Tag: Cerebral Palsy

Wakey wakey, achy achy

Yet again today I’m feeling grateful for the small things that make the biggest difference to my life. Yes, things like my walking frame Martha and my walk-in shower have a huge, huge impact and I couldn’t imagine not having them in my life anymore, but sometimes I think the over shadow the small things that really, really help. Today for example, I am thanking my lucky stars that my family have quite a large collection of wheat bag

I know that wheat bags might not be suitable for everyone to use, and I am not a medical professional so I cannot suggest when anyone else may want to use one, or should not use them. This post is a reflection of my personal experience with wheat bags and should not be used as a replacement for medical advice.

I’ve heard people refer to them as many different things from heat cushions to heat pillows and hotties, but they all pretty much do the same thing. You pop them in the microwave for a few minutes to warm them up (like my microwave socks) and then I can put them wherever I’m feeling stiff or sore to try and sooth the problem. Some of them even come scented like lavender or vanilla, but in the end I always think that after you’ve had them a while they start to smell like popcorn. No one else agrees with me on this point but I like the aroma and I love popcorn so I don’t really mind because it makes me happy nonetheless.

On the surface I know it sounds almost no different from using a hot water bottle, but the thing is that I can’t fill one of those up for myself (not safely anyway) so when my mum introduced me to these a few years ago it was like a revelation – I could use these whenever I wanted rather than having to wait until there was someone else around! When I went to university I forgot to pack one in my suitcase and didn’t make it all the way through the year without one. I think I did manage to hold off getting one until second term though, which I was quite impressed at. Now I’ve learned my lesson and it is the first thing I pack if I know I’ll be away from home for anything longer than about four days.

This morning when I woke up with both of my hips and my neck feeling quite stiff I didn’t really think twice about hunting one down and using it. I’m not saying that they are the best thing for everyone – we’re all different so I know that they won’t be suitable for all, but they really help me personally to feel better. Another reason I like these quite so much is that I can wrap them around my body too which I find to be an advantage if I’ve had a long day pulling Martha around and my arm and shoulder muscles start crying out for some TLC.

They come in all shapes, sizes and colours and my mum gets me a new one every Christmas or birthday. Last year she got me a Smurfette one (which I was VERY excited about – way too excited, if I’m honest) and the year before that I got a squirrel teddy that had one inside, but I love this one far too much to bring myself to take it out of the packaging.

The difficulties of eating out

Eating out is hard sometimes. Not because I’m embarrassed to eat in front of others or because I can never choose where to go, but because of my Cerebral Palsy.

As well as my legs, I also have problems moving my left arm and hand. Often, I  will know what I action I want it to do, but then it will go ahead and decide to do something different, or make the task in hand (no pun intended) much, much harder than it needs to be.

Because of this, I find it quite hard to cut my own food. I can manage soft things, like cooked potatoes and vegetables are ok, but things like pizza, chicken and steak are an entirely different story. Although I’m right-handed I have to swap and change how I hold my cutlery throughout my meal depending on whether I’m trying to cut my food or pierce it so that I can actually get it on my fork to eat.

If I’m in a pub or fast food place with my family or my boyfriend and I start to struggle I’ll ask them to help me out, but it’s not something I like to do if I’m in some swanky restaurant (which is hardly ever, to be fair). I know that I shouldn’t feel self conscious about needing help with, but sometimes I am, as much as I hate to admit it. I always try and pick something from the menu that I think I’ll be able to manage easily to avoid situations like this.

Then there is the issue of toilets. Places that serve meals are sometimes quite tight and always full of people carrying plates with things on and hot liquids so I feel under more pressure than ever to not fall over. If I can fit Martha or my wheelchair through the gaps between the tables it’s not too much of a problem. If I’m in a group, it’s okay too because I always ask someone to walk to the bathroom with me to help me doge anything that I could break or trip over. If there is just me and one other person, I often have to catch the attention of a member of staff to ask for their assistance and then leave a decent tip afterwards because I know that it can’t have been a very pleasant thing for them to do and I’m always worried that I’ve taken them away from whatever they were supposed to have been doing at the time.

For these reasons and others, when eating out I try and stick to local pubs when I’m going out for a meal. Don’t get me wrong I think that going somewhere that could be considered fancy is a nice treat sometimes, but I often spend far more time worrying about trying to eat, get around and dropping or spilling things than I probably should.

Hopefully I’ll get over this eventually.

How my eReader has helped me

My eReader
My eReader

For as long as I can remember I have been a bookworm.  As a kid my dad would spoil me on our weekly family shopping trip to town by buying me a new Mr. Men book from the market as long as I promised to read it. Needless to say, I devoured the whole thing within an hour of getting home without fail. Most of the time I’d make him read it to me the first time, just in case there were any words I didn’t know even though I knew that I was perfectly capable of reading it to myself. Every time he’s grumble about it but he’d eventually he’d give in, curl his legs round on the sofa so that there was a space the shape of a boat and tell me to get in it while he read the story. After Managing to collect all of the Mr Men Collection and half of the Little Miss Series (both written by Roger Hargreaves) I decided that I was too old for these and my parents and I started hunting down the Garden Gang books at car boot sales instead.

This love of devouring the written word has followed me throughout my life. My parents gave me £5 the day that I managed to read them a story from the newspaper aloud to them in keeping with family tradition. In many ways I think that scouring the weekend tabloids for stories  I understood (usually about soaps or famous people) could have been what sparked my interest in the news and journalism in the first place but I digress.

As a teenager I would take a huge stack of books with me on every family holiday until my bag was at the point of bursting at the seams and my school backpack was always far heavier than it needed to be under the weight of the ones that I borrowed from the library.

Eventually my mum suggested buying an eReader as my 21st birthday present to make it easier for me to carry my bags wherever I went. I first I was really against the idea, thought that it wouldn’t be like reading a proper book (which it still isn’t, in my view) but it has helped me an awful lot.

Due to my Cerebral Palsy there is hardly ever a day that goes by without something hurting or aching in some way. I find moving around had enough without trying to haul a heavy bag around with me. Now, when I’m going on a long journey, I’ll pop that in with the rest of my stuff instead of my paperback. It’s great because not only do I have to worry about running out of reading material, but I get a lot less back and shoulder pain that I would do if I was carrying books. This means I can walk further and easier than I could before. It made a huge difference too when I had to move away from home again for a few months for work, I took that with me instead so that I meant I had less packing and unpacking to worry about. I find this very difficult to do alone and it tires me out very quickly.

While it will never replace a physical book in my heart I am glad that I took my mum up on her offer to buy me one. She said she thought it might make life easier for me in the long run. What can I say? She was right again.

As always.

Making progress, maybe…

There have been a few occasions now where I’ve blogged about getting butterflies in my tummy when it comes to using the bus on my own. I’ve done a bit when I’ve not really had a choice but I always worry about being able to get my Nimbo frame Martha on and off, and there being room for my walking frame on board and a whole host of other things.  I usually try and avoid going it alone as much as possible, but I’ve been trying to make more of an effort to just get over it and get on with it so that I won’t be so nervous anymore.  Well, I have some news…

I DID IT AGAIN!!

Yup, that’s right. And this time I could have chickened out and got a taxi, but I didn’t. Sure, my friend stood and watched me get on in case there were any problems and my mum met me at the other end just to give me an extra bit of confidence, but I did the rest. Well, for the most part.

I lugged Martha up and down the ramps and negotiated her into a safe position for the ride. A nice man did help me get the frame back out of the hole I’d wedged it and myself into when I reached my stop so that I didn’t have to struggle quite so much to do it. The important thing is though that I felt able to do it for myself, I just didn’t want to offend the guy by throwing his kindness back in his face, and, I’ll be honest, he did it far faster than I could’ve done.

The thing that surprised me most of all though wasn’t the fact that I achieved what I set out to do (get home in one piece), it was that those butterflies didn’t kick up anywhere near as much as they usually do. I’m not sure if that was because I travelled at a time of day when people weren’t trying to get their kids to and from school and most shoppers had already gone home for the day, or if it was simply down to the fact that I’m slowly getting more comfortable with getting the bus like I am already am with the train.

I don’t know about you guys, but I’m seriously hoping it’s the latter.

Dancing with myself

In case you haven’t guessed by now, I love to dance. I’ll do it anywhere; at a family wedding in my room alone or in the middle of a park. If I’m out in public most of the time I do it sitting down in my wheelchair so that I don’t fall over or get knocked over by other people around me. If I’m somewhere that’s quite quiet I might have a go at doing it with Martha instead but that’s much harder.

If I’m in my wheelchair I sometimes attempt to roll my wheels around in time to the music but more often than not I tend to just go for moving my arms around in motions that I hope will match the music and try and avoid spotting my own reflection anywhere. I know that what I’m doing probably has no sense of rhythm to it but I like to pretend it does. Dancing with Martha is not quite as simple, I have to still hold on ad try and shuffle my feet and try and shake my shoulders at the same time. It’s not easy and I’d like to get better at it, I just need the space and time to practice.

The thing is, I’ve always loved bopping along to a good song. I’d always be begging my Mum to help me on the dance floor when I went to parties as a kid, I never even cared that I would be the only one up there. It was fun and that was all that mattered to me. It was always a part of family life when I was growing up. Mum and I would often dance around the kitchen and call it phsyio and Dad spent ages teaching me to strut my stuff to Madness songs like they do in the One Step Beyond video.

My friends often embrace my danc-y nature too. If we’re ever out and about somewhere and Rollin’ by Limp Bizket starts playing, the person closest to me will grab my chair and push me along in time to the chorus. Makes me laugh every time.

Now, I do often wonder what I must look like to people who don’t know me but I try not think about that too much and just enjoy the music. That’s what it’s all about, right?

So, what music will get you all moving today?