Tag: Cerebral Palsy

Martha update

A couple of weeks ago I wrote a blog about my Nimbo Frame Martha being in need so some TLC after her seat became quite stiff and she developed a squeak.

I haven’t really used her since then because following that post we had a lot of rain and then I wasn’t very well so I gave her a couple of weeks much-needed rest and used my wheelchair for a while.

My Nimbo Frame Martha
My Nimbo Frame Martha

Now that we are have loads of glorious sunshine here in the UK, I asked my mum to get out the WD40 so that I could see if that made her any better and it did! Her seat now goes up and down without too much trouble and she’s stopped squealing whenever we go uphill.

I just thought you’d all like to know.

With a little help from my sister

I get lots of help from my parents when it comes to living with my Cerebral Palsy, but I get a lot of help from my younger sister too.

Sophie is a lot younger than me, she’s 12 to be exact, although if you ask her she’ll be quick to point out that she’s almost 13 and nearly a teenager. We love each other dearly, and she already towers over (much to everyone’s amusement but mine) so we all say that she is my ‘big little sister’.

From being really young she’s always been keen to pitch in and help me. I remember when she was about 3 or 4 I had a cold and a really bad sore throat that made me sound quite hoarse. I didn’t really think anything of it when she wondered into the kitchen to get some water but when she came back in she put it in my hand said “I got you this for your throat Niccy.” My heart melted a little bit.

She used to like trying to help push my wheelchair too, but that always scared me because she found it hard to go in a straight line and often bumped into things. I wasn’t very nice about and it wouldn’t let her push most of the time, which I feel really bad about now, but I was a moody teenager.

These days though she still helps just as much by carrying things up and down the stairs and helping me get my shoes on and off. She pretends to moan about it sometimes but I don’t think she minds, not really. I try make it up to her when I can by taking her to the cinema, doing face masks letting her practice hair and make-up on me (she wants to do theatrical make-up when she’s older).

I wasn’t going to write this post because I thought she’d get embarrassed, but she was the one who told me to do it. She even said that I could write whatever I wanted about her. As much as I’d love to wind her up in all the ways that big sister’s always do to their younger siblings, my blog isn’t really the right place for that so instead I’ll just say that I love her millions and do really appreciate everything that she does for me, sometimes without me even having to ask.

The simple joys of summer

As you’ve probably guessed by now, I love the summer. The light nights, the walks with friends and the ocassional BBQ, I enjoy it all. More than anything though, I look forward to the warmth.

I’ve spoken before of how much harder I find it hard to move in the cold, and how my circulation (especially my feet) can get quite badly effected. They’re often black or grey and it’s not very pleasent as I quite often get pins and needles. So, whatever the wheather you’ll usually find me in thick socks. Well, dear readers I just wanted to write a quick post to share with you one of my most simple, but greatest joys of the season.

The other night I woke up in the middle of the night feeling far too hot, only to find that when I removed my socks (yes I keep them on for bed) my feet were a wonderful shade of pink!

Even my boyfriend was amazed.

They  stayed that way while I had a wonder around to cool off a bit, which never normally happens! It wore off in the morning though, but, hey, I’ll take what I can get.

 

Forever Knowing

Believe it or not, I don’t actually remember being told I have Cerebral Palsy.

My parents were told when I was diagnosed at around the age of two, so I know that there was a time when they didn’t know that I had CP, but I don’t remember a time that I didn’t.

I’m sure there must have been an occasion when Mum and Dad sat me down and explained it all to me, but try as hard as I might, I can’t remember that conversation. Oddly enough, neither can they. It’s a strange feeling sometimes, knowing that you know something really important but not really understanding where that knowledge came from in the first place. I suppose it’s a bit like being aware that you know the answer to that crossword puzzle that you’ve been trying to do for days, but you just can’t bring the solution to the front of your mind so that you can fill in the little boxes.

The thing is, I never really remember feeling different either. At school, while all the other children sat on the carpet and story time, I was allowed to sit on a special chair, and for a long time at my primary school, I was the only person there with a walking frame. I knew that none of the other children needed these things, but I didn’t feel the odd one out at all. I needed them and everyone could see why so it didn’t matter. All these things felt normal to me in my head because I’d always used them, so when I sat in my wooden chair to listen to the teacher, it felt no different to me than sitting cross-legged on the floor did to anyone else. At home, I would run down the hill outside my house playing Tag with everyone else. If anyone never asked me what was wrong with my legs, the answer would just trip off my tongue the way that telling someone my name or age would.

Maybe that’s why none of my family remember having The Talk (The CP talk that is, not the other talk. I remember that one, believe me). Maybe we didn’t actually have one at all, maybe it was just talked about so naturally in our house that the information just sank in somewhere without me really having to be told. I don’t know if this is possible – I don’t understand psychology and the brain that way.

I guess in the end it doesn’t really matter how I bacame aware of my disability. In many ways, I personally think that I’m very lucky to have always known that I have Cerebral Palsy.

My walking frame and the beach

Summer is well underway here in the UK (apparently), and slowly my Facebook Timeline is featuring more and more pictures of my friends enjoying their holidays. Some jet off to far off places and taunt me with the photos of places I’d love to go. Others stay closer home which makes me equally jealous. It has been way too long since my last one, but that’s not the point I’m going to make here. Today, I want to talk about the beach.

Sand, it seems to me, divides people into two camps: those who love nothing more than lounging on the beach all day (and why not – you’re on holiday after all), and the people like me, who can’t stand it

I dislike sand for all the obvious reasons – it gets it your shoes, sticks to your skin after you’ve been in the sea, and blocks up the plug hole when you take a shower. However, it irritates me most of all because my walking frame just doesn’t like it. Place Martha (or any of my other frames, for that matter) on the beach and they just won’t move. The wheels simply aren’t big enough to plough through the stuff, and my wheelchair isn’t much better either. My family have figured out that if they pull it backwards on two wheels then it will move, but it’s very tiring for them so I feel really guilty, especially as the beach isn’t my favourite place to be anyway.

Then I have the option of walking along the shore, but I don’t find that great either. I can do it if I have a couple of people to hold me up, but the thing about sand is that it moves underfoot so I often end up hitting the deck anyway and getting covered in the stuff.  I don’t think I need to tell you how unappealing I find that. I still think I’d dislike beaches even if I didn’t have Cerebral Palsy because I suppose you could say they’re just not my scene, but I think that just makes me even less approve of sand.

Don’t get me wrong, I have played on the beach as a kid, and have some great memories (my personal highlight was the time that a seagull decided to follow my sister). I’ve played in the sea, built sandcastles, and collected my fair share of shells but that was a long time ago. These days, I find that I’d much rather sit by the pool with a good book (or four) and do the odd bit of swimming. The irony is I’d probably get a far better workout trying to stroll along the shore, but hey ho.