediately after my fall. I’ve found that I go through four stages with tasks:

  1. I can’t do it myself
  2. I can’t quite do it myself
  3. I can just about do it myself
  4. I can do it myself confidently

I’m now eight and a half weeks post-fall, and most tasks are at stage 3 and 4 now. The things I can’t do myself involve stretching my arms up – namely, hanging washing outside. Indoors, I can use stepladders to help me reach things, but it’s more difficult outdoors.

There aren’t many things left in stage 2 – things I can’t quite do myself – but dressing myself was something I couldn’t do entirely myself until recently. My main issue was getting my head through t-shirts, and for this I needed assistance.

Stage 3 is when I can do something, but in a rather ungraceful way or with the help of additional tools. To take the example of dressing myself, I found that laying a t-shirt out on a bed, and then pushing my head through it like a cat going through a cat flap, seemed to work. Not graceful, but it gets the job done. Another example would be drying my back; I would lay the towel over the sink so that I could grab it with both arms.

It’s this third stage that has given me some insight into what it would be like to have a permanent mobility issue. I’m hopeful that I’ll make a full recovery, and regain all of my mobility (although it’s not guaranteed). But I appreciate for some, their limited mobility is the best that they can manage, and that’s where mobility aids and various life hacks come into play.

Jumping into July

A photo of Conwy castle taken through the gap in the town wall.

Here we are, into the latter half of the year. I’m continuing to recover, and this month sees us go on our annual summer holiday.

Recovery update

I’m slowly regaining mobility in my arms, following my fall, and I’m generally in less pain now. I’m still not fully back to normal, but may be closer to normal mobility by the end of the month. At least I’ve been able to help out with more of the housework; Christine and I normally split tasks relatively evenly, so a lot has fallen on her.

This month should also see me returning to work in the office on occasional days – until now, all my work has been at home.

I have a bone density (Dexa) scan coming up this month, as for someone to break both arms in the way I did at my age is unusual. I expect it won’t show anything concerning but my GP wants me to have one anyway.

Summer holiday

In the latter half of the month, once the schools have broken up, we’re off for a week’s holiday in North Wales. We’re actually staying in the exact same place as last year – it was nice, convenient, and there are plenty of things that we didn’t get to do last time. In fact, my potential to-do list has enough for a potential third holiday next year, although I doubt we’ll make it three years in a row.

Weather permitting, we’d like to go up Yr Wyddfa (Snowdon), although we’ll probably be taking the train to do so. We also plan to go down some kind of mine one day, and visit the Welsh Mountain Zoo.

As I’m not currently permitted to drive, Christine will be doing all of the driving this time. Which part of me feels bad about; however, I did all of the driving on our 2018, 2019, 2021, 2022, 2023 and 2024 holidays, so maybe this will help balance things.

New tech

I mentioned at the start of the year that we’d be looking at getting a replacement laptop for home use. Christine bought one earlier this year, and now I have one on the way too so that we each have our own device. I’ll blog about it once it has arrived and I’ve had a chance to play with it.

Unblogged June

May’s update was short, as I was mostly recovering, whereas this month I have been able to do a little more, including returning to my standard blogging pattern of every other day. Still, here’s a few things that didn’t result in a blog post of their own:

Tom Scott’s creator advice

Tom Scott got asked by Wired Magazine to answer questions from content creators, and it’s well worth watching (video embedded above and linked here). In particular, I agree with his suggestion of always having a ‘buffer’ – i.e. content that is ready to go live and scheduled. Tom notes that, at one point, he had several months of videos ready – until lockdown happened in 2020. That reduced his ‘buffer’ down to a few weeks.

I almost always write posts in advance – indeed, I’m writing this specific section a couple of weeks in advance, although I expect I’ll be adding the sections below later. That meant that I still had a few posts go live when I was in hospital last month, and meant that there was only a relatively brief break in my regular blogging schedule. Normally I have a buffer of at least three posts, but if I know I have some busy weekends coming up, I may write posts up to three weeks in advance.

Incidentally, one of my friends went to university with Tom, and I’ve met him before – we both went to the launch event for a new gallery at the National Science & Media Museum in Bradford in 2012. He’s back releasing weekly YouTube videos again, and he now does a weekly newsletter on Mondays. A particular highlight is his visit to Cragside, which we visited ourselves in 2024.

Car insurance renewal

Well this ended up being a right old rigmarole this year. My renewal quote came out at 67% more expensive than last year, at over £700. And, unfortunately, I found it difficult to find any other quotes that were meaningfully cheaper with the same or better cover. Ultimately, we ended up remaining with our existing insurer but with some slight tweaks to the policy, including a higher excess, to bring the quote down a bit.

I assume the reason for the higher prices was because our car is electric, which insurers still seem wary of. The various reminder emails from the comparison web sites I used last year, for our previous diesel car, were quite a bit lower. Still, our electric car passed its MOT this month with no work needed, and it’s proving to be much cheaper to run. And in any case, it’ll only be Christine driving it this year, although I remain the car’s registered keeper.

Thankful for air conditioning

It got rather warm last week. Whilst we were outside of the amber and (rare) red extreme heat warnings, I’m glad that we bought our portable air conditioning unit last year. Unsurprisingly, my review has also been one of the most popular blog posts on here in recent weeks, picking up quite a few hits from search engines.

As that model isn’t in stock in Amazon, it hasn’t resulted in me getting lots of commission payments, which is a shame. Though it’s a noisy unit, getting our bedroom cooled down before we go to sleep at night has made a big difference to our sleep quality.

More films on Letterboxd

When I wrote about Letterboxd earlier this month, I had managed to tick off 378 films. That’s now up to the pleasing number of 444.

Some of those are films that I have watched this month, but most are because I’ve remembered watching a film or found it whilst searching through old emails or tweets. Even more pleasingly, 187 of those films are in my diary, meaning that I’ve recorded the date when I’ve watched it too. So far, 24 of those 187 films are from this year.

I’m sure there are yet more films that I’ve watched but forgotten about, but I’ve logged the vast majority.

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