The Times They Are A-Changin’

I always thought this year would be a bit of a year of change for me. I had talked to friends and my need to do less, in order to do more but I’m not sure I really wrote about that here. But in order to do that a few things were going to need to change.

And I’m less interested in some of the things I was doing and more interested in trying some new things – photography is taking more of a role in my life this year than it has before. When I was at uni (back in the days before digital cameras) I would often take my camera on a night out but then for years I rarely took photos apart from in the big moments. With my Project 365 and the photography course I’ve started it’s a daily focus in my life in a way it’s never been before. It’s not always easy as I wrote last week but it’s an interesting one.

My reading tastes have changed too. I’m enjoying books with a bit more to them than I have for a few years and I think I’m reading more consistently too. As a part of that I don’t think I’m going to be sharing book reviews here this year because I want to move more to reading what I want rather than what’s available to review. But I have been sharing everything I read on Instagram (Insta is featuring heavily in my life this year it seems) and I intend to continue. I’m not saying I’m giving up book blogging though. Mostly because it’s hard to step away from something I’ve done for what must be nearly 10 years. And the lure of NetGalley is hard to resist!

My role at CAB has changed a lot over the years; particularly over the last couple with the social media stuff I do for them and benefit appeals. We’ve discussed potential changes and decided no right now but if I’m honest I suspect it will continue to evolve and grow as time goes on.

But the biggest changes I’m now expecting to experience in my life this year are the ones I originally wasn’t expecting. I can’t talk about them because it’s just a big gaping whole of unknown that says “this is going to change” with no details. And I keep veering between scared and excited. But I guess that’s the whole point of change.

Reading Thoughts

I feel like I’m reading more regularly at the moment than I have in a long time. I also feel like my 100 book goal for Goodreads is actually going to be met this year – and with longish books rather than novellas and serialisations (like the novel released in 4 part ones).

I’m enjoying reading more too and reading different stuff. It feels like sci-fi and memoir are going to feature heavily this year but we’ll have to see. Certainly I’ve read and loved two memoirs and a scifi book since Christmas (in amongst other things).

And I’m trying to be more mindful in my choices and in my buying books this year. I’m relatively sure that as much as I’d like this to last all year it won’t. But I’m trying to tackle the mountain that is my to be read pile by only buying books from actual bookshops not supermarkets or discount retailers (not that I generally shop in the Works due to accessibility reasons but that sort of thing). And also by having a rule that every time I buy books I can’t buy more until I’ve read those books and at least one other that’s on my shelves unread. I’m making an exception for books of essays and short stories though because I always dip in and out of those. It’s making me read things that I’ve had for ages and I’m enjoying the books that at one time I wanted to read.

You could probably say I’m having the equivalent of a depth year when it comes to reading but it’s something I’m not sure about. Whatever it is I’m enjoying reading again and seeing where it takes me.

Project 365

I have started doing Project 365 over on Instagram this year. I’ve always known it as “take a photo a day, every day. Something you’ve done or seen (or someone” but I think there are some websites that give a daily prompt etc.

I’ve tried to do the project a few times in the past and failed. This is the longest in a year that I’ve got as far 16 days in I think. It’s actually not as easy to do as you might think. Personally I’ve come to the conclusion that it’s probably easier to do the project if you live with someone (probably more so if it’s a child) or have a pet because then you always have something or someone to use or be inspired by.

Part of the problem is that I have this idea that the photos need to be interesting and not samey. But I’m coming round to the opposite idea – that actually it doesn’t matter, they just need to be something that’s relevant to that day. Because it’s a record for me, not for the others who might see or comment on the post.

There’s also an interesting side – I decided on Thursday that on Friday I would post a picture of the gym. My trainer took a picture of me using a cable machine and I posted it when I got home. Then my powerchair broke and I had to have an emergency tech visit (he thankfully was able to fix it.) and when I tried to go into town later on someone literally walked into me sideways on, fell over my chair and hit the ground hard. That left me shaken and the two events together meant it was a rubbish day. But if you saw the post you’d think it was good.

What I am really liking is the daily post aspect – the sentences I wrote describing my day or why I wrote that photo. I’ve written before about missing that part of old school blogging but I’m not sure I would keep doing it if I took away the daily photo aspect and moved it here.

When the bad is good

Sometimes being disabled is really weird. Because I got told something today that I’m sure for a lot of other people would be a bad thing but for me, it’s a good thing. And also because sometimes you can’t explain what your reality is like and how it differs to the norm to the person whose asking because your reality is all you’ve ever known. And you’ve no idea what normal is.

All my life I’ve been told my circulation in my legs isn’t great. That I don’t have full sensation in my feet and legs either. Which is a strange thing to experience because people ask about it and I can’t quantify it, all I can say is “I’m told I don’t have full sensation.” but not really anything more because I’ve only ever had this level of sensation so I don’t know what it should be like.

Today I went to Podiatry for the first time and they assessed my circulation and sensation to see if I qualified for their services. And she wanted to know who told me my sensation wasn’t normal. All I could say was that I’m lifelong disabled and but I don’t remember everything that’s ever happened to me medically. Because it’s always just been a fact, part of my CP and what makes me “Emma.” It’s not something I learned (one day I should blog about the time someone did a range of motion assessment on me and diagnosed something that worried me until I spoke to my Dad an hour later and he went “We already knew that.” and I then remembered that actually, yeah we did know that.)

If I’d wanted to be facetious I could have answered her question with “my parents.” because that’s probably who told me. But I don’t know who told them. I asked Mum on the phone later and she said she thought they were told I had sensory loss in my legs/feet when I was three or four. And then commented that she was now wondering herself.

Thirty five years later it’s little surprise that I had no idea of the answer when the podiatrist asked or that my GP wasn’t aware I have sensory loss when we discussed referring me to podiatry, is it?!

Anyway the assessment showed my circulation is fine and my sensation is somewhat lacking – I think there’s a more clinical term for it but the impression I got was “not terrible but not good.” which you know, should be bad news. But it’s not because that and the risk of cellulitis because of lymphoedema if I cut myself means I qualify for the podiatry services I’ve needed for years but not been able to access.

And that, is what makes being disabled so very weird sometimes.