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.

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.

Miles on My Tyres

I’ve had my new powerchair for two months now.

I don’t want to write very much as I’m stressed and I’m tired and I don’t want to write a moany post about everything that’s going on.  It’s not been a good week or so in many ways as it’s been stupidly busy and there were some unexpected problems both minor and not quite so minor (although it’s not all been bad as amongst all the stress I managed two trips to Oxford to see friends and an evening out at a Jo Caulfield show).

What I did want to make a note of somewhere and my blog is as good a place as any is the fact that as of this evening I’ve done 184 miles in the new powerchair. And a hell of a lot more miles in it if it counted ones done on the train – when I was talking to a couple of my CAB colleagues about it several weeks ago one of them was so shocked by how many miles I’d done that she actually asked if it counted those miles or not.

I did 95 miles in the first month and 89 in the second.  I was really hoping as I was pottering around this evening that it would tick over and be 90 miles for this month but I’m pleased by what I’ve done and achieved this month.

It includes two trips to Reading, two to Oxford and one to London. I  got on the tube when I was in London with no problems too which is great.

Month two also included me calling the wheelchair tech in a panic because my footplate had broken and then calling back an hour later after Mum had managed to fix it.

And unfortunately it also included another “oh shit” moment with the chair.  So I’ve had it two months and I’ve had two of those moments. I’m desperately hoping I don’t end month three at a three for three stage.  That was the day I went to London – at the end of the day when I’d done all the tube and all the stuff I’d been unsure of managed to drive my bloody chair off the side of a ramp coming off the final train of the day. I don’t know 1) How I didn’t fall out of my chair – I ended up balanced partially on and partially off the ramp as luckily I managed to stop with just one wheel off and 2) How they managed to get me back on the ramp – it too a combo of the guy helping me, the train driver and me trying to drive my chair that did it I think.  The next twice I travelled I was met by two people off the train but when I asked if this was a new thing they’d be doing with me due to my near miss they didn’t even know about it.

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.

 

 

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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Promises to Keep

When I ordered my new powerchair (8th June) I was told it would take between 4 and 6 weeks to come but the manufacturer (Sunrise Medical) had been told it was urgent.  And if I’m completely honest I didn’t believe that was going to make any difference.  But my previous chair was from the same manufacturer and came really quickly so I was hopeful it would be on the sooner end of that estimate.

5 weeks later I asked my supplier if they had any news of when I’d get the chair and if not could they get me an update.  And it turned out Sunrise had decided that my chair needed to be put through the custom build department which is based in Germany.  That had caused a delay and they hadn’t told us (allegedly forgot).  It was definitely going to ship on 27th July.

So I was expecting to hear from the supplier yesterday or today with a delivery date and when I didn’t I emailed to ask for another update.  They checked with Sunrise then rang me. It didn’t ship as planned.  And once again Sunrise never bothered to tell us. It finally shipped yesterday evening (6 days later than planned).  I’m not sure when I’ll get it as the supplier wouldn’t comment when I asked – but it may well be a few days after they get it as they need to do a full inspection before they can bring it out and once it’s here they need to fit it which can take a couple of hours.

I don’t know why the delay – I was told “that’s Germany for you.” and I don’t know about that but what I do know is that delays and poor communication are beyond common with disability equipment and wheelchairs in particular.  I’d have less of a problem with the delay if as soon as it was ordered they had told me “sorry, it’s got to be manufactured by the custom build team due to the spec you want and that’s going to cause a delay, we’re looking at 7 weeks.”

For the past two months since my Quickie Salsa broke I’ve felt like my life was on hold a bit. Especially for the first two and a half weeks when I was housebound. Less so since I got the loan chair and could get out locally but I’ve not been able to get out and about further afield.  And there were events I’ve had to say no to.  I feel like I’ve not done anything or been anywhere since it broke. I made the mistake of saying that to Mum and she proceeding to list everything I’ve done and you know what I have done loads but I’ve also missed out too and it’s beginning to look like I missed my only opportunity this year to do something I’ve done every year since 2012.

I want the Jive to be the best chair it can be for me.  So I do want them to take their time with it and build it properly and well.  But at the same time I wonder if the people working for Sunrise realise what it means to me. I need that chair – I’ve got a life to live: friends to visit and places I both want and need to go and shopping to do and cocktails to drink.  And most of all I’ve got promises to keep and miles to go before I sleep.

Wheeling on Broken Glass

I have solid tyres on my wheelchairs. It’s one of the key things I insist on in a wheelchair. I’ve not had a chair with air tyres since my first year at uni and I’ve never had a powerchair with air tyres.  I know a lot of people aren’t keen on solids and find them uncomfortable but I’ve never noticed any difference between comfort of air or solid tyres.

Mentally however it’s huge.  I feel safe with solid tyres and it’s not something I have to worry about.

I remember the last time I got a puncture in a wheelchair really clearly.  I was at uni (in my first year) and we were leaving the students union late one night when I must have caught some glass or something and it punctured. Disaster.

My carer found where it was and my housemate (who was a full time powerchair user) let me borrow her manual.  The disability coordinator popped round the next morning and patched it for me with a repair kit. And off I went along with my day. Then it went again a little while later. He came back and changed the inner tube.  And off I went along with my day.  But it blew again.

And I think it went for a fourth time before I called my GP at uni in despair and begged the receptionist to find out for me who the NHS wheelchair repair contractor was for the area.  I’d not needed them since I’d moved.  She called me back, gave me the number and told me she’d already spoken to them and an NHS wheelchair tech was on his way for an emergency call out.  He replaced the whole tyre (in fact I think he replaced both tyres) and then I really was off along with my day with no problems.  Apart from the fact it’d taken the whole day and a lot of being rescued.

I had a reassessment for a new wheelchair not long after that.  And the one thing I didn’t have to think about was the suggestion that I have solid tyres – I never wanted to have a puncture ever again.

The loan chair I have at the moment has air tyres however.  And they make me really anxious.  I spent the first several days I had it keep wondering if I’d got a puncture and stopping to check (I’m not sure what the point of it was).  I’ve got over that now.

But all I keep noticing is just how much broken glass there is all over the roads and the paths.  I’m completely horrified by it and seem to have developed the ability to hone in on the smallest spec from several metres away.  And yet, the rational part of me is sure when I stop and think about it,that there isn’t any more broken glass around than there was when I had my own chair with it’s solid tyres.

Being back on a pair of solid tyres isn’t the thing I’m looking forward to the most about getting my new powerchair.  It’s definitely top 5 though.  And I’m looking forward to not worrying about wheeling on broken glass.

Fake

As I wrote a few days ago, I’m getting a new powerchair.  I was very upset when I first discovered I needed a new one but then I made a conscious decision to see that as a good thing.

I’m getting a bit sick of telling people this story but it’s important background to something else I want to write so I’ll share it here.

The last Bank Holiday weekend my footplate on the powerchair broke.  For as much as I’m always breaking the damn things on the manual chair (see also: “designed to break” and file it under bullshit excuses) I’ve never broken one on the powerchair.  I don’t think I’ve ever broken a footplate on any of my powerchairs.  I had what I thought was a minor knock on a door frame (90 degree turn and tight door) and although I originally thought nothing had broken it seems I was wrong.

It was beyond frustrating because the actual chair was working fine it just wasn’t safe for me to use with only one footplate.  I spoke to the tech and emailed him some photos of what had happened when they reopened on the Tuesday and he came round on the Friday with the bits he thought were needed to fix my chair.

And then when he went over my chair he pointed out that one of the front castors wasn’t on the ground properly (I hadn’t noticed we think because my weight in the chair was forcing it down).  He was concerned that there was something seriously wrong and the wheel could fall off at some point.

So I cried and he took it back to the workshop and stripped it down. At which point he called me to tell me the entire chassis was bent.  The chassis is a bit of a known weak point on the Salsa M and it’s the second time I’ve needed it replaced (it cracked about a year and a half after I got the chair and was replaced under warranty).

I’ve got insurance on my powerchair which covers accidental damage so I made a claim and the tech sent a quote. I started getting very antsy at this point because all of a sudden there was no end in sight.  It didn’t help that the insurer had told me they could usually make a decision same day and the quote went in Friday afternoon and I didn’t hear back until Tuesday midmorning.

And the decision was that the chair was worth less than it was going to cost to repair it so it was a write off. Oh and by the way, the new for old clause in the policy? Doesn’t apply because of how old the chair is (it has an estimated life of 5 years and I’ve had it 4 and a bit).

So I suddenly needed a whole new chair and my ability to cope was rapidly going out of the window because I had no idea when I’d be mobile again or anything (in reality the tech bought me a loan chair the next day although I wasn’t able to use it properly until they replaced the batteries a week after due to a spectacular trip to town via taxi where I wheeled a not very long distance and dropped a third of a charge and then couldn’t find a taxi home).

Here’s the thing:

I’m very very fiercely independent.  I go here, there and everywhere and do everything I can without help.  I go to the supermarket and do all my own shopping (occasional online shops for heavy stuff every few months and small shops on my way home from CAB a couple of times a week). I go out and see friends and I go off for days out and trips away.  And I do it because I’ve got a powerchair.

My ability to wheel my manual is too little and wheelchair accessible taxis are too rare (there is one taxi company who has two in Didcot and last time I checked there are none in any other place in South Oxfordshire) and too expensive for me to be able to go out when I don’t have my powerchair.  I basically didn’t leave the house for nearly three weeks.

So suddenly I had to get all of my shopping online. Which is fine. But then you have the times when all I needed was a loaf of bread or another packet of sandwich stuff. Not enough to do an online shop and not something I’d think twice about popping out for a bit to grab if I had the powerchair. Only it was something I couldn’t do any more and finding someone who would go and do that isn’t always easy. And my prescription? Well I get it sent to a pharmacy I pass all the time. Only someone else had to pick it up and would probably have found one of the supermarkets easier to get it from.  That letter that needs posting? Not going to happen.

I wasn’t really seeing anyone because I wasn’t getting out.  And all of my independence had gone.  Because as independent and out there as I am, it’s all sort of fake.  It works as long as I have the equipment I need to make it possible.  And the minute my powerchair went, that did too.

I’m enjoying having the loan chair (although I’m not a fan of the actual set up it’s got) and being independent again.  But I don’t think I’ll feel calm and confident again until I get a set of wheels that’s actually my own.

Especially given the fact that I managed to accidentally disconnect the control on it today and for thirty terrifying and heart stopping seconds I thought I’d properly broken it and was going to be stranded again.

Any Colour You Want (As Long As It’s Black)

I am, unexpectedly, getting a new powerchair.  The reasons behind that are long and irritating and frankly I’ll get to them in another entry tomorrow.

One of the really good things about getting a new powerchair is something I think some people outside of my immediate family are having trouble understanding.

I got to choose the colour.  I’m excited about that.  My Quickie Salsa M (most recent powerchair) was red with silver swing away footplates because that was the only colour it’s available in. It’s a nice red but I wouldn’t have chosen it.  My Jazzy 1121 (powerchair before that) was technically second hand so I got the green the original owner had chosen (it had, perhaps, been used 5 times by the original owner).  It was a dark green and there wasn’t a huge amount of it so it was OK.

Here’s the thing: if I get to choose a colour for a wheelchair I pretty much always choose the same one. Black.

As a teenager I went to wheelchair services and they said “this is a new wheelchair on the market and it’s only going to be available in black” and I said “well, that’s the colour I’d choose anyway.”  We went back several weeks later to have it fitted and the manufacturer had decided it would be available in a range of colours. As wheelchair services hadn’t specified a colour they’d sent blue. A hideous, bright, horrible blue.  It didn’t help that the seat and backrest slings on this chair were highly patterned with coloured splashed in pink and purple (and maybe another colour?) on black and it really clashed with the blue of the frame. The OT went out of the room for something and I told mum that I hated it. I remember that at my school they had some old falling apart spare wheelchairs, heavy and uncomfortable and ugly as anything. I told her I wasn’t going to use the new chair, I’d rather use one of those.  I left the hospital without my new chair that day and the OT arranged for me to get one in the black I’d been promised.  I felt comfortable in that black wheelchair when it came and that allowed me to get the most out of it I could.

One of my friend’s parents told me point blank she didn’t understand why I’d not been happy with that blue wheelchair and why my mum had pushed for it to be changed. As a young teenager I didn’t have the words to explain it beyond “I didn’t like it.”

When I was at uni I went to wheelchair services at Stoke. As it was the first time they’d seen me it was a long assessment and involved more professionals than any wheelchair assessment I remember having before or since.  At the end when we were wrapping up they confirmed which of the wheelchairs I’d chosen (there were two which would work for me).  They asked if I had any questions “Yes, what colour does it come in?”  They weren’t sure and could probably find out “I want it in black.” I told them.

Not long after I got that wheelchair I was asked to speak to an engineering student – a friend of a friend – who was doing a project about disability equipment. I forget what it was he designing.  He proudly told me one of the features of his product would be a choice of colours. I wouldn’t have to have black, I could have any colour I wanted – just like a bike or a pair of glasses.  I told him I already could have a choice of colour and I’d chosen black.  He didn’t get it.   I tried to explain that a wheelchair isn’t like a bike or a pair of glasses and black was my choice. To him, it was like a bike and you want it to stand out in your favourite colour.  At the time I had 24 hour care and one of my carers was there and seeing me failing to get through told him she also cared for two other students “One with a blue wheelchair and one with a purple one.”  I’m not sure he got what he wanted from our conversation.

I want a black wheelchair because I like black. And because I like bright colours and I like to wear them and have them stand out.  I don’t want to be worrying about whether my clothes will clash with my chair.  I don’t want to be wheeling round in a chair that’s a colour I hate.

And I want people to see me more than they see the chair I’m sat in.  Don’t ignore my chair, you can admire it and ask questions and acknowledge it. This new one is pretty awesome and I think I’m going to be very happy with it. But I’m more than my wheels and having a black one helps with that.  It’s a part of my body and it needs to work for me.

When the wheelchair tech was here with new chairs for me to trial he suggested we tell him what the maximum I wanted to spend was. Less than 36 hours before that I hadn’t even known my existing chair was unrepairable and I was like “uh…”  Mum told him we wanted me to have the right chair for me and she didn’t want to get into a budget.

I’m confident the chair I’ve ordered (Quickie Jive M Hybrid) is that best  chair for me.  And a part of what will make it work for me IS the fact it’s coming in black.