A New Set of Wheels, part one

I ordered a new powerchair today! I’m really pleased with what I ordered and I think it should work really well for me.

It’s called the Sango Advanced. It’s from a Dutch brand called Dietz Power. The chair has been on the market over there for about 4 years and on the UK market for roughly 18 months. I hadn’t heard of it before it was suggested to me.

I was a bit unsure of getting a chair I’d never heard of, from a brand I’d never heard of. But having discussed (and ruled out) the latest Quickie model and tried and hated one of the Pride Quantum models I was beginning to think there wasn’t a good chair option out there for me. I was pretty disheartened the day they first came for me to trial the Sango.

I was impressed by the Sango, it seemed like there were lots of options and it would meet my needs well. When I had concerns about how something would work for me they were happy to discuss and troubleshoot. It was also a good size and it made me feel like I’d still be able to live my life in it. I hadn’t gone ahead with the Quantum last year because I didn’t think I’d be able to do the things I love in it and so preferred to keep my very battered, much loved, slowly dying Jive.

Because I’m not buying a chair to sit well, give me mobility and help with pain. I want it to do all these things but I want it to bring me fun and laughter and everything in life. I can see myself using this chair. I can see myself at Citizens Advice (I’m going back into the office this week), going on the train. Drinking cocktails, loading it down with too much shopping and covering it with mud.

A few times I’ve raced Henry, my oldest nephew, in my Jive. He always beats me. I’m told he’s looking forward to racing the new chair to see if he can still beat me. And I am too.

Another of those stories

A couple of years ago I wrote about discovering I’d become one of the stories my wheelchair supplier tells. A tale of a disaster that they sorted and makes them look good. (And I was thrilled with the way they supported me with that) I’d hope two years later that someone else has taken my place in the stories rotation. But sadly I suspect I’ve probably just edged my way back onto the list.

Because less than a week after it was in the workshop for routine maintenance (and after I told a new tech who dropped it back that “I’ve stopped saying see you soon instead of goodbye to the wheelchair techs…”) it broke this afternoon.

It broke in a way that it never has before and I can’t really explain how or why. I was doing a move that I do multiple times a day with a part that is supposed to move like that. I thought “this feels loose” And then it was in two pieces.

With a dark rainy day meaning I was stuck in and a bit of a stressful morning it was already a rubbish day and this obviously made it worse. And this whole week has been a nightmare with me getting trapped outside my house for two and a half hours on Monday due to a broken lock.

But I do have the say that the moment when I was on the phone to one of my usual techs about my chair and we just had to both agree that this is a very me thing to do was a brief amusing highlight. Because he didn’t know of anyone whose broken a chair like that before. And all I could say was “But this is me, I am the one who breaks her chairs in ways you’ve not heard of.”

I do have a reputation to live up after all.

Hints of Normality

I’ve been quiet here lately as I experienced some ableism (that was made worse by the fact it was from someone I thought was a friend) and that took up a lot of head space made me withdraw slightly for a bit. But as much as I did need to step back for a few weeks I don’t want to stop blogging here completely.

The other thing that’s taken up rather more of my headspace than it should have is a problem with a carer. Now resolved and handled very well by the agency. It was sad for two reasons – one it was completely ridiculous and a carer I had thought I’d get on well with when we met and two, this agency have handled it so well it’s just another example at how bad the previous agency were at dealing with certain things. I keep having realisation moments like that and I find them difficult because it was a struggle with the previous one for a big chunk of the time (not always) and so many of my friends were telling me I needed a new agency for ages. But I didn’t think there would be a better agency out there.

Hints of normality are continuing to sneak in.

I’ve been briefly shopping twice, about ten days apart. I managed to get pretty much everything I wanted (of the things I could get in shops here) and the things I couldn’t get were mostly things I’d wondered if it would be tricky – like a couple of books that I’d thought might be too specific for our small Waterstones. I also managed to finally find and order myself a set of weights after trying for all of lockdown. I haven’t been to the supermarket but will probably go next week, at least to pick up my prescription.

Shopping was OK. M&S simply food was the only place it felt difficult and stressful but Mum had said it had’t been easy when she went. And I bumped into one of my friends from my writing group and her daughter (who I hadn’t met before) and have a long chat the first time I went shopping.

A few days before that first shopping trip a couple of my friends came to visit in the garden for just under two hours. We had a long chat and swapped some books. And the weekend just gone the new wheelchair taxi people I mentioned last time dropped me in the village I used to live in. Some other friends who no longer live in the county met me there and we sat in the park for a few hours then went for a bit of a walk along an old railway line. I went a bit further once they needed to leave then turned back and walked home. I would really like to get back up there for a walk again.

It’s been really nice to see friends again. I’m not sure how much that’s going to be possible but I’m glad to have done it. Sadly I think my other few good friends I won’t see in person again this year (or at all in one case) due to the distance.

One of the powerchair techs came out yesterday to service my chair. I hadn’t expected when I rang on Tuesday that they’d say “he can come tomorrow” I’d been expecting next week as it was routine so that threw me a bit. The verdict was it needs a few consumable bits (some of which I’d twigged and others I hadn’t but they’re either about due or not entirely unexpected) replacing, new footplates (I knew they were bent but had hoped it was just a new bolt required) and it is still rattling and squeaky! It’s going off the workshop at some point for some TLC.

I’ve seen both my nephews this week (each of them separately spent a day with my parents). It was the first time I’d seen Rafe since June and he’d definitely grown and was much more alert. Mum thinks he’s going to be Grandad’s boy (a bit like how Henry is all about Granny) but I’m not so sure. I snuck a quick cuddle with him which was lovely, if possibly not the most sensible thing to do.

I only saw Henry much more briefly because the powerchair tech rang when I was on the way out the door to ask if he could come three hours early. He (Henry) was busy looking at the things he and Grandad had planted but it was good to have a chance to say hello.

The only other thing I’ve done (other than you know reading and crochet etc) was sit in my mum’s garden for a few hours on Monday and teach her how to do corner to corner crochet. It took a fair few attempts and she didn’t think she could do it (I thought she could because it’s easy but it IS tricky to start a piece off). However a few hours after I got home she sent me a photo of her piece and she’d cracked it.

Mentally I did get quite fed up and down last night but I’m better today and doing OK overall.

In which able-bodied people are weird but if I point it out I’m the weird one.

I was in my manual chair on Thursday while the powerchair was with the tech.

My morning carer said “Wow you must be strong doing that.” And I was pleased because I feel like I’ve lost so much strength and can do so little in my manual compared to years ago. But I was managing well and I liked the compliment.

An hour later the tech came and took my powerchair. Once he left the guy who was here working on my bathroom asked if there was something wrong with it. I explained that it had gone for some routine stuff. Then he said “it must be hard pushing that chair.” I just said “well it’s certainly not as quick!”

At first it amused me to have two such contrasting reactions to the same thing – both congratulatory and commiseration. But it also frustrated me. Because it’s just one form that my normal takes, albeit a different one to most people

And it makes me wonder if I should start doing the same thing to able-bodied people. My Dad and my Uncle are in my garden doing some work at the moment. If I went out there and was like “You must be really strong walking like that” or “That must hard climbing that ladder” they’d think I was really weird.

I don’t get it.

At The Moment (15th February 2019)

I think it probably has been a good week – a productive  one at least. But it doesn’t really feel like it. Because for me the productiveness has meant I’ve had to be at home all day every day. I have managed to get out quickly all of the days apart from one but I’ve not been to CAB, writing or disability active.

There’s been contractors here all week sorting out my bathroom once and for all. They are here now laying the floor. It’s been quicker than I thought it would be (I had been told the work may go into next week) and it looks like it’s going to be good. There’s just a bit of debate at the moment about where the right place to put my shower chair is.

In related news I tried to take advantage of being in anyway to get the gas struts on my powerchair sorted out. But of course I told the tech any day this week, he choose yesterday and was delayed getting here until midmorning and less than 10 minutes later the contractor left as he hadn’t received my new grab rails at that point and everything else was better left until after the floor was laid today. Still, that’s the redesigned gas strut fitted now so hopefully that’s the end of those problems.

Also talking of my powerchair we’ve come to the conclusion the problem with the batteries was the charger. So I’ve bought the one they lent me. It’s one of those things where you say “I spent X for a second hand charger” and everybody is like “you’ve been ripped off, that’s stupid money, you should have bought a new one.” And then you point out that a new one is practically three times the price.

I’ve been reading, writing and crocheting this week whilst doing all my waiting in but as always I’m putting too much pressure on myself and I don’t feel like I’ve done enough. Because I set myself up to fail by deciding “I’m going to read a whole book, write 1000 words and crochet one blanket stripe each day.” and what actually happens is I read a book and a half, write 2000 words in total, start listening to an audiobook and decide to start a different crochet project. And feel like a failure.

Changing to the subject to thing I’ve been doing, Mum and I went to see a play last Saturday night. It’s called The Capital and is a 90 minute play with no dialogue. It stars 5 actors playing a lot more than 5 characters and uses moving walkways (travelators). It was good – much better than that perhaps sounds as it’s hard to describe – and I enjoyed it but Mum really loved it much more than I did. I personally felt that it needed a little explaining but she didn’t.

Telling My Story

My quickie jive powerchair. The focus is on the workings (and it's in the up position) and all you can see of me is my arm/legI’ve been disabled from birth and I’m proud to be a wheelchair user.

I love my powerchair, it’s scratched and squeaky, muddy but magic.  I’ve dripped pasta sauce all over it and bled on it. I’ve tangled the wool from my crafts under it and had to call for help when a duvet cover got jammed in the wheels.  I’ve drunk cocktails in it, danced in it and carted home heavy bags from the supermarket in it. It lets me live my life and do what I want. Someone described it as my independence but it’s more than that, it’s a part of my body.

This chair has taken me on over 1700 miles of shopping, appointments, memories, struggles and life in general in the 18 months I’ve had it. But lately it feels as though people are forgetting about me, that I’m Emma and more than the wheels that move me.

(I originally wrote this at a blogging workshop about telling your story. The exercise was to take a photo of you or part of you and then write a short piece/caption)

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.

And I Would Walk 500 Miles…

Last Saturday marked six months since I got my Quickie Jive M (I think I can no longer call it my new powerchair). I had done 487 miles in that time.

I was, however, a tiny bit disappointed that I hadn’t done 500 miles because then I could have written a blog entry using the Proclaimers song for a title. I was still going to write a blog entry about having had the chair six months.  But I was taking my time getting round to it.  Then this morning I did my 500th mile.

So now I can both write a blog entry about having had the chair six months and using the proclaimers song for a title. This is silly but makes me happy.

That’s absolutely flown by in many ways.  And it blows my mind to have done so many miles. To have been so many places and done so many things that I wouldn’t have been able to without a powerchair. Some of which I wouldn’t have been able to do without this powerchair.

When the wheelchair tech delivered the chair he referred to it as “black beauty” (because I’d been so insistent on having it in black).  It’s still black now but wether he’d still call it beauty I don’t know – it’s muddy with the odd scratch and several loose bits – Mum had to come round as an emergency on Saturday when I found a bolt hanging out and tightened that and several other bits. One of which is already hugely loose again. And it’s noiser than it was.

The number of miles I’ve been doing per month has been lower over the last few months as I’ve been doing less in the cold weather.  And my wheelchair batteries are definitely not holding a charge as well as they were because of that cold.

I’m definitely looking forward to the warmer weather and getting out do more things again. I think my next big trip will be Birmingham to see Billy Elliot the Musical in April with a uni friend but I’ve got a date in the diary for cocktails in Reading with a twitter friend and other things are a work in progress.

It definitely feels appropriate to end this entry like this

…and I would walk 500 more!

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.