Spotted at the Sailing Club

There are, perhaps, five Tuesday evening sails left this year.  I personally suspect only four but five is most likely and the most it could be is six.  Although the person who runs sailability always says when asked “we try to keep sailing until the clocks change” I think I’ve only ever sailed in October once.  In a way I look forward to the off season and what that will bring – I have a couple of very exciting things planned for October and later in the year.  But most of me isn’t ready for the hot day, sunshine and sailing to come to an end.  How can it be practically September already?!

It’s been a good year for sailing – very few have been cancelled due to the weather, although there have been one or two where sailing has run but I’ve chosen not to go on the water once I’ve seen the conditions.  But as much as it has been a good year I did go through a real spell of feeling like I lost my confidence in sailing and had to fight to get it back.  That was more of a trust/anxiety thing than because of any particular bad experience and as much as I could go into the exact in and outs they aren’t really relevant any longer and don’t matter.  In the last weeks conditions have been gentler and the sun has been shining and slowly – very slowly – it’s been coming back and I’ve been finding my enjoyment of the water once again.

A big part of it was a general loss of confidence (and higher levels of anxiety) that I seemed to experience when my powerchair broke and everything shifted in my life unexpectedly as a result of that.  Sailing confidence is back but I’m still working on my confidence in the new powerchair.  It will come, it’s just taking longer than I’d like.  I do think that I’ll always struggle somewhat with anxiety and confidence though and especially with sailing because by it’s very nature it forces me to do something that can be a huge trigger for me (I tend to find it very difficult to feel safe if I’m not in my wheelchair).

And tonight I got to watch another gorgeous Farmoor sunset.  In the past couple of months I’ve mostly been getting lifts from my Dad so I’ve not seen many as we don’t stay for a drink after meaning we’ve been away before the sunsets.  But tonight we did – and Dad fished my phone out of the car for me to take some photos.

Sunset over Farmoor Reservoir

Boats in silhoutte as the sunsets

The First 50 Miles

Last Wednesday I did my 50th mile in my new powerchair.  I was in Bournemouth for the day.  I’ve been meaning to write this entry ever since but I’m finally doing it because if I don’t I’ll have to write it tomorrow and title it “the first 60 miles”

In that time I’ve

  • Been for coffee with two different groups of friends
  • Wandered around town a lot just trying it out and seeing what it can do.
  • Done errands and supermarket trips and other boring things.
  • Realised that I will not be able to get my hair cut in this chair
  • Got on a train for the first time in nearly three months
  • Made three separate train journeys one of which involved changing.
  • Went to Reading for shopping and treated myself to new perfume
  • Took my nephew on a wheelchair accessible roundabout at the park
  • Been to CAB
  • Made a second trip to Reading to meet a friend for lunch and cocktails (and accidentally bought two books whilst there)
  • Had a day out in Bournemouth with another friend – we walked along the sea front a bit, had lunch on the pier, visited the Oceanarium and walked through the gardens.
  • Been on a bus
  • Officially made it longer than I did with the Salsa before damaging it (two weeks to the day after I got the Salsa I did a couple of hundred quids worth of damage. The Jive is undamaged)

I’m not planning on going to Bournemouth again (I would but I feel like we’ve done it and I have other places I’d like to go), I’m unlikely to go on a roundabout again and I won’t be going on another bus.  I desperately hope not to damage it. But the rest is on the list for things to do again.

train station platform

two cocktails (margaritas) one empty, one full

the sea at Bournemouth

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Penguins at Bournemouth Oceanarium

Me in my powerchair on Bournemouth pier with the sea in the background. I'm wearing pink and purple

 

r-net powerchair control showing 50 miles travelled

Jive Talkin’ (part two)

Part two of my review of my new Quickie Jive M Hybrid. This is more my thoughts and experiences now I’ve had it a week. Part one is here.

Me in my new chair - side view so the chair is visible moreI have got on very well with it although I have had a few problems but the tech came back out on Wednesday to troubleshoot (a return visit for troubleshooting was always planned but had to take place much sooner than we had intended due to two full blown problems rather than the niggles we expected) and these appear fully resolved.

I got the version with swing away footplates as opposed to a footboard (I like the look of a footboard more than swing aways but just can’t keep my feet on one) and found on one side it was catching on the castor arms when I put them out. Luckily I’m short and when my footplates had been set at the shortest level  it did work for me but it was thought that I might find after a while shorter would be better. The tech did something so I could have them slightly higher (I think he cut part of the stem off) and that sorted that.

The width of the chair was the other very major and completely unexpected issue. When I trialed the Jive we measured it and the Salsa and it was 2cm (or slightly less) wider which Mum and I both felt was fine.  But the version I trialled didn’t have lights and the one I bought does.  They were mounted on the frame in such a way that they became the widest part of the chair and added a couple of inches to each side.

When I went to CAB on Monday I got in the building but couldn’t get in the office.  So I once again missed both my sessions this week.  Somewhere else I went this week I could fit through the door but I had no idea where the lights were in relation to me so I smacked them on one side and one popped off it’s fixing. I swore a lot but thankfully the person I was meeting was able to push it back in place and it didn’t break. Judging by the picture on the website the stuck out position of the lights I had a problem with appears to be standard.

They’ve been moved so they are no longer adding width to the chair and I don’t anticipate any problems. But it wasn’t possible to move the back ones and have them on proper fixings so they are cable tied into place.

The suspension system on this is really great but it has taken a bit to feel comfortable with it as the way it works makes it feel a bit bouncy when I go over bumps, cambers or pot holes. Basically the castors all operate independently.  I do like it a lot and think it will make things like getting on and off the Tube and going over rough ground easier. I’ve been finding I just need to move with confidence and keep going because if I hesitate, slow down a lot or stop it feels much more difficult and I get stuck (which is a mental thing to do with feeling safe. I know it is but sometimes it doesn’t feel it.).

The best thing is that the suspension system on this is something different to others so it has a special name – SpiderTrac. That just sounds really cool and sci-fi like and is getting lots of love from people I tell.

Oh I realised that the entry I linked to yesterday doesn’t mention the custom colour like I thought it did. Basically standard fabric is black with gray panels and “eye catching” red stitching. I paid for custom so I could have all of it and all the stitching in black.

All in all I’m very pleased with the new chair – I’ve taken it on the trains twice now and managed well.  It’s definitely more powerful than the Salsa and I learned that the hard way when I took a layer of skin off when I first tried to get on a train.  I’m hoping I’ll be able to take it on the trains I couldn’t get the Salsa on from Didcot but I’ve not tried that yet.

I feel like my world is opening up again and I’m getting my life back.

And I got to go for those cocktails I wanted this afternoon

Jive Talkin’ (part one)

I got my new powerchair just over a week ago which means as requested it’s time to give it a review.  This will be a two part blog as it was getting a little long for one entry.  This entry is more about what I’ve got on the chair as opposed to my thoughts on it.

I have a Quickie Jive M Hybrid.

The M means I have the midwheel drive version.  I got my first midwheel drive chair by accident when I bought a barely used second hand one and ever since I’ve insisted on midwheel drive as they have such a smaller turning circle which means they can handle tight turns and small spaces better than R or rear wheel drive versions.

Recently I went somewhere in my manual and everyone else kept commenting that it was a good job I was in my manual chair and not my powerchair (or “big chair” as someone described it) as it would never have got round there.  I was thinking it was a shame I wasn’t in my powerchair as it’s midwheel drive and would have done it much easier!

Hybrid because it uses the same seating system that the Salsa did rather than the more complex seating system for the regular Jive.  On my Salsa I had a Jay 3 backrest with thoracic supports like on my manual chair. The Jive I trialed had a Jay Comfort backrest and I really loved that so I’ve gone for that this time. I don’t have any thoracic supports as I thought the shaping of the comfort would make it unnecessary (plus those things are a couple of hundred quid and can be added in later). I am beginning to suspect I may need to add at least one on (on my left) but it’s not a clear or desperate need so I’d like to give it a few more weeks.

I’ve added a headrest for the first time ever as I discovered you legally have to have one on your chair to travel by car.  I was told that responsibility lies with the driver and they were happy to sell me a chair without one. Mum insisted though (I was leaning towards no as it’s a way to save money) and I have to admit that’s the sensible decision.  It’s taking some getting used to, possibly because it wasn’t in the right position to start with.  I’m still not 100% convinced it’s in the right place but as I said to the tech I don’t know if that’s because I’m not used to having one.  There is the option to take it off and just put it back on as and when I need it but it’s not something I’m keen to do as I’m then bound to take it off and end up travelling in a car unexpectedly.  It is nice when I’m sat tipped back reading.

One of the problems I had with my Salsa was it couldn’t handle steep gradiants.   It had a safety mechanism that killed it off if you tried to take it up anything it deemed too steep. But it often didn’t do things I thought it should. The Jive can handle steeper gradiants and I’ve also had motor and speed upgrades (although I had the same speed upgrade on the Salsa) to help with that.

I wrote about upgrading to an R-net control a few days ago. I’m still loving that and have done roughly 33 miles since I got the chair.

The only other things I’ve had tweaked on the chair I need to mention are my custom colour that I wrote about before it came and upgraded batteries to give me a greater range between charges.  It blows my mind how far I can get between charges (and I haven’t seen any low battery warnings or come anywhere near close to one) but part of me does wonder if part of that is knowing how far I’m getting now I have R-net as opposed to not having any idea when I had VR2.  But it definitely does seem to have a greater range.  I’m looking forward to getting out for a whole day later in the week and seeing what it can do.

 

 

Reading Down My TBR Pile

I’ve read two books this week (well, one was an audiobook but I always count that as reading).

I’m on “staycation” for the next week (although I’ve actually not been to CAB this week due to an issue with the new powerchair) with lots of chill time and fun things that involve train trips planned so I suspect next week’s list will be a lot longer!

The Handmaid’s Tale by Margaret Atwoood.

I first read this years ago when it came up in conversation with one of my CAB colleagues and she lent it to me.  It was both my first Atwood and my first dystopia.  I’ve gone on to read many of both. Recently someone on Twitter posted about reading this and I was inspired to reread it. As I had an audible credit waiting to be used I got the audiobook at that was definitely the right decision, it’s brilliant in audio.

This really stood up to the reread and I think I took different things from it this time.  If you’ve not read this you should. If you’ve never read anything by Atwood you really really should.

High Tide by Veronica Henry

This is a summery fun book.  An enjoyable escapist read and the complete opposite to The Handmaid’s Tale.  I do enjoy a Veronica Henry book now and then but they always leave me hankering to go to the seaside!

 

Wheelchair Woes

So I was really happy.

I finally after nine weeks+ had two working wheelchairs. My manual for the house (and the little bit out the house I use it for) and an absolutely amazing new powerchair that – teething problems aside – blows my mind.

Only my manual had been making a really terrible noise intermittantly along with moments of not feeling right.

I had no idea what was wrong with it and it was so intermittant that I didn’t see the point of calling the NHS maintenance team. I just knew they’d come out and it would be working fine at that point and it would be a waste of time.

Then it started getting worse and I was had a vague idea what it might be. But it wasn’t constant even if it was happening more often.  I decided I was going to have to call them but I’d leave it until some vague after I got my new powerchair time. I couldn’t cope with no wheelchairs of my own.

When the tech brought my powerchair out he moved the manual for me and spotted the problem. He told me what it was and said to get it sorted soon before it worsened as if it did I’d be stranded.

So I called them gave them a vague description and they agreed to come today.

Yesterday it deterioriated to the point I couldn’t use it. I couldn’t really move and I’m not sure how I limped it the 2 or so metres to my powerchair. I was just pleased I was in my bedroom when it went.

Mum came round and we both thought that it was beyond repair. It’s relatively old for a wheelchair (almost 7 years) and we could see the part that had broken was rusty.

I was like “four days?! I only get four days free from wheelchair problems?!” and I cried. I also warned everyone that I was unlikely to be going sailing as no manual = no sail.

Then I called the maintenance team to warn they it wasn’t useable.  I started explaining and he said “Is this Emma Crees?” This isn’t the first time he’s done that when I’ve called, I must be memorable or something!

I told them I didn’t think it was fixable and I was worried about being left with no manual chair. I knew if that happened they’d loan me one but I also know that my chair is a nonstandard size so thought the warning best.

He was absolutely admanent that he knew what was wrong with it, he’d tell the guy coming out, they’d have the part in stock and would make sure it was on the van ready. It was fixable and it was fixable here.

Fast forward to this morning and I’m reading my book by the window. The tech has my chair out by the van working on it. I can see him from the corner of my eye and I’m vaguely wondering what he’s doing because it looks more involved than I expected. This is concerning me.

He came back in and he was like “Your backrest was loose so I tightened it. I fixed your thoracic support and I tightened your footplate too.”  I was really pleased (especially as that thoracic had been broken for aaaaaages as I thought I’d need to go to the hospital to get it fixed as they’ve previously been considered too specialist for the mobile team and who could be doing with that?) but none of those were what I’d called him for so I was still waiting for the other shoe to drop.

He didn’t have the correct part to fix my broken castor (turned out I’d lost a bearing), the one he had was the wrong size. He’d put it on but it wasn’t sitting “right” so he’s ordering the correct size and will be back.

Not only do I have a fixed wheelchair, I have a wheelchair that’s in better condition than it’s been in over a year. And I got to go sailing too.

Here’s hoping that troubleshooting the new powerchair goes just as well tomorrow and I can truly have no wheelchair woes!

Miles on my Tyres

I go pretty much everywhere out of the house in my powerchair (the only place I go with any regularity in the manual is sailing).  And I get there in the powerchair.  I don’t as a general rule use taxis as they are difficult to find around here (accessible ones) and expensive. Plus I live very very close to the train station and close to town so it’s not really necessary.

On a daily basis I would say I probably do two or three miles in the powerchair as it’s probably somewhere in the region of two miles to do a round trip to town.  I say probably, I’ve never known for sure.

With the Salsa I wore the castors out several times (I forget how many but maybe three or four times? It’s hard to say as I wouldn’t usually need all four replacing at once).  And it really irritated me as to me they should be much longer lasting than they were. Those things are expensive, the chair was expensive they should have been much more hard wearing.

It felt like everytime I called the tech out to service the chair it would either be a case of me telling him in advance I had a castor issue or he’d finish the service and find I needed them.

I ranted a lot about that each time it happened.  And each time Mum would listen to me rant and then say she wished there was some way of my knowing how many miles I did with the chair. Because if I knew that I wouldn’t be ranting about them not being fit for purpose. It was an ongoing debate.

When they came out with the new powerchairs for me to trial we were going through the order form and the question of whether I stuck with a standard (VR-2) control system or went with the more advanced (R-net) control system came up. There was some sort of bundle thing where if I paid for R-net I got another one or two of the upgrades I was thinking of included with it (it was motor and batteries I was looking at, I forget which I got included)

Then came the next question: the price of the R-net control was for an LED one.  For £80 ish extra I could have one with an LCD screen instead. What did I want?

I wasn’t feeling the need but I asked what that would give.

Well, it would have the date and time on it. I was a bit lukewarm on that and still not feeling the need.

It would also have a setting where you could see how many miles you’d done.

Yeah, I needed that in my life. Finally I’d be able to put that argument with Mum to bed.  We’ve been taking guesses as to how many miles I do in my chair in a year ever since.

I’ve heard a couple of stories from the tech about people who were like me and convinced they weren’t doing much and the castors and tyres were crap until they upgraded to R-net and realised just how much they were doing.

I’m beginning to suspect that in a year’s time he’ll be out with another customer and telling them about me “yeah, Emma, she said she didn’t do much turns out she does XX miles a year and no wonder she needs bits replacing often.”  Because with just three days of use I’ve put 9 miles on the chair. And I feel like I’ve really not done a lot. I definitely have days when I do a lot more.

I’m really intrigued to see just what the final number of miles on my tyres in a year turns out to be.

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Yes I Can

Channel 4 have a released an advert for the upcoming Paralympic Games.  It’s once again based around the “superhumans” concept they used when broadcasting the Paralympics in 2012.

I like this advert. I like the way it shows lots of disabled people doing both sport and everyday things like brushing their teeth.  I like how it makes disability both an in your face thing you can’t avoid and a normal thing.

I also especially like the fact that signed, subtitled and audio described versions are available making this a really inclusive, accessible advert. That’s fantastic.

At the same time I’ve been reading and hearing a lot of things about how this isn’t a good advert and shows disability in a poor light, makes it seem that we’re all amazing and inspiration and we can do anything.

I agree and I don’t.

I agree that it’s not as simple as wanting to do something and declaring that I can do it.

In my life I’ve done a lot of things people said I never would.  I used to joke that if someone told me I couldn’t do something I’d do it just to prove them wrong.  But there are always going to be things that I can’t do. Some of that’s down strictly to having CP and in other cases it’s a little bit more complicated.

In the advert we see a careers adviser tell a boy in a wheelchair “no, you can’t.” Then we see him playing wheelchair rugby and screaming “Yes I can!”

But here’s the thing: he can play wheelchair rugby in the paras (or at least I assume he’s a paralympian) because the opportunities he needed to learn to play and get good at it were there.

I did adaptive sports growing up – I used the gym, I went horse riding, I swam occasionally and I did archery.  I lived near a brilliant Riding for the Disabled centre and there’s an adaptive leisure centre in Oxford that my parents (and occasionally friend’s parents) took me too at least once a week.  But the one sport I always wanted to do as a teenager was wheelchair basketball. And no where near where I live provided it.

I could – and did – do many sports. I couldn’t do the one I dreamed of. Yes I can only gets you so far when there’s no where to learn, train or play.  I sail now because there are people who give up their time to support disabled sailors, set up the boats, fundraise, man a safety boat, teach people and buddy if support is needed.  And because my Dad and a friend share the driving. Yes I can gets me a long way but if no one could take me it wouldn’t work. As it is most of the sites regattas are held (possibly all apart from Oxford) don’t have hoists so I don’t really take part in those.

Disability is a lot more complex than the advert shows and the yes I can attitude is great but it’s not the be all and end all. It’s just the beginning.

I don’t agree with the idea that the advert is a bad thing because I think for some people (I’m particularly thinking of disabled kids) seeing that number of “people like them” being celebrated on TV could be a really empowering thing.

(I also think the “We’re the superhumans” tag line really should be applied to both paralympian and Olymians because that level of sporting prowess is pretty incredible disability or no. But Channel 4 just have the rights to the paras so…)

 

I Gotta Feeling…

I was laying in bed this morning thinking about how I should really get up and go to the supermarket. In a minute. Really.  Oh, ok, five more minutes and I’d get up.  Probably.

And then my landline rang.

Pretty much the only people who call  my landline are my parents.  But the wheelchair supplier had called me on it on Tuesday.  For one miniscule moment I considered letting it go on the grounds that it was mostly likely a cold caller and if was the wheelchair people they’d probably call my mobile next and that was next to me. But what if?

I swear I’ve never moved from my bed to my chair so quickly (or so badly).  And it was about my wheelchair and they wanted to come out today.

One of the other things I had planned to do today was call and book Harry Potter and the Cursed Child tickets once the next lot went on sale (bookings for wheelchair spaces have to be made on a dedicated access booking line).

So with the prospect of my new wheelchair and Harry Potter tickets I was pretty excited and getting sorted out for the day and what have you singing “I gotta feeling, tonight’s gonna be a good night…”

And I’ve not managed to book Harry Potter tickets but I have had a really good day.  The chair is shiny and wonderful and I think I’ll be very pleased with it long term.

For some reason I was thinking about the day I first got my old powerchair.  That day I was getting ready for them to come and singing “it’s the most wonderful time of the year.”  I was in the middle of a daily writing challenge then and that day I ended up writing a filk/parody version of that song about getting my (then) new wheelchair.

This month I’ve sort of unofficially challenged myself to blog everyday.  I’ve not been blogging very often at all lately and I’ve missed it.  I wasn’t sure what to write today.  I don’t want to write in detail about my new chair until I’ve had it slightly longer.

Then it hit me.

I should write a parody song in hour of getting this new chair.  I could start some sort of new wheelchair tradition and it would be epic.  And the obvious choice was the Blackeyed Peas I Gotta Feeling.

This was a fantastic idea for all of five minutes until I read the original lyrics and realised it would be really tricky to do so.  And decided against it.

Even if the following line wouldn’t need changing as it sums up exactly what everyone who knows me knows I’m bound to do at least once with the new chair

“Go out and smash it (smash it)
Like oh my god (like oh my god)”

I had to laugh.

And then desperately cross my fingers that by some miracle I manage not to ever do that.

Reading Down My TBR Pile

I’ve decided that I’d like to start keeping a weekly record of what I read again (more than on Goodreads I mean).  I’ve missed doing so.   I’m not sure if I’m going to stick with the reading down my TBR pile title or not because lets be honest it’s hardly making an impact in the pile.

Here’s what I’ve read in the last ten days or so.

Sunshine Over Wildflower Cottage by Milly Johnson

I’ve read a lot of Milly Johnson books and enjoyed them.  But I had taken a break after getting very annoyed about the ending of the last one I read (it was a bit inappropriate, disability wise and made me want to throw the book across the room.)  Then I won a copy of Sunshine Over Wildflower Cottage so I gave it a go.

It was a fun read that I read cover to cover in one day, sitting in the garden (I’ve been doing a lot of that lately).  It’s not taxing and I always know what to expect but it is enjoyable and very relaxing

Song of The Skylark by Erica James

My first Erica James book and it definitely won’t be my last (I’ve had another of hers on my shelf for years following a twitter giveaway and will be reading it soon). Partially set during the Second World War this was chicklit with substance and I loved it.

A Year of Doing Good by Judith O’Reilly

This was a really irritating book.  I wrote more about that here.

Lost Lake by Sarah Addision Allen

I had forgotten just how much I like Sarah Addison Allen’s books.  This is the only one I own as all the rest were borrowed from friends or the library.  I need to have them on my bookshelves though!  I blew through this in one sitting (with just a two minutes break to turn the oven on when I realised how late it had got and was really hungry) and was disappointed when it ended.

Harry Potter and The Cursed Child by J.K. Rowling, John Tiffany and Jack Thorne.

This was not as good as a Harry Potter book but I did enjoy reading it.  It’s super quick.  I suspect the plays are a million times better than reading the script and I’m really keen to see how they stage it.