>Sharing Our Knowledge

>One of my friends recently had their first ever proper trip outside in a powerchair. They aren’t new to disability (like me they are lifelong disabled) but the wheelchair is a recent addition to their life and the powerchair even more so. They sent me an e-mail telling me how well they had done but that they’d had 1 specific issue with it – it hadn’t been able to handle a the gradient of a moveable ramp into a restaurant. I’ve been in that place (although only in my manual) and I think it should have been doable.

So anyway I sent an e-mail back saying “hey, try turning the speed up next time sometimes my chair can handle ramps with more speed that it can’t with less” I believe that’s something to do with less power to the motors at lower speeds. I’m not good on the technical side of things. The other thing I said was that my specific chair has tilt in space and if I have it tipped back it has a safety mechanism that sometimes kicks in meaning I can’t tip the chair going up a ramp and basically it stops me dead until I either start going up a lesser gradient or sit my upright. But obviously I don’t know the details of the chair they have. I’ve not heard back from them yet.
I’ve been using a powerchair for five years now and I’m sure one of the first things someone told me was if I got stuck on a hill to turn up the speed (although to be honest mine is rarely set below the max now – the amount you push the joystick forward affects the speed too and I prefer to control it that way generally). Certainly when I got this chair with the tilt in space one of the things they made sure I knew was about the safety thing.
It made me think about how much we all know and learn about things that maybe others need to know but aren’t told. The thing I said above with the wheelchair was one thing. Certainly there are others which might be because the system doesn’t make it clear or we don’t know to ask for it or to fight for it. Or because the person we’ve asked for help isn’t sure themselves.
If you were talking to someone who was either new to disability or to a specific treatment or piece of equipment or whatever that is second nature to you, what would you say?
If a powerchair can’t handle where you want to take it and you think it probably should be able to, try turning the speed up and/or sitting more upright if you can.
Manual wheelchairs can get stuck or be hard to push on rough ground. That’s generally due to the castors at the front, try going backwards – much easier!
Always come off the moveable ramps on trains backwards if the staff ask you too. Sometimes even if they don’t.
It’s ok to be friendly with carers or therapists (or journeycare assistants) or whoever but they are paid to be there to work with or help you and that’s there job. Which means generally they shouldn’t bit at you about how much they hate their job, dump their problems all over you or otherwise take the piss. In any other job in the world such blatent unprofessionalism would cause problems – so tell them it’s a problem if it is and complain if you need to!
I need to add a caveat to that point. Last year I told a carer (who was covering for my regular one) that I had better things to do than wait for her to be bothered to show up. She’d been 45 minutes late and told me she didn’t ask for me to be told she was running late as there was “no point.”. She then complained to the office about me saying she’d only been 5 minutes late. I was proved to be in the right there. Some years ago when I was at uni I had a carer who again came very late and I had a go at them about it. It turned out I was the one in the wrong about the time there (she’d been told to come at that time and I’d not been told of the change) and the minute I realised that I apologised. That carer also spoke to the agency she worked for about me but also added that whilst I had been upset with her about it i’d apologised as soon as I realised it wasn’t her fault.
I think it’s important that whilst people who help me as a part of their jobs treat me right I try to do the same for them too where I can.
I do have several very good friends who were originally carers for me or I met through their working for other organisations. It is possible but those people are the ones who never used our friendship to their own advantage when doing their job and who knew the importance of their job to me and my life as much as the friendship. With all of them except one once they stopped being a professional in my life our friendships improved a lot. With the other I met them through their then job but from a professional point of view they didn’t have much to do with me so it’s no different.

>Medical Bits

>I saw the practice nurse today about my weight. It went well and she’s pleased (I think) and so am I.

Also managed to fit in my swine flu jab when I was there. She asked if I’d had to done or had an appt to have it done and I was all “I’m going to but I’ve not had a letter inviting me”. There were some doses going to waste (because they’re in batches of ten and they’d had a clinic and were left over and needing using soon I think) But she checked the list of conditions and as neurological conditions are in the risk groups and my being in a wheelchair isn’t great for that sort of virus either (lack of mobility makes it harder for me to clear my chest although I’m luckier than some PWD in that I can cough and can cough quite well). I was amused because the minute she got to neuro on the list she stopped and was getting the stuff ready pleased that a dose didn’t go to waste and I wouldn’t have to go back either. I just went “You’re going to stick a needle in me then.” I’m reliably informed that I will have a very sore arm but nothing yet.
Bonus of all this being it’s the vaccine that only requires the one jab for most people and I fall into that category.
The thing that interested me was that she told me that neurological conditions have been on and off the list of recommended for the flu jab conditions. Which explains why I never knew before I went to uni that I should have it. I find that interesting. But in my case I personally believe it’s the wheelchair more than anything that makes me need the flu jab (and is why I was also vaccinated against pneumonia in 2001 which I just found out today is a one time only thing having been originally told it might be every 10 years)
The wheelchair maintainence service are sending someone out to me tomorrow to bring me my new wheelchair cushion AT LAST. The way that’s been handled is ridiculous but I decided against complaining to PALS about that. There’s a couple of niggles about my backrest on my chair too so I’ve asked that they look at that when they’re here.
If I’m right about these niggles I may have to have a major rant at someone about it. There’s at least three different things this week I’ve been aggravated at people about and kept my mouth shut so it’s all building up a little.
My TV broke at the beginning of the month (well the high winds we had blew the ariel out of alignment. Finally someone came out today and fixed it. I totally do not understand what he did. The short version is it’s working but it looks dodgy as to me (left the ariel where it is and did something to my electric meter instead which now has leads hanging out of it) so my Dad is coming for a conflab tomorrow about it. I suspect however I’ll have to call my housing.

>Up 1

>I am up a pound this week. And also a day late weighing as the scales weren’t working yesterday. I thought they needed new batteries but the display started working again so I dunno what happened.

I’m neither bothered nor surprised about being up a pound but very glad it’s not more. I only made one or two very small healthier choices this week so overall it wasn’t very conducive to good weightloss. Next week if I don’t lose I would like to maintain at the very least… ideally I want to be 18st by Christmas but that’s 10lb off so I’m thinking a bit unrealistic. We shall see.
Tomorrow I’m seeing the practice nurse for a chat about my weight and all that jazz which I’m hoping will lead to me coming away with a little more motivation. Tonight I’m going to see an old friend


>Official validation and the lovely purple verified winner bars aren’t available for a few more days but the brilliant news is too good to share! I’ve gone from a blue progress bar (under 50K) to a green one!

And I always knew I’d look good in green, but I didn’t know I’d look this good.
Current word count is 50,014 but the month is still young.
Can’t wait to validate and get my official winner icons and such like in a few days.

>[insert witty and amusing title here]

>I am tired right now but I want to get this done sooner than later. Plus I’m not sure I’m tired as such as fried my brain. We shall see.

This week I’ve managed several times to turn down things I wanted or to make healthier choices. The smaller pizza in Pizza Hut rather than the bigger one. Turned down the free biscuits, cake and bacon sandwiches on the train and just took the free drink that sort of thing. And as I already said a few days ago I’ve done a lot more wheeling of my manual chair than I usually would.

The main news this week, however, is that I think having my new desk is going to do wonders for my diet. Previously I was eating pretty much all of my meals whilst I was on the computer and I was also snacking on here as well. Truly my old desk was such a huge mess. A lot of it was from 3 years of hard daily use and it having a busted leg. But quite a big part of it if I’m honest was as a result of my using it as a table to eat off of it.

Ever since my parents took my old desk down on Thursday night I have eaten one meal at my desk and NO SNACKS there. Which in reality means my snacking has been cut down quite a lot as previously I could do so without thinking really, just grab something and come back here to whatever I was doing. And as I was usually writing or online or both whilst eating/snacking I was always paying atttention to what I was eating. Which meant it’s not unheard of for me to be eating, finish my meal or snack or whatever and then expect there to be some left because it’s been mindless.
I’m not denying myself snacks or whatever just having them in front of the computer and so far I’ve not really missed them. So I’ve just not had them. I guess that’s a pointer to just how ingrained in habit some of my eating had become. Or a lot of it. Maybe even most of it, it’s hard to know for sure.
And this is the second week running where I’ve managed one day with no coke and another with no chocolate. Hoping that next week I can manage the same but also add in one day of neither. That would rock.
It’s quite a small baby step type goal (or actually both the cutting down the coke and chocolate as I just described above and the not eating on my computer are small baby step goals come to think of it) but it’s a start and I think small is the way to start.
Besides, given the mammoth NaNo goal I’ve just set for myself, I can’t handle any other big goals right about now.
The best news however is that I’m down another 3lb! Woo!

>Strange Weekend

>The ads on googlemail are both interesting and a little unsettling at times.

A friend and I were discussing flowers in an e-mail. So my current top advert in google mail? (the one line text one) – for Interflora AUSTRALIA.
It’s been an interesting weekend.
My dad put my new desk together which looks great and half different half not. It’s basically the same one I had before but one that hasn’t had half the top scratched off and doesn’t have a broken leg. The difference comes from the fact it has no clutter on it at all or purple flower shaped fairy lights wrapped around the top. I miss my fairy lights (and for those who’ve been in my house who are going “for god’s sake how can you miss them when you’ve four other sets of fairy lights up in the flat?!” I just can, OK).
He came back today and put up a new unit to go by my bed but I still need to clear the old one off and move it into place, probably do that tomorrow afternoon when my mum comes round.
Unfortunately we’ve managed to get the two other new pieces of furniture (storage unit for the hall and a huge bookcase/storage unit for my bedroom which will fill most of the wall next to my corner desk in the wrong colour. So they’ll have to go back next weekend. But we have remeasured for a new bookcase (in addition to the one I got that has to go back) and it looks like the one I wanted will actually fit in (we thought it was too wide) so he can get me that too, or possibly two so I can have an extra in the lounge. Too many books in this flat!
I’ve been having a big sort out today – haven’t got huge amounts done but am pleased with what I achieved. Lots of writing too. Sort out is continuing all week as my mum is planning to come round tomorrow and Tuesday and help me as she did for a bit today. Hopefully I can find plenty of writing time too as I’m enjoying it but am back in the bureau tomorrow and Weds.
Had a chat with one of my journeycare guys at Reading yesterday and he was saying a journey we’d been debating doing via train is doable as we weren’t sure if it was accessible – and that if the station in question is unmanned (as it is at times) I’d be changing at Reading anyway and one of their guys would just come with me to use a ramp etc and help me out. So that was really promising. Until I told my dad and he went “Oh I was sure that station had stepped access” and I just looked online and the internet (last updated July 09) says it does. Might need a rethink.
There’s been a couple of other things go wrong this weekend which I can’t blog about but which have led to emotions and tempers running high. Not easy but thankfully I’ve not been to involved in a lot of it so overall it’s been a relatively chilled weekend.
And Doctor Who tonight was BRILLIANT. I saw on twitter that someone said it was a little bit too Torchwood in it’s ending for their liking. But for this girl who originally loved Torchwood and then came to Doctor Who it was great.

>Can’t blog, writing.

>Just a quickie – NaNoWriMo is going well after I had a complete crisis on confidence on Thursday over it. Everyone in the Oxfordshire forum on their was lovely and encouraging. And I also posted a thread in the “NaNoWriMo Ate My Soul” forum too and a couple of people from there were lovely too.

I met a few new to me wrimos in my favourite Reading coffee shop this afternoon too, that was fun.
My goal before the end of the weekend was 30K – I was on 24K and some odd at that point. Now almost on 28K and knackered but reckoning on an hours solid writing to get me to that goal. Really really going to have to go to bed but must admit to wanting to stay up and get those words done. But as my Dad is probably coming round to put some more of my new furniture around tomorrow and I’m back in the bureau on Monday I fear bed must win out.
28K is more than I wrote last year OR the year before! Both of which years I got stuck around 25K, must look the exact word counts up (can’t find them right now, GRR).

>Remembrance Day

>We got to IKEA on Sunday a bit before 11. We’d had a chance to get in there, go to the loo and start looking at the first room set up or two. I called my mum over to look at a unit I liked and we were trying to figure out if it would fit in the space.

Then they announced on the tannoy that it was 11 am and because it was Remembrance Sunday there was going to be a 2 minute silence.
We stopped and stood still in silence for those two minutes. So did most other people.
But we were right by the escalators up so people kept coming in and they didn’t know what was happening so they were talking. Some realised what was happening and stopped and stood in silence too.
Several others kept wandering around looking at stuff, either in silence or chattering away to each other as they did so. I overheard at least one couple going “Why’s everyone stopped?”
I find the fact that people couldn’t be bothered to stop for two minutes and remember to be disrespectful and very annoying.
I was on the train at 11 am yesterday morning. I had wondered if they would do a 2 minute silence on there but they didn’t. That doesn’t bother me so much as the people who saw that the staff (sorry, co workers they call them) in IKEA and most of the customers were observing the two minutes silence and disrupted it with their talking and their wandering.
Personally I haven’t been wearing a Poppy, I just haven’t felt the need to. I like the idea of the Poppy campaign I’ve just personally not had one this year. In previous years (or at least some previous years) I have. I know at least one person who doesn’t believe in the Poppy campaign and thinks you shouldn’t wear a Poppy. I think that’s on a semi-religious grounds and based on the idea that the poppy (or at least the red one) glorifies the idea of war. We haven’t discussed it.
I like the red poppies (symbolising remembrance), but I also like the idea of a white one (for peace) too. I’d probably be contrary and wear both.
Part of me was thinking earlier that if not for the Second World War I might not be here. My Grandad on my dad’s side was a farmer and so didn’t serve in the war – farming being so important to food production and thus a reserved occupation. My Gran was a land girl and was assigned to his farm, it’s how they met I believe. (the employer employee relationship seems to be a thing in my family as my Dad was also my mum’s boss at work at one point which is how they met too).

In Flanders fields the poppies blow

Between the crosses, row on row,

That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved, and were loved, and now we lie
In Flanders fields.Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.— Lt.-Col. John McCrae (1872 – 1918)

>Wheelchair Comments

>My brother saw my new manual chair for the first time at the weekend. His comment? “It’s very wide.”

Yes it is. Thankfully that was a comment I overheard him say to my mum as she got it out the car because I’m not sure what I would have said to that.
On Tuesday my cleaner moved my powerchair forward so she could get at the clean bedding on the shelves behind it.
“I want one of these” she says.
“What would you do with it?” I asked, slightly boggled by the idea.
“Go shopping.”
Oh, of course. I had to laugh at that.
Yesterday my powerchair decided that it didn’t want to charge. So I ended up going to Birmingham for the day in my manual. I managed pretty well but my parents had to get me to and from the station and my friend had to push me a fair bit. I was pleased by how well I managed but I was a bit disappointed by how much I needed to be pushed. Thankfully my friend is more than used to pushing me and has actually only ever seen me in my powerchair once which she found strange.
Lesson learned there being that I will always check the charger myself before big days out rather than getting someone else to hook it up. Although I’m pretty sure the person who put it on wasn’t to blame as when I went through and check all the connections it seemed the one to blame was not one that I ever mess with or get people to mess with but someone clearly had.
Anyway my being in my manual chair was confusing all my journeycare guys who know me well which was amusing.
Particularly when one of them went “where’s your automatic chair?!”
How great would that be? A wheelchair where you just told it I want to go to the station and it took you, no effort involved. My friend suggested an automatic chair could also be one you sent to the shop for milk without you.
I now have a mad idea for a short story involving this sort of thing.

>Going Down!

>Brief check in for the Healthy You Challenge this week.

In bullet points:
  • Managed one day with NO CHOCOLATE at all
  • Managed another with NO COKE at all and without feeling overally ill
  • Have a sinusitis type thing going on
  • Keep having nose bleeds
  • Made healthier choices on most days in the past week
  • Drinking more water
  • Wheeled myself all the way around IKEA for three whole hours on Sunday
  • Did a fair amount of walking at my parents house on Saturday.
The result?
2lb lost.
And my NaNoWriMo attempt is up to 19,531 words