Author: Nicola Golding

My name is Nic, I'm 26 and just happen to have Cerebral Palsy that I've had since birth. It mostly impacts on my legs and my left arm and so I use a walking frame. When I'm not blogging I can usually be found making YouTube videos, reading or trying to write a novel.

Things I never thought possible

Today I feel like I need some motivation to do my physio and other exercises, so I have decided to try something a little different with this post. I’m going to write a list of some of the things that I’ve managed to achieve so far in life that I used to think I might never be able to do without help, but I can now do thanks to a mixture of getting creative and hard work.

Ready?

  1. Cook Pasta
  2. Take the train on my own
  3. Take the bus on my own
  4. Walk across a coffee table without holding on to anything
  5. Open a pull door by myself while on my walking frame (providing it’s not too heavy)
  6. Being able to do some basic supermarket shopping on my own
  7. Play the Nintendo Wii using both hands
  8. Write shorthand at 70wpm

 

Now here’s another list of things I want to be able do to eventually, again probably through getting creative and even more hard work:

  1. Learn to drive
  2. Go to a music festival
  3. Figure skate (in my wheelchair)
  4. Self propel my wheelchair down a hill and not hurt myself
  5. Be able to change bed sheets
  6. Swim 100 metres (not at professional level, just to be able to do it)
  7. Play an instrument
  8. Live abroad for a bit
  9. Do a master’s degree

 

So, there you have it. I know some of these may only sound small but they make a big difference and give me something to aim for.

What have you managed to achieve that you never thought possible, what are you working towards?

The time my wheel fell off

This morning I was sitting there wondering what I was going to post about today when I got an unexpected text from my boyfriend Rob saying “Hey, you should write a blog about that time I was pushing down that hill in your wheelchair and the wheel came off.”

True story.

Yes, I thought to myself. I should, given that I wasn’t hurt so I can actually have a good giggle about it all now. So, if you’re sitting comfortably, I’ll begin.

 

I’d had the wheelchair in question about a year when it happened. When I’d gone to the appointment to pick it up, I’d been told that, unlike my old one, this posh new one had removable footplates and wheels.  Being able to take the footplates off came in handy for getting it in the car, but I didn’t want to mess around with the wheels if I could help it. I thought that might be tempting fate, so for that year, they stayed firmly in place.

Or so I thought.

Rob is a couple of years older than me so he went to university the year before me, so for the first four years of our relationship we did the long-distance thing. During his first year I was still at home finishing up my A Levels and in the school holidays, my dad agreed to drive me to see him for the weekend and that pick me up again. My dad is pretty awesome like that .

I took my wheelchair  with me because I’d never been to the city that he was living in so I didn’t know how big it was, and this all happened about five years ago when I couldn’t walk as well as I can do now. My hard work over the last few years since my surgery really is paying off, but I digress.

We’d gone out into town. We were going down a fairly small hill when I thought this seems steeper than it did yesterday and I feel a bit wobbly. I wanted to make a joke about his driving skills, but we’d only been together a few months at this point so I thought it might not go down too well.

Then I heard the clunk.

“What was that?” we both asked as I started to tip to one side and thewe noticed my wheel starting to roll away.

Oh. Guess that’s what that noise was then.

Thankfully the runaway wheel came to a stop on its own so we didn’t have to worry about losing it. I didn’t fancy having to explain that one to wheelchair services (or my mum and dad) when I got home. However, I was now teetering on one side with Rob, using all the strength to make sure that I didn’t land flat on the pavement.

We were just wondering how we were going to get ourselves out of this one when a passing couple stopped to see if we needed any help. I don’t think they finished asking the question before I said yes please.

So they helped me undo my seatbelt and get myself out of the slightly unstable chair without hurting myself, then helped keep me upright and get the wheel back on and off we all went again, all unharmed,  with a funny story that we could tell all our friends later.

Oh, and in case you’re wondering, Rob’s quite good at pushing the wheelchair really, I just like to wind him up.

More thoughts on disabled toilets

Here’s a question for you, and I’m pretty sure I’m not the only person ever to have asked it: why aren’t more disabled toilet doors automatic in the UK?

Got you thinking, haven’t I?

Okay so I know that that was technically two questions but you get my point.

I’ve posted (oh alright, I’ve ranted) in the past about some of the access issues that I have using so-called ‘accessible toilets’ but that was mostly about the lack of space stuff once you actually get into to the loo, so today I want to talk about getting into and out of the bathroom.

A lot of the doors that I come across are lightweight and use a RADAR key, which I think is great because it makes them easi(er) to open and close. I’ve added the “er” on the end there because it’s still not something that I personally would put into the “easy task” category of things that I can’t avoid doing in my day-to-day life.

The thing is, that not all of them are light-weight and there has been more than one occasion when I have almost got myself stuck in one and hurt my shoulders throwing my body weight against them to get out and had to enlist the help of passing strangers.

Getting into them is also hard for me, when I’m trying to pull the door open with a big walking that doesn’t go backwards because it has automatic breaks on the back wheels that I can shut off so I have to push really hard against that while holding on with my strong arm, try operate the door with my weak arm AND keep my balance. All of which has to be done with a full bladder, which as we all know likes to sap at your concentration to get you to listen to it.

It’s not fun.

I was complaining about this to my mum the other day following my latest almost getting stuck incident. That time, I’d been on the verge of calling my friend who was waiting for me on the other side when I managed to ram my way back out.

“You think they would all be automatic by now.” She said.

“There must be some,” I replied “Surely.”

In all my years of using disabled toilets up and down the country at various places from shopping centres, train stations, air ports, public libraries, theme parks and hospitals, to name but a few and I have never, ever seen one with an automatic door. Ever.

I’m not saying that there aren’t any, I just wish they were more common.

I’ve been carrying this thought with me for the last couple of days, until this morning my curiosity got the better of it and I decided to look it up at I found that some companies to appear to offer systems that will make a disabled toilet door automatic.

I figured that they would already be some somewhere. Am I the one one who thinks it’s sad there aren’t more?

So why not? That’s what I want to know. Surely it would make things a lot easier and a lot less stressful for so many people?

Have you ever seen one, and if so, where? Because I really would like to know.

Surprise injections and more

So it turns out that the appointment that I had on Friday wasn’t so scary after all. In fact, I’d say it went rather well.

Quite a few things happened actually. We discussed maybe trying a new kind of splint as opposed to my callipers because they blister me so much, although I have to go for more appointments with a physio and someone who deals with splints to weigh up pros and cons first so I won’t go into details about that yet.

A few suggestions were made about things that might make my life in the kitchen a little bit easier. The occupation therapist who was there took my concerns on board and is going to do some research for me and try and get hold of some equipment for me to borrow to see how well it would work for me before I buy any. Again, I’ll let you know more when I do.

And, oh yeah, they gave me some more Botox in my left leg, which was an unexpected, (nice) surprise.

I’ve had this treatment done a few times as a kid, and once again last year as an adult and every time it has worked well for me. I mentioned to the doctor who was there (the same one who gave me the injections last year) that I thought it might be worth doing some more. She agreed that it would be.

“We can do it today, if you like” she said after giving it some thought.

“Er, yeah okay.” I said, a little shocked that that was an option.

And so we did.

I wasn’t expecting it but I wasn’t about to turn it down either.

“Bet you’re glad I came with you now,” Mum giggled as she helped me roll up my jean leg and gave me her hand to squeeze. Yes, I still like to do that. When I use to have them as a child, the would numb my legs  first with what they called “magic cream”. Now that I’m all grown up I don’t get that anymore, but I don’t think Mum minded me grasping onto her too much.

I personally don’t find that these injections hurt as such, it’s more like you’re being stung in my opinion, but it’s just nice to have someone there, you know?

Now that the deed has been done, it means that the intensive stretching has to start so that we can make the most out of it. So far, I think we’re doing pretty well at keeping on top of it, but it will be a couple of weeks before we’ll be able to tell what a difference it will make.

Let’s go, go, go!

Getting butterflies

Once a year, I have an appointment at a clinic with various medical professionals, from doctors, to physiotherapists, and occupational therapists. My parents come along  for the ride too and we all discuss my progress over the last 12 months, and what we can do to make sure I keep improving in the 12 months ahead.

I’ve got butterflies in my tummy because that’s where I’ll be going tomorrow, and I always feel slightly nervous about what they might suggest. In the past there have been things like returning to using the AFO-style splints that I used to wear, to swapping these for my current callipers, and having Botulinum Toxin injected into my legs to try and make the muscles less tight. After those there is some intensive physio that I have to do to get the most out of them, but I’ve always found that they’ve worked well for me.

I’m sitting here trying to up with a list of things I want to bring up at the appointment, I have a few things already, but Mum and I are going to put our heads together and try come up with some more before we go , because we might as well ask all our questions in one go.

I’m nervous because I don’t know what (if anything) will be suggested. I always wonder if they’ll suggest some kind of treatments that I’ve never tried before. That thought always makes me feel a bit uneasy, but if they think that it will help me for the better in the long run, I will more than likely agree to it.

Wish me luck!