Opening Lines

2016 has been an interesting year. Not hugely positive in many ways but there were still fun things and moments to remember when I look back.  One thing I’ve done in the last few years and enjoyed is go back through my blog entries and find the first one for each month. This is known online as the Opening Lines meme. I find it interesting to see how much I’d forgotten and refresh my memory.  Compiling this always takes longer than it should because I tend to get lost reading lots of entries as I look to find the first one of each month.

Here are my 2016 Opening Lines:

January – 2016 isn’t getting the start I wanted it to have but luckily it’s also not getting the start I thought yesterday it was going to have. (Not Exactly The Start I Wanted). – About being sick at the start of the year.

February – I’m linking this post up with both this week’s It’s Monday, What Are You Reading? over on The Book Date and with the January check in for the Read Your Own Damn Books Challenge over on Estella’s Revenge. (Reading Down My TBR Pile (2016 Edition) – Week Four) – A recap of my reading.

March – I’ve been so quiet on here and on facebook (and probably quieter than usual but not totally quiet on twitter) that a friend actually text me this morning to check I was OK because she was worried. (Quiet) – Some plans I had and some mental health stuff.

April – For the A to Z blogging challenge this year I’ve decided to have a bookish theme and share some of my favourite books and authors – ones that I’ve loved, those I revisit time and time again.  (An A to Z of Books and Authors: Jane Austen). – This year I only managed to write two entries for the A to Z challenge. This was the first, about my love for classic books and Jane Austen specifically

May – Today is Blogging Against Disablism Day (BADD) (It’s Not Disablism (But Really It Is)) – Some recent experiences I’d had and how I didn’t really see them as a big deal but knew I should (because people around me did)

June – The last weekend in May was the Challenger Class Association Oxford Regatta (Challenger Oxford Regatta 2016) – I very nearly didn’t take part in the regatta but then changed my mind and loved it.

July – A few weeks ago on twitter I started hearing about a concept called Read Without Prejudice (Can You Read Without Prejudice?) – this was a really interesting concept

August – Over the weekend I read A Year of Doing Good by Judith O’Reilly. (Taking One for the Team) – A book that annoyed me but also made me think

September – At CAB today we did some training on how to support clients who are appealing disability benefit decisions.  (An Unexpected Revelation) – Something I hadn’t considered before.

October – I’ve had my new powerchair for two months now. (Miles on My Tyres) – about my new powerchair and the distances I’d been covering.  I’m ending 2016 having had the chair just shy of 5 months and having done 415 miles.

November – I’ve officially had the Jive for three months now.   (Miles on my tyres) – another monthly update on how many miles I’d done in my new powerchair.

December – I used to be scared of dogs. (Milo). -An entry about me and Milo.

Merry Christmas!

I’ve been very quiet on my blog lately and haven’t posted anything Christmassy at all.  I’ve not felt very Christmassy in fact.

I’m not as excited and bouncy about Christmas as I have been before.  Which is fine.  It just pretty much just sums up this year.  It’s been a difficult and long one in many ways that I won’t get into now.  There have been good things and I have good memories.  But as I wrote in an email to an acquaintance last week if I had to sum this year up it would be that it’s been one of broken wheelchairs and deaths.  In previous years my blogging around this time has been about exciting plans I’ve got for the new year and things I want to do in it and how I’m looking forward to that.  At the moment when I think of 2017 I’m mostly thinking that at least it won’t be 2016 any more – I’d like to think next year has to be better than this but I don’t want to say that too loudly.

That’s not to say I’m not enjoying this Christmas season – I’ve read a couple of Christmassy books (not as many as I wanted), been listening to a lot of Christmas music and enjoyed a yearly watch of Arthur Christmas.

I’m looking forward to time spent with family, good food and some traditions. I’m looking forward to some down time to rest and crochet (I’m making myself a blanket and trying to get it done by the end of the year) in front of rubbish TV and do not very much at all.  I’m also looking forward to seeing my nephew enjoy Christmas (although he is still too young to properly get it).And games of Mancala which we only ever seem to play at Christmas.

I’d like to thank everyone who reads my blog for their support this year and wish you all a Merry Christmas!

Milo

I used to be scared of dogs.  Full blown petrified.  I couldn’t even be in the same park as one without being frightened.  And a lot of people who had dogs would say their dog was harmless and wouldn’t scare me but it would. Or they’d tell me parents to give me a day with them and their dog and I’d come back cured. I think the problem is that there was never any thing that my parents or I could put our fingers on as the reason why I was scared (I later developed something of a fear of/hatred for cats and I can tell you exactly why that happened).  There are a lot of memories and stories of things that relate to my phobia of dogs – it was a big thing.

And then I went to uni. On the way home that first Christmas my Dad mentioned they were getting a dog. I freaked out. I didn’t believe him at first. When I realised he was serious I panicked and cried.

I went back to uni before they got the dog and when they did I didn’t want to hear about it.  My family came to visit a few weeks after they got him and brought photos. I was not going to look at those photos. My friend I lived with and my carer were really keen to see the pics but not me.  I did eventually be convinced to look at them but I didn’t want to – I was scared of dogs and I didn’t see the need or the attraction of a dog.

Then we got to Easter and time to go home again. I was so panicked in halls as my Dad packed the car with my stuff that I was basically hysterical and I physically threw up.  They struggled to get me in the house when we arrived but eventually I went in and I met Milo.

I was uncomfortable and a bit scared after that but I was coping. I remember the next day we went to visit my Nanny for lunch and I was really relieved because we’d be gone for a few hours and he wouldn’t come. I could have a break from dealing with him. But then I remembered that she’d moved since I was last home from uni and instead of being about a 25 minute drive away she was now a 5 minute drive away so we wouldn’t be gone as long. And it turned out he came too.

Within a few days I was comfortable with him and happy to stroke him, throw his ball etc. I remember my Mum commenting how quickly that happened, more so than she’d expected I think.  And that grew to being comfortable to be around other dogs too.

It grew to many years of fun and laughter and even frustration and annoyance when he was being a pain.

I remember being out walking him one uni holiday. I was in my manual being pushed by my Dad and holding Milo’s lead. And the manual broke. I’m not really sure how he got us all home.

I remember just how much fun he thought an empty plastic bottle was. And how scary a sneeze was.

When I stopped wearing socks at all I used all of the ones I had to make sock toys for him. He absolutely loved them. The last couple of years I would go to the pound shop at Christmas and buy socks especially to be able to make him one.

I cried the day I heard my family were getting Milo. Because I was scared. I cried harder the day I met him. Because I was more scared.

And on Monday night I cried when my Mum rang to tell me that at the ripe old age of 16 Milo had been put to sleep.

(I’m trying not to cry writing this)

I’m still a bit wary around dogs I don’t know if they’re running loose and I think I always will be (although admittedly I had a negative experience with someone at sailing’s dog earlier this year which was actually made more negative by the way the owner handled it so that may be influencing that).

I would have sworn blind, had you asked me, that I didn’t need to do anything about my dog phobia. It wasn’t having that much of an impact on my life (I thought) and was much more of a problem for others than me (because they thought it was a big deal). But then circumstance meant I had to.  And I’m really glad that I did.

Milo

A photo posted by Emma (@funkyfairy22) on

“She’ll run you over”

There are a lot of allegedly jokey comments that people make about or to me as a wheelchair user.  Usually well meaning and perhaps an attempt at being funny. They aren’t funny.  Most of them never were but one or two may have been if not for the fact that I hear them all the time. 

I’m talking about the “women drivers” comments.

The people who say “do you have a license for that thing?”

Those who randomly see me and go “no speeding!”

And many others.

I often roll my eyes at that sort of thing and let it go because it’s usually strangers and theres no point getting annoyed about that.  When one of the assisted travel guys at London Waterloo put the ramp down and after I drove down it went “who says women can’t drive?!” I asked him if there was meant to be a compliment buried in there somewhere. And he didn’t really answer.  But he was there to get me off the train the next time I went and just said hello.

The comment that really gets me though is made when parents on the street are trying to get their child out of my way. I heard it earlier today and yes the child was taking up space but it wasn’t a huge issue.

It’s “she’ll run you over if you don’t move.”

A lot of kids don’t know what a wheelchair is and don’t know what to make of them. I don’t like the nosy inappropriate questions I get from adults and older kids but if I have the time I was always answer young ones because it’s genuine curiousity and normalising disability (and in my case specifically wheelchairs) is important.
Even if you tell me to or give me permission to I’m not going to run your child over (and I have heard “I’ll let her…” and “I’ll tell her to…”before). Comments like that make my disability and my chair something to be wary of. I’m sick of being made out to be the big bad wolf to be scared of. 

I am not a threat to get your child to do what you want. Stop using me as one. I’m a person the same as everyone else – I just spend my life on wheels.

Random Bullet Points of Life

A blog for the small things worth recording but maybe not worth an entry of their own. And this edition has the bonus of being written in the time it takes for the oven to heat up for me (oh so late) dinner.

  • It took a visit from an NHS wheelchair tech (not my regular one), an adjustment by my Dad and a visit from my regular NHS wheelchair tech to get the manual working again. It was fixed after the first visit but the fill in tech didn’t reattach it in the correct place so it wasn’t useable. Dad would have left it but I needed to go somewhere I could only go in the manual and his adjustment got me moving again temporarily.
  • I’ve ordered an Action4 manual wheelchair to have as a spare. In white. I’m very excited about that colour choice but Mum was very bemused which was hilarious.
  • Related: holy fuck wheelchair parts are expensive. When I was sorting out the action4 order I said I didn’t want to get my seating adjustments/extras as it’s just a spare. They suggested I could get a set of brackets fitted and then use the backrest from my old powerchair on it. This was a great idea until I heard how much the brackets were.
  • After not really reading much for the last few weeks (or this year really) I read over half a book in a sitting this afternoon.
  • I have experienced so much ableism over the last few days it’s ridiculous. It’s almost like I had one experience and it bred another and another sort of like tribbles? I’ve been trying and failing to write about that.
  • I am apparently not doing NaNo this year but I really want to be.
  • There has been so much death and sad news this year. Some closer than others, some unexpected and some not. It’s getting a bit much.
  • My brother and I went to see Fantastic Beasts and Where to Find Them on Friday. It was very good and I highly recommend it.

You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

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.

Matilda!

Earlier this week I went to London, had a wander round by myself (getting slightly lost) and then met up with friends (including a very excited almost 7 year old) and we went to a matinee of Matilda the Musical.

It was fab.  I did expect it to be funnier than it was – I had high expectations for that because Tim Minchin who is a musical comedian (and one of my favourites) wrote the lyrics. But when I thought about it afterwards he’s known for clever humour. And this was certainly fully of clever lyrics with humour woven in.  I would much rather have that than it be full of cheap humour.

The staging and the effects were brilliant and the songs catchy and fab. I’ve downloaded the soundtrack and been listening to it a lot since I got home.  It’s a couple of years since I’ve seen a musical and wanted the soundtrack (although to be fair the last musical I saw was Mamma Mia and I already had the film soundtrack or I’d have got that) The cast, especially the kids were spot on.  It just worked really well which given that three of the last nine or so musicals and the last play I’ve seen have been disappointing was brilliant.

I would highly recommend going to see the show and it’s definitely going on my list of shows to see again if it tours.

Readathon October 2016

Morning, morning

Feels like forever since I’ve updated my blog. I keep starting posts but then changing my mind or not having time to finish it. I have two versions of the same post in drafts, neither likely to ever see the light of day.  Mostly it’s been a stressful few weeks and I’ve been trying not to whinge too much on my blog as at least one of the people who have caused that stress sometimes reads my blog.  I have been whinging a lot on the phone to certain friends and also on twitter though.

I’ve also started a new 101 in 1001 list (I think I may have already mentioned that but I’ve decided not to post the full list online).  This time round I still have the big major wow goals but I also seem to have included substantially more lower key or even self-care goals.  One of the goals I’ve got on there is to dedicate one day a month to reading for a year.  As today is Dewey’s 24 Hour Readathon (it starts at 1 my time I think) I thought today would be a good day to start that goal.

I’m still not reading anywhere near as much as I used to or I’d like to be but since the beginning of the month I have listened to two audiobooks so that’s good.  I really enjoyed them too.

I will be back later to update throughout the day with my readathon progress but for now why not go over to the readathon site and read the warm up post I wrote – Tips for When You’re Down and Out.

Update 14:18 The readathon is just over an hour old and I’ve listened to an hour of my audiobook – The Last Summer by Judith Kinghorn.  I’m enjoying it so far, it’s about a girl from a rich family who falls in love with the son of one of the servants and is set just before the start of World War One. The premise seemed a little cliche but actually it’s anything but and I’m glad I chose it.  It sort of puts me in mind of Downton Abbey but has much less to do with the actual servants.

Time for a break for lunch now.

Update 16:01 Three hours into the readathon and I’ve listened to another 35 minutes of my audiobook. I’m still enjoying it and I’m pleased because I’ve nearly hit my audiobook goal for the day (I wanted to try and listen for at least two hours) but I think I’ll leave it for a while now.  A quick break to sort some washing out and then if you need me I’ll be curled up under a blanket with a glass of cranberry juice and my kindle.

Update 19:54 After I wrote my last update I took my kindle and went to bed to read. But I only managed to read about 5% of Star Trek Prey: Hell’s Heart by John Jackson Miller before my tiredness over took me and I drifted off for an hour or so. Shouldn’t have gone to bed! I listened to a bit more audiobook after I got back up and I’m up to 1 hour 50 minutes of listening.  I was getting pretty disheartened at that point about my progress as I had little motivation for actual reading and beginnning to think I’d make this an audiobook only readathon but decided to put the dinner on and pick up Matilda by Roald Dahl (preparation for going to see the musical this week).  I ended up reading that cover to cover in a stupidly quick timeand loving it.  I was a bit surprised by how much I’d forgotten and rereading it I can see why one of my friends really doesn’t like Roald Dahl’s books.

I’m taking a break to eat and I’m not sure what’s next. I might reread The BFG, I might read more of the Star Trek book I started or I might pick something else up.  I’ll definitely listen to at least a little more of The Last Summer so I can hit that 2 hour goal.

Update 23:05 I hit my 2 hour goal for listening to an audiobook – in fact I’ve now listened to 2 hours 30 minutes. That’s probably it for audiobooks. I may put it on when I’m in bed but it depends how soon I go to bed and how tired I am.  And then I read all of Comfort and Joy by Cathy Bramley which is a Christmas e-novella in her Plumberry School of Comfort Food universe. I liked going back to Plumberry and I hope she writes more with those characters.  According to amazon that has 120 pages.  I put some Christmas music on in the background while reading that and had myself an Archers too. It was a lovely way to spend an hour or so.

Update Sunday 10:58 am Usually when I wake up before 9 on a weekend I try to go back to sleep (especially when I didn’t go to bed until gone 1) but I woke at 8:20 and stayed awake. Since then I’ve listened to 38 minutes of The Last Summer audiobook(or another 3 chapters) and read another 16% of Prey. I’ve read 21% of that now.  It’s worth noting that I listen to my audiobooks at either 1.25 or 1.5 speed so I’ve listened to more of the story that the hours I’ve listened for)

I know there are two hours left of the readathon but I think I’m done because I want to go out.  Later I want to do some crafts so I’ll probably put the audiobook on in the background and I anticipate finishing Prey.

Stats:

3 hours 08 minutes of audiobook

2 books 350 pages

1 partial book – 21%

So Take Me As I Am

(title is a lyric from the Meredith Brooks song Bitch)

A couple of weeks ago I was asked how I’d enjoyed a show I went to by a member of staff there who I know. I had enjoyed it but there had been one thing that had happened – which was tangentally access related – that had really irritated me.  It was totally inconsequential and unlikely to be repeated but it had had an impact on my enjoyment and they asked so… I said “If I could just make one slightly bitchy point….”

More recently than that I discovered that the actions of someone else have left me with a huge mess to sort out. I feel more than a little screwed over and beyond frustrated as I did everything I was supposed to do but the person who was supposed to do the next part didn’t and because they didn’t do it at the correct time they now can’t.  And I’m the one who will lose out if it’s not done so I need to do it.  Their failure makes me look bad.

I was ranting to a good friend about that and I said “I know that this is really bitchy but I hope X happens because of this”

She stopped me and said “that’s not bitchy at all.” and made some other comments about thinking I’m acting like a bitch when I’m not.

I say stuff like that all the time when I complain or raise issues.  Phrases like “I don’t mean to be a bitch but…” cross my lips all too frequently.  And really they shouldn’t.

Complaining or raising issues in a constructive or fair way is nothing to be ashamed of. It’s only right and I’m sure that if able-bodied people had to deal with half the crap I have to they wouldn’t be half as calm and dismissive of it as I can be.  Recently a few things have happened which have made me realise just how abnormal my version or normal really is.

A third issue – one of disabled toilet accessibility – reared it’s ugly head. I really thought all the able-bodied people around me were blowing it out of proportion.  It was just one of those things. It happens and it’s irritating as hell and it really shouldn’t but what can you do?!  There were a couple of ways I could work around it and I’d almost never go there again anyway as I was unlikely to have a reason to.  I knew I should complain about the issue and have something done but it happens a lot of places and I was in the middle of dealing with the second incident I mentioned above and just didn’t have it in me to do anything about it.

When one of the people running the event (not the venue) asked me about it I did tell her about it. I told her it both was and wasn’t an issue and had to stop myself talking it down. I don’t think I did a good job of that. And one of the things I told her about was how I worry that people will think I’m alway moaning or never happy.  That I’ve heard those phrases along with “ungrateful” and “argumentative” many times and “you have to understand we’re doing our best” and “we don’t really get many wheelchair users” are among the stock excuses.  It grinds you down.  I wonder, sometimes, if part of the way I so often almost apologise for my complaints or put myself down by phrase it as “being a bitch but” is because subconsciously I think that’s the only way I’ll be taken seriously.  I think the person I was talking to go it and she reassured me they don’t think that about me.

Only.

Later in the session another member of staff wanted to ask me about it. Fine. They wanted to know – was there actually a problem or was the problem that I have a new wheelchair and I’m not used to it yet?  I took her and showed her how it wasn’t big enough for my chair and she got it. But talk about proving my point!

I wish that was my only example of that sort of thing from recently.

It’s not – last Sunday a well known pizza chain refused to serve me because they had a booking for a short time later that they’d chosen to book all of their (small) downstairs for and they had no lift. They had no desire to come up with a solution (I could see from how they had it laid out that a small rejig could have fitted a table for me and my friend in too) and didn’t even apologise. It was clear that they considered I had the problem not them.  And a request I made early this week to another organisation for an explanation why something had happened resulted in my receiving an email Friday that didn’t explain it and basically suggested I should put up and shut up. Again, I was the one with the problem not them.

My friend above who made the comments about thinking I’m being a bitch when I’m not is right, I should stop doing that.  But it’s a bloody hard habit to break when society is desperate not to take me as I am but to blame me for it instead.