Burn out

I’ve made a couple of attempts over the last few days at writing a blog post about the nuances of accessibility. And I still might do that at some point but at the moment I can’t make my thoughts on the matter into a coherent post.

Part of the problem, is that I’m a 40 year old life long disabled person. I’ve spent my entire life making do, fighting for accessibility and being the first to do whatever. Admittedly I have seen huge improvements in accessibility in my lifetime but there is still much to do. And I’m tired of it.

I suppose (having taken a break in writing this to think about it) that post about nuances probably was a struggle because there’s a nuance I wasn’t including. The energy it takes to fight for accessibility, the choices I make to fight this one but let that one go (and how I choose). And the energy those around me take up when they get angry on my behalf without understanding, try to find solutions when I’ve already considered them and/or tell me that it’s not right, it should be accessible and I shouldn’t let my disability stop me.

I’m really fucking exhausted of all of it. Burnt out really. But there’s not many people I can tell that too.

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.

Value for Money

One of my carers has asked me about two things I’ve bought lately (a stocking aid and some cloth masks) and specifically how much they’ve cost. When I’ve said “about X pounds” she’s said that’s very expensive.

I’ve been thinking about that a lot since we had those two conversations. I think she’s wrong. But only because of the bigger picture.

The mask conversation was almost irrelevant. She’s told me how much she paid and said delivery was more. I didn’t pay delivery. Hers came from somewhere abroad (I forget) and took ages to come. Mine were here in a few days, from (I think) London. She wasn’t comparing like from like, even before you get to the fact that knowing it’s difficult to make a fair amount of money as a crafter, I was prepared to pay a bit more.

The stocking aid (one specifically for taking them off) was £22.40. Although I just had to look that price up and had told my carer it was “about £20” I thought that was very fair, particularly given that as soon as you put the word “disability” on anything it goes up in price and that the market for stocking aids must be a niche market within that already niche market.

But.

I’ve spent the two and half years since I started wearing compression hating having to have the carers twice a day. Hating the time I lost and the tie of always having to be home/free/awake at those set times and feeling like who I was, Emma, was getting lost in the wash of the woman with lymphoedema who needed this doing to her. It had a real negative thing for me and was part of the reason why my mental health was in such a downward spiral when I started needing compression.

Everyone who knows me and my history and my level of mobility (and the amount of problems I had when I used to wear normal socks let along compression stockings) was sure that there wouldn’t be a way of my getting them off myself. The lymphoedema nurse thought getting the stocking over my heel was going to be an issue.

Eventually coronavirus hit and the risk of my injuring myself trying to get my own stockings off was less than the risk of having the carers here twice a day so much. Very long story short: I got one in the hope I could go to once a day calls, it worked. It took some trial and error to find the easiest way to do it and it takes ages (but I’m getting quicker!) and in two and a half months I’ve probably had support to take my stockings off less than ten times.

Starting next week I am actually going to have a carer three evenings a week because applying my cream myself is still tricky and I think it needs doing better more often than the once a week or so Dad was doing it. But I don’t currently anticipate going back to having a carer here twice a day, everyday.

Should life ever go back to normal there will be no more leaving things early to be home for the carers or planning how I will manage to get my compression off if I go here. Or not going to things because I can’t work round an evening care call. Without being able to go out I’m already eating dinner when I want, sitting outside losing track of time for hours of an evening. Once the morning carer goes, my day is completely my own. I’m thrilled with that.

My carer has looked at it and seen a simple looking thing I can use to take my stockings off. But she’s missing what my being able to take my own stockings off means to me. And £22.40 strikes me as amazing value for money for something that’s changed my life.

We Are Disabled #blogtober

I love twitter. I don’t do as much with it as I used to as my boundaries have changed (as they have with a lot of online stuff – I am missing the times when the internet community was smaller and people knew you but they only knew an online, anonymous you). But I still love it.

One thing I enjoy about twitter is RoCur – rotation curation – accounts. Those are the ones where a different person tweets every week or even everyday. There are different ones for people from certain places, who work in particular jobs or who have certain interests. They give a snapshot of people’s lives and experiences.

I’ve done People of UK three times and the now defunct Oxford Is Yours once. The @NHS rocur account is another I find really interesting to read. I’ve long thought that there should be a disability RoCur so I was pleased to discover We Are Disabled a few months ago.

I got access to the account this morning and will be hosting it until next Monday evening. I see it as a useful tool and a potentially fun thing – I’m enjoying it so far. I don’t see it as an awareness raising opportunity in the traditional sense but it’s possibly helpful to help others show a disabled reality.

And luckily or unluckily (depending on which part and how you see it) yesterday’s trip to London gave me both good and bad disability things to tweet about when I get a spare minute.

The Things I Can’t Do

Someone declared a few months ago that there “must be lots of things I want to do but can’t.” They mentioned someone they knew was ill (I believe – had been hospitalised anyway) and was finding they couldn’t do stuff. I think they may have been venting frustrations. I said no, I didn’t know how that felt because I can do everything I want to do.

From her reaction, I don’t think she believed me and I ended up back tracking and justifying that statement by pointing out that I’m lifelong disabled so I’ve never known any different (I am annoyed with myself that I allowed her to make me feel I had to do that).

She is right that there are things I’d like to do but can’t

  • I can’t do everything I want to do in London this week as they are too far apart to fit in.
  • I can’t see most of my friends as often as I want as they are too far away
  • I can’t go to the gym more than once a week as the best session for me is only on once a week
  • I can’t write all the stories and other things I want to as I don’t have the time.
  • I can’t stop buying books and yarn despite all the unread and used items in my flat.

But she’s also wrong. Because everyone, disabled or otherwise, has things they want to do but can’t. And the things I currently can’t do are due to life and circumstances. Not due to having Cerebral Palsy or being a wheelchair user.

Blogging and Blogtober

I have been thinking a lot about blogging lately (and about writing in general). And I came to many conclusions, the main one of which was I don’t want to stop blogging. So I decided that I would take part in #Blogtober this month (blogging everyday) because if that doesn’t help me find my love for blogging again, nothing will.

(One of these days I’m going to look back and see how many times I’ve shared similar thoughts on here in the last three or so years. Probably an embarrassing number of times).

My bio on Facebook describes me as “writer, blogger, reader, adviser, crafter, reviewer, wheelchair user, advocate, crip.” I haven’t really updated it for a few years (only to remove “sailor” when I stopped sailing last year). One or two of those words no longer really describe me. But blogger still does.

My twitter bio is “blowing people’s minds just by existing since 1981.” And that’s definitely still true.

It’s annoying that it’s 2018 and the simple act of living a life in a wheelchair is seen by many as shocking and amazing but it is. I think probably that’s part of what’s good about blogging for me – it gives me a place to show my reality of living my life and try to change attitudes (within my boundaries) but it also gives me a space to vent when I need it.

But this month (and this blog) isn’t all going to be about disability, I have other things (books, crafts etc) I want to blog about too.

Unlimited Festival 2018

On Wednesday, a friend and I went to London to visit Unlimited Festival at The Southbank Centre. Unlimited is a festival of disability arts.

We saw a variety of different art exhibits. One was a messy house, meant to represent how the artist’s disability means she struggles with cleaning. The different fabrics and wallpapers had bright patterns, inspired by the dirt in her own home.

Another was pictures by two people with learning disabilities who had spent a year exploring London and based the pictures on that. One, Ian Wornast, had drawn map like layouts in what appeared to be felt tip. I think they were my favourite.

The big thing we went for was The British Paraorchestra’s The Nature of Why show. This was a music/dance show. I will try to do it justice but a big part of it’s power is in how it made you feel. I am tired today and struggling to put it into words but I suspect I would even if I was more awake.

We knew when we booked that there would be limited seating available. It was actually a promenade show which I’m glad we didn’t know in advance as I think we might not have gone if we had. Promenade is when the audience are on the stage and turn/move/walk around as they choose while the show goes on around them.

The Nature of Why was a really immersive show. The skill shown by the dancers and musicians made for a spectacle more that worth the trip. It was on twice yesterday and if we could have got home after the evening one we’d have stayed.

But the creativity in taking the disabilities and support needs of performers and including those was what I loved. A blind musician was guided by someone dancing at floor level using her hands on his feet to tell him when/where to move or stop. The wheelchair user playing the French Horn was wheeling himself when not playing. One of the times he was playing a dancer crouched back to back with him, supported him in a tipped back position and turned him slowly as she moved.

That inclusion applied to the audience as well. There was a child watching it with what appeared to be a learning disability. He was loving it but couldn’t stay still. That was captured by the cast and included. When they were doing a stamping move and took his hand and encouraged him to stamp too. Later in the show all the performers were dancing in a line. I was in the area they wanted to dance so they broke the line so some dance in front of me and others behind. I didn’t know what to do with myself!

At the end, one of the dancers came and took my hand, danced with me. I thanked her once the show ended and she said “no, thank you for dancing with me.” The fact audience and performers were so mixed meant we could talk together afterwards which was nice.

I could say so much more about The Nature of Why. I think I’ll be talking about it for a long time. It was mind blowing, amazing and just lovely.

A Little Bit of Life

(I am surprised that with nearly 2000 entries on this site I’ve never used the title A Little Bit of Life before)

Two bits of not so brilliant but they could be much worse news are in my life at the moment.  I don’t think dominating my life is the right term but they are definitely big factors in everything right now.  And not easy. Life is never easy.

I will start with the slightly easier one first – my powerchair is broken.

The easiest way to explain it is to say it has a broken castor.  It’s more complicated than that because of the spider-trac but basically it’s not right and it’s manifesting in one of the castors (I’m not sure but I think they won’t need to replace the wheel to fix it).

It’s been niggling at me for at least a few weeks that it wasn’t right but when Mum looked she couldn’t see anything wrong with it and I wasn’t sure so I left it. But eventually I figured, it’s under warranty, get them out. And unfortunately it is broken. (the scary thing here is that I probably wouldn’t have called them out if I’d have had to pay a call out fee). I’ve been waiting 10 or so days for the part to come in which will hopefully be at some point next week. I’m told it’s fixable and it’s covered by the warranty. I’m also told the wheel is definitely not going to fall off and I can keep using it in the meantime (although I’ve chosen not to go to Reading today like I wanted to just in case). So it’s positive bad news. It does need to go into the workshop when they have the part though.

The second part of the news is that I went to the Drs last week to discuss my mental health and am now on Citalopram for depression and anxiety.  I was last on antidepressants very briefly two years ago at which point I came off of them much sooner than I should have. I’ve decided to commit to at least a year of meds this time.

I said to her that a lot of the time previously it’s felt like depression was the bigger issue but as much as I am depressed now my anxiety feels much more prevalent. That’s why she gave me Citalopram as opposed to the Sertraline I’ve had most recently.

Citalopram was actually the first ever antidepressant I took in 2003 when I was diagnosed originally but I had to come off of it after a couple of weeks due to nausea. It had been getting better but my then GP said to try a new drug (I went onto Lofepramine for 18 months and then had several years on and off of Fluoxetine before trying Sertraline). My current GP has put me on a 50% dose for a few weeks and I’m only just a week in but I’ve had one terrible day for nausea and a day or two of feeling off. So it’s more positive than I hoped.

I won’t go into the ins and outs of how everything has been and all that.  What I will say is that it suddenly feels so much harder to talk about mental health than it has done in previous years.  A huge part of that is that a couple of people I’ve talked to about it have been really negative about it and my choosing to go on meds.  And in one case gave me some unasked for advice that was potentially very dangerous (thankfully as this is not my first go with this I knew they were full of shit).  I might blog more about that at some point soon ish as I’m hoping to get back to writing regularly but I think that’s all I’ve got to say for today.

What Have You Done Today To Make You Feel Proud?

(title is a lyric from the Heather Small song Proud)

A few days ago an acquaintance heard I’d done something and was really impressed. She was trying to encourage me to write about it for Tenants Times because doing so could inspire other people and it was a big deal what I’ve done.

I was frustrated by that conversation because I couldn’t see what the big deal was and I don’t understand why it’s news and people who don’t know me would be interested in it. Plus all I could see was it turning into some form of inspiration porn even if I was the one to write it.

I think she was frustrated by my not viewing it as a big deal and also I don’t think she understood my comments about inspiration porn (I feel I did a poor job of explaining it, in part because of previous conversations).  She commented that I’m worried to feel proud of myself. Which I denied to her and couldn’t be further from the truth.

But here’s the thing: what impressed her (and the two other people in the room) was in part what I did but mostly the fact I did it by myself. And in a wheelchair.

And here’s the other thing (which I didn’t think to share with her). In my circle of friends I can name at least three people who would have decided they wanted to do what I did and gone off and done it by themselves. Plus, it’s something I first did by myself in 2006

A friend has pointed out to me since that society considers this an unusual thing to do alone so maybe that’s part of the reason for her comments. Perhaps it’s something my acquaintance wouldn’t feel able to do.

I don’t view this as a massive inspirational achievement. And she’s right when she says I’m not proud of myself for having done it. But that’s because it’s normal for me. The fact I did it “in a wheelchair” shouldn’t come into it.

As a wheelchair user it’s strange that sometimes I can be doing the simplest thing and I get praise and encouragement when I really don’t need it. And then I get told I need to stop putting barriers on myself when I say access means I can’t do something.  Because the very fact I use a chair makes my existence a big deal.

It’s ableist, in a way.  Because if an able-bodied person had said “hey I did this” it might have turned into a conversation about how she wouldn’t have done it. But it would never have turned into a conversation about writing an article, being inspirational and needing to be proud of myself.

Able bodied people are allowed to be normal and mundane you see. Wheelchair users are either sad people who suffer and need to be pitied or objects of inspiration and awe who are overcoming barriers and our disabilities. We can’t be normal, it’s the law.

It’s pretty fucking othering to be criticised for not being proud of something that isn’t an achievement, I’ve done loads of times and didn’t even have to put a lot of thought into. That reminder that you’re different, you’re not normal and you never can be hits like a ton of bricks. Hearing them talk about how I should write about it to inspire people frustrated me because I’m more than the girl in the chair. Being criticised for not being proud left me feeling pretty shit about myself to be honest.

 

 

 

Miles on my tyres

I’ve officially had the Jive for three months now.  

And I’m pleased ro report that I didn’t come anywhere near falling out of my chair in month three so that’s an improvement on the previous two months.  I did freak people out on two occasions but I think that’s always going to be the case with this chair because of how the spider-trac suspension works – when i go up a steep ramp it shoves me really down onto my back castors and the front castors come slightly off the ground.

I did 93 miles in my chair this month and set a new record for the most miles done in a day/between charges – 9.2 miles.  I was away for a few days and won’t be commenting on the rumour that I deliberately did an extra loop around the shopping centre by where I was staying to get that extra mile.  It did surprise me how much distance I covered just getting ready for the day and going for breakfast in the hotel each morning.

I was sure that if there was going to be a month when I did over 100 miles in the chair it would be this one with the number of times I went to London.  But I’m now beginning to suspect that is a goal I won’t meet.