What is your favourite photo you’ve ever taken?

I don’t know what my favourite photo I’ve ever taken is. I have lots of photos I love from different times or ones that meant a lot at the time but maybe don’t mean so much now as life moves on. I don’t often look at old photos but I always have one as my ipad background.

Here are a few of them (just descriptions as most of these aren’t on my ipad or phone, getting sorted out with proper photo storage in the cloud and some prints is on my to do list for this year).

I love a photo of me and my Nanny which I think was taken in Christmas 2003 or 2004. I only know that it was that late because I bought that top at uni and it was taken in my parents kitchen and they moved to that house in 2003.

I have a fabulous picture of toddler Henry (one of my nephews) sitting in my manual wheelchair. I got out to get in the car, turned round and he was sat there. I also have a cool pic from the same day of him helping my brother to push me.

Two more recent photos I love are one of me and my sister with our brother’s children. Elodie, the youngest, was only a week old and it was the first time we met her. And one of me holding Elodie this past Christmas when she was about 10 weeks old.

Another photo that makes me smile is one from a moment I missed. My friend’s husband took it and she sent it to me. It’s from my 40th birthday party year. I was blowing out the candles at the time and it’s a picture of my sister in law holding my nephew Rafe who wasn’t quite two at the time. You can see from his expression that he’s trying to help blow out the candles.

I think that is why I love photos so much. Because they allow me to remember and reminisce but when people share photos with me they show me things I was part of but perhaps didn’t see.

What Book Is Next On Your Reading List?

This was the bloganuary prompt for Tues 18th January 2022.

For my 13th birthday my Auntie Sheila (who was actually my Dad’s aunt and also known affectionately as The Great Aunt) gave me copies of the Emily trilogy by L.M. Montgomery – Emily of New Moon, Emily Climbs and Emily’s Quest.

I loved them and I read them several times over my teens. I’ve thought about rereading them again in recent years but although I still have the copies of Emily Climbs and Emily’s Quest that Auntie Sheila gave me, my copy of Emily of New Moon, the first book in the trilogy is lost.

I did consider an e-copy of that to get me going but it didn’t feel right so they sat on my shelf unread but occasionally thought about. I can’t remember when I last read them, I think it must be 15 or 20 years.

Just before Christmas last year I was ordering books to give to my own nephews and niece. I added copies of the Emily books to the order – it got me over the free delivery amount. And made a very nice 40th birthday present to myself.

I doubt, when she bought them for my 13th birthday, Auntie Sheila would have had any idea I’d still want to read them at 40. Although she was well into her eighties when she died and the copies of three of L.M. Montgomery’s Anne books which have dedications saying they were gifts from her own parents as a child came from her house to mine. So maybe she hoped that would be the case?

I read Emily of New Moon last week, finished it at the weekend. I’m in the middle of Emily Climbs at the moment. And my next book will be Emily’s Quest. So far I’m really enjoying them, they’re taking me longer than I planned to read but that’s a good thing.

Later in the year I plan to revisit the Anne books too. I’ll read some other stuff in between Emily and Anne. I no longer have copies I had as a child and can’t remember how I got them. I’m pretty sure they weren’t all gifts from Auntie Sheila but I suspect she introduced me to them. If it wasn’t her, it might have been my Gran who also bought me books sometimes.

Rereading books is always different to reading them for the first time. And rereading books from childhood as an adult is even more different. I do think it’s an important part of anyones reading journey. That said, there are books I’ve loved that I won’t read again in case they aren’t as good a second time.

I’m really glad I took the chance on revisiting the Emily books after so long – and even more glad that at 40 I love them like I did at 13.

Journalling

A couple of years ago I did some private journalling and found it very helpful but as these things go with me the habit didn’t stick.

I then a bunch of journalling workshops in 2020 and 2021 via Writers HQ and really enjoyed them. I again managed to do some journalling outside of those but didn’t stick to it. Unless drafting blog posts and leaving them unfinished and unpublished counts as journalling?

Journalling is something I want to do, enjoy, and find very helpful. But I find motivation and sticking to it hard as I do with many things. I plan to journal, I buy fancy pens and notebooks or I set up another blog. But perhaps what I actually need to do is just return to posting on this blog several times a week and journal here?

A few people I follow online have been journalling using Bloganuary – a set of daily prompts. And I’ve found them very interesting and inspiring. I’m going to have a go at writing something for each one – mostly late because I am always late to a party. But I plan to attempt to get at least some of the upcoming ones posted on the day they are set.

2021 Review

Started the year with a cold.

Ending the year with a cold (I tested negative on PCR but a family member is positive)

Good stuff happened in between –

I’m double vaxxed and boosted, got a new powerchair and was able to trial new compression which seems to be working. And which means after six years I’m able to wear skechers again. My care is very stable. I was able to start doing things again after the lockdowns including volunteering in person and seeing some of my less local friends. I have a new niece, have read some brilliant books, crocheted several blankets and drunk a lot of cocktails. My parents threw me a fabulous early garden party for my 40th.

I wasn’t worried…

Earlier today I booked a couple of goes of assisted travel via the app. I really like using the app. It’s not 100% what I hoped it would be but it’s much quicker than phoning and I never get different routes or trains pushed on me due to being faster like when I ring. You book, it gets sent to the train operator to approve and along the way you get at least three emails per booking.

I wandered off to a podiatry appt right after booking, didn’t think anything of my booking just figured I’d come home to a full inbox.

When I was out “Sandra from passenger assistance” left me a VM asking me to call about my booking. She didn’t say if she was from the app (which us called Passenger Assistance from Transreport) or the train company (who also have a passenger assistance team), give me a phone number or say which booking it relates to. I figured maybe they were confused because I booked two identical journeys for two different days next week. But I was also worried it meant there was an issue with tomorrow’s journey (which I booked a few days ago).

Then I was sat in my podiatry appointment worried that I might have to cancel either my lunch tomorrow or one of my other trips, one of which is for a covid booster. And the head of the podiatry service was sat in assessing the podiatrist. Who gave me a lot of advice on managing my lymphoedema which anyone who actually considered me as a person should have realised I’d never manage (and given that he asked if I have a carer who lives with me and I said my only care need is compression, that I have no help to do)

I got home and managed via twitter to find out that she had to be from GWR. Called them, listened to a recorded spiel about how much easier using the app is. Got more annoyed because I’d tried the damn app. The record message said “up to a 15 min wait” but it was hardly any wait. Did various security questions to confirm I am in fact, me.

Only for the man I spoke to to tell me she’d wanted to make sure I knew that the local stopper service I’m booked on is non-reservable but I’m NOT TO WORRY because there will be a wheelchair space, they’ll make sure I get to it and I WON’T BE ABANDONED unable to get to it.


Seriously?! I’ve been using assisted travel since I was a teenager, I travel at minimum once a month and the local trains are always non-reservable. I only ever use the local stoppers out of Didcot. I was like “is that it? I knew that.” The guy I spoke to said it’s a new policy and sounded as bemused as I felt.

Because I wasn’t actually worried about travelling until Sandra left me a really vague voicemail and managed to worry rather than reassure me!

Random Bullet Points of Life

A few things that I’d like to record but which I might not get around to sharing in a full blog post (going by my current track record)

  • I have a new niece! Her name is Elodie and she is just over a month old.
  • I went to Birmingham last week to meet up with my friend Rachel. We went to Wildwood for lunch, had a good wander round and had a catch up in Costa. It was the first time we’d seen each other since Feb 2020 and the first long train trip I’d done since early March 2021. It was fab but I was a bit over travelling by the time I got home.
  • I hope to travel more next year; I really miss London.
  • Mum and I went to see Six the Musical at the end of August (can’t remember if I shared that), Pat and I went to see Bat Out of Hell in October and then a week later Mum and I went to see Jason Manford. Six and Jason Manford were both brilliant. Bat Out of Hell is based on the music of Meatloaf. The singing was great but the plot was a bit confusing and let it down.
  • On the grounds that it’s not November if I don’t do NaNoWriMo, I’m writing a lot. It’s not massively cohesive because 1) I’m not a linear writer and 2) I’ve done parts of 2 projects. I also am very unlikely to hit 50k but writing more is good.
  • I’m also crocheting a lot. I’m working on my 4th blanket of the year.
  • I have stopped wearing wraps and have been just in (stronger) compression stockings for slightly under a month. It also means I have been able to start wearing Skechers again! I am still not convinced this is a permanent change but it’s going better than I expected

Blogiversary

Once again two months have passed since I last wrote an update. I’ve thought a lot about things I might blog in that time. I’ve also spend a fair amount of time writing a post or two that I never published. In the end I decided over the weekend that I really, really had to either finish one of those drafts or write a post from scratch this week.

Then I looked at the date today and realised that today is my blogiversary. I set up my first blog in the days before they were called blogs. They were online diaries and I used and loved (and really miss) a site called Diaryland.

I set my page up in I think February 2000, wrote a few posts and abandoned it (the first of many abandoned blogs in my life). Fast forward to 8th November 2000 and I deleted all those entries and restarted. Which makes today, 8th November 2021, my 21st Blogiversary.

I’ve blogged both avidly and sporadically since then and I’m not sure I’d have believed anyone who told me back then that the thing I did that afternoon to kill some time would be something I still did 21 years later.

There have been many highs (and lows) in my blogging life since then. I’ve made friends and gain writing opportunities. I’ve used it for fun and for campaigning. And unfortunately I’ve sometimes upset people along the way.

I’m glad of the chance to look back at the days gone by. It’s interesting sometimes to read what I’ve done/thought/said and see what I’ve forgotten. I often try to keep my blogs vague enough so people won’t be identifiable but that has led to a few occasions when I’ve gone back a few months or years later and wondered what I actually met or who I was talking about!

A lot of my early years of blogging are lost to the abyss of the internet, I used to say I thought that was a good thing but actually I think I would like to reread them. It would probably make me cringe though.

But having that space to remember the highs and the lows of life as well as the day to day moments that don’t matter when they happen but sometimes do looking back isn’t something I want to lose. I suspect I’ll always blog (or share my life in some form) online as long as the opportunity exists.

It’s in my DNA.

A new set of wheels, part two

As I wrote in July I had ordered (now have) a new powerchair. Finding and choosing a new one has been tricky. But almost the hardest part has been biting the bullet and letting go of my Jive.

I got my first powerchair in 2004. It was an Enigma Energi. Basic, but rock solid. I’d been anti getting a powerchair but was in a situation where it was obvious I needed it. I had it nearly three years and the only thing I remember breaking was the charger.

It was a workhorse but as I used the chair more than expected, it’s poor suspension wasn’t comfortable and it just got to the point it worked but not for me. Replacing it was a no brainer.

In 2007 I got a Pride Jazzy 1121. It was technically second hand but we think it was probably used by it’s previous owner around five times. It looked brand new. That was a great chair for me, it had tilt in space which I don’t know if I’d have chosen for myself but now won’t be without. Interestingly, looking back the big issues I was having with spasticity at that time were at least partially caused by the fact it had a centre-mount footboard rather than swing away footplates.

But for the last year I had it it broke down several times. I got stranded in a lot of different places in a two or three week period due to an intermittent electrical fault. And then several months later I got stranded again due to another fault. There was no doubt it was time to start looking for a new chair.

Feb 2012 I got a Quickie Salsa M. It seemed like a brilliant chair at the time. A fair few problems and some niggles that affected the functionality. But I got to do things I loved in it, boring day to day stuff and some once in a lifetime events.

Then in 2016 the footplate broke. The techs came and took it to the workshop. They discovered it also had a broken chassis (the second in just over 4 years) and insurance wrote it off. I was told I could pay thousands of pounds to fix it but would be unable to insure it. Or they could fix the footplate and I could it back and keep using it until the chassis went completely. They warned me that when that happened I’d be immediately stranded, no getting it home. Again, replacing it was a no brainer.

The Quickie Jive M Hybrid was the replacement. Again, a few niggles but overall a really good chair for me. I did things I loved in it, things I hadn’t done before (either at all or not since I got a powerchair). I did a lot of the ongoing slog of daily life admin in it. It worked for me.

The big problem was that it was clearly getting worn out and the powerchair techs were suggesting it needed to be replaced. And how rattly it was beginning to unnerve me and affect my confidence. I also knew that the cost of ongoing repairs was mounting up and if I did the yearly service which was nearly due they’d just tell me to get a new one. But it was still working and saying “I want to move on” was tricky.

However as I said to the supplier the day I ordered it, I was aware that it could break anytime and I’d decided not to spend more . It could have been the next day on the way to breakfast to celebrate my brother’s birthday, it could be in six months time. So I just had to bite the bullet and order a new one.

I got my new Sango Advanced powerchair just over three weeks later. It’s been a bit of a process getting it set up and I miss my Jive. Changing wheelchairs is always hard because you don’t know if it feels wrong because it is wrong or because it’s just different to what you’re used to. And of course muscle memory plays havoc because my hand just reaches for the on button and jt’s not there anymore.

But I’ve had it nearly four weeks now, I’m getting some confidence in it and I think it will work out well. I will write more about it soon.

A Blog for Vidya

A couple of weeks ago I went to a nearby village and met up with some of my fellow Citizens Advice volunteers. We spent an hour or so sitting under a tree as the day drew to an end chatting.

There were seven of us, including someone I hadn’t met. It was nice to see them and to meet a new volunteer who joined virtually during the last year. It was very nice to catch up properly. I hadn’t realised how much I’d missed that until them. I’d spoken to several of them by video/chat/phone since we were last in the office but not all, and obviously that’s not the same as in person.

I have been going into the office for a couple of hours once a fortnight but it’s very different. No clients and only one other person in at the same time as me. I like it but I did enjoy the bigger group.

One of the people there, Vidya, mentioned reading my blog and asked about one of the posts. She also asked if I mind people reading but not commenting?

And actually that’s really common. Off the top of my head, I can name at least five or six people who have told me before that they read my blog and comment on it to me in person. But who don’t ever comment online.

I know a couple of them were people I know through their jobs who told me they didn’t know if they were allowed to comment. And I think several people only read it occasionally, say if I send them an email and they see the link in the signature. Or post it on FB.

And I do have to hold my own hands up and admit I’ve got really bad at commenting myself in recent years. I’m trying to comment more.

But that conversation did make me think, and wonder about who is out there reading my blog? So this is a blog for Vidya, and all my other lurkers reading this. Come say hi in the comments, it makes me smile when someone does.

A New Set of Wheels, part one

I ordered a new powerchair today! I’m really pleased with what I ordered and I think it should work really well for me.

It’s called the Sango Advanced. It’s from a Dutch brand called Dietz Power. The chair has been on the market over there for about 4 years and on the UK market for roughly 18 months. I hadn’t heard of it before it was suggested to me.

I was a bit unsure of getting a chair I’d never heard of, from a brand I’d never heard of. But having discussed (and ruled out) the latest Quickie model and tried and hated one of the Pride Quantum models I was beginning to think there wasn’t a good chair option out there for me. I was pretty disheartened the day they first came for me to trial the Sango.

I was impressed by the Sango, it seemed like there were lots of options and it would meet my needs well. When I had concerns about how something would work for me they were happy to discuss and troubleshoot. It was also a good size and it made me feel like I’d still be able to live my life in it. I hadn’t gone ahead with the Quantum last year because I didn’t think I’d be able to do the things I love in it and so preferred to keep my very battered, much loved, slowly dying Jive.

Because I’m not buying a chair to sit well, give me mobility and help with pain. I want it to do all these things but I want it to bring me fun and laughter and everything in life. I can see myself using this chair. I can see myself at Citizens Advice (I’m going back into the office this week), going on the train. Drinking cocktails, loading it down with too much shopping and covering it with mud.

A few times I’ve raced Henry, my oldest nephew, in my Jive. He always beats me. I’m told he’s looking forward to racing the new chair to see if he can still beat me. And I am too.