Tag: Cerebral Palsy

My new splints

My new splints
My new splints

My serial casting pots got taken off yesterday which I was very happy about, and my new day time splints (also called AFOs) have also arrived.

I had the pots taken off yesterday morning and then went straight round to the department that deals with the splints to get them fitted.

It looks like the serial casting has helped to make my ankles less tight, which is what we wanted. I’m not entirely sure how much difference it has made, but I have an appointment with the physio in a couple of weeks so she’ll be able to give me a better idea.

When I first came out of the casts my ankles ached for quite a while afterwards but my mum and I did a bit of stretching and that has passed now, which is really quite nice.

The thing that took me by surprise the most was how strange I found it when I first put my new splints on yesterday. I had them for most of my childhood but stopped wearing them about a year ago when it was decided that we would try to see how well callipers worked for me.

Although I’m sure they work well for a lot of people, this wasn’t the case for me because I had a lot of problems with blistering. This is why we made the choice to give splints another go after we had relieved some of the tightness in my ankles by doing the serial casting.

I kind of thought that because I’d worn splints for so long before that it wouldn’t really feel odd to me, but it did. Now I just have to go through the process of bedding them in slowly a couple of hours at time until I get used to it again, which could take a while.

As I’m only on day two of the process, I’ll update you all about it a bit later on when I’ve got a bit more to say about it.

They fit inside a pair shoes that you can buy in the shops too although I have to buy them a size bigger than I would normally take without them and make sure that I get a pair that is wide enough to accommodate them.

I guess it’s time that I dug out my old collection of over-the-knee socks that I used to wear with my old ones. I find that helps to make them more comfy because it stops them sticking to the back of my legs.

I’ll let you all know how I get on.

 

Wrapping Christmas gifts

Yesterday I finally managed to finish my Christmas shopping. Well, I say I have, but I’ll probably think of something that I’ve forgotten over the next couple of days and have to get that too.

My boyfriend was a huge help and we went and got most of the things while I was in my wheelchair so that I didn’t have to battle with the crowds or try to carry everything. I bought him lunch as a thank you so I didn’t feel as bad about him having to push everything back to my house in the rain.

All that I have left to do now is buy and write cards, do wrapping, and buy decorations for my walking frame Martha. The first and last things I’m looking forward to, but I really, really suck at the wrapping gifts part.

Because  I sometimes struggle to do certain things with my left hand and arm , this is not an easy task for me. I try and do most of it only using my right hand, but it’s still tough.

I find it really hard to cut the paper, fold it all up, and hold it in place while I put sticky tape all over it. When I try to do this for myself, the paper ends up so loose that whatever is inside ends up rattling about, and there’s always so much tape on them that no one can get into it…

There have been many occasions when I’ve actually managed to get the tape in my hair instead. Getting it out again isn’t as easy as I thought it might be. I don’t recommend it.

I always amaze myself at just how much I manage to make a mess of it, because sometimes I’ll have a go at doing one or two, just to see if I’ve improved any of the last time I tried it. You’d think that I’d have started to get a bit better at it, but I don’t. My efforts seem to just get worse each time, even with using a tape dispenser, or a paper-cutter thing instead of scissors. Sometimes, I end up ripping it halfway through and have to start again.

Usually, one of my friends will kindly help me to do my boyfriends things, and he or my mum will give me a hand with the rest so that all I have to do is hold bits down and write the gift tags. Last year my sister lent a hand too.

Do any of you have any hints or tips?

The final countdown

Yep, it’s official: I’m counting down. But not to Christmas or even New Year. Nope, I’m just waiting for Tuesday, which is the day that my serial casting pots will be coming off.

Serial casting is some treatment that I’ve been undergoing for the past five weeks for my Cerebral Palsy. As my ankles are tight, they’ve been potted into a better postion, so that hopefully, when they get taken off on Tuesday, my muscles will be more relaxed. Then, I’ll be able to get my foot into the place that the casts have been holding it a lot more easily.This, in turn, should make the new splints that I’ll be getting on that day a lot more confotable for me to wear than if we hadn’t done this first.

If you want to read more about how I’ve found the process, you can read my other posts  about it here.

As excited as I am to see how well the has worked, and to get my new splints, I think the thing I’m looking forward to the most is not having to worry about getting my feet and legs wet anymore. Thankfully we have a walk in shower at home that I’ve still been able to use as long as I covered the pots with some waterproof protectors and some bin bags, but it’s just not the same. I’ll be able to go out in heavy rain without having to worry and constantly look for shelter again too. Not that I make a habit of going out when it’s pouring it down, but it’s nice to have the option, you know?

Not long now though. Almost there.

Four days to go, if you don’t count Tuesday itself. And yes, I am counting.

How much my walking frame helps me

My Nimbo Frame Martha
My Nimbo Frame Martha

Sometimes I think that I take the independence my walking frame allows me to have for granted.

I was chatting to a man in the train station the other day, and he was saying that my Nimbo frame Martha looked really good, and that the little seat on the back was a good idea.

He said that it was great how something like that could make such a big difference to someone’s life, or he assumed that they would. I told him that in my case this was very true because if I didn’t have my frame, I would find it really tough to leave the house on my own.

I wouldn’t fancy not taking my walking frame Martha out with me unless I knew that I had someone with me whose hand I could hold onto. I might be able to walk to the end of my garden, but I’m pretty sure I wouldn’t make it to the end of my road without falling flat on my face.  Any unexpected dips in the pavement always run the risk of throwing me off balance. It doesn’t take much some days. I have a knack of falling over even when there’s nothing there to trip on. I know that I couldn’t get up and down the kurbs to cross a road.

Most of the time, I don’t even stop to think about all the things that I can do with Martha in tow that I wouldn’t be able to otherwise because I’m just so busy doing them. It’s only when I have these conversations with people that I take the time to stop and think “wow, it helps me more than even I realise sometimes”.

Sometimes I feel a little guilty that I don’t always take the time to stop and appreciate the impact that the walking frame has on my life, in a good way. I never really think about it until I explain it to others. I always like telling people about how useful it is, because it always makes me feel grateful.

As I’ve mentioned before, Martha is the first walking frame that I’ve had with a little seat attached. Before she even arrived, I knew that this would be a huge advantage for me, but I couldn’t have anticipated just how much until I started using it.

I’ve used it just to take rests as and when I need them, while stood talking to people in the street. I’ve also used it on the train when there are no other seats (standing up on moving things is always a challenge, even with the frame). There have also been times that I’ve used it to rest my shopping bags on while I’ve reorganised them all because it’s easier than having to bend down all the way to the floor.

It’s safe to say that I don’t think I could go back to having a seat-less frame anymore. Well, I’d struggle with at least. It’s helped so much that I will always make a strong case for having one when I have to get new frames in the future, although I know that this might not always be possible.

I don’t ever remember not having a walking frame at any point in my life, and I really don’t know what I would do without one.

Moving slowly but I don’t mind

NB: Sorry if this post has appeared in your reader twice today, or you got an email notification that I’d updated and then  it didn’t work. I meant to save the post as a draft earlier and published it by accident when I wasn’t ready. Sorry!

Sometimes it’s the little things in life that take me the longest to do. Doing physical things at speed, walking, going shopping, getting dressed, and things like that can sometimes take me quite a while. I don’t mind though, I just make sure that I leave myself enough time to do things, even if that does mean that I have to wake up about two hours before I leave the house sometimes.

People often question why I choose to get up so early, but once I explain it kind of makes more sense.

On a day when I’m not going anywhere, or doing anything special, I’ll usually wonder around in a pair of jeans and jumper. I often find that these are the easiest things to put on because there aren’t all that many buttons involved, and I can just pull things on over my head and be done with it.

If I’m having to wear a button down shirt, this can sometimes take a lot longer (there was one time that it took fifteen minutes). I never know if any day will be like that until I start trying to do things, so I have to leave myself plenty of time. You know, just in case. Socks are usually always a pain no matter what.

And don’t even get me started on tights if I’m wearing a skirt or dress.

You know that scene in the Princess Diaries when Anne Hathaway’s character is trying to get changed in the back of car and keeps falling over? Well, that’s me, except I’m not in a car, but at home, in my own room, with everything set out in ways that I find easiest to work with.

I really dislike tights, but I still wear them because it’s worth the effort to keep my legs warm.

Anyway, once I’ve done all that, and battled with my shoes (I’m not even going to there), I have to leave the house, and have to do so way in advance because I never know how long it’s going to take me to walk places, or if there’ll be room for my walking frame on the public transport I need to take. If there isn’t, then I have to wait for the next one, which adds time to the journey. I don’t mind, as long as I get there safely in the end.

Sometimes, I set off so early that I end up getting places an hour or so early, but I don’t mind at all because I hate being late. I just always make a point of trying to have something to read in my bag and it’s all fine.

Today, I kind of had one of those days when I was trying to make a sandwich for lunch. It was a new loaf of bread that no one had started yet, so I had to struggle with that annoying little sicker on the packet and then try and reseal it. I myself I totally convinced that these things aren’t actually designed to go back on, because they never seem sticky enough, and I can never actually retie the packet tight enough to get the silly things back on anyway. That took a while. Then, I had to make three trips to the fridge to get the cheese, ham and margarine that I wanted and put them back again. In the end, around fifteen to twenty minutes later, I had my meal. I am lucky. It’s more than some people will have.

But what surprised me most of all was that, when I made the sandwich, I made it on a plate, and then stood there staring at it for a couple of seconds before I realised that I wouldn’t be able to carry it to the dining room like that so I popped it into a bowl. Yet, for those couple of seconds that I was stood there thinking to myself that something didn’t look right, I forgot that I’d find something really hard, or that if I tried to carry a sandwich without puting it into a bowl first, there would be a good chance my floor would have my food instead.

When I go to these meetings or appointments that I mentioned above, I always try and let people know that I have Cerebral Palsy before I arrive so that I can check the accessibility of the building and whatnot. Yet, sometimes I forget to do that on the first phone call or in that first e-mail, and have to get in touch again and say “by the way, I forgot to mention this before but…”

Sometimes, my parents will ask me to something that I haven’t quite managed to find a way around yet, and then say “Oh sorry Nic, I forgot then”

It still takes me by surprise that, my family, my friends and I forget sometimes, but it’s nice. It’s nice that it’s not the first thing that any of us think about. Plus, as I’ve said before on this blog many times, I wouldn’t take away my disability, even if I could.

That’s why, when I move slowly or find things hard I really don’t mind at all. Well, most of the time anyway.