Tag: Cerebral Palsy

The surgery diaries: How it all began

The day I found out that I would actually need the surgery, I cried. I’m not proud of it, but I did.

It wasn’t entirely unexpected. My consultant and other doctors had been trying a series of other treatments to help me for ages, but now that I had stopped growing it was decided that it might be time to consider some operations. So, off I went for something called a gait analysis where the way I moved would be thoroughly analysed at a special clinic, after which a report would be complied suggesting what they thought would be the best course of action. After the tests, my family and I all talk of “ifs” and “maybes”, but really we all knew it was a case of “when”.

Thankfully when the results did come through, the doctor who was dealing with this part of my treatment called us at home first to deliver the news and asked us if we could attend an appointment. Like I said, I burst into tears. I felt like I’d failed for being the one that allowed my knees to twist in the first place. Then, I felt ashamed for crying because I knew that I wouldn’t be out of action for all than long, and I was already so much better off than so many others. I felt all this within the space of about a minute. Then came hugs from both my parents who told me that it was perfectly normal to feel both of these things, and that was why the doctor had let us know so that we could have some time to deal with the idea.

Like a good girl I sat and came up with a list of questions to take the appointment but really the answers wouldn’t have made a difference. I already knew that I was going to agree to whatever they thought was best for me. I couldn’t deny that my aches and pains had got worse over the last couple years. Because of how I was standing I was getting migraines that I was given pain killers for and, at the around the time the I first began meeting with the man who was to be my surgeon, I was having intensive physio on my shoulders. It wasn’t just about my legs anymore and if someone was offering me a way to make the things a bit better I was taking it.

The next couple of months passed by in a whizz of appointments and a blur of revision. I was due to take my GCSE exams (the ones you take at the end of highschool) in the summer so that had to be my main focus. In fact I didn’t really think about my operations at all for ages. Then, one day, in the middle of one of my science papers, it hit me. Oh, God, two more to go then I’m going into hospital in two weeks PANIC!!

Somehow, I still passed the exam.

If I’m honest the enormity of what I’d agreed to didn’t really hit me until I had an appointment with an occupational therapist at the hospital about getting the house ready for my new needs. There were talks of installing a ramp for my wheelchair, and providing us with a remote control bed that would go in our dining room, which would be my room for the next few months because I wouldn’t be able to get up the stairs. This also meant that I wouldn’t be able to get upstairs to use the loo either. Great. That would mean I’d be using a commode for most of the time. I’ll let  you fill in the blanks on that one yourselves.

This didn’t make me feel better.

I spent the rest of the day apologising. It was then that I realised what I’d signed my family up for too. Oddly enough, they didn’t look anywhere near as repulsed at my impending inability to reach the toilet as I did. They just wanted me to do what I thought was best.

That day, I realised just how awesome they all really are.

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.

Cooking with CP: Things that make it easier for me

Regular readers of this blog will know that my Cerebral Palsy means that I struggle with cooking. They’ll probably also be able to tell you that this frustrates me, both for myself and because I can’t make meals for my family. But, if my three years living away at university thought me anything (my actual multimedia journalism degree aside of course) I learned a couple of handy hints about making my life in the kitchen a little bit easier. Here are a few of my personal things that I couldn’t cope without.

This is a post about how the items listed below work for me personally. I cannot offer advice on or say how well they would work or how suitable they would be for others as I’m not a medical professional.

A plastic measuring jug: I know this one sounds obvious but I use it for a whole lot more than just measuring stuff out. It was a couple of weeks into my first year that one of my housemates at the time made the shocking revelation that you could cook pasta in a microwave! This was a totally alien concept to me but it made my life so much easier over the years when I realised that I could make it in this instead of in a heavy pan that I can’t lift. After that I started making soup in one too because I found it far easier to carry than a steaming hot bowl of the stuff (and I’ve had less spillages that way too).

Colanders with long handles: It wasn’t long into my pasta-making days that I realised colanders that just had handles on the side were a big no-go because I either ended up almost burning myself or spilling half of my just cooked food down the sink. For a while I got a bit creative and used a sieve as a replacement, but then my mother bought me a huge orange one for Christmas that year and I got far more excited that one person should ever do over a kitchen utensil.

An electric tin opener: I had one of these at home anyway before I left, but silly old me forgot to pack it on the day I made the trek to start my new life 60 miles up north. I’d been far too busy trying to remember other things like my textbooks, clothes, and duvets to worry about that. It’ll be okay, I thought, I’ll just buy ring-pull tins. That was about the time that I realised I didn’t have the hand strength for those and spent the first couple of weeks asking everyone to help me open my peas. Now it’s the first thing I pack. Oh, and coat hangers, I forgot those that day too.

An apple corer: I love apples but ever since I had braces as a teenager I’ve always hated having to bite into them. And of course the time I pulled a loose tooth out on one as a kid probably doesn’t help either. I couldn’t chop them until I realised that taking out the core first meant that I could just about manage to do it as long as I wasn’t fussy about the size and shape of the pieces I cut.

 

Going Framelss

Yesterday, I did something that I hardly ever do.

I left the house without my walking frame OR my wheelchair. Get me, huh?

It’s not as impressive as it sounds really. I’d been out with my walking frame Martha at the weekend and accidently left her in the roof box of my mum’s partner’s car. That he’d just so happened to take to work with him.

Neither mum nor I realised this when we arranged to go out, but she said that it wouldn’t be too much of a problem because I could either walk around holding her hand or take my wheelchair. At this point I’m sure you’re all scratching your heads and wondering why I didn’t just take my chair right? Well, I’ll tell you.

To cut a long story short, my dear mummy hurt her shoulder quite badly a couple of months ago. Although it’s on the mend now (I think, in my non-medical, not being the one in pain, opinion) but she still has some bother with it and I was worried that her trying to get my wheelchair on and off the bus might make it worse again, which wouldn’t be good for either of us.

At first I protested that we wouldn’t go at all because I didn’t want to put too much weight on her either, then she pointed out that I could use the other one (seems so obvious now) so I gave in. On the condition that I try and do as much walking without her help as possible when were in the main shopping centre and I’d just hold her and when we were on the pavement and crossing any roads because I can’t get up and down the kurbs by myself.

It’s been so long since I walked anywhere like that without holding on to something at least it was so strange. As stupid as it sounds the shopping arcade seemed bigger than it had done in years because of all the extra space around me in Martha’s absence, and it felt a bit like I was walking around in a dream.

There were a few wobbles and Mum stayed a few steps behind me in case I decided to topple over backwards, offering advice on what to do if I felt like I was going to take a tumble. “Tuck your head in and roll” was one and “maybe I should take you to a soft-play area and push you over for practice was another. She was joking about the last one, obviously. I managed to stay on my feet. In a way, I’m glad I did it but it’s not something I fancy doing again in a hurry.

In case you’re wondering, I got Martha back in the end. I’m hoping it’ll be a while before she decides to have her next sleepover.

Just gotta keep on pushing

Many of you probably know by now that in addition to dear old Martha, I also have a wheelchair that I like to call Louise.  Although we’ve got some fond memories together, she doesn’t get to leave the house anywhere near as much as my walking frame.

My chair is a self propelling one, which means that I could sit in it and push myself around if I had to. On the occasions that Louise does get to come out and play with me though, there’s usually someone else in control of her. I’m not very good at it and I’m always scared that I’ll lose control and bump into those around me. Not good.

The other day when I went to the hospital about my callipers , I had no choice but to take care of myself. There were a couple of incidents of me bumping into a few door frames but it was mostly fine. In fact, I found it much easier than the last time I tried it, and got to where I needed to be much quicker than I ever had before so kudos to me, I guess. I still don’t have the guts to try and do it outside, or down any ramps or hills by myself but it’s a start. When I got my first chair at about 11, I attempted to take on the ramp in my local Woolworths. Not only did I hurt my hands trying to slow myself down, I also realised that I couldn’t slow down – or stop – till I reached the bottom. I never tried that one again.

I know, I know; I should, right? Practice makes perfect and all that jazz, but truth is I’m not really in it that much. There’s not really enough room for me to do it in the house  but maybe next time I’m in town I should take turns with whoever is my designated driver and say that I’ll get myself around the shops if they do the scary outdoors bit?

I’m still not sure what it was about last week that seemed easier than any other time I’ve had a go could actually be thanks to Martha. She the heaviest of any of the walking frames that I’ve had before because of her seat so  I’m starting to build some muscle for the first time in my life! This makes me very happy indeed.

Maybe I should have a couple of half an hour wheeling sessions a week as best I can in the garden , just to see what happens? Maybe it could be a good thing, for the future (you never know what might happen) and for my self confidence.