A new set of wheels, part two

As I wrote in July I had ordered (now have) a new powerchair. Finding and choosing a new one has been tricky. But almost the hardest part has been biting the bullet and letting go of my Jive.

I got my first powerchair in 2004. It was an Enigma Energi. Basic, but rock solid. I’d been anti getting a powerchair but was in a situation where it was obvious I needed it. I had it nearly three years and the only thing I remember breaking was the charger.

It was a workhorse but as I used the chair more than expected, it’s poor suspension wasn’t comfortable and it just got to the point it worked but not for me. Replacing it was a no brainer.

In 2007 I got a Pride Jazzy 1121. It was technically second hand but we think it was probably used by it’s previous owner around five times. It looked brand new. That was a great chair for me, it had tilt in space which I don’t know if I’d have chosen for myself but now won’t be without. Interestingly, looking back the big issues I was having with spasticity at that time were at least partially caused by the fact it had a centre-mount footboard rather than swing away footplates.

But for the last year I had it it broke down several times. I got stranded in a lot of different places in a two or three week period due to an intermittent electrical fault. And then several months later I got stranded again due to another fault. There was no doubt it was time to start looking for a new chair.

Feb 2012 I got a Quickie Salsa M. It seemed like a brilliant chair at the time. A fair few problems and some niggles that affected the functionality. But I got to do things I loved in it, boring day to day stuff and some once in a lifetime events.

Then in 2016 the footplate broke. The techs came and took it to the workshop. They discovered it also had a broken chassis (the second in just over 4 years) and insurance wrote it off. I was told I could pay thousands of pounds to fix it but would be unable to insure it. Or they could fix the footplate and I could it back and keep using it until the chassis went completely. They warned me that when that happened I’d be immediately stranded, no getting it home. Again, replacing it was a no brainer.

The Quickie Jive M Hybrid was the replacement. Again, a few niggles but overall a really good chair for me. I did things I loved in it, things I hadn’t done before (either at all or not since I got a powerchair). I did a lot of the ongoing slog of daily life admin in it. It worked for me.

The big problem was that it was clearly getting worn out and the powerchair techs were suggesting it needed to be replaced. And how rattly it was beginning to unnerve me and affect my confidence. I also knew that the cost of ongoing repairs was mounting up and if I did the yearly service which was nearly due they’d just tell me to get a new one. But it was still working and saying “I want to move on” was tricky.

However as I said to the supplier the day I ordered it, I was aware that it could break anytime and I’d decided not to spend more . It could have been the next day on the way to breakfast to celebrate my brother’s birthday, it could be in six months time. So I just had to bite the bullet and order a new one.

I got my new Sango Advanced powerchair just over three weeks later. It’s been a bit of a process getting it set up and I miss my Jive. Changing wheelchairs is always hard because you don’t know if it feels wrong because it is wrong or because it’s just different to what you’re used to. And of course muscle memory plays havoc because my hand just reaches for the on button and jt’s not there anymore.

But I’ve had it nearly four weeks now, I’m getting some confidence in it and I think it will work out well. I will write more about it soon.

A Blog for Vidya

A couple of weeks ago I went to a nearby village and met up with some of my fellow Citizens Advice volunteers. We spent an hour or so sitting under a tree as the day drew to an end chatting.

There were seven of us, including someone I hadn’t met. It was nice to see them and to meet a new volunteer who joined virtually during the last year. It was very nice to catch up properly. I hadn’t realised how much I’d missed that until them. I’d spoken to several of them by video/chat/phone since we were last in the office but not all, and obviously that’s not the same as in person.

I have been going into the office for a couple of hours once a fortnight but it’s very different. No clients and only one other person in at the same time as me. I like it but I did enjoy the bigger group.

One of the people there, Vidya, mentioned reading my blog and asked about one of the posts. She also asked if I mind people reading but not commenting?

And actually that’s really common. Off the top of my head, I can name at least five or six people who have told me before that they read my blog and comment on it to me in person. But who don’t ever comment online.

I know a couple of them were people I know through their jobs who told me they didn’t know if they were allowed to comment. And I think several people only read it occasionally, say if I send them an email and they see the link in the signature. Or post it on FB.

And I do have to hold my own hands up and admit I’ve got really bad at commenting myself in recent years. I’m trying to comment more.

But that conversation did make me think, and wonder about who is out there reading my blog? So this is a blog for Vidya, and all my other lurkers reading this. Come say hi in the comments, it makes me smile when someone does.

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.

June Reading

I didn’t realise how much reading I’d done this month until I looked at Goodreads to write this entry.

My favourite book this month was probably The Moonstone by Wilkie Collins. I read The Woman in White, also by Collins, a few months ago and liked that more but I still really liked The Moonstone.

My least favourite was The Wasp Factory by Iain Banks. It had sat, abandoned part read, on my shelf for years. It was weird and a bit of a slog. I basically only finished it because it’s so short. I’ve been sorting out some books to go to the charity shop and this is definitely going straight in the bag to go rather than back on the shelf.

I’ve been trying to focus a bit more on reading books from Boxall’s 1001 books you must read before you die lists to meet my goal of 40 from the combined list (all of the books which have ever been on any edition of the list, think that’s 1315 books or thereabouts). Those books are marked with a *

  1. The Human Division by John Scalzi
  2. The End of All Things by John Scalzi
  3. The Chalet School and Barbara by Elinor M. Brent Dyer
  4. Tom Tackles The Chalet School by Elinor M. Brent Dyer
  5. A Taste of Home by Heidi Swain
  6. A Ration Book Daughter by Jean Fullerton
  7. The Highland Twins At The Chalet School by Elinor M Brent Dyer
  8. Howards End by E.M. Forster*
  9. Tender Is The Night by F. Scott Fitzgerald*
  10. The Moonstone by Wilkie Collins*
  11. The Wasp Factory by Iain Banks*

So far in 2021 I have read 44 books or 15,086 pages.

Random Bullet Points of Life

Catching up on what I haven’t blogged. I would like to write longer posts about some of these but also want to get them recorded in case I don’t get round to doing so

  • I am about four weeks post second covid jab. Going for the second jab went much better than the first and I had no side effects
  • I’ve been doing a lot of boring life admin while I have the chance: hair cut, dentist, opticians, lymphodema clinic and two trips to orthotics clinic.
  • It turns out getting new shoes from orthotics is very similar to getting new wheelchair tyres. I know I need them but I don’t know how much until I see an identical but brand new pair and am shocked…
  • I have been able to get out maybe once a week or so. To start with I was going with Driving Miss Daisy. I went to Dunelm, Millets twice (met up with friends one time), a couple of trips into Oxford after hospital appointments and two trips to The Oracle in Reading (once properly and then for just over an hour before my second jab as I had it at the madejski).
  • Starting two weeks ago, Dad and I had two trips on the train to get my confidence back. We did Reading one week and Oxford the week after. Both went well and it was lovely to see familiar faces from the assisted travel teams.
  • Last Saturday I went on the train by myself and met a friend who lives in Reading. We hadn’t seen each other since 2019 and went for lunch then cocktails. That was lovely but I was very anxious about the train. I just had to do it on the grounds of “if I don’t do it now, when will I.”
  • On Tuesday I trialled a new powerchair. It went much better then when I trialled a different new one last year. I was pretty anti the idea of a new chair before they came because I didn’t think there were good options for me but I was pleasantly surprised!

What I read in May

In May I was mainly reading The Old Man’s War series. Which are sci-fi, more than they are war books, but not straight sci-fi. I read the first one in April and then picked up books 2 and 3 on a trip to Reading I took to May. I later ordered 4, 5 and 6 from Amazon and will probably have finished the series by the end of this week.

  1. Many Different Kinds of Love by Michael Rosen
  2. The Ghost Brigades by John Scalzi
  3. The Last Colony by John Scalzi
  4. Zoe’s Tale by John Scalzi
  5. A Single Thread by Tracy Chevalier

So far this year I have read 32 books or 11,059 pages

What I Read In April

I read quite a lot in April compared to previous months. There was a period of over a week where I read an entire book, cover to cover, each day. That was after hearing some news that made me think and feel that I need to be doing more with my time than just sit messing around on my ipad. I’m not sure reading so much is the right response but it started accidentally and then I wanted to keep it up until I’d done a week.

Two or three of the books I read this month were re-reads (I’m not sure about one of them). Three of them had been sat on my self unread for several years, the rest for months.

One book (The Midnight Library by Matt Haig) was a good read that I enjoyed but I felt it really didn’t live up to the level of hype I’d heard about it. The Heart Goes Last by Margaret Attwood was another book that I liked (and my mum is reading it now and also liking it) but having read several of her other books, I definitely came away feeling like I’d enjoyed of the others more).

I loved Old Man’s War by John Scalzi more than I was expecting and having discovered there are sequels, am very keen to read them.

In April I read:

  1. Home Fires and Spitfires by Daisy Styles
  2. The Midnight Library by Matt Haig
  3. The Chalet School in Guernsey by Katherine Bruce
  4. The Doctor Will See You Know by Dr Amir Khan
  5. The Heart Goes Last by Margaret Attwood
  6. Five Years From Now by Paige Toon
  7. Old Man’s War by John Scalzi
  8. Things A Bright Girl Can Do by Sally Nicholls
  9. The Chalet School and The Lintons by Elinor M. Brent-Dyer
  10. Gillian of the Chalet School by Carol Allan
  11. The Chalet School in Exile by Elinor M. Brent-Dyet
  12. The Day of the Triffids by John Wyndham

So far in 2021 I have read 27 books or 9353 pages

What I haven’t missed in lockdown

I was struggling a bit with my mood last week. I commented to one of the carers that I had a few things planned – a top up food shop, a trip to podiatry etc and I hoped doing those unremarkable, normal things would help. Certainly in the November lockdown I had a shitty few days and then had a day that was what would have been normal pre-covid (my Dad came to look at my washing machine, I went to the dentist and into coop.) and unexpectedly it really helped.

Well I did my top up food shop yesterday which was only the second time I’d been in a shop this year (the first time was last week). And today I went to podiatry.

I experienced ableism in Sainsburys. On the way to podiatry I got stuck because a car was blocking the path outside a house having building work (not the first this year I’ve got stuck at that point) and I had to ask a lady walking a dog to ask the builders to move it. And then on the way home I had to go in the road briefly to get round an Amazon van.

So I don’t really feel better. But being angry has distracted me from my depression. And sending Sainsburys tweets about what happened did give me something to do I suppose…

Ableism, discrimination and microaggressions have always been part of my normal that disappeared rapidly and almost unnoticed when I started shielding, And I did say I wanted some normality. I’m not naive enough to think it was never going to happen again. But this was definitely a case of back with a vengeance.

I can’t say it was the normality I wanted, or that I missed it,

March Reads

I still feel like I’m not reading as much as I’d like. Although it’s also true that I abandoned one book and have two paperbacks and an audiobook that I started but have yet to finish. But here’s what I did finish in March. I have made plans to cut down my internet time this month (specifically by not reading fanfiction) so I anticipate reading more in April.

I’m not sure that I have a favourite and a least favourite book this month, I liked everything that I finished but nothing really stood out. I was pleased to read two books that have sat unread on my selves/kindle for well over 5 years, very possibly closer to nine or ten years.

Books marked 1001 count towards my goal of reading 40 more books from Boxall’s 1001 books you must read before you die before my 40th birthday in December.

  1. The Courage To Care by Christie Watson (audiobook)
  2. The Grass is Singing by Doris Lessing (1001)
  3. Coming Home to Brightwater Bay by Holly Hepburn
  4. My Kind of Happy by Cathy Bramley
  5. White Teeth by Zadie Smith

So far in 2021 I have read 15 books or 6096 pages.

Stick a needle in me…

…I’m done!

I went to Reading last Thursday afternoon, to one of the vaccine hubs, and received my first dose of the Astra Zeneca covid vaccine.

It was a year to the day since I’d last been at CAB. It felt pretty huge and I had a bit of an overwhelmed, happy cry as I went into the lift in the venue. It was also so quick and easy that there felt like there should have been more to it – 15 minutes after I arrived I was back in the car park, practically at the time my appointment was booked for (I’d been early and allowed straight in).

I went to a hub because it looked like I was still going to have to wait a couple of weeks to get it done more locally. That turned out to be incorrect (I could have had it two days later in Didcot but by the time I knew that I’d already booked) but I enjoyed the drive to the hub (we went the scenic route) and at least this way I do know when I’m getting my second dose.

Friday morning I had a few symptoms that were could be vaccine but also not massively unusual for me. Friday evening I was more achy that usual and had a bit of a rash on my arm but not the one I had the jab in (I was in my manual chair all day Friday and that could explain both of those) and I had a bit of a temp but not high enough to be an official fever just higher than my usual.

My poor powerchair survived the jab much less well than I did – it started making a noise as I wheeled in from the car park when I got dropped home, had to have a short notice visit from the wheelchair tech on Friday and needs a new gas strut again.