An update four years in the making

I used to go to The New Theatre in Oxford a lot but I haven’t been there since December 2014. Long story short we tried to go to see Dirty Dancing for my birthday that year and ridiculous access problems and terrible staff attitudes meant we couldn’t – and I didn’t feel safe trying again.

I wrote about that in several posts back then – Attitude is Everything was the first. A few months later I wrote Third time lucky? and Third Time Lucky? Yes.

We’ve not been back and I even travelled to Birmingham and stayed in a hotel to see a show that I was desperate to once. Even though it was coming to Oxford (I often go to shows in Birmingham with a friend but she didn’t want to go to that one). But this year Kinky Boots is touring and when I tried to book for Birmingham I couldn’t get tickets that weren’t restricted view.

So Mum and I discussed it and decided we would try to go to the New Theatre again.

We went and it was OK. The show was great and I got in and out of the auditorium fine. I was worried about that and didn’t think it would happen. And I was pleased once I was back in the foyer at the end.

The only real problem was that the wheelchair spaces are at the back only and there were a couple of drunk girls in front of us causing a nuisance. It ruined the first half of the show with their attention seeking attitude and keeping talking. Plus repeatedly waving their arms around above their heads and standing up blocked my view. I spoke to the ushers at the interval and they dealt with it (they had already noticed and I’d noticed them noticing but I wanted to be sure they were doing more than notice). They were taken out to speak to the manager and didn’t return. But the ushers came and spoke to me and said they had “chosen to leave”. I was pleased with the way they handled it.

Kinky Boots is a show I’d recommend. I’ve been listening to the soundtrack ever since and one of the songs keeps getting stuck in my head. I don’t think we’d go and see it again anytime soon but I wouldn’t rule out ever going again.

I’m not so sure if we’ll go back to the New Theatre again. It’s a bit of a moot point because at the moment everything they have coming up we’ve either seen, don’t fancy or want to do but can’t do the dates.

But it was still the lift I had all the problems with back in 2014; I could see that from the manufactured date in the lift. And when the access usher came to say hello at the start she asked if we’d been to the theatre. We said we had but not for a few years and Mum explained the problems we’d had. Her comment was that the lift is a bit tempermental but she was surprised I’d had to miss the show because they do have a ramp to put on the stairs.

I wish I could say I can’t believe that four and a bit years after all those arguments about the safety of that ramp they’re still using it and claiming it’s safe. But I’d be lying. All I can say is I won’t be using it and I don’t know if I can risk going there again on the off chance it’s that or nothing.

At the moment – 22nd Feb 19

It’s been a frustrating week but I think (hope) it’s all about to come good.

The work for my bathroom did actually drag into a second week and all the way until today. They couldn’t lay the floor on Friday because it wasn’t dry, came back Monday and it still wasn’t dry plus there was obvious water where there shouldn’t have been (given I’d not been able to use the shower). At which point they discovered the reason I’ve had so many problems with my shower is because at some point in the work last year someone drilled into a waste pipe. So that had to be fixed and some of the work redone. But it’s done and I have a new floor and new paint and the guy whose done most of the work went to get them bacon sandwiches this morning and got me one too so it’s all good.

I saw a carer this morning who I hadn’t seen for a few months and she was impressed or even shocked when she saw how much better my legs look, particularly my left. Mum said similar last week when we went to Cornerstone so I could borrow their level access shower. I’m trying not to get too excited about that because the nature of lymphoedema means it will soon change again. 

Last weekend I went with my brother and his family to a play of the Giant Jam Sandwich which is a book we all love. Ben had it when he was a child (it was his favourite) and I bought it for Henry for his very first Christmas when he was just over two months old. It was a lot of fun and we all enjoyed it, especially Henry. As he also loved the kids play Mum and I took him too last year I think we might need to start a tradition.

My writer’s group put on a feedback evening last night and I read the first 500 or so words of a novel I started writing a few years ago. I’ve been picking at the idea again recently so might start rewriting it. The feedback was useful but I haven’t decided what to do about the novel.

In which able-bodied people are weird but if I point it out I’m the weird one.

I was in my manual chair on Thursday while the powerchair was with the tech.

My morning carer said “Wow you must be strong doing that.” And I was pleased because I feel like I’ve lost so much strength and can do so little in my manual compared to years ago. But I was managing well and I liked the compliment.

An hour later the tech came and took my powerchair. Once he left the guy who was here working on my bathroom asked if there was something wrong with it. I explained that it had gone for some routine stuff. Then he said “it must be hard pushing that chair.” I just said “well it’s certainly not as quick!”

At first it amused me to have two such contrasting reactions to the same thing – both congratulatory and commiseration. But it also frustrated me. Because it’s just one form that my normal takes, albeit a different one to most people

And it makes me wonder if I should start doing the same thing to able-bodied people. My Dad and my Uncle are in my garden doing some work at the moment. If I went out there and was like “You must be really strong walking like that” or “That must hard climbing that ladder” they’d think I was really weird.

I don’t get it.

At The Moment (15th February 2019)

I think it probably has been a good week – a productive  one at least. But it doesn’t really feel like it. Because for me the productiveness has meant I’ve had to be at home all day every day. I have managed to get out quickly all of the days apart from one but I’ve not been to CAB, writing or disability active.

There’s been contractors here all week sorting out my bathroom once and for all. They are here now laying the floor. It’s been quicker than I thought it would be (I had been told the work may go into next week) and it looks like it’s going to be good. There’s just a bit of debate at the moment about where the right place to put my shower chair is.

In related news I tried to take advantage of being in anyway to get the gas struts on my powerchair sorted out. But of course I told the tech any day this week, he choose yesterday and was delayed getting here until midmorning and less than 10 minutes later the contractor left as he hadn’t received my new grab rails at that point and everything else was better left until after the floor was laid today. Still, that’s the redesigned gas strut fitted now so hopefully that’s the end of those problems.

Also talking of my powerchair we’ve come to the conclusion the problem with the batteries was the charger. So I’ve bought the one they lent me. It’s one of those things where you say “I spent X for a second hand charger” and everybody is like “you’ve been ripped off, that’s stupid money, you should have bought a new one.” And then you point out that a new one is practically three times the price.

I’ve been reading, writing and crocheting this week whilst doing all my waiting in but as always I’m putting too much pressure on myself and I don’t feel like I’ve done enough. Because I set myself up to fail by deciding “I’m going to read a whole book, write 1000 words and crochet one blanket stripe each day.” and what actually happens is I read a book and a half, write 2000 words in total, start listening to an audiobook and decide to start a different crochet project. And feel like a failure.

Changing to the subject to thing I’ve been doing, Mum and I went to see a play last Saturday night. It’s called The Capital and is a 90 minute play with no dialogue. It stars 5 actors playing a lot more than 5 characters and uses moving walkways (travelators). It was good – much better than that perhaps sounds as it’s hard to describe – and I enjoyed it but Mum really loved it much more than I did. I personally felt that it needed a little explaining but she didn’t.

At the moment (9th Feb)h

It’s been quite a week…

I am having a writing binge day. I’m actually up a bit earlier than normal and writing the beginning of this entry before going to get showered and dressed.

I’ve not written anything for a few days due to being too busy and then too tired. I got a really lovely compliment about my writing from one of my favourite authors yesterday so I am inspired today!

It’s been a good, but very exhausting, week. I spent Wednesday and Thursday in London so I could attend the Spring Blogger Evening at Simon and Schuster. It’s fair to say I packed it in around that, going to Canary Wharf and the Oxo Gallery on Weds. then on Thurs I met up with a friend we did quick visits to the British Library, House of Illustration and Tate Modern. There’s a reason I almost missed my train home!

You’d think given that I was on the train to Waterloo and back this week (roughly two hours each way) I would have got lots of reading done. I have got very little reading done this week. A fair chunk of audiobook – I Capture The Castle by Dodie Smith – and a bit of a book I got for Christmas – The Year That Changed Everything by Cathy Kelly – is all I did. The Waterloo and back train often sees me read a whole book but I was mostly on my iPad this time.

Mum took advantage of my not being around and blitzed my flat. It looks a lot better!

Yesterday the OT came to see how I’m getting on with the monkey pole he got me. Answer: not very well, it’s not safe. He moved it and thinks it might be safer now but didn’t want to see me using it to position and spoiler: it’s not. But he agrees with my thoughts on what might work better and is going to look into it. I had wanted a second bed leaver like I have now but on the other side of my bed. Unfortunately the design of itt makes that impossible (I had forgotten about part of it because you can’ see it on he one I use now due to furniture layout)

I abandoned writing this part way thru to go and get showered and dressed but I was ready slightly early so I came back to it and it’s beginning to look like I might get this finished (but not posted) before she comes.

edit, later: this was finished before the carer came but it did take a few hours to post it

Books and the City Spring Blogger Evening 2019

I was lucky enough to be invited to the Books and the City Spring Blogger Evening 2019 and I had a great time.

The invite said there would be five authors doing authors at the event. When we got there we discovered there were actually ten authors there!

First we had just over an hour to mingle and chat to people. There were yummy nibbles and drinks and some amazing cupcakes with pictures of the book covers on them. I had a couple of glasses of Bucks Fizz and chatted to quite a few people. Some of them I knew and some I didn’t.  I was pleased to get to speak to so many people and put some faces to names.

The went sat down for the main event (and I knew I’d arrived when there was a big space  at the front kept clear with a piece of paper on the floor saying “reserved for Emma Crees”). Five of the authors did a reading from their upcoming book.

First was Iona Grey whose new book The Glittering Hour is being published on 30th May this year.  I am so excited to read this book because it sounds so great and I loved her first book, Letters to the Lost so much (it’s one of my favourite ever books). Plus The Glittering Hour is set in one of my favourite periods of recent history.

Alice Peterson read from If You Were Here next. That comes out 22nd August. I had quite a long chat with Alice before the readings and I think this is likely to be an emotional read that makes you think.

Living My Best Life by Claire Frost was the next book featured – it’s published on 23rd July. The sample she read sounded quite fun so I think it will make a good read for a lazy sunny day (should we get sun this year).

Milly Johnson is one of those author’s where you know what you’re going to get but the journey along the way might surprise you. The short sample she read from her new book The Magnificent Mrs Mayhew was full of her trademark humour. I wanted to hear more right now but it’s not released until 7th March.

Finally, Rachel Hore read from The Love Child which is coming in September. I loved the sound of that book and it’s going to be a long wait to read it. Luckily I picked up a couple of her earlier books from the freebie shelf so they will tide me over.

The problem with these readings is that each one of them makes me want to read the book immediately! Even the one that before the reading I would have told you I wasn’t interested in. I mean, it’s hardly a problem but I’m impatient and don’t want to wait!

We were sent home with a lovely goody bag containing samplers of the five books there were readings of and three others whose author was there (new ones from Heidi Swain, Juliet Ashton and Louise Candlish) as well as proofs of new books from Catherine Isaac and Paige Toon.  We also got free rein on a freebie shelf and a couple of other treats in our goody bags. It’s safe to say the Books and the City team always spoil us!

After the reading we had the chance to get our samplers signed and Heidi, Juliet, Catherine and Louise joined the top table to sign theirs as well. Author Anstey Harris (whose book The Truths and Triumphs of Grace Atherton was released last month and which I’ve yet to read but have heard great stuff) was also there and we had a bit of a chat.

Then it was time to reluctantly leave and figure out just how I was getting all those freebies back to the hotel. I had an absolutely fantastic time and want to thank SJ and the Books and the City team for another brilliant event.

Snow Days

 

Day two of my being stuck in due to snow/ice is coming to an end. It’s definitely melting but the paths right outside my house were absolutely covered in ice today. As much as my chair may well handle it for the short distance to the main road (which I suspect is clearly), it’s not worth the risk.  I may get out tomorrow if it’s improved a bit, I may not.

 

Snow is something that worries me. It’s pretty to look at but it’s also pretty damn inaccessible.

 

For the last several years I’ve often stressed myself in winter working on the panicked idea that I had to get my prescription as soon as it was ready. And that food shopping needed to be got pretty much immediately. There could be no waiting for a few days to replace the cheese (even if I didn’t need it straight away) because what if it snowed and I couldn’t get out for days on end and not having cheese became a real problem?!

 

It was never a real problem because I have family nearby and they would almost always be available to get anything I needed in a real crisis. And not having cheese would mean I missed out on some yummy meals but never become a real problem. (Med on the other hand…)

 

The biggest issue actually is my difficulty in asking for help. And how hard I find it to lose my independence. The unending sight of snow with no idea when I might get out again was a huge problem too because if you know you’re stuck here for three days you can cope. If you know you can get out if you want to but it’s difficult it’s copeable. If you use a wheelchair that might not manage the snow and there’s no definite end in sight it’s different.

 

I’ve been trying over the last year or so to be slightly less panicked about needing to do things immediately just in case.

 

I shopped Wednesday and grabbed a couple of extra bits due to the forecast but then realised when I got home I needed bread. As I was near Sainsburys on Thursday I picked up bread and a few extra bits again. I knew I had everything I needed for several days and if it snowed I’d be fine.

 

I was right, I’m absolutely fine for food and meds and everything even though I haven’t been out for two days.. I have enough bread etc to keep me going tomorrow and Monday, possibly Tuesday. Realistically the freezer and my cupboards could feed me several days after that but my meal choices may be slightly unusual.

 

But when I left the writers workshop on Thursday night as the first flurries of snow fell I felt panicked. I regretted that the workshops have changed venue. There is no shop near where they are now held but the big Sainsburys is a couple of minutes from the previous venue. I had a strong, strong urge to go and do a panic shop before I lost my ability to go out. To run round sainsburys picking up things I knew didn’t need but didn’t feel I could run the risk of not having.

 

I don’t even know what I would have bought, I just really felt I needed more food in the house because it was snowing. Things that it would make me feel better to have but would very possibly have been doomed to go uneaten.

 

My head knows I’m fine. That the snow will go in a few days and I’ll be out and about again – possibly even as soon as tomorrow. But my heart isn’t so sure.

At the moment (1st Feb 19)

A week in the life of an Emma…

We had the CAB post-Christmas, Christmas social on Tuesday. We went to a local hotel/restaurant. It was very nice and I had lovely beef. Unfortunately I wouldn’t be able to go with family or friends as there is a step between the restaurant and where the loos are in the hotel reception – we had a private room for our social. It was a smaller social than usual but that was good because with that and being in a private room we were able to be all around one table and quiet enough to just have one conversation with the whole group most of the time. I don’t remember there being one like that before but I liked it.

I went to Didcot Access Group on Wednesday. It’s the second time I’ve been since rejoining (I was part of it when it was in quite a different form just after I left uni – I think it’s more than 10 years since I left). I’m not sure about it as my priorities seems to be different to the group but think I’ll keep going. I’d had a bit of a rubbish morning before going there so that was probably colouring my reaction to it.

There is snow! Lots of snow and more coming down as I write this. So I won’t be going out today and frankly at the moment I wouldn’t be surprised if I was stuck here all weekend.

The OT I saw last year is due out just after lunch to reassess if the equipment he got me (monkey pole) has helped. The answer is no because it isn’t safe. However I am surprised he hasn’t called to cancel due to the weather.

In January I wrote 15,392 words. That includes fiction, blogs, everything. It is substantially fewer than my ridiculous goal for the year says I should have hit in January to be in track but I’m really pleased – and I always knew that I may have to reassess that goal. I plan to keep aiming for that in February and reassess at the beginning of March.

I read 8 books in January. I also started but didn’t finish 5 books – I’m still reading 2 of those and may or may not go back to the other 3.