Tag: CP

Back into a routine

I can’t believe it’s been a week since I last updated this blog! I feel like all the posts on here lately have been about pain and bad cerebral palsy days and my anxiety and low mood. I think it’s important for me to talk about all that stuff, but it’s nice to be able to have something more positive to tell you too.

With all of these other things going on lately I sort of fell out of the routine of writing and job hunting and spent a lot more time than I would care to admit binge-watching Netflix and drinking way more tea than normal. It was nice to take it easy, but as someone who judges how good her day has been based on her productivity levels (I know, I know), it didn’t make me as happy as you might think.

It took me a while, but I think the bad CP days are gone for now, I’ve started being able to sleep again (and at a slightly better time than 2am, too!) and most excitingly of all I’ve got myself back into the swing of writing and editing. I feel like I’m making progress on my main project.

I made a YouTube video earlier this week about the aftermath of a fall in which I banged my hips and my already bad hip. I expected it to have quite a big impact on me for a few days, but it wasn’t all that bad. Yay!

Children do the funniest things

Kids do the funniest things, don’t they?

I really admire children and the fact that they ask the questions their parents probably want to but are too afraid.

Often, when I bump into little ones in the street they’ll gaze at my walking frame in fascination, point to it and either ask me or the grown up they’re with what is and why I use it. Some of the time, the adult will tell the child to ask me for themselves when they notice that I’m grinning rather than looking irritated by their curiosity, but others get embarrassed and try and get them to walk away from me as fast as possible.

One day, much to my amusement, a toddler decided that they would use my old Kaye Walker frame Betsy as a climbing frame. If the youngster hadn’t been with an adult I would have probably been quite nervous. The adult kept trying to take the child way but he kept on coming back for another go. I just stayed very still and let them get it out of their system.  I don’t think they were old enough to know that it was wrong, and I suppose to someone who is only about two (or maybe less- I’m not good with ages)  that my walking frame probably does like a little like something that they would find in a park. It made me laugh. I’d never know a kid to do that before. The other grownup giggled nervously with me.

I’d always rather people ask me a question as long as they’re polite about the way they do it. I don’t mind people looking at the frame either. Martha is big and blue and not something a lot of people will see very often so it’s bound to catch your eye. It’s human nature especially when it comes to kids. It’s how they learn about anything in life so the issue of disability isn’t, and shouldn’t be, any different. If other adults want to know something I’m fine with that too. Chances are it won’t be the first time I’ve answered the exact same thing. How old the person is depends on what I tell them.. If it’s someone quite young who wants to know about my Cerebral Palsy I tell them that I’ve got poorly legs but don’t name my disability, and if it’s somebody older I tell them things in more detail

Once when I was very young a child walked right in front of me and asked very politely “Um, excuse me, but why have you got that?” his family looked horrified:

“Come on, it’s just like the one you’ve got a home” they scolded. I turned to them, assured them that it was okay and told him I had poorly legs. “Oh, ok then,” he said, happy enough and wondered away again. That was all it took.

Sometimes it gets a little awkward when I have to try and explain to them that being in a wheelchair isn’t as fun as it looks in their eyes , but I always try and balance it out by telling them that it comes in really handy if I’m going on a long visit so that I don’t have to try and find somewhere to sit.

Toasty toes please

As well as Cerebral Palsy I also have quite poor circulation. My feet are always a wonderful purple or grey colour (I won’t gross you all out with a photo) and the only time they look my normal skin tone is when I’ve just got out of bed or the shower. I don’t know if this is connected to my disability or not. I keep meaning to ask the physios but I always forget. It wouldn’t really matter anyway. I’d still have both at the end of the day.

My poor little toes are usually always cold so it’s a rare day that you’ll ever see me without socks, sometimes even two pairs. My friends and family love it though because I must be the only person who loves getting loads of them at Christmas.

One year my boyfriend found what I think could well be one of my favourite inventions ever. It’s so good it has to be up there with the thermos mugs that help me carry tea round the house…he got me a pair of microwavable socks! Yes, you read that right, socks that I can heat up in the microwave. How amazing is that? He was really proud of himself for finding them and I have to admit that I was pretty dang imp

My Microwavable socks
My Microwavable socks

ressed too.

Normal
0

false
false
false

EN-GB
X-NONE
X-NONE

MicrosoftInternetExplorer4

/* Style Definitions */
table.MsoNormalTable
{mso-style-name:”Table Normal”;
mso-tstyle-rowband-size:0;
mso-tstyle-colband-size:0;
mso-style-noshow:yes;
mso-style-priority:99;
mso-style-qformat:yes;
mso-style-parent:””;
mso-padding-alt:0cm 5.4pt 0cm 5.4pt;
mso-para-margin-top:0cm;
mso-para-margin-right:0cm;
mso-para-margin-bottom:10.0pt;
mso-para-margin-left:0cm;
line-height:115%;
mso-pagination:widow-orphan;
font-size:11.0pt;
font-family:”Calibri”,”sans-serif”;
mso-ascii-font-family:Calibri;
mso-ascii-theme-font:minor-latin;
mso-fareast-font-family:”Times New Roman”;
mso-fareast-theme-font:minor-fareast;
mso-hansi-font-family:Calibri;
mso-hansi-theme-font:minor-latin;}

I know that these might not be suitable for everyone to use. I am not a medical professional so I cannot suggest when anyone else should or should not use them. Therefore I can only speak of my personal experience with these mircowavable socks and the post should not be used as a replacement for medical advice.

Given that they have lavender in the bottom to make them smell all nice I can’t walk around the house in them but they are awesome when it’s snowing outside or I’ve spent too long in our stone floor kitchen. They stay warm for ages too which as far as I’m concerned is a bonus.

My hands don’t do particularly well in the winter either. My fingers often go an interesting shade of grey or extra white. This causes quite a problem when I’m out and about because it’s harder to grip my walking frame if the gloves I wear are too thick, but the thinner ones don’t protect me from the cold as well as I’d like. Often my hands end up going numb, which makes it harder to hold on to the walker anyway. Usually I just grit my teeth and wait it out until I get back inside and make myself a huge cup of tea to warm my hands up on. Strangely enough, I don’t have a problem with that.

The Betsy Chronicles

Betsy and I at my graduation
Betsy and I at my graduation

Before my blue Nimbo Frame Martha came into my life, there was Betsy. She was my silver Kaye Walker. I promised you all that I’d tell you all her story one day and now that day has finally arrived.  If you’re a bit confused and want to find out why I choose to name my walking aids, you can check out this post here. If you want to just hear more about my old one Betsy then grab some snacks, pull up a chair and I’ll tell you.

As I’ve said before, she was given to me the day before Christmas Eve in 2011 and went into retirement last month. Usually these frames last longer than that but she was given to me second hand. I didn’t mind. I got a new frame when I needed it and that was all that mattered to me. I was in my final year at university by this point was making an effort to do as much walking as possible so I made sure we had some good times before we had to go our separate ways.

I like to think of Betsy as my frame of firsts. She came with me on lots of work experience placements, was there on the first day of work at my last job and came with me when I got the bus by myself for the first time. This last one didn’t go so well. It’s safe to say that catching the bus alone is not my strong point, but that’s a story for another time.

Oh, and she will always have a special place in my heart for being the frame that I used to get across the stage at my university graduation, which for me was the most symbolical moment  of my life so far.  It was the moment that me, my family and endless physios and doctors had been working towards all my life to date. People said I wouldn’t, people said I couldn’t and others thought I was just too lazy and would rely on my folks to do it all for me forever, so I upped-sticks, moved away  and went on an adventure to prove them all wrong. In that moment, I knew I’d made it. We all made it, and Betsy was there every step (or should that be roll) of the way. For that, I will love her forever.

My new Nimbo Frame Martha
My new Nimbo Frame Martha

There are a few ways that the Kaye Walker differed from my new frame Martha, aside from the fact that she was silver and not blue. My Kaye Walker didn’t have a seat on the back. This meant that I couldn’t always sit down as much as I would have liked, but it also made the frame a lot lighter than my current one. It meant that my arms didn’t get as tired when I was using it (guess this means I should probably work out more, huh?) and that it was easier to lift it up and down kurbs, and for me to deal with every time I got the front wheel stuck in a pot hole (this happened more times that I would care to admit).

It also means that the frame is less compact and takes uo more room in the car  but it was all still worth it in my eyes. Like I’ve said before I can now take rest breaks as and when I need them, sit down if I need to take notes when carrying out interview and I’m guaranteed to have somewhere to sit. To me it’s totally worth it even if it does mean I have to grow some muscle and buy less shopping on my trips out. In the end it’s probably better for my body and (my bank balance) anyway.

The fine art of making people smile

In all honesty I was actually planning on blogging today something happened that I feel the need to tell you all about. Martha and I made some strangers smile. That is always a good thing if you ask me.

When I woke up this morning I had no plans to leave the house, but when I saw how sunny it was there was no way I could pass up my mum’s invitation to go and visit a local art gallery. We’d probably been there less than five minutes when I heard a voice ask “Can I have my car painted that colour?”

Being the nosey person that I am I turned around to see which of the paintings he was looking at and was pleasantly surprised when I saw a man by the side of me admiring my blue walking frame Martha,

“I wonder if I could have my car painted that colour?” he grinned “It’s lovely.” I nodded back at him and was just about to launch into my why-I-love-Martha so much speech when his family came and joined us and started chatting about how great they thought she was and listed all the things they like about her: the blue paint (of course), the fact that she still looks like new (give it another two weeks and I’ll have scratched all the paintwork off) and the fact that she has a seat. I couldn’t help but chuckle to myself, they’d come out to see all the brilliant work of real artists and here they were stood looking at Martha and praising her as if she were a prize winning picture. After a couple of minutes of smiling and chatting they waved us goodbye and went on to look at other things, but I was still left feeling all warm and humbled inside that I’d managed to make someone else smile. I love that.

When I was a teenager I once had a man stop me in the supermarket when I was on holiday and tell me that he “hoped his granddaughter ended up like me” because they’d just found out she was disabled and they didn’t know if she’d ever be able to walk. At the time I felt really awkward and mumbled something about the doctors telling my parents I might be able to walk around the supermarket at best so never to give up. At the time I felt guilty because I felt like I should have been able to do or say something more. It is only now I’m older that I see I probably did far more than I had realised. If this happened to me tomorrow I’d handle it better. I’d feel proud that I managed to give someone I’d never met before some hope, even if it was just for a moment. I’d feel happy that he’d had the courage to pay me the compliment. I’d like to think that he went home and gave his family hope too. It is moments like this that make me feel very humble and very grateful. That day I made a stranger smile. That day, the same stranger made me smile too.