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.

The First 50 Miles

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

In that time I’ve

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

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

train station platform

two cocktails (margaritas) one empty, one full

the sea at Bournemouth

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Penguins at Bournemouth Oceanarium

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

 

r-net powerchair control showing 50 miles travelled

Jive Talkin’ (part two)

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

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

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

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

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

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

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

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

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

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

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

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

Jive Talkin’ (part one)

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

I have a Quickie Jive M Hybrid.

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

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

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

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

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

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

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

 

 

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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I Gotta Feeling…

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

And then my landline rang.

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

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

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

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

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

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

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

Then it hit me.

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

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

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

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

I had to laugh.

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

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.