You Know You’ve Got CP When…

…it takes more than 10 years to find a way of you accessing wheelchair accessible scales.

… four months to get an appt after you hear about the service and start trying to get referred (which only took about three weeks)

…and less than 15 minutes for them to set up the scales, weigh you, weigh your wheelchair without you in it and pack up again.

After all that time and fight and failed attempts, it was a little bit of an anticlimax!

You Know You’ve Got CP When…

…you don’t know whether to post an “argh terrible disaster it’s all going wrong crisis.” status update or a “oh wow this just happened I rock” status update – and the two things relate to different parts of the same incident.

So it was something like 11:30pm last night. I’m on the computer and beginning to think about bed but I’m waiting for something on here to finish. I decided to leave it on and go to the loo, start getting sorted.  I’m in the hall, almost to the bathroom when something happened to my manual chair and not only wasn’t I moving but it had dropped in one corner and I was half in and half out the chair.

My powerchair is also in the hall so I try a couple of times to get myself up but I can’t. I have to ring my parents. My Dad answers and it turns out I’ve woken him up. He comes down and lets himself in and I’m really surprised that I didn’t fall out in the ten minutes it took him to get up and get here. I’m sore from having my leg in a position it doesn’t like and that triggered a ton of clonus (which I rarely have any more). Whilst I was waiting for him I’ve had a better look at my chair and I think one of the castors has snapped all the way off as it’s in a really wrong position.*

Dad tries to help me up and can’t. I say I think I’m going to have to get on the floor but he tells me no because he won’t be able to get me off the floor and we’ll have to call an ambulance. He folds my walker and manages to get it round in front of me but even with that I can’t stand – it’s too low with the way it’s fallen and I’m slipping more and more forward (and out) with every attempt.  Can’t bring me my powerchair to try to get into as it’s behind me and my hall isn’t wide enough to get it past.

It’s gonna have to be the floor. Which we’re both thinking means a call to 999.

I did a semi controlled fall to the floor. Dad grabbed my arm to help me control it as much as possible which is probably the only reason I didn’t hit my head as I suspect I don’t have enough control of my trunk otherwise.

Dad moved my manual out of the way and I started moving towards my powerchair. If my last proper fall is anything to go on I am getting a visit from the paramedics but my fixing this myself needs one proper attempt first.

I can’t crawl but I can move myself by doing a sort of rocking from side to side slither on my tummy (it’s not commando crawling)

I’m moving. This is good.

I get myself up on my knees on my first attempt leaning on the powerchair. This is even better.

Then I have a few moments knelt there trying to figure out what’s the best way of doing this. Pressing down on my cushion was my first thought but didn’t feel right.

I’m levering myself up. I’m getting more and more up and convinced that I’m going to get so far and lose it and crash down. So far I’m not really injured and I know when I do crash down it’s going to hurt. But I need to attempt this.

Only it ended with me up and twisting round and into the powerchair.

Neither Dad or I are quite sure how that happened (my last fall I was on the floor for over two hours and it took 2 people to get me up. I was covered in bruises for days after from both the fall and my failed attempts to get up).  Mum told me this morning that Dad went home and told her “she just got herself up.” She was also shocked.

I’m sat there and I’m shaky and full of adrenaline and tears and panic because that moment when you go from fine and moving to stranded and about to fall is scary as shit.  This is something that actually I need to write more about at another time.  And I feel bad because I woke my Dad.

But at the same time there’s another part of me that’s sitting there thinking “holy shit I just did a floor transfer.” and kinda wanting to grin and shout from the rooftops that I did it.  (I suspect adrenaline had a role in that and I may not be as able if it wasn’t an emergency)

*It turned out to be really bent rather than snapped. This was taken after Dad straightened it a little. the very badly bent out of shape castor on my manual wheelchair

You Know You Have CP When…

… you arrive at CAB, your supervisor lets you in and says “uh, Emma, you’ve got something pink on your footplate.” and offers to pick it up for you.

And before you even see what it is you know it’s a pair of knickers. And just lamely say “it’s alright, they’re clean.” while tucking them in your handbag. And then giggle and tell your other colleague. Because why the hell not?

In my defence my powerchair lives in front of the dryer and I’d gotten in it then swung round and fished for a fleece out of the dryer right before leaving the house.

But it’s not much of an excuse given that over the years I’ve

had a neighbour chase down the road to tell me I had a bra hanging off the back of my chair.

had another CAB colleague find a tea towel tucked on top of my batteries

Gone in to see the practice nurse to have her point out a scarf I didn’t know about on my chair

And had so many knicker related wheelchair incidents (including one where I had a pair stuck in my wheel and my friend had to borrow some scissors in Sainsburys coffee shop to cut them out) that my mum knew this one involved a pair before I even got to that point in the story.

I’d like to think that this is the last “oh, knickers!” moment I’ll have with my powerchair.  But then I am trying to be more realistic this year. And I know it won’t be.


You Know You’ve Got CP When…

…you get the sort of “reasonable adjustmemt”  or “making it easier for our disabled customers” type treatment you’d never have dreamed was possible or thought to ask for. So much so you’re almost scared to say yes to it.


I got to Reading yesterday and one of the assisted travel guys got me off the train from Didcot, walked with me across the station and got me on to the train to Waterloo.  The guard came over and asked where I was travelling to saying “don’t worry if they aren’t right there with the ramp at Waterloo, I’ll come and check on you.”

Then there was an automated announcement “can the guard contact the driver” and he did from a thing right by the wheelchair space I was in.  There was a problem with the track right outside Reading and we would be delayed.

This went on for a while and I was just waiting and texting the friend who I was meeting in London that I’d be a bit late and what have you.  The train that had gone out before mine came back and we kept waiting. It was getting on for half an hour late and I was hearing all the people complaining about how little time it was giving them to get to their final destinations and how they’d be late and just glad that I travel with a lot of spare time.

Then the guard came back over to me and said it looked like trains would get moving again soon but that the one I was on would likely be cancelled because it was nearly time for the one after. Before I even had a chance to say anything about sorting help to get me off the train and over on to the next one (on a different platform) he added that he was trying to make special arrangements for me.

Because the train was going to Waterloo even if it was cancelled. So he’d asked if he could escort me to Waterloo on that train no matter what to save messing with ramps and the like .  I was like “What?!” and he held a finger up and said “ssh!”

Eventually it was announced it was cancelled. And he came back to me and said I was going to Waterloo on that train regardless. I asked and he said he’d stay with me (I would have been too panicky to sit by myself) so I agreed.

He went off to clear the train and we started moving. I was worrying about that but he came back after a few minutes.  I read my book, he flicked through his paper and we chatted and joked a bit.  A few places it stopped or paused and you could see people at the station looking confused to see us on the “out of service” train. We considered waving but gave it a miss.

We got to Waterloo about ten minutes quicker than the stopping time and much sooner than the passenger train everyone else took which left after ours did.

And I had a great time in London.

The journey home however was really disappointing. It wasn’t the level of service I’d come to expect from South West Trains.  There were other passengers on it and it stopped at stations other than Waterloo and Reading.

You Know You Have CP When…

…you’re glad the intercom at the doctors isn’t working (or they aren’t using it) because the click it makes when they first call always makes you jump involuntarily.

Most people probably didn’t even notice it or they did but they didn’t pay it much attention. But it’s just nice to sit still without my whole body flinching every few minutes. Particularly when feeling rubbish like I was when I was there on Thursday. The bonus of that was that I also didn’t need to try and open the door myself or find someone to help me (the receptionists usually listen out for my name and come).

And the sound of the doctors and nurses walking down, opening the door to the waiting room and calling people’s name wasn’t making me startle.

Until the doctor came down and called my name. I jumped so much she saw it from several metres away. She said “Sorry Emma”

It wasn’t her, it was CP. I don’t know if she understood that from what I said. A lot of people don’t

Seriously. If ever there was a moment when “you know you’ve got CP when” is appropriate it’s when you start off glad something’s happening because it means you aren’t startling. And then the self same thing makes you startle.

You Know You’ve Got CP When…

…whilst at a famous London landmark a child chooses your wheelchair as the thing he’s going to take holiday photos of. Sod the landmark, her chair’s got lights!*

They’re resurfacing the road/path outside my house so I headed home a different way to usual. And doing so meant I had to go in the road a tiny bit (which along with it being a bit out of the way is why I don’t normally go that way). So I put the hazard lights on my chair on. As I did so I remembered this story from a month ago and thought “how the hell did I forget to blog about this?”

Mum and I went to London for the weekend last month.  We went to see the poppies at the Tower of London. I blogged about that and shared some of the photos I took. If you only have time to read one blog entry, skip this one and go look at the pics.

I used my seat riser to put myself up a bit and see a bit better. I was creeping (it goes into a creep or crawl mode when it’s up and I move) through the crowds for a while as we looked with it still up. As well as making it easier for me to see it makes it slightly easier to get through the crowd as I’m more noticeable being on the same height as standing people.

We were stopped looking at one point and a lady next to me asked about my chair.  She seemed very impressed by the riser and how useful it is, mentioned working with some disabled children and how it would help them.  With her was a little boy probably no more than seven (but I am rubbish at guessing ages) who I think was her son.

He was also really taken with my chair. He liked the lights.  I put them on and showed him. I was chatting to his mum a little bit and taking photos of the poppies.

The little boy was also taking photos.

of my chair and it’s lights.

I was amused imagining the story of what he did on his weekend in London and the tales at school the next day.  And of the time in ten years when they find those photos and remember a day when it wasn’t a brilliant exhibition at a London landmark that he wanted to remember but the lights on a wheelchair.  Or more than likely they find the pictures and think “what the hell is that?”

Because only when you’ve got CP is a part of you what captures a child’s imagination and becomes part of their holiday snaps.

*this is what I like to imagine his thoughts on the matter were.

You Know You’ve Got CP When…

…you get really annoyed when people try to make everything that ever happens to you into a “disability thing” and assume that if you try to do something it’s got to be “because you’ve got CP.” Then you get half way through writing a blog entry about someone remembering you when you meet for the second time, months after the first time and the words “you know you’ve got CP when…” floated through your brain as it happened.

Only to stop writing and delete it when you realise that you’re doing it too.  Assuming that it happened because of CP.

It’s not (necessarily) a CP thing that she remembered me 7 months after I first did one of her mosaic workshops, thought for a moment and said “it’s Emma isn’t it?” and then later commented “didn’t you come with your mum last time?”

I wasn’t the only person returning from the first workshop (the venue hasn’t done a mosaics one in between) and she said to a couple of them “you came before.”

If I’m going to get really very annoyed with people make those assumptions I’ve got to bloody well stop doing it myself.  That was an interesting thing to realise.

And in the mean time dyeing my hair has gone from on my to do list to a lot higher priority. Because if I am going to stand out and be noticed why the hell shouldn’t I have purple hair and stand out for something I chose as well as my wheels?

You Know You’ve Got CP When…

I’ve had my hair in all sorts of lengths, styles and colours over the years.  But it’s been over two years since I last dyed it and I’ve just about grown my roots out. When people commented on my outlandish hair they’d sometimes ask if people stared. I used to joke that I dyed my hair purple or blue or pink or shocking red because people would always stare at me because of my chair so why not have my hair a crazy colour and give them something to stare at.  Putting it on my terms rather than theirs.  The last time I dyed my hair purple (not the last time I dyed my hair, that was a mahogany colour) was in 2011.  It was the night before I went for serial casting and I described it as a “coping strategy.” when asked about it.  I have unused bottles of dye in my bathroom in a variety of colours (at least four) because I keep buying the dye but not getting around to using it.  One day I will dye my hair again and it’ll probably be soon.  But soon doesn’t seem to have arrived just yet.

I’ve had my hair cropped short a couple of times, it’s been long several times and I’ve had a lot of short and long bobs.  I seemed to have spent years rocking the varient on a bob look. I was growing my hair for a long while, mostly because I liked the idea of having it up in a fancy style for my brother’s wedding.  His wedding was almost a year ago and my hair is still long.  I don’t really have any plans to get it cut short or into a different style anytime soon.  Part of me would like to get it cut properly short again.  But there are many reasons why I’ve decided against that.  Which mostly boil down to the upkeep of it.  It’s much harder to keep short hair looking good as it is long hair.  Plus, I like my long hair and being able to do different stuff with it.  This is probably the longest I’ve had my hair as an adult but I did have it about the same length for a while when I was at uni.

On Thursday I went to get my hair trimmed.  I’ve been getting it trimmed every two or three months for the last year or so.  I wouldn’t say I’m growing my hair any more because it’s really long now.  But I just go and ask them to trim it and stick the layers back in to give it shape.  At the same time I have been wondering vaguely about just stopping getting it cut for six months or so – my sister hasn’t had her hair cut for something like over a year and it doesn’t look like it’s harmed her any.  I’ve not made any decisions yet but was definite that a cut was required because if I’m keeping it this length it needed it and if I’m not how could I say “I haven’t had my hair cut for six months/a year/whatever” when I couldn’t have told you if it was January or February when it was last cut?

I go to the local drop in hairdressers and as she was brushing my hair ready to cut it I kept feeling her accidentally but gently knock the push handles on my powerchair.  Several times.  Because, it seems my hair is so long now that’s roughly where the ends of it are level with.  Having long hair already causes a stupidly minor wheelchair issue in that the odd bits of hair that shed tend to congregate and wrap around my castors. but it seems I have something else to consider when thinking about whether to let my hair get any longer or keep it like this or what to do.

I’m totally bemused by this.  It’s a wheelchair issue I never expected to have.  And well, you know you’ve got CP when your wheelchair suddenly plays a role in hair style choices.

You Know You’ve Got CP When…

Went to get my blood pressure checked (normal and I suspect I’ve now had “white coat hypertension” added to my records given how very very high it was when I saw a new to me GP last week) and have some blood taken. The results of the bloods came back a few days later as “normal” which isn’t the most reassuring thing ever as I’d rather be told what they actually are along with the fact they’re normal. But that’s something to take up with the GP at a later date rather than the receptionist giving me the results.

Anyway I was talking to the healthcare assistant about the fact that years ago I was told by one of the nurses there not to let anyone try and take blood from my arms because my veins were buried and they wouldn’t be able to do it but the last twice they’ve drawn it first time from my arm.  I find it weird that for so long no one could get it out my arms and most wouldn’t even try (and then the nurse told me that and I stopped letting them try unless they’d tried and failed in my hands) but now suddenly they can again.

She wondered if I’ve upped my fluids or lost any weight?  So I was explaining that I have been trying to eat healthier and more sensibly (and to be honest not doing great at that lately but I didn’t tell her that) but that it was proving so hard for me to be weighed and causing so many issues I’ve decided not to focus on that any more.  I used the example of the NHS specialist weightloss service I went to a while ago and how they couldn’t cope with someone of my level of disability and just accused me of letting my disability stop me.

Immediately the healthcare assistant went “no! you don’t let your disability stop you Emma, you’re not sitting on your bum all day…”

And I went “well I am sitting on my bum all day…” and laughed

She went on to say that she meant I don’t just hang around at home doing nothing but I’m out and about all the time at CAB and other things.

I knew that’s what she meant but the way she phrased it originally just tickled me. One of those accidental things that able bodied people say that I laugh about when I point out to them but point out nonetheless because it’s a bit of a silly thing to say to a wheelchair user.

And then as I made my home I thought about the fact that it’s such a “wheelchair user” thing to say – to most people what she said would have been just one of those things but to me it was worthy of comment and kinda funny.

you know you’ve got CP when…

You Know You’ve Got CP When…

…your mum comes round to help you do a few jobs and instead of getting her to help with your quest to declutter like she has the last few times she’s been here you have to ask her to brush your hair. Then you have to append this with the fact that this is the most important job for the day and it doesn’t matter if nothing else gets done while she’s there. And then she takes the brush and looks at your hair and declares that it’s so bad it might actually take all the time she’s got to spend with your to sort it.

Because I can and do brush my own hair and tie it back and put it up and such like.  But when its long like this I find sometimes it really really snarls up and then I can’t manage to completely de-birds nest it.  Since I bought a tangle teezer a couple of years ago that’s been much less of a problem (so much so I now have two regular tangle teezers, and one of their new shower ones).  But I still periodically need someone else to do it.

And, for the record, it was pretty bad and it did take a while.  But she also had time to pick up all the paperwork I’d already picked up and then knocked back onto the floor with a bunch of other stuff that hadn’t originally been on the floor before she came.  And she emptied my bins and wiped out the fridge where I’d upended a tub of margarine all over the inside of it.

But you really know you’ve got CP when all that’s helpful and useful and you’re grateful.  But the thing that’s made the biggest difference is the fact your hair is now brushed, tangle free, and plaited.