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 don’t always go to plan

Yesterday I found myself having to go somewhere that I had never been before.  I always get a bit nervous about doing this, especially if I’m on my own, for obvious reasons. I decided to take the train because, although I getting used to taking the bus without help, I still find the choo choo much easier to handle. I booked my assistance in advance (as advised) so I was optimistic that things would run smoothly from a public transport point of view at least.

Despite being nervous, with the help of station staff and taxi drivers, I got to my appointment on time with very little stress and without getting too cold or wet, which is always nice. I think the meeting went well too, so I was feeling fairly pleased and wondered why I’d been awake half the night worrying.

After my appointment, I knew I had a bit of time before my train back home again so I thought  I’d brave walking back to the station rather than getting another taxi. I wanted to get some exercise anyway.

That was around the time it started to rain. Not too much, but enough to make the idea that I might get lost on the way seem even less appealing than it would do normally, so I decided I’d make things easier for myself and just take a cab.

It arrived. My walking frame Martha fit into the boot, albeit with a bit of persuasion.

“Where to, Love” the cabbie asked.

“The train station, please” I replied, thinking it would all be plain sailing from here. Little did I know that the area I was in for my meetings had two nearby train stations so I didn’t bother to specify which one I meant, because I thought there was only one and it would be obvious where I wanted to go.

I just so happened to be closest to the one that I didn’t want to be at, but because I didn’t tell the driver I wanted to be at ‘Station X’, because I thought that he’d know where I wanted to be because the place where my appointment was at also had the place “X” as part of its name. However, station “Y”, where he took me, must have been closer to where I was, because that was where I found myself getting dropped off. Only silly me didn’t realise straight away, not being from the area and all.

Yes, I ended up in the wrong place. Away from where I had already booked my assistance, only because I didn’t know either of the stations I didn’t realise until he had already driven away.

At this point I really couldn’t be more grateful to all the staff who helped me that afternoon. Not  only was I somewhere else I’d never been before, but the station was also being operated by staff from a different rail company to the one I had booked my travel assistance with.

Once upon a time, this would have thrown me into complete meltdown, but I stayed calm and wondered over to the assistance desk where I relayed the story to the nice person behind booking office, even though I was still a little confused as to how the driver and I had managed to get so mixed up.

He was amazingly helpful and rang the other train company, explained the story and offered to put me on the next train that would get me to where I needed to be. They agreed to cancel the help I had arranged for the other place, and informed the staff at the station I was going to that I’d be coming in on another line, at an earlier time than expected.

That sorted, I was helped onto the train, and the people working at the station I was going to still managed to fit me into their schedule to help me get my connecting train home again. Now that I got through it all safely I find it quite funny.

I’ve learned a lot from this experience, and it was quite a confidence boost for me that I didn’t panic. I’m actually quite tempted to write to both companies involved to praise them for their customer service and thank the staff involved for going the extra mile, but I don’t know any names so it probably wouldn’t make any sense to whoever ended up reading it.

But thank you to all who helped me out yesterday to make sure I got home again in time for dinner. I couldn’t have done it without you.

 

 

 

 

View from a wheelchair

Usually when I’m just popping down to the local shops I take my walking frame Martha instead of my wheelchair. It’s not exactly a large area and it’s fairly flat (although there are a few cobbles) so I can usually manage to walk around. Granted, my friends and I will usually pay a visit to one of the little cafés for a cuppa and a cheeky slice of cake so we can sit down, but somehow I don’t think that has anything to do with me not being able to walk as far as them.

Last week though, for various reasons, I went there with the wheelchair and left Martha behind, and I was amazed at just how strange it felt. I’ve had Cerebral Palsy all my life and have had a wheelchair since I was 12; so although I spend most of my time using a walking frame, using a chair sometimes isn’t  anything new. I still take it on my trips further afield and to my boyfriend’s house, given that he lives up two rather large hills which are struggle for me on a good day, let alone a not-so-good one.

Yet, that day in town, things felt a bit alien for the first hour or so. Everything seemed far higher up that I remembered and I felt really small, even though this would all feel completely normal and natural if I were going somewhere else that I would usually need to use my wheelchair. The thing that shocked me most of all was how much harder it was at first for me to hear what my friends were saying, because I’m used to being stood up next to them.

All this got me think about how I see the world differently depending on which set of wheels I’ve opted to use on any given day, and I did wonder if I perhaps take the fact I use Martha so often for granted, although, admittedly, it has taken a long time (and a lot of hard work) to get there. That’s a post for another time, though.

The difference in my height sitting in the wheelchair and me being stood up is probably quite small because I have to use a booster cushion, but it was still enough for me to notice because I’m just not used to using it in my local town centre anymore. Then, someone almost landed on my knee because they weren’t paying attention to where they were going. That hasn’t happened for a while.

Maybe I should spray paint my wheelchair bright blue too?

Hmmm…

My Smurfette Wheatbag

My Smurfette Wheatbag
My Smurfette Wheatbag

So I thought I try and raise a smile this Friday so here goes.

I decided that I’d try do this by posting a picture of my Smurfette Wheat bag, mostly because I think it’s actually quite cute. Yes, I know I’m 22, but in my opinion it’s fine to always carry a torch for those TV shows and characters you loved to watch before school while you were chompping down your Coco Pops (other breakfast cereals are avaliable).

I actually though I’d lost this one somewhere in and amongst the other army of wheat bags that my family seem to own, I always did like this one because it’s one of the smaller one because it smells of vanillia, which makes a nice change from all the other lavender scented ones that we have.

Have a nice weekend guys,

Nic

Change is in the air

Well, today I’m feeling really quite positive and motivated, which is nice. I think that it could have something to do the think fact that my room has been recently redecorated, and sometimes I think a change like this can do us all some good.

I’m quite excited because I’ve got a new wardrobe which  is lower down that my old one was so that it’s easier for me to get my clothes on and off the rails without almost falling over with the effort, or simply giving up and throwing everything into a pile at the bottom. The latter is what happened far too often.

There’s also a nice, new comfy bed. It’s much bigger than my last one, which will give me even more room to practice being a starfish at night, oh and it will make it easier for my mum to do my physio on it, but I’m far more excited about having more room to sprawl out in if I’m honest. I’m half in love with it already because I went to sleep with a very achy back last night and when I woke up it was as good as gone!

In my spare time,  (AKA when I’m not frantically job hunting),I do a lot of fiction writing as well as working on my blog. Usually as I do it I always hope that one day other people will read it and enjoy it, but I never expect that to happen. Today though, as I sit here in the writing cocoon that I have constructed for myself, tapping away and the keyboard and listening to Paramore, I’m starting to feel like maybe at some point they will. Not just yet, but it feels possible. We’ll see.

The extra effort that I’m supposed to be making with physio has actually got off to a pretty good start. I know it’s only been two days since I wrote the post declaring that I was going to try really hard so I shouldn’t get too excited, but it all helps, right? So far I’ve only made a few small changes, but hopefully they will all combine together to have a big impact on me for the better.

Doing the “Make Sure I’m Standing Up Straight Dance”

A couple of weeks ago, while I was busy doing my Surgery Diaries set of posts marking the six-year anniversary of my operations, the physio I had been seeing over the last few months decided that she was happy enough with my progress that I didn’t need to see her anymore, until my next set of problems arises, that is.

I’d gone originally because the backs of my knees had decided that they wanted to give me some grief after we’d had the kind of winter that I spent yesterday’s post complaining about. My muscles and I have a mutual hatred of the cold, as you all know by now.

So, back to the physio I went to try and nip it in the bud before it got any worse and she did all the right stretches and gave me some exercises that would fix it. I was amazed at the fact that I could do them all within the space of about five minutes before I’d even got out bed in a morning! (They were lying down exercises, I wasn’t being lazy) . I found that because there was someone there watching my progress who would be able to tell if I hadn’t done my homework, I actually did them.

As well as this, we worked on trying to improve the way that I stood to improve my walking and posture generally. It was really quite funny at first. As she tried to help me stand straight to show me what it would look (and feel) like, my limbs pretty much decided that they would what they wanted and not listen to anyone else. As soon as my knees were put right, my already aligned shoulders would go back to how they felt most comfortable, then my hips would follow their lead and we’d have to start all over again. Eventually though, the physio won and I was standing tall and straight. It felt really odd, like I was stood curled up in a ball, but I could see from the mirror that I wasn’t. It felt really comfortable and made me ache quite a bit.

After a few weeks (and lots of practice) I’ve managed to get to the point where I can just about do it for myself as long as I’m holding on to something. It still takes a while to ‘stack’ (they called it stacking) my head, shoulders, hips, knees, and feet all at once, but as long as I’m patient I can do it! For now I’m working on doing to for short bursts while I’m stood talking to people on my walking frame. I’d love to know what it looks like to others while I stand there, doing a sort of frustrated dance type thing that it takes to get everything lined up properly so I’m standing straight. I have now decided that I’m personally going to start calling this process the Make Sure I’m Standing Up Straight Dance, mostly for my own amusement.