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.

Random Bullet Points of Quarantine-ish Life

I have been meaning to write a blog post for ages. And as always I’ve started writing a couple and not posted them. So here is a post of Random Bullet Points of Life, written whilst waiting for a carer.

  • I’ve been advised that it’s worth me started to look into a new powerchair. I’ve trialled the one they recommended three times (I trialled, then when the tech came back to work on my Jive and brought it a second time as the weather was better and I could have a longer go, then it turned out I’d have to have a different seating type if I got a seat riser so they brought one with that seating – but no seat riser – for me to try). It’s not a terrible chair but it’s different. And right now I’m not loving it. So that’s on hold but at least I have an idea what I might get and if I get to a point where I need a new one suddenly we aren’t starting from scratch. We’ve also been able to 100% rule out my getting powered elevating leg rests (something which has been being debated whether I needed since my lymph treatment started) which is very helpful.
  • I went to lymph clinic three and a bit weeks ago. It went ok, not exactly what I would like to have heard but nothing to worry about. And probably now I think of it, not entirely unexpected.
  • The new taxi/support company I mentioned in an entry a while ago took me to clinic and then dropped me in the centre of Oxford for two hours before bringing me home. I zipped through the shopping bits just to see (but didn’t go in any shops) and then went for a long walk through Christchurch Meadow. It was so nice to be somewhere different and walk in different surroundings
  • Just over a week later they took me back into Oxford to University Parks for a long walk. Again it was nice to get out of Didcot and see some different things. I haven’t been to University Parks since I did Race for Life there in (I think) 2008 and I didn’t remember much of it.
  • I took a lot of photos on those two walks which I think will be source/prompt material for my probable NaNoWriMo project this year. I’m feeling very inspired.
  • Last week I went to Millets with the same people and this time they supported me to do my shopping. I bought a few plants, some bits in the farm shop and because it was too wet to go see the animals, we had a jacket potato in the restaurant. It was lovely and it was nice to eat out for the first time in so long although really I’d have rather gone somewhere for a more interesting meal. I think that will be the last time they take me out for a while although I had hoped to do a couple more. Certainly the weather forecast for this week puts paid to all the places I’d thought of going, even if I wasn’t concerned about the increased risk with rising cases of Covid-19.
  • This last week the carers have started coming every evening again. I’m not sure if this is temporary or if I’ll cut it down a bit again – I have some new stockings (and am getting a different wrap for one of my feet) and there was concern if I’d still manage independently with those so we put the calls back in.
  • About five weeks ago the carers also started coming an extra time on a Tuesday to do my cleaning. It’s working very well and although more expensive than my last cleaner (she had only just started when lockdown happened and wasn’t really working out), it was much less than the agency cleaners I had. The really good thing about is that if we lockdown again they can still come.
  • I’ve seen friends (the same ones) a few times and family once or twice (my parents more often). My mum came round to watch Fame on YouTube and work on our crafts this morning. So I am getting some socialising in.
  • I’ve done some CAB stuff – R&C, not advising – from home in the last week or two. I am not good at working from home!

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.

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.

A Trip to Paddington

Last week I wrote about how place are Allegedly Accessible but so often aren’t. About ending up with memories of events that aren’t of the good time I had and the things we laughed about but of things being unexpectedly inaccessible and the pain and struggle that causes.

I went to London on Monday. I’m worried that it’s going to be another thing that in years to come my memories are of someone lying to my face and the fear and panic that caused, rather than the fun that came before. I’m angry about what happened. I’m very sad about how my brilliant day ended and being left with those memories to cloud the fun ones.

I’ve been trying to write about what happened but it turns out I said it all when I ranted on Facebook yesterday. So I will just copy and paste that and add a couple of bits in

My friend Carrie and I went to the V&A on Monday. We got the train to Paddington. I’m really not confident in that area of London (I go into Waterloo usually) and hadn’t felt I could do it by myself. But as we walked back to Paddington I thought I could do this by myself. I even thought I might try going via Oxford to London Marylebone which is an area I don’t know at all.

Then the assisted travel guy wouldn’t listen to me when I said I thought it was better for me to go in the other wheelchair space and he and a colleague we also asked both lied when we tried to insist and said it was the only wheelchair space. Then there was announcement that coaches 9-12 would detatch at Reading. But I was already on the train. In what was announced as the train pulled out as coach 11. Panic.

Twitter to the rescue and a man with a ramp came at Reading, took me off the train walked me past the second wheelchair space in coach 7 to the one in coach 3. Because he was happy to put me at the front like I wanted. Telling me as he did so that Paddington do this all the time. He also said “they don’t care because once you’re on the train you’re someone else’s problem”.

And one of the guys I’ve known for years met me at Didcot, commenting about Paddington and telling me that they’d got a message to Reading as soon as Paddington confirmed where I was.

I always thank the assisted travel team but I made sure to tell the final one how much I appreciate how good they are at Didcot and how I always feel safe when I know it’s him (when the staff put me on the train they often tell me who will be around when I return).

I wish I could say the same about Paddington. I don’t know if I will go there again or not.

[NOTE: I will be complaining and am sending details of my experience on Monday to at least one professional who is collecting assisted travel experiences.]

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.

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.