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.

Remembering appointments

When it comes to me and appointments relating to my Cerebral Palsy, they tend to come in spurts. I’ll go months and months without a single one, and then there’ll be a few that seem to be pretty much one after the other.

Lots of these are often made quite far in advance, sometimes  six months to a year before I actually need to attend, so keeping track of them and remembering when they are can be a bit of an interesting task.

I do all the usual tricks of sticking the letters to the fridge door, feeding them all into my phone and telling my family over and over again when they are so that things will hopefully stick it at least one person’s brain so that I won’t only just remember at the last minute and have to scramble to make travel arrangements. Some departments at my local hospital have started sending out SMS messages or phoning me to check that I still want my slot, which is a great help.

Yet, the other day I got one through the post for April 2014, (it seems so strange to type that), that I think I’ll have no problem remembering the date for.

Why? I hear you ask.

Well, the appointment falls in the first week of April, and the same day that my parents had been given as my original due date. As it happens, I came into the world in the first week of January, 14 weeks sooner than anyone expected me to.  So yeah, when I meet someone who actually was born on that day in April, or I have an appointment on that day, it tends to stick in my head quite easily. I gave myself a small smile as I read the letter and went and told my mother.

“Don’t t think I’ll forget that one anytime soon,” I said.

As it happens, my next appointment at the dentist falls the day before this one (see what I mean about them all coming at once?) Okay, so I know this one isn’t related to my disability, but the timing is quite good nonetheless.

I can’t actually remember what time I’m actually meant to be at the hospital, or the dentist for that matter, but I’ll probably start committing that to memory sometime next March.

Learning to take it easy

Believe it or not, learning to spend a few days using my wheelchair instead of my walking frame isn’t something I’m very good at.

I can hear when my body is telling me to do this; I know the signs and the feelings, I know what happens when I push myself too hard, and yet, I always try and ignore it.

I wasn’t actually planning on leaving the house yesterday. Sunday’s can be quite quiet where I live and my hips and knees weren’t feeling up to much. Then my mum and her partner told me they were going to the supermarket.

They’ll be chocolate there, I thought to myself. I’d really love something sweet right now.

I know that I could’ve just asked them to pick some up for me, but the thought of going and hunting out the best bargain for myself was just too strong.

“Can I come? I asked

“Course you can. Martha or wheelchair?”

Usually I’d say that I wanted to take my walking frame Martha before they’d even finished the question, (they always offer the choice, even though they know that I like to walk as much as possible), but that time I did something I hardly ever do. I hesitated.

The word “wheelchair” was on the tip of my tongue, that should have been a big hint to myself, but I bit it back “Martha.” I said.

“Are you sure?” They then asked why I wanted to walk and risk making my pain worse. I knew they had a point, I’d already been walking on it for the last few days, and maybe it was time for a break. I made it halfway up the stairs to get my bag before I changed my mind.

In the end, I’m glad I did because we ended up going around more than one store and they were quite busy. I got walked into at least once by someone who wasn’t looking where they were going, so it was probably for the best all round.

I found that I got to sleep much faster last night too and I feel much better today.

I guess I should let this be a lesson to myself, huh?

Letting things slip

Yesterday my mum commented that I needed to watch how I was standing when I was in the house and not using my walking frame Martha to help me get around. She said that she was concerned that I was standing slightly more bent over again and that I was starting to put my knees together which is why my knee caps twisted inwards when I was younger and I needed surgery to correct it.

As people who’ve been reading the blog a while will know, I’ve just been discharged from some physiotherapy sessions where I’d been working on learning to ‘stack’ myself properly when I’m using my walker, but when I’m at home I don’t use it around the house. It’s harder for me to pay attention to my posture when I’m in this situation because I tend to just hold myself in whatever way keeps me upright, but this isn’t necessarily the way I should be doing things.

After Mum brought the fact that I should be paying closer attention to the forefront of my mind, I started to notice that my left knee was quite achy, and that it had been for a couple of days, but I’d put this down to the extra long-sitting I’d been doing to give my legs a good stretch out. Then I noticed that she was right and that I was letting my knee twist in because it likes it that way and it’s more comfortable. Opps.

I’m not sure how long I’ve been letting my posture slip back into old habits, but I know it needs to stop ASAP otherwise there’s a risk that things will go back to how they were before my operations, which I know I don’t need to tell you is something that I don’t want to happen.

It’s harder for me to stand up straight when I’m not using Martha because she supports me on both sides and I’m just more aware of these things when I’m using her although I’m not sure why. Maybe it’s because when I’m at home I’m usually concentrating on something else like making a sandwich or getting a cup of tea.

Mum is helping by saying “stand up straight” every time I go past her and I’m trying to think about forcing my knees apart before I do anything else when I’m standing still. It’s a hard habit to break, (or is it a new habit I have to get into?),  but now that my knee is protesting me every step of the way, I’m hoping that the dull ache and a mum’s reminders will help me along the way.

World CP Day

Today, Wednesday October 2, is World CP Day. This is something that I’d never heard of before until my mum  shared something about it on Facebook at the weekend.

Each year they ask people to submit ideas to their website, either through a 60 second video or simply just doing it in writing, of things that could be invented to help people living with Cerebral Palsy and ither disabilities, which I think could also help those who help care for us too. People are then asked to vote on the ideas that they like the most. The ideas will then be reviewed by a panel and shortlisted and inventors and designers then have the option to create a design or prototype for the things that make the shortlist. Applications to create these prototyes or designs opens in January next year.

Even if you don’t want to submit an idea, I thought I’d post a link to their website on the blog today anyway, because I learned quite a lot about my disability through reading the site, and I’ve been  reading some of the ideas that have been submitted by others and I found that quite an interesting experience too.

For more information, please visit the World CP Day website, which also contains an FAQ page containing more information on the process for submitting ideas, and for anyone who wants to submit design and prototype ideas.

Feeling amazed

Over the weekend I came across what I feel has to be the most amazing disabled toilet that I’ve ever seen so I feel that I should tell you all about it.

I’ve known that this said public convenience has been in the shopping centre in question  for a while, but I’d never used it before because it sits next to two others. I’ve always used those instead because this one had the symbol for changing facilities on the door as well, and I don’t need those so I’ve always tried to leave that loo free for people who do.

However this weekend I was out with Rob. We decided to make the most of the nice sunshine and hop on a train for the day. I was in my wheelchair and when the cleaner, who is always really helpful when she spots me mooching around any of the city’s shopping centres, saw him pushing me into others, she asked us to wait while she went and got the key for the other one. She was being nice, and we didn’t want to throw this back in her face, as the saying goes, so we waited.

When we got inside we were both amazed (in a good way) at the quality of facilities inside. The room itself was at least the size of my bedroom at home, if not larger. My bedroom is pretty big, by the way.

There was a hoist too, and a changing table with a moveable folding screen for added privacy, and a large, comfortable-looking chair that could be moved around the room to the place you wanted it.

Oh, and there was also two sinks set at different heights, lots of handrails, two emergency chords that I could count, lots of bins at various heights and loads and loads of toilet roll, which is always nice.

They were lovely and clean too.

This was easily the well-equipped disabled toilet that I’ve personally ever seen. Needless to say I was one impressed lady.