Normal-ish

Life is feeling quite like it’s back to what we considered normal pre-covid. Which is lovely.

But at the same time, several members of my family had covid a couple of weeks ago, masks are still a thing and I had to do a LFT before going out on Fri because I was all sneezy and snotty with probable hayfever but add in being tired and achy (not unusual for me) and it needed checking.

So it’s looking more normal but it’s also not. And add in other people having different boundaries for normal and it gets a bit weird.

But in the last six weeks this new normal has seen:

Meeting up with the writers in person again for the first time in months.

A pub lunch

Two trips to Birmingham to meet up with Rachel. We went to the theatre both times and saw Beauty and The Beast the first time, Joseph the second. I liked both but Joseph was amazing, it had been changed a lot since I last saw it.

A weekend away! Tied into the trip to see Joseph I spent two nights in a Premier Inn. It was so nice to sleep in a bed that wasn’t my own. As well as the show I went to an exhibition (Birmingham City of Empire to City of Diversity) and had a wander round the shops. And drank wine and read my book in the hotel bar. The Sunday I came home early ish because once I was back we were going to…

A show at Cornerstone. I, Elizabeth. A one woman show telling the story of Elizabeth I. Very interesting and thought provoking.

Coffee with a friend.

Afternoon tea with the fam for Mothers Day and a BBQ with the fam on Easter Sunday. Both a lot of

A trip to Reading to buy summer clothes.

Breakfast with Mum and then a visit to Waterstones. I had given her a gift voucher and a list of suggested books for Mothers Day so we went to look at those. But I also bought five books.

It’s not really any wonder I’m exhausted and stiff and my lymphoedema has flared up is it?!

No, no but it’s not funny at the end of the day is it? It’s serious

A couple of weeks ago my TikTok for you page was full of videos using a sound where there’s a room full of laughter. And then someone says “no, no but it’s not funny at the end of the day is it? It’s serious.” I’ve been thinking about that a lot lately.

About ten days ago I had a bad experience with something disability related. The internet would have you believe that this bad experience is something that happens regularly. And I could easily believe that at least one disabled person in the UK will experience that everyday (I have no figures to back that up).

Personally I’ve experienced that before but not for many years. In the past I’ve ended up in a dangerous situation more than once because of it. I’ve had sobbing panic attacks before because of it. It’s only due to a quirk of when it happened that it ended up just being very stressful and worrying this time. That and the kindness of a couple of strangers.

I could write about what happened. I could tell you about the strangers running around trying to find help. The other people who were around who didn’t realise there was a problem. The joking comment one of the other staff made to the staff member who came to my rescue when it was all over.

But every single person I’ve told this story to has laughed. Apparently the way I tell it is funny.

And that’s infuriating. Because it was a stressful, upsetting and potentially dangerous situation. A situation I regularly have to risk finding myself in again.

You Know You’ve Got CP When…

…it takes more than 10 years to find a way of you accessing wheelchair accessible scales.

… four months to get an appt after you hear about the service and start trying to get referred (which only took about three weeks)

…and less than 15 minutes for them to set up the scales, weigh you, weigh your wheelchair without you in it and pack up again.

After all that time and fight and failed attempts, it was a little bit of an anticlimax!

Bingo!

When a new carer joins the agency part of their training is shadowing an existing carer to see the sort of things they will have to do. Not necessarily the people they will be supporting but whoever the carer they are working with is. I recently had someone come shadow.

I find that whenever I get a new carer (shadow or actual carer) we have a lot of the same things happen. And after the call ended and my carer and the shadow left I was quite frustrated by the experience. But also half amused because this shadow had basically ticketed off several of my “new carer cliches” a bit like a bingo game.

Knew nothing about me and assumed I need more help than I do ✅

Shocked by how independent I am ✅

Commented on how big my flat is ✅

Offered to make me a cup of tea ✅

The same person is coming back to shadow later this week. Judging by what I’ve got left on my bingo card we’ll be talking about whether I’m close to my family, do they live nearby and how long have I lived in my flat. Depending on whether or not she’s seen my care plan* by then there’s also the optional “what did you do at uni?” square to fill.

*care plans contain a little bit about your history so the carer has something to chat to you about. Mine says I grew up in East Hagbourne and went to university in Stoke on Trent. It also includes that I volunteer for Citizens Advice and due to covid haven’t been able to do as much with my friends as I would like/have previously.

How are you changing the world? #Bloganuary

Today’s Bloganuary prompt is “How are you changing the world”

This isn’t an easy prompt for me.

Throughout my life I’ve been the first wheelchair user to do a’levels at the college I went to at 16. The “only disabled person” we’ve had do whatever. Or the second. It’s not been an easy place to be as being the first or even the second hasn’t been an easy journey. It’s been full of mistakes and difficulties and fighting. I wrote a post about that on instagram a few years ago; it’s still true now.

I’m not comfortable with claiming that “making things better for the wheelchair users who come next…” as me changing the world as they never felt like real, last changes and in many ways it’s been pretty fucking damaging to me.

I am more comfortable with the idea that some of my work may have improved the world for some people; made their lives better.

I will begrudgingly claim the fact that one of the organisations I occasionally volunteer for added an extra disabled toilet as my playing a role in making the world better for their disabled volunteers. But that wasn’t so much something I set out to do. I just kept turning up for several years and asking staff to escort me to the loo as you needed a building ID to get in the area it was (There were regular toilets in the area we volunteered so everyone else just went). Which eventually made staff start to talk about needing a solution.

I’ve had a carer tell me on her last shift with me that my encouragement as she cared for me had made her much better at her job. I’d like to think that’s true and maybe it’s helped other people she’s cared for. But I felt like a bitch when she told me. Because I encouraged her because I needed her to be more confident in what she was doing for me, to make the care she gave me what I needed. And not because I was a nice person.

I hope that the disability benefit appeals I’ve helped Citizens Advice clients with has changed the lives of those who were successful. Or at least that the extra money has made me things easier for me.

And in a smaller way, I hope seeing me and hearing me say “I get it, I hear you.” has helped all the various other people in my life (friends, family, other volunteers, clients.) at times.

A dream I remember

This was the Bloganuary prompt for 24th January.

I used to have a semi regular dream. It would never be identical but the same thing would be happening. I had it, probably several times a year, for as long as I can remember.

The dream would be that I’d be somewhere, doing something. That varied in each of the dreams. But I’d always be walking around doing whatever it was.

Then suddenly in the dream, I’d remember that I can’t walk. I’d them usually spend the rest of the dream crawling around in a panic looking for one wheelchair. Apart from once when I kept walking (I think this might have been when I was still a bit functional on my feet in the real world) but spent the rest of the dream in a panic that I’d fall before I either found my wheelchair or got where I was going as I knew I’d not get up if I did.

A few years ago I was talking to a friend and told her about the dream. She said “that’s a classic anxiety dream.” And I’ve never had that dream since.

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.