Some News…

…not the big deal, slightly life changing news that people usually post online after the words “Some news” but I couldn’t resist it for a title.

A friend just wrote in an email to me that she hasn’t really seen any news type blogs lately. And she’s right, I haven’t been sharing any.

But I’m also not sure there’s any major news to share. Having said I wanted to share more of the day to day stuff though, here’s what’s going on. Several of these points probably deserve longer entries of their own, but this will do for now.

My wound on my thigh is healed. It was a much less scary experience than I thought it was going to be (probably helped by the fact I did avoid an actual pressure injury).

I am reading but I’ve not read any review books for a while. I’ve been thinking for ages about possibly giving up book reviewing in this form but it’s a hard decision to make. I’ve done it for a long time and I certainly don’t have the energy and enthusiasm for it now that a lot of people do. I may just go back to writing a short sentence or two about each book I read – years ago when I first was on twitter I posted a tweet about everything I read. So maybe doing that on twitter or Insta is the way forward. And yes, I’m aware that I’ve almost definitely blogged about this before.

I am slowly crocheting lots of things but mostly talking about a project I really want to do rather than doing it.

It’s almost November and I think I’m going to give NaNoWriMo a proper go again for the first time since I think 2014 (maybe 2015). I don’t anticipate going to any of the events this year but I will keep going to Didcot Writers stuff. I’ve been thinking about my idea a lot and I have a vague list of scenes. I’ve also done some reading about novel planning but I haven’t written a proper plan.

And that’s all the news.

I’ve had a little time to find the truth

(title is a line from the song A Little Time by The Beautiful South)

I’ve been thinking a lot lately about how much time simply being disabled takes.

Although there had always been the odd thing that took a long time or a lot of effort to sort out because of my disability it’s only really in the last year or so (since I started wearing compression and particularly since the carers started coming twice a day) that I really understood what people meant when they said being disabled takes a lot of time.

But suddenly I’m waiting twice a day for a carer to turn up. I get a rota but it frequently includes different times to the set one we agreed which can make it hard to plan. And it even more frequently gets changed and I don’t get told. Add in the fact that a standard across all care agencies is carers being allowed to come 15 minutes either side of the time without telling you and it all adds up to a lot of waiting. Anxiety too at times.

There’s the time waiting at the pharmacy and going back to point out they’ve got your compression prescription wrong but it’s so specialist they haven’t noticed (because apparently it’s too much to expect them to realise the prescription says you need medium and the packet says large).

There’s the time spent explaining (often again and again) that your disability means you can’t do that and what your access needs are. I once had to explain three times in one phone call that when I say I can’t stand unsupported I really, truly, 100% mean I can’t stand unsupported. They “checked with a colleague” and told me they would be able to do it with me sitting. I arrived, waited 45 minutes after my appt time and the first thing they said was “we don’t have adaptive equipment, you need to be able to stand”

Unravelling the bureaucracy of the NHS is a current bugbear of mine that is taking a huge amount of time. It’s been suggested I need something that most people could have done at the GP surgery. My wheelchair means I can’t. I’ve been referred to what appears to be the appropriate service, booked at appt (for February because what’s a three month wait?) only to get a letter three days later saying they’ve cancelled my referral and appt as I don’t meet the criteria. I should self refer to XYZ community service. Who when I emailed said “no, can’t do that for a wheelchair user.” So now I’m waiting again for a phone call with my GP (in two weeks) to probably be referred back to where she originally wanted me to go.

There’s the time spent trying to find out access information, then solve problems and/or find alternative places to go when you turn up and find out they told you what they thought you wanted to hear, or “forgot to mention the step” I refuse to ring places for access info any more. Email is more likely to land in front of the right person. And gives a paper trail when it goes wrong. But waiting for a reply takes even longer than ringing does.

A source of wasted time and frustration is all the phone calls. Listening to the recorded message on a so called “accessible tickets” phone line that takes ages to be answered and keeps suggesting “it’s quicker and easier to book online” when the first thing you see online is “please ring if you have access needs” Or having to book assisted travel on the phone because although you can book online the ramp never turns up when I do (because it turns out, the online booking gets emailed somewhere for someone to manually input on the system so when they’re busy it doesn’t get done. And they’re always busy)

The wheelchair replacement parts that take weeks and weeks to turn up. Often longer than you’ve been told. And they don’t tell you or the supplier about the delay. When you ask for an update you get told. With a shrug and a “that’s Sunrise for you”.

It’s no wonder that lately I feel like fitting everything in is a huge struggle and I just don’t have enough time is it?!

The Life and Times of Emma

I seem to have accidentally abandoned my blog again over the last two months. I didn’t intend to do that but life seemed to get in the way rather and it stopped me doing what I planned (the changes to this I talked about last time).

And I’ve been thinking for a few weeks that I should write something here but not doing it. Then yesterday my diaryland days popped into my mind. Those were my uni years and a year or two after (from the end of 2000 until early 2006 ish) I think when I use to post something most days. Often just simple and what I’d been up to. A fair amount of that is lost now which I regret.

Sometimes I look back at what is still available. Some of it makes me cringe with how banal it is (an exact list of what I bought in co-op isn’t something anyone wants to read!) and some of it makes me wonder at how naive I was (because I never, never mentioned the town I grew up in or my surname because that wasn’t seen as safe in those days. But I did post which uni I was at and the exact hall of residence I lived in…). But it’s a record of who I was then and what I was doing/seeing/thinking. A lot of which I read and think “I forgot that…”

When I first moved my blog to wordpress I called it The Life and Times of Emma. It was a pretty apt name as it was a record, an outlet for me and even (as much as I hate it) an inadvertent awareness raising tool. It’s moved away from that with the introduction of book blogging and with blogging as a whole no longer being anonymous. Sometimes I censor myself because I don’t want to deal with other people’s reactions to my experiences. And I miss what my writing, my blogging was before all of that.

I miss having that record of my life, my history the most. And I was thinking last night that I should start writing that again. I’m going to try to do so more. I don’t know whether I’ll do that here or offline but I want a record again.

So I suppose I should start that record now with what life’s been like over the last two or so months.

Unexpected would be a good word. The phrase “life’s what happens when you’re busy making other plans” definitely applies.

My wheelchair broke the day I wrote my last entry. It ended up being in the workshop for exactly a month and costing over a grand to repair (that included replacement tyres and castors but still it was a pricey break.) After about 5 days they got me a loan chair. I coped much better than expected just having my manual for a few days (and then having to mostly use my manual in the house because the loan chair was a poor fit) but I was rather limited until I got my own chair back.

I have a new nephew! His name is Rafe and he was one month old yesterday. He was born the same day I got my powerchair back so it was basically the best day ever. He is super cute and everyone is doing well. I learned how to do c2c crochet and made him a rainbow blanket. I can see myself doing a lot of c2c as I liked it a lot (a bit like when I learned to do Granny Squares when I made Henry’s baby blanket).

I have been to London twice. Once over night to go to the world paraswimming championships when I also went to for a big wander and to the orbit and the national gallery. And once last week for the day to go to this years Koestler Arts exhibition.

I have hired a motomed (physio bike) to have at home. I’m enjoying it.

In less positive news I had something happen to my thigh (we’re not sure what, possibly a bite) that then got a localised skin infection. That cleared up but I was left with a wound that was being described as “not a pressure sore but at high risk of becoming one” I was very scared of that and have been going to the nurse to have it dressed for the last four weeks. It has not turned into a pressure sore and is healing well so it’s much more positive than anticipated.

The other shitty news happening is a pest problem in the building in live in. That was as horrific as you might imagine and there was a concern my carers would need to stop coming. But we’re getting on top of it now so there’s light at the end of the tunnel.

And that’s the life and times of Emma over the last two months.