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.

A Powerchair’s Eye View

I’ve been lent a gorilla pod after a couple of us who are working on a video project wondered about the possibility of using one to mount a camera on my powerchair.

It works really well mounting the camera on the armrest of my powerchair and I’ve enjoyed playing with it.  But the videos make it very clear just how bad the squeak of my chair is – the tech who came out last week did succeed in replacing the wheel with the busted tyre but his attempt at sorting my squeak was a big failure. Here’s a powerchair’s eye view of my trip to the park this evening

(video of a park.)

I did take a really good photo in the park though (although I took my phone out of the gorillapod to take it)

My shadow on some grass - my seat riser was up to it's highest so the shadow includes the workings of that.
My shadow on some grass – my seat riser was up to it’s highest so the shadow includes the workings of that.

I haven’t yet been able to get the gorilla pod to grip on to my manual chair. I don’t have arm rests on it and there’s very little in the way of frame it could go on and the bits I’ve tried haven’t worked. I think that’s a problem with the chair rather than with the gorilla pod. If I can get it to work before I go to the sailing club on Friday for the Challenger regatta I may do a quick “spotted at the sailing club” video. I suspect that a gorillapod would almost definitely work to mount a camera or a phone onto a challenger and would get some excellent video/photos (might need a bigger one). But I don’t want to try it for fear that as soon as the boat heeled over my phone and the gorillapod would be in the water. I do need a new phone but that’s still a risk I’d rather not take.

I strongly suspect I’ll be treating myself to a gorillapod of my own when our project is over and I have to give this one back.

Q is for…

Q is for Quickie Salsa M

My powerchair is a Quickie Salsa M so what else to write about for Q? I use it daily and pretty much if I leave the house I do so in my powerchair. It’s my independence and so much more than that it’s my freedom.


These pictures were taken on the day I got it and it’s no where near as clean looking and is a little battered, three years later. It is however very well loved and a brilliant tool. Despite having had to have many parts replaced and it needing more maintenance than I believe it should do I wouldn’t be without it.

One of the things that amused me a lot when I got this chair was how impressed so many people were by the tilt in space on it – my previous powerchair had it as well but somehow it seems none of them noticed until they saw me in what they knew was a new chair.


I nearly didn’t get the seat riser (seen in action in this photo) which looking back would have been a huge mistake.  Being able to lift my seat up to a higher level is amazing.  it’s not the luxury the guy who sold me my chair described it as at all.

Random Bullet Points of Life

♥ I got my powerchair back yesterday and I took it out for a very long wander around this afternoon. I came back cold but with the cobwebs well and truly blown away and feeling happier.

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(An Instagram I took as proof I went out and because I thought it looked nice. Road, trees, sky, cars going past and the power station in the distance)

♥ I can’t remember if I posted here that I was going to take the creative writing class again. It was going to be a five week class with the same tutor I had before. The first one was last week but the rest have been cancelled due to low numbers. Which didn’t surprise me. It’s a shame but I’m not as bothered as I was because I wanted to take it to help me find my writing mojo again and I’d already located it.

♥ my GP just called me (at 7:20 PM). My iron levels were back to normal when tested but my stores were still low. I may need to keep taking iron on a very low dose long term however. I feel this is a perfect time to declare “sometimes it’s hard to be a woman…” (Who sang that?) retest in December.

♥ it’s probably over a week and a half since I finished a book.

♥ I actually finished a craft project! Well a couple of weeks ago but the recipient has it now so…

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(Pink crocheted baby blanket, crocheted in the round. Large bright pink stripes interspaced with a few narrower light pink ones)

♥ I have 26,437 words written for NaNo. They are mostly crap.

A properly poorly powerchair (part two)

I wrote most of this Thursday and ran out of time to finish it and then forgot about it!

So I got a phone call from the powerchair technician earlier tonight.

He’d fixed both the problems he’d found on Monday, replaced my battered arm rests and fitted my new batteries. It was on track for me to have it back tomorrow.

All good. But you know when you can just hear in someone’s voice that there’s a but coming? I don’t really know him but was getting that feeling.

And unfortunately there was. A pretty big but too.

He’d fitted one of the new tyres I requested this afternoon and then gone to do the second one. At which point he’d discovered another problem.

A crack in the wheel. Which means it’s not safe to use and I can’t have it back.

I’ve had this chair less than two years. Probably 20 months in fact.

In that time I’ve

    Had to have the swing away joystick mechanism replaced after having an accident with the door. That was accidental damage and so wasn’t covered by the warranty but was by my insurance. I’ve never been convinced I actually hit the door hard enough to crack it and don’t think it should have done. But at the same time someone then grabbed the door to help and I think that actually worsened the situation.
    Had to have all four of the casters replaced due to what was described as expected wear and tear after only 14 months. And I mean the wheels not the tyres. Apparently according to the supplier you could say it was a little early but it wasn’t covered by the warranty.
    Worn out my tyres on the main drive wheels to such an extent they have no tread left. I have to pay for that and given how many hundreds of miles I must have done in it, don’t mind that.
    Ditto batteries. They are now not holding their charge anywhere near as much as they were. I’d say at the moment I could probably do less than two thirds of what I used to be able to between charges and I’ve struggled more on slopes and seen the low battery light rather a lot lately :-S usually I would expect to get between a year and 18 months out of a set so this is pretty good. But part of that will be because it was a brand new chair and I won’t get as much out of them next time. It was suggested by the technician that I could get another year out of them because average is three years (I know of at least three other wheelchair technicians who would read that and be all WTF. But I don’t think they read my blog) but I wouldn’t be able to go as far between charges. I said no because really what’s the point in that? And also, that struck me as dodgy advice (a pet peeve of mine, it’s the CAB adviser in me).

    Had problems with one of the front wheels keep bouncing off the ground leading to the discovery if a broken shock absorber and a cracked chassis which needed fully replacing. Both covered by the warranty.
    A cracked wheel. That was only found after my chair was in the workshop for several days when they took the wheel off to do the tyre. Apparently it’s lucky they decided to clean my wheel before putting the tyre on otherwise they wouldn’t have seen it. Sunrise Medical claim this is a general wear and tear item and not covered by the warranty. I was about ready to lose the fucking plot when the technician told me that. But then he told me he’d argued the point and Sunrise Medical are providing a new wheel for free as a gesture of goodwill. And yes calling it a gesture of goodwill really does take the piss.

Oh and I’ve now been told that that my wheelchair supplier knows of four people including me who he’s got or had a part in getting a
Quickie Salsa for only to have the chassis break.

Interesting times people.

I had an email from an old school friend Katherine earlier this week. She was talking about getting a new wheelchair. She’d been to try out new chairs that day and one of the ones she tried was the mid wheel drive version of the Salsa. I told her to avoid it at all costs.

Part of me wishes someone had told me that last year.

(Setting the categories for this post has made me think I should set up a “completely and utter bollocks” category. But I think I’ll wait until another day)

A Properly Poorly Powerchair

I’ve got a poorly powerchair. I’ve known for a fe weeks that it didn’t feel right but I couldn’t put together what was wrong with it.

Then mum and I went to Oxford to see The Mousetrap and on our way to the station afterwards (I had gone in early for drinks with a friend) she said the back of my chair struck her as wrong. When we got back to the station she had a properly look as we had time before the train and said she wasn’t sure. But I mentioned that I’d thought it felt off and had had a feeling it was something on the front right.

I’d been not saying anything to anyone because I wasn’t sure if I was right and anyway denial was a nice comfortable place to be and meant i didn’t have to do anything to sort it out. But she said I was right and that my front right wheel (my chair has six wheels) was coming on and off of the ground as I wheeled and actually I could see that in the reflection in a shop window.

So I emailed the guy who does my powerchair (at the moment I have two wheelchair technicians because my manual is NHS and they provide servicing for free. Consequently I see a lot more of the technician who deals with my manual). And I also mentioned that I definitely needed new tyres and suspected I was beginning to need new batteries. We spoke on the phone and he said he’d come out yesterday.

In the mean time I was using it as usual and trying not to worry about it. A few people had said to me since then it didn’t look right including a new staff member at Reading Station I’d never met before. I told him I knew and was working on it but in the mean time I preferred if we could pretend there wasn’t anything wrong. I’m not sure he got it but he tried to pat my shoulder in what I take to be sympathy. Let’s just say that I was whipping through the station quickly between trains and he was walking next to me and it wasn’t my shoulder he got…

The technician came mid morning yesterday and within about five minutes had spotted that it had a broken shock absorber, I asked if I could keep using it until they had the part and he paused at which point I added “bearing in mind I went all round Ascot in it on Saturday and round Oxford yesterday…”

Anyway, basically it’s not safe to use.

We chatted a bit more about the chair and he asked me if wanted the armpads replacing while he had if. I showed him a bit that I needed putting back after it had fallen off (the battery cover) twice in the middle of Oxford the day before and he went “are you trying to wreck it?” And well I had to admit that I wasn’t but it really does look that way.

Then after he asked me about book blogging having seen my email signature and I tried to explain, I’m not sure successfully, he left.

Taking my poor poorly powerchair with him.

And they’ve had some of their courtesy chairs stolen so they don’t have any available for me to borrow.

Several hours later he called me back. With what he described as “good news, bad news, and news”

When he got back to the workshop he found my chair has also got a cracked chassis and needs a whole new one. This, apparently, is not unheard of which I find very concerning. Especially as I’ve got a Quickie Salsa M and I’d always heard that Quickie and their parent company Sunrise Medical are one of the most popular/best brands out there.

This was the bad news, along with the fact that I’m not getting my chair back until next week at the earliest. The good news was it’s covered by the warranty (I’ve had the chair since Feb 2012). The news which was in between good and bad was the details how much my new tyres and batteries will cost. Let’s just say its £extortionate but cheap when you work out how long they last and how much taxis would cost (my dad is giving me a lift somewhere tonight. If I had t get a taxi it would be about £6 each way it’s not much more than a mile)

So I’m powerchair less at the moment which makes things interesting.

But it does mean my do NaNoWriMo in a low key way plan is out the window and I’m getting loads of writing done 🙂