You know you’ve got CP when…

…knitting in your powerchair looks like this:

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A ball of black and silver sparkly yarn (Sirdar Firefly) with a hole in the middle balanced on the control of my powerchair. The joystick is through the middle sort of like a spindle.

And knitting your manual chair looks like this:

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The same yarn balanced on my manual chair. The brake is acting as a spindle. The ball is slightly smaller here (it comes wrapped on a ring of card) and the central hole is larger.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

A Dream Is A Wish Your Heart Makes…

I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.

I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)

Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.

So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.

My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.

I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.

I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.

In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.

No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.

And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.

Wheelchair Etiquette

Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to

Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat riser in my powerchair I’ve always thought that.

And don’t touch my damn chair.

Don’t lean on it.

Don’t move it when I’m not in it unless I ask you too

Don’t sit in it when I’m not in it.

Don’t grab my handles and take over pushing

Don’t grab my handles and stop me because you want to talk to me (which is what someone did tonight and is why I’m finally writing this post)

Realise that there are always exceptions to these rules but I’m not always going to tell you in advance what they are.  I don’t always know what they are! One such example is in this entry and still makes me giggle to remember four years later.

I’m wondering if this is a topic I need to come back to at a later date and in more detail – what do people think?

>Just Keep Swimming

>Day 42 of 100.

Just Keep Swimming

Splash!
Straight into the water
It’s cool
Not cold but definitely noticeable
Soothing on too hot skin
Sinking down and down
Wet all your hair
Refreshing
And then keep your shoulders under
Smile at the kids on the other side
Say hi to a friend and chat for a few minutes.
Waves waves waves
Up and down
Up and down
Thrown around
Body surfing
The unexpected storm
Watch the aqua aerobics group
Try and fail to copy their movements
Surrounded by water
Stretch and savour
And only then
Do you swim
Front crawl
A lazy attempt at breast stroke
And a long float on my back
A few kicks don’t achieve much
But must be done
Right leg more than left
People think it’s just a swim
But it’s more than that
A rare taste of mobility
Without my wheelchair

♥ Emma

>My new powerchair

>[I’ve been trying to upload this with photos in it for two days now. For some reason it wouldn’t work so I’ve deleted them and will share them some other time. Just pretend there’s photos of my awesome chair in here]

The new powerchair is great. I’m really enjoying it. Getting sick in the first week of having it and not being able to use it for a few days is seriously unfair. But such is life.

There are a few small niggles but none are a big deal.

One is that I had planned to use my Jay 2 deep contour cushion that I have in my manual in it too. But the chair is higher than my manual and they weren’t joking when they named the cushion deep. It’s huge. But oh so comfy. And with it in the Salsa I ended up with bruised knees and couldn’t get under tables. So I switched to my old wheelchair cushion which is a lowzone on. That’s much better for tables etc. just after a couple of hours it gets a little uncomfortable. Not a big deal but something to think on.

And the second is I keep pressing the wrong buttons. Because I do it without looking and press the one that it would have been on the jazzy. Totally a muscle memory thing and really minor. I find it interesting.

The silver footplates have grown on me. I’m no longer looking at them and going “ugly ugly ugly!!” but at the same time I’d have rather had them red like the rest of the chair. I really like the red but an actual choice of colour would have been cool. Purple or turquoise were what I’d been thinking about.

The extra speed rocks (most chairs do 4mph max, this does 6mph). Seriously. But legally I can’t use it on paths which means I don’t get to play with it often.

♥ Emma

>It’s The Most Wonderful Time of The Year

>I got my new powerchair this afternoon! It’s a Quickie Salsa M with a jay3 backrest. And it’s red and silver. The silver part of that was a surprise. I’ll post more about it when I’ve had the chance to give it a good run. But so far I’m enjoying it.

I didn’t know it was coming today but when I got up (after sleeping late) I saw I’d missed a call from the supplier and found out they could come in a few hours. I got in the shower after that, practically bouncing with excitement. And I was singing “it’s the most wonderful time of the year”. Badly. I can’t sing in tune and I didn’t know most of the words.

This piece for day 34 of my 100 days of writing stemmed from that. I don’t usually write filk so it was a fun challenge. And different to I expected.

The Most Wonderful Time of The Year

The most wonderful time of the year
A new wheelchair coming
And engineers saying they’ll soon be here
It’s the most wonderful time of the year
The hap happiest season of all
With great happy outings and adventures coming
When the engineers call
It’s the hap happiest season of all

They’ll be catching of trains
dodging of rains
And maybe going out in the snow
They’ll be lots of day trips
Tales of crips and
Wheelchairs long long ago

It’s the most wonderful time of the year
They’ll be kerb climbers climbing
Seat risers rising
And wheels quickly gliding
It’s the most wonderful time of the year

They’ll be catching of trains
dodging of rains
And maybe going out in the snow
They’ll be lots of day trips
Tales of crips and
Wheelchairs long long ago

It’s the most wonderful time of the year
They’ll be kerb climbers climbing
Seat risers rising
And wheels quickly gliding
It’s the most wonderful time of the year
It’s the most wonderful time of the year
It’s the most wonderful time of the year

♥ Emma

>The Meaning of Wheelchair User #wheelchair #language #disability #disability #CP

>
I’ve been thinking for a while that there needs to be a different term to wheelchair user.

I spend 99% of my waking hours in my wheelchair. I can stand to transfer but I need to get my chair right by the bed or the loo or whatever. The thing I’m transferring to needs to be the right height and also stable. In the bathroom I have to have grab rails and with them I can take a couple of steps. If I stay in a hotel I have to a room with a wheel in / level access shower.

That’s what I mean when I say “I’m a wheelchair user”

Other people who use wheelchairs have a lot more mobility than me. Need to get up a couple of steps? It’s a struggle but it’s doable. Or they can use a normal toilet if they can get their chair outside the door. Perhaps the offer of a ground floor hotel room is all they’re looking for.

And of course there’s a whole spectrum of wheelchair users beyond and in between my own level and that of my hypothetical wheelie.

The thing is though it feels like lately I keep being told “we have wheelchair access” or “we’re used to dealing with wheelchair users”. And then whether I turn up there, or we’re just chatting and it comes up or I ask pointed questions the truth comes out.

They might have wheelchair access but not for a wheelie who can’t manage in the ladies? A wheelie like me. They don’t have the access I need. But it’s ok. Because they have “wheelchair access.”

This NHS support group thing I might be joining, the staff say they have a lot of wheelchair users. They’re used to dealing with them. It felt to me like they were making a big deal of that. Then when I went to meet one of the staff members. And the majority of their wheelchair users? Struggle with distance but can still stand and walk a bit – we’re talking that level of mobility.

The staff are used to that sort of wheelchair user. I’ve already been told that in what I consider a big part of the programme, they can’t accommodate my level of ability. They’ve made a plan to do something else but I can try the regular thing if I want.

Then there’s the accessible hotel room where I get grab rails – and a bath. Despite having told them I had to have a shower. No good wash for me then. Interestingly that hotel had 13 “accessible” rooms – and only 1 had an adapted shower.

I understand that we’re a huge spectrum of ability and need and we’re all different. I value that and I’m not suggesting that any one type of wheelchair user is better than the other.

But I am getting very frustrated and a little bit sick of hearing hype about wheelchair access and then finding that it’s not suitable for someone as disabled as me.

So I’ve been thinking that there needs to be different terms to wheelchair user. One that a wheelie with some out of chair mobility can use to ask for the facilities/access they need. A slightly different one that I can use that people understand means I’m an “all wheelchair, all the time” sort of wheelie and that’s the level of access I need.

After a couple of weeks of thought however I’ve not come up with any new terms.

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.

>Don’t Look Back In Anger

>I went for my wheelchair assessment on Wednesday.  And it went really well.  The details and all that are for another entry as I’d like for that to be a positive entry. For now lets just say that I’m trialling a new seating configuration and the question of whether I need a new chair as well is on the backburner at present.  So far I like my new seating but I think there maybe a few niggles which need ironing out in the long run.

The thing is though I can’t help feeling a little frustrated and even angry.  I was assessed there in 2009 and I told them certain problems I am having.  Problems which the new seating I’ve just received is hoped will help with.  In 2009 however I had to really fight and justify to get what I did.  And then on the day I went for it to be fitted the therapist commented that I was tipping to one side and not sat even (which was something I had told them about before that).  The response was to get me standing and rearranged and then sit me down again.  I was told I’d need to be care to make sure I did that when I got in the chair and sent on my merry way.

The thing is though I do so many transfers in a day (I tried to count one day but couldn’t keep track) that I can’t always remember to do that.  And if I’m tired or ill it goes out the window.  Plus even within my chair I can’t keep my body in that correct position.

When I went to see my physio for the first time in July she commented on my position within my chair and said it was the cause of a lot of my back pain.  Something she asked me was why I’d not gone back to wheelchair services to tell them and ask for help.  The consultant in spasticity clinic commented on the same thing.  I gave them both the same answer – I hadn’t seen any need or point in it as it had been like that from the day I’d got it.

I’m hopeful that the problems I’m having can be resolved for the most part and I’m very pleased with recent events.  But part of me is looking at how things have been handled now and comparing them with what happened before.  And feeling a little bit angry and frustrated about it and about two years of pain etc.

There is little point to it I know and I’m trying to keep the Oasis lyric in mind and let it go.  It’s just not as easy as I’d like.  I have a friend who tells me he doesn’t let things bother him and just gets on with them.  I wish I could do that or that I could learn too.  But he can’t explain how he does it, he just does.  And actually I think sometimes you’ve gotta take the bad with the good.

Don’t look back in anger,
I heard you say
At least not today