Normally Abnormal

Every so often something happens which reminds me that my normal isn’t everyone else’s normal. It usually involves a conversation with an able-bodied person, happens unexpectedly, and leaves me confused.

When I was a child it was watching people on stage in the theatre and wondering how they could do that. How could they stand there and not be scared of falling off? I have no real balance when standing and I didn’t understand that the falls which then were a fact of my life weren’t for able-bodied people.

And in the last week it was several people not understanding that I just fell over. I have no balance, I started slipping when transferring and I went.

Several people having been asking “was it low blood sugar, did my blood pressure drop? Was I dizzy, did I faint or feel ill?” and really struggling to understand that there is no reason for that fall other than “I’ve got Cerebral Palsy.”

I really don’t understand what’s so difficult to understand about that. I found that lack of understanding confusing and frustrating. Particularly when one of the carers basically decided for herself that I was dehydrated.

It was over two years since my last fall but it’s such a normal thing to me and my family. I was on the floor waiting for my brother to come be an extra pair of hands to get me up and my mum was tidying my bedroom, asking me what stuff she could put away or bin. Then once the decision was made I needed ambulance my brother and mum went home and my Dad went into my kitchen and started doing the washing up.

When the paramedics had me back in my chair, I told them that having to ask for help was worse than actually having fallen. We won’t go into how people have struggled to understand that.

40 Before 40: Book of Mormon

I’m not sure I wrote about this in detail here before but as I’m turning 40 at the end of next year (I’m just over 38 now) I wrote a list of 40 goals to achieve (or at least try to) before I’m 40. Several of them are travel related which was already going to be a stretch at best and most honestly unrealistic. But a girl can dream. With coronavirus those are now looking even more out of reach.

However two weeks ago (7th March) my friend Carolyn and I went to Birmingham for the day to tick one of them off the list – we went to see a matinee of Book of Mormon.

We got the train via Oxford to New Street and then as we had some time to spare before our lunch booking we popped into Foyles. I bought myself three books – all classics from the 1001 Books You Must Read Before You Die list (one of my other goals on my 40 list is to reach 250 books read on that). And ones in the Penguin paperback range – the ones that they used to do (or maybe still do) in hardback as part of the clothbound classics range. I love those covers and I’m not officially collecting them but I kind of am…

Next it was to Pizza Express, a yummy lunch and a bottle of wine to share. Delicious and fun to spend some time with a friend catching up away from the day to day (things haven’t been easy for me but they’d been more difficult for her). We went to a couple more shops and then it was time to go to the theatre!

I’ve been to the Hippodrome loads of times but we tried going a slightly different way that I thought would cut off a huge hill and be easier. I got us lost. I was actually right that it was easier but I got confused about part of it and took us on a huge unnecessary loop in the wrong direction. We came back that way and it was easier.

Book of Mormon was great! I hadn’t heard any of the songs in advance but I enjoyed it and I’ve been singing some of them since. All I really knew about the show before we went was what my mum had told me after she and my sister went. Which was that it was good but quite rude. And I’d read a few comments online that it was offensive.

I thought it managed to hit the exact place where it was thought provoking, funny and a bit offensive without being too offensive. It was on the line a bit in places. I’d expected the offensive bits to be about religion but I hadn’t expected it to be about race too (Mostly as I hadn’t known that it’s set in part in Uganda). In advance I’d expected that I wouldn’t find it offensive but it did make me feel it was slightly on the inappropriate a couple of times. There was also a fair bit of rude humour which I was expecting as it’s written by the creators of South Park.

When we were waiting for the lift out of the theatre another lady waiting asked if we’d enjoyed it. It should have been on for a month and she told us she was hoping to get tickets for a later performance to see it again. Carolyn and I both said we’d enjoyed it but aren’t desperate to see it again. If, in a few years, it tours again I might go. But for now I enjoyed it, I’m glad I saw it and that’s enjoy.

Coming home we got the train Birmingham Moor Street via Banbury. I couldn’t get a wheelchair space out of New Street when I booked my assistance. I’d been thinking about trying the train from Moor Street for ages and it worked very well. It’s a quieter, smaller station very quaint looking. And the trains are lower and easier to get on and off of. It’s just a real shame that the train that runs all the way between here and Banbury and back only runs once every two hours and doesn’t always work so well timewise.

It’s not up there on my list of favourite musicals (I’ve seen a lot of them so I have a lot to compare it to) but it was fun. If you like musicals and have an open mind I would recommend Book of Mormon.

Damned if you do, damned if you don’t

So. Things have got a bit scary out there with this Coronavirus/Covid-19 stuff.

I’m possibly, possibly not at a higher risk because of it. It’s hard to say because I don’t have any of the health conditions like high blood pressure or diabetes that are being said to increase your risk. And I’m not elderly. But having a neurological condition does put you in at risk group and qualify you for the flu jab. And it’s known that respiratory stuff can be difficult to clear for wheelchair users as a group (although for me, personally, I am not fully reliant on my chair and I can cough). So it’s fair to say I am probably at something of an increased risk but not as much as many others with disabilities or health problems.

I’m reducing how much I’m going out and seeing people – I did most of my normal stuff this week but not all of it and I’m not planning on going anywhere this weekend. Just doing lots of writing instead today and hopefully catching up on all the blogs I want to write over the next few days. I don’t anticipate going anywhere beyond a wander in the fresh air over the next week or longer. I did say I wanted to tackle my TBR mountain this year…

But I can’t completely self isolate because of the carers. From last night to next Sunday night the plan is I will have 9 different people here, most of them only once. I could technically stop them because my only care need is my compression. But I can’t stop my compression because the minute I do my lymphoedema will start to deteriorate (and as I recently changed care agencies it’s been a bit unstable anyway). That would put me at risk of cellulitis and other complications, some of which can require hospitalisation or even be life-threatening. And wouldn’t take long to undo all the work the compression has done.

I think at the moment having the carers is probably ok but that there may come a time when it isn’t (or more likely when the agency struggle to do it). I need to balance the risk we know definitely exists (deterioration in my health) versus the potential risk of the virus

So I’m almost in the position where I’m damned if I do and damned if I don’t…

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.

Happy New Year

I’m not making any new years resolutions for 2020 but looking at my draft posts list for this blog it seems “actually finish writing the blog entries I start” would be a good one. I didn’t realise quite how many unfinished drafts I had.

I do have lots of plans and ideas for the new year. But in terms of goals I’m working on a “40 Before 40” list. I need a couple more goals before it’s finished but I’ve already arranged a couple of things on the list and started one. I keep changing my mind about whether I will share the completed list here but suffice to say it’s quite aspirational, more than realistic and I’m going into this thinking I’m ok with maybe not managing all 40 (for one thing there is a lot of travel).

It’s traditional in these blogs to share some highlights of the year, favourite books read, things I’m proud of. I’m pretty tired and run down and not sure I have any enthusiasm for that.

But in the interests of tradition:

Highlights include Kinky Boots the musical with mum (and some other brilliant shows) and Les Miserables with Rach. I really enjoyed many trips out including to Wimbledon, the World ParaSwimming Championships and a day in Brussels on the Eurostar. Family highlights included my Mum’s 60th birthday, my Dad’s 70th and the birth of my new nephew.

I was a bit stuck for favourite books I’ve read this year so just looked at Goodreads. I read 88 books or 28,639 pages this year (or will have by midnight, I added my current book already for statistical purposes but haven’t quite finished it). I also started but didn’t finish a lot more books. Interestingly, I think most of my recent reading has been audiobooks.

Looking at Goodreads I think books of note were The Cows by Dawn O’Porter, The Temptation of Gracie by Santa Montefiore and The Truths and Triumphs of Grace Atherton by Anstey Harris. The book that’s stayed with me most would be Vox by Christina Dalcher.

Things I’m proud of? Everything I’ve achieved. Coping with some real crap that was thrown at me which proved difficult to sort and in some cases still isn’t resolved. And the fact that despite having a real “I can’t do this any more” wobble a week or so before Christmas I’m continuing to perserve with wearing compression and having carers (and seeing results for it).

It’s fair to say there’s been a lot of 2019 that’s been bad or a slog but there’s also been a fair amount of good. Overall it’s been an Ok year for me personally but I’d like better in 2020.

Happy New Year!

Picking my battles

Unfortunately I had to gently complain about an ableist comment that someone made about/to me last week. The comment had been shouted across to someone (it was about my access needs) and that had been my biggest issue with it. It’s one thing to say something inappropriate and ableist to me, it’s a whole nother ball game to shout it for hundreds of people to potentially hear. It was in one of my favourite places and the person I complained to I’ve known for a few years through there. She commented that I’m always patient with them.

And I thought “I’m not. “

I’m not. I’m picking my battles. If I go in screaming and shouting about what he said to me and how it was said I ruin the rest of the event for me. Or I get a reputation and that makes me uncomfortable. Or it becomes difficult to go back there because of what got said. And that’s somewhere I really enjoy and go to at least once a week.

And also, as I seem to tell CAB clients fairly regularly, taking the emotion out of it gets better results because yes it’s shit what happened to them but if you complain calmly people hear your point, not your anger.

But it’s about more than picking my battles. It’s about the fact things like this happen all the time and I’ve become a bit conditioned to it and ground down. Not to mention how exhausting being angry all the time can be.

There are many more moments like that where I either know it’s going to take more energy that I want to spend or I just can’t be bothered and let it go, than there are ones I complain about.

Later that weekend I posted to the CP group I sometimes use about it. I was trying to comment on the “you’re so patient” view vs the reality. And several people said what had been said wouldn’t have bothered them. One told me I needed to learn to pick my battles because it would be freeing and what had been said wasn’t a big deal. To be honest that pissed me off more than the original ableist comment. I replied that I do pick my battles but it was something that mattered to me. #

Then I decided to pick my battles and left the group.

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?!