Tag: Cerebral Palsy

Customising my callipers

My callipers
My callipers

For a while now I have been toying with the idea of customising my callipers. It’s not that I don’t like them the way they are or that I’m ashamed to wear them or anything I just think they look a bit…well, dull. I never bother to hide them under my jeans and just wear them on the outside of them in plain sight. When I first got them I was still using my old kaye walker Betsy which was silver, but now that I have Martha in all her blue glory, I think they could do with jazzing up a bit.

When I used to wear AFO leg splints I had them in all kinds of varieties from swirly blue patterns, to butterflies and Tweety Pie.  My first pair of leg gaiters that I used to sleep in at night had the 100 Acre Wood and Winnie the Pooh.

My walking frames too have not been exempt coming in a range of colours, some of them being given names and sometimes having little mementos from holidays and various events like ribbons.

I know that not everything I use over the years and look interesting but that doesn’t mean that I can’t do it for myself. The thing is, now that I’m getting older I’m not really sure how to go about doing it. Now that I’m looking for work I don’t think it would be very acceptable for me to cover them in stickers or glitter anymore.

I was thinking that maybe I could paint them but then I have to decide on a colour. I could paint them black so that they would go with anything, but then purple in my favourite colour but I’m not sure if it would be frowned upon.

I may not end up customising them at all but it’s something that I would quite like to do if I can find a good and simple way of doing it.

If you have an idea or opinions of if and how I could do it, let me know. If you think it’s a bad idea, tell me that too.

It’s not all it’s cracked up to be…

When I have to explain to people – especially young kids that being in a wheelchair isn’t as fun as it looks it can be tough, especially if the child is really young. Of course the idea of being able to sit down all day would seem like bliss to some people, but that doesn’t last and before too long most of us find ourselves looking for something to do and an excuse to move around a little. Not all people who use wheelchairs can choose just to get up and wonder around whenever they please, some can’t do that or would find it difficult. The thing that I find hard is how to explain this to children and young adults without sounding like I’m A) telling them off or B) trying to make them feel bad. It’s even harder when they actually use the phrase “I wish I was in a wheelchair”. I know that they can’t help it or don’t understand the true implications of what it means.

Usually I point out that there are ‘good points’ or ‘things that are fun’ about being a wheelchair user like getting to go really fast down hills, being able to help people carry their shopping by putting it on my knee while they push me or not having to worry about finding a seat when I’m getting a bit tired and need a rest.

Then, I have to try and explain the other side of it all like, if they were in a wheelchair they might not be able to do all the things that they like to do. They would be able to watch their friends go ice skating or rollerblading and they could have fun watching and sharing jokes with their mates, but they might go be able to put on a pair of skates and do the skating/rollerblading part.

In my opinion, I’m very fortunate because although I am a wheelchair user I don’t have to use my chair very often and instead use Martha as much as I possibly can. I’m not ashamed of my wheelchair and I’m more than grateful for having it on my bad days and days when I know that I’m going  to be walking around a lot. Sometimes I’ll get out of it and push it along in front of me if I feel like stretching my legs but I find this quite frustrating because I can’t control it very well being in front of it and I can’t get it across a road.

If I know that I need to give Martha or myself a day off then I will take my chair, I have no problem with that, but there are good and bad points to everything.

Things I am good at

There are times when I feel that I spend most of my posts on this blog wittering about things that I can’t do very well or things that I find difficult. Not today. Today the sun is out (at last) so I’m feeling happy and I have decided that I will talk about some of the things that I’m good at.

I tend to have a hard time accepting that there are things I can do, and do occasionally do well. I’m usually always first in line to put myself down about the smallest things and I know that is an attitude that won’t get me very far in life and that needs to change. So I’m going to start right here, right now by listing some things that I feel are my strengths.

Ready? Let’s go:

  • Talking: Everyone who knows me will tell you straight away that I can talk the hind legs off a donkey. I love meeting people and hearing their stories. It’s one of the many reasons that I decided to study journalism.
  • Listening
  • Writing
  • Reading
  • Making tea  I seem to spend most of my time drinking tea these days so I would hope I make a good cuppa. Practice makes perfect, right?
  • Motivating people
  • Time keeping
  • Trying new things
  • Pointing out things I need to improve on, and accepting that everyone has something they want to be better at

As you can see, I haven’t put down any major physical activities on the list, but I’m sure there must be some, I just can’t think of what they are right now. Due to my Cerebral Palsy I find a lot of things that require lots of movement (like DYI, for example) hard, but no one can do everything. No human anyway. I might not be a professional sports woman but does it really matter when I have confidence in my abilities to do the things on the above list?

What are you good at doing?

Finding a hobby

Over the years I’ve had many different hobbies. As a kid I was in the Brownies and Girl Guides and did the odd bit of horse riding, but it was in the last two years of school that I discovered I really enjoyed doing drama.

I chose to study the subject almost on a whim. I’d always loved doing the annual Christmas play when I was at primary school and each year I would come away from my family visit to the pantomime wishing that I could have a go too. So, while I was choosing my exam options I decided that I would choose to do something purely for the enjoyment, as well as some of the things that would help me start a career in the media.

As it turned out, I did well in the subject, far better than I ever could have hoped. All the plays and performances that my class I put on in our drama studio I would try and do without either my walking frame or my wheelchair because there was no stage as such, just a flat, open plan floor. I’d hold on to walls and my classmates where I needed to, but for the most part, I could cope.

I decided that I’d carry this on a university and joined the Drama Society within the first week of term. I was nervous at first meeting new people. In fact, I almost chickened out and didn’t go to the first meeting because I couldn’t get there on my own and was too shy to ask if someone would be able to help me. In the end after some encouragement from others around me I made the call and was so very glad that I did because it turned out to be one of the best things I have ever done.

Everyone was far more hepful than I could have ever asked for, walking me to and from the meetings, socials and rehearsals. When I performed in plays I used my walking frame and a wheelchair and that was never a problem. I did my bit as Lady Barcknell in our performance of The Importance of Being Earnest by Oscar Wilde from my wheelchair but stood up at the end of the show. Most of the other parts I played standing up in walker and I even got to take part in a panto like I’d always wanted to do as a child.

If I was too busy to devote enough time to actually be in the shows themselves I found that I could still help out taking tickets on the door and selling refreshments so there was always something that I could do within the society one way or another.

Many of the people I met throughout my three years as a member of the group will probably never realise how much their friendship and support meant to me, and still does. They helped me in more ways than I think they could ever realise. I learned a lot from joining the society including that I should never let the Cerebral Palsy be an excuse for me not trying something new. If I don’t do it because I’m nervous or scared that would be different, but I would have missed out on so many friends and so many memories. From now on I’m going to try and be less self-conscious about the help I need, although I know that sometimes that is a lot easier said than done.

The agony of shoe shopping

My callipers
My callipers

As I’ve said before clothes shopping is hard but shoe shopping is harder. Clothes shopping I love, shoe shopping I hate. Well, actually I take that back. I love wondering around shoe shops if I’m just doing it to pass an afternoon, but I really hate trying to find some to buy.

Most of the time, I’m supposed to wear special shoes (like the ones in this photo). As you can see they have holes in the side that my callipers slot into and insoles inside them to help me walk. Sometimes I break the rules and put on something that bought myself from a normal high street store. I don’t do this very often but if the boots or my callipers have been rubbing my feet and legs it’s just nice to have a change in pressure points. I scrape my shoes along the floor when I walk too so I wear the toes out quite quickly so when I see something in a shop that’s suitable for me and fits, I often buy in bulk for “just in case” days.

Finding something to wear is a challenge though, because there’s way more types of footwear that I’m not allowed to wear than things I can. I’ve never worn a flip-flop, slip on shoes fall off me because of the way I walk, and high heels are a no-go for so many reasons. This pretty much limits me to boots and trainers. Even then I have to find ones that offer me enough support around the ankles, don’t come off at really inappropriate times and that I can actually balance in. Oh, and then there is the small matter of shoe laces. I think it’s fair to say that when it comes to hunting out that new bit of glam for my feet I have a very specific criteria.

A lot of my friends, both disabled and able-bodied, male and female, tell me that they all too have their own set of needs and I’m not alone. Some hate stilettos, others dread buying trainers and a few hate trying to find something they can wear to work.

In my head I know that I too would probably avoid anything with a heel over an inch anyway and I personally think that flip-flops look really painful on your toes, but it’s the fact that I know I can’t wear them that makes me drool over them all the more. It’s kind of how I imagine it feels to give up chocolate.

The first pair of shoes I think I remember getting that I didn’t wear with some kind of splint that I thought was special were a pair of white and silver dolly shoes that I was allowed to get for a family wedding. Because they had elastic straps going over the top we knew they’d stay on. I was really excited and spent the whole day telling anyone who’d listen about them.

My last shoe purchase this year was back in January and they were a pair of red and black trainers. I don’t wear them often because I can’t get them on by myself and I don’t want to wear them out too quickly like I do with all my others. I may not be able to buy many pairs, but I more than make up for this with my bag collection, which is huge.