The Surgery Diaries

One of the questions that I dread being asked most at a job interview or on any kind of application form is the one that asks me about my biggest achievement in life so far. You see, the thing is that I always think that I should pick something that isn’t related in some way to my Cerebral Palsy, and yet I can’t help it.

When someone presses me for this piece of information my instinct always goes to one of two answers: getting through my hip operations and the one that followed where the stretched all the muscles in my legs afterwards, or the  fact that I managed to cope without the daily help of my folks when I went to uni. I know it’s wrong but I always feel like this isn’t quite what the interviewer is looking for, but to me they’re still big milestones nonetheless. I usually go for option one and tell them about the surgery.

Sometime this August, I don’t know the exact date anymore, marks six years since I had my first CP-related op at the age of 16. This was the bone bit, I was offered the operation because the way I stood at the time had caused both my kneecaps to twist inwards, so they wanted to break my hips and femurs bones so that they could be reset and face outwards again. Although I was nervous I’d agreed instantly. It would be worth all the pain that I was getting pretty much all over as a result of my posture. I knew that I wouldn’t be allowed to stand up even for six weeks after the first part and that things would still be slow going for ages after the muscle bit. It would be ages before I could walk unaided again without someone or something supporting me.  It wasn’t going to be an easy ride, we all knew that.

At the time I had prepared myself for so many things, but I didn’t realise at the time that there was so much I hadn’t considered like the fact that I’d have to move my bedroom downstairs, use a commode instead of a toilet, and that sitting up would be way too much effort in the first few days. It seems strange that I didn’t think about all of this at the time, but I threw myself into passing my school exams that were happening beforehand and decided that I’d worry about the other stuff after that.

Over the course of this month, I’ll be doing a series of posts talking about how I felt during this time, the things we did as a family to get through it. These updates might take a more serious tone that I usually try and go for when I’m writing on here, but I’ll try and keep focus on the funny things that happened too – believe me there were many- although I’m more entirely  I can share all of them here.

Are you sitting comfortably? Then tomorrow I’ll begin.

Why I prefer reading to sports

Anyone who knows me will tell you that I prefer reading to sports. I don’t know the offside rule, have no idea what the difference is between Rugby League and Rugby Union, and, even though my dad likes watching Wimbledon every year, I don’t know the first thing about tennis. This isn’t because I couldn’t play sport because of my Cerebral Palsy, it’s because I’ve yet to find something I enjoy so much that I’d choose doing that over spending my Sunday afternoons curled up with a Val McDermid novel and a cup of tea.

My parents always made sure that I knew the world of sport was open to me if I wanted it to be. My dad even sat me down and made me watch the athletics at the 1996 Paralympics on the TV when I was just five years old to show me what I could achieve if I wanted. “I’m not saying you have to do it” he said “I just want you to know that you could”.

Over the years I have tried to get on with many sports, and well, it just hasn’t happened. I decided that I hated football on the day I tried to join in with my friends and ended up tripping over the ball and falling flat on my face. Then, there was the time I tried to serve a ball in a game of tennis and fell over with the effort, and, as I’ve said before I can’t run.

Despite that, I do quite enjoy the odd game of cricket that my family used to play on holiday. I just sit in my wheelchair (it’s safer that way, trust me) and whack the ball as hard as I can to score as many runs as possible without moving until someone catches me out. It’s not the conventional way of playing but it’s my way nonetheless and I quite like that.

People often ask me if I’ve ever taken part in wheelchair basketball and the answer is no, I haven’t. The idea just doesn’t interest me (and I’m terrified of being hit in the face with the ball, truth be told) but I’d happily try any sport that caught my eye at least once. The hard part isn’t me trying something out, it’s selling the idea to me in a way that gets my attention in the first place that’s possibly the most difficult bit.

I do enjoy exercise; I just prefer the things that you don’t do in a team, so the only person I have to push and compete with is myself. I loved using the gym in high school and at university, I love going out for walks with Martha, and I can always be found on the dance floor at parties in my walking frame or wheelchair moving along to the music in any way I can. I even quite enjoy swimming even though I’m not very good. That, and I like being able to jump around in the water in a way that I can’t on land.

In the end though, I much prefer to leap into the world of a good book. I love being nosey at the other world’s that writers have created in their own head, I enjoy reading stories that I can relate to, be they fiction or none fiction, and I truly admire the way that a writer can make you feel so much emotion without ever having met you. For me, it’s hard for me to imagine loving any sport over the magic of a book, Cerebral Palsy or no Cerebral Palsy.

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 story of a girl and her wheelchair

Do you remember how I said in my first post that some days were better than others and that I sometimes need to use a wheelchair? I think if I had left the house yesterday I would have taken that with me and given Martha a day off. I knew before I even got out of bed in the morning that it was going to be one of my more awkward days when the Cerebral Palsy likes to remind me that I’m not Super Woman, but still, it wasn’t the worst.

Getting up on a Monday is always tough for anyone, but the first thing I noticed yesterday when I made the leap of faith out from under the duvet other than my usual urge to answer a call of nature was the knot of pain behind my left knee. I could tell as soon as I started walking on it that this knot was settling itself in for day so I popped the heating on (I seize up when cold) and took myself back to bed (any old excuse will do). I hoped that warming myself back up would make it go away. I was wrong. My back then decided to join in with the protest and starting aching like it usually does when I spend too long lying down and demanded that I move around. My leg, and by this point, my hip objected to this greatly. In the end I decided to give up, get up and heat myself up and wheat bag while the lot of them battled it out to see which one of them could irritate me most. I’m still not sure who won.

Although I’ve had my walking frame for as long as I can remember, I didn’t get my first wheelchair until I was 11. I refused up until that point. I can remember being in nursery school and vowing that I would never let myself have one. I even used to try sneak out into the playground without my walking frame sometimes. I never managed it obviously but excitement I got from knowing that I could try and be outside without it made the thought of a telling off afterwards worthwhile.  Yes, I am the first to admit I was a very mischievous little madam with no sense of danger back then. If I had managed it, in truth I would have probably burst into tears when the teacher and caught me, but I still like to think it would have been worth it.  I used to get up to these kinds of antics at home too when I’d launch missions to get upstairs without anyone noticing. We didn’t have handrails then so I wasn’t allowed. I’d usually only make it halfway up before I got stopped but one time I made it all the way to the top and managed to get into my Mum and Dad’s room. I was delighted and started started to look for a place to hide and surprise them later, only to be scooped up and carried back to the living room by Mum much to my disappointment.

Despite all my protests I knew deep down that when I started high school it probably wouldn’t be acceptable to take my major buggy with me anymore.

I was surprised to find that I didn’t regret my choice as much as I thought I would at the time. The chair (otherwise known as Louise) and I have had some fun times too. I still get the giggles when I think about the time one of her wheels came off while my boyfriend was pushing me down a hill (It’s okay – I wasn’t hurt so you can laugh if you want) and I decorate her in tinsel at Christmas time. It took me a long time for me to realise that getting her wasn’t a sign of deterioration like I thought it was, but a practical decision and I am proud that I managed to stop being stubborn long enough to see that.

Physiotherapy through my ages

Given that my Cerebral Palsy makes my muscles tighter than they should be I’m supposed to do a fair amount of physiotherapy to keep the stiffness at bay as much as possible.

It’s more than fair to say that my exercise regime and I have had an ever-changing relationship throughout my life. We’ve gone from loving each other to being arch enemies and back again more times than I would like to count. When I was a kid, it was the best thing ever. Most of what I needed to do could be done through playing. My appointments at the hospital felt to me like they consisted of climbing around on a big squishy play area, making things out of play-dough and the odd bit of stretching, but the pineapple juice and biscuits I got at the end more than made up for the last part.

Then, I started Primary School and realised that because I was in a mainstream school that none of my friends had to the boring stretch-y stuff, they only had to do all the playing parts so I refused to do them unless my parents made them more fun.

My mum spent hours making obstacle courses for me to run with a slide and a pot of bubbles at the end, and my dad would run them with me. I’d always win though because he was too big for the slide, but we’d share the bubbles anyway.

Being a 90s-kid I collected beanie babies and my very first one, a white and brown dog called Dippy, would be in charge of counting how many of the dull exercises I did each time by sitting in Mum’s hand. Dad and I did jigsaw puzzles and played hours of Polly Pocket to improve my fine-motor skills and give my left hand some you-will-do-what-I-tell-you training.

By the time I hit my teenage years this kind of magic wore off and I just plain refused to do any. This is something that I still regret to this day because I can’t help but think of how I could be even better than I am now if I’d put all the effort I put in these days while I was still growing.

When I was a kid I had a physio come out to see me once a week but now that I’m grown up and boring I only see someone  whenever I get enough pain to feel like I need it. I look forward to these times of year even if there is usually a fair bit of discomfort that comes with it. Now that I’m old enough to know how lucky I am to still get access to this service I try to grab the chance with both hands, even if the grip with my left one is a bit suck-y. I’m at this stage again (the culprit this time is my left knee). I now have a new list of things to do I don’t mind it because at least I know that I’m still trying to help myself keep walking for that bit longer every time I do. The tasks may not be as fun anymore, but, as far as I’m concerned, you’re never too old for juice and biscuits after all your hard work.