Tag: Cerebral Palsy

Preparing for winter

This year, I plan on starting to prepare for winter early. No, I don’t mean that I’m going to pretend that I’m a squirrel and bury lots of acorns and nuts in the garden; nor I am going to be like a bird and fly south for the season (although, I won’t lie, a holiday would be great right now). Ah, a girl can dream…

No, what I mean is that I’m going to try and get into some habits now that I’m hoping will stop the cold weather from having such a big impact on me this time around. I’m not a professional doctor or physiotherapist, nor do I pretend to be, so I’m not sure if making an extra effort this my physiotherapy now will make me less achy in the winter, but I figure it’s something that I should probably start doing anyway, because as I’ve said time and time again, I know I don’t do as much as I should.

The end of last year things seemed a lot worse than normal because it was far more bitter than I remember it being for a long time. When I get cold, my legs get tight and my muscles ache more than usual. I tend to spend a lot of winter using my wheelchair rather than my walking frame because it’s more comfortable that way. Plus, if we have snow, there’s just no way that the tiny front wheels on Martha will cut through it all, and I don’t want to risk slipping on any ice either. This just means trying to do as much more physio as I can at home to make up for the shortfall in exercise.

At the beginning of this year, things started bothering me enough for me to give my physiotherapist a call and make a set of appointments. I had around six spread out of the course of the next few months and she finally discharged me again a couple of weeks ago. More on that later.

So, it’s only September but there’s already a chill creeping into the air, and I’ve noticed that my legs and hips are already starting to show their dislike for it, especially first thing in the morning and the last thing at night as I’m trying to drift off to sleep. I’ve decided that if I start working hard now and paying more attention to my stretches sooner rather than later, I’ll, (hopefully), have got into the habit by the time the worst of the cold hits so having to work harder might not seem like such a chore.

Although I need the help of another person to do some of the bigger ones, there are lots of little things that I can do for myself that I’m hoping will help, like spending more time lying on my stomach for half an hour while I watch TV or read a book get a good stretch out, and it feels like my wheat bags barely have time to go cold before I’m reheating them again (I’m sat with one under my knees as I type). This is to help keep me warm as much as it is to sooth my muscles. Oh, and I’m going to have to remember to keep on to top my physio too. I’m pretty sure that will do me some good, no matter what time of year it is.

I am aware that wheatbags might not be suitable for everyone to use, or help everyone. I’m not a medical professional so I can’t offer advice on when a person might like to use one or when it might not be suitable for them. This is a reflection on how they help me personally only.

Feel free to help keep me on the straight and narrow by leaving me note in the comments section, or on Facebook and Twitter, from time to time.

Why you probably don’t want to get caught in the rain with me

I’ll admit that I’m probably not the best person to be out and about with when it’s pouring down with rain.

If I’m using my walking frame Martha I walk quite a lot slower than most of the people I hang out with, so can’t dash for cover in a hurry, and I’m pretty sure trying to move a wheelchair at speed with me sat in it isn’t the easiest thing in the world to do either. And if I just so happen to have an umbrella, my designated driver for the day usually gets hit in the face by it a few times (unintentionally, I promise.)

I know that Martha and my callipers don’t really like the wet weather all that much either, because they both tend to develop, high-pitched squeaks of protest and everyone around can hear us coming for miles. It’s bad enough when it’s just one of them, but when they both start kicking off, it gets really, really annoying.

And yet, despite all this, my dear mother has still offered to take me, along with Martha and my callipers to the shops today when it eases off a bit.

Thanks, Mum 🙂

Progress and success!

Today I have some exciting news for you all. Well, it makes me really happy, I’m not so sure about the rest of you, but I’m feeling really quite proud of my little self.

Those of you who’ve been following the blog for a while now will know that I used to have a lot of fears about taking my walking frame Martha on the bus by myself, because of access issues with getting on and off them, the amount of space she takes up while I’m on there, and my worries that there wouldn’t be enough room for her later on in the journey.

This had been a problem for me for a very long time and I was often too afraid to take the plunge to go in alone without an help because, let’s just say I’ve come across a few people being quite rude and being really quite unhelpful even I’ve had someone there with me. Thing is, I’m 22 now and I knew I had to shape up try face this sometime. So I did. It wasn’t easy. In fact, I found it really stressful. Sometimes I’d have to try really hard not to cry out of fear and relief at different times.

My mum would always ride the bus with me when I was going into town to meet my friends, then walk home again, only to walk back to town to pick me up again and take the bus home with me. As much as I appreciated her doing this, it wasn’t fair and I knew it had to stop.

Slowly, I began to feel more at ease if I timed my journeys so that they were evening ones, when the transport is quieter, but after doing I didn’t feel quite so uneasy, got excited and wrote a post about it telling you all I thought that I was maybe making some progress.

Well…

Fast-forward a couple of months and I honestly can’t remember the last time that anyone got the bus with me unless they just so happen to be heading in the same direction! I know now that if the bus gets too busy while I’m halfway through the journey I can just get off and wait for the next one if they’re regular enough and it doesn’t bother me now. Mum still walks me as far as the bus stop near my house, and meets me at it when I get back off, but I’m not going to turn having company to walk home with.

In fact, I was on a bus just yesterday and someone I’ve noticed a few times asked me if I was by myself. Not in a rude way, but in a pleasantly surprised one. I don’t know if it’s because this person recognised me too but had only ever seen me with someone else. A small, self-centred, part of me hoped that this was true and that they were, in a way, recognising my achievement without really realising.

I’d still rather take the train given the chance, but if you had told me at the start of the year that I’d feel so relaxed about buses I’d probably have laughed and said “not likely”.

This accomplishment may seem small, but I have surprised myself and managed something that I’d begun to doubt I ever could.

With that, I am happy.

The trouble with folding laundry

So, yeah, I'm not too good at folding clothes
So, yeah, I’m not too good at folding clothes

In the first few posts of my blog’s existence, I posted about having to learn ways around doing the laundry when I moved out of home to university because I found it difficult with my Cerebral Palsy, and then I wrote again about trying to take on the housework to help out more at home, but not being able to do all of it. Today, I want to talk (ok, rant) about something else that doesn’t come easily…folding my clothes and putting them away neatly.

Because this is largely a two-handed job it can get quite frustrating as my left hand doesn’t always feel like joining in with movements I’d quite like it to do. Over the years Lefty and I have had many battles of will (some of which have literally involved me snapping at it) but it’s getting stronger all the time, which is good, but folding my outfits doesn’t ever really work out the way I’d like, as I think this photo shows).

The first couple of things always go quite well, and then Lefty gets tired, or bored,   or I find something that’s an awkward shape and it’s game over. I know that I don’t do too badly but I’d like to do better. They always end up in a crumpled heap by the time I’ve got them into the draw anyway because I can’t carry the whole pile straight out in front of me with both hands with falling over. It’s a slow process because I have to take regular breaks because all the bending down that’s usually involved makes me tired, so for everything to get creased in the end anyway gets on my nerves. Now that I’m back at home, Mum usually helps me do it all, but I’d quite like to be able to do better at it so that it’s one less job for her.

I guess the reason I’m writing this post is because I’m wondering if any of you have any advice on how I could make this a bit easier and get better results?

The Surgery Dairies: walking unaided again

So guys, this is the last posts of my surgery diaries! Thank you for sticking with me.  Today I’m going to talk about finally walking unaided again, and having the metal plates taken out of my hips. Ready? Let’s go!

**

I think it was the following May after my second surgery in November 2007 that I began to walk alone again. My family and I had gone on a caravan holiday to get away for a week or so. By this point I was pretty confident with the front-walkers that I’d been using to get around the house so these came with us for inside the caravan, and I was now able to walk holding on to someone’s hand, although I was still using a wheelchair quite a bit too.

On the way back home from our trip to the seaside, my family stopped off at a motorway service station to use the facilities and get a stretch of legs. Rather than drag one of my walking aids out of the boot I’d decided to just cling onto my mum and off we went.

We wondered inside and headed towards the bathroom. As we got a little closer, she suggested I have a go at taking a couple of steps without her,

“You feel strong enough, my hand’s still here if you need it, and I won’t let you fall.”

If I’m being totally truthful, I didn’t really want to do it. I was scared and didn’t feel ready. I knew I had to do it sometime and it would make her happy so I let go.

Then it happened.

I put one foot in front of the other. I wobbled slightly, but I recovered and didn’t fall.

I put one foot in front of the other. I was doing it.

I picked a spot on the wall next to the toilets and I kept going. I didn’t stop until I was close enough to reach out my hand and touch it. I’ve never been really good at standing still on my own once I get going so I didn’t want to break the spell or risk hitting the deck.

I touched the wall.

I looked at mum, she looked at me. We grinned. We’d made it, we’d finally made it., all of us. She showered me with praise and admitted that she’d only expected one or two shaky steps before I grasped her hand again. “Me too” I told her.

We went back out to the car, and when we got close enough a took a few more to show my dad. He was happy, my sister was happy.

It was still a while before I was walking as much as I had done before the surgery, and I still carried on using extra frames for a bit, but now I’m back to only using Martha and I do even better than before.

A couple of years later in 2009 I had another operation to have the metal plates removed from my hips because they were giving my some discomfort. I was expecting it to be like my first hip surgery in August 2007 all over again, but I was up and around (not quite at full strength) with a couple of days and it didn’t take long at all before I was back to normal, which was a very nice surprise. Later than summer I packed my bags and went off to university.

No one has mentioned any more surgery since, so I’m hoping that I’m all done. For the foreseeable future at least.

**

So, there you have it, we made it to the end of my Surgery Dairies series of posts. Writing them has been more emotional than I was expecting, but I hope you’ve enjoyed them and that I’ve managed to make you laugh somewhere along the way. Thank you for sticking with me and reading them.

Having a great weekend guys, and I’ll be back with some non-surgery themed posts next week.

Nic