Cerebral palsy & surgery

Hi guys,

Here’s a video I made talking about my surgery.

Bittersweet memories

Before I had my surgery on my hips and legs a few years ago, I also used to get a lot of pain in my shoulders too. This was caused by my posture. They hurt every day and the bones would ‘crack’ all the time which wasn’t very nice either. Some nights I couldn’t lie on one side because it was too uncomfortable. It’s not something I’d care to go through again if I’m being truthful.

At the time, my knees had rotated inwards thanks to the way I stood, to the point where they practically faced each other rather than facing outwards, so I had operations in which they broke my hips and one of the bones in my legs and reset them to correct this. Then I had another operation to lengthen all the muscles in my legs.

I’m pleased to say that after that the pain in my shoulders stopped and they haven’t really bothered me all that much since. Well, not unless I have quite a long day pulling my walking frame Martha around or decide to bring home one too many books from the library, which I hang in a carrier bag that I put over the side of Martha so that I don’t have to carry them in my handbag and get backache. I was guilty of probably taking out a stack of heavy books yesterday actually, but thankfully my dad was on hand to give me lift home so it saved my shoulders a lot of work. Thanks Dad!

But there is another reason for me writing this post today besides confessing that I am a bookworm who is often guilty of checking out more books that she can comfortably carry sometimes. Please tell me some of you have done that too and that it’s not just me!

Sometime last week I was laying on my tummy, which I personally find is a way for me to get a good stretch, because my legs and back were quite achy that day. I moved my arm to put it in a more comfortable position and I could instantly I’d done something that my shoulder wasn’t happy about because it ‘cracked’ and started aching right away.

Thankfully, the achiness is starting to subside now, but having discomfort in my shoulders again has brought back memories of how I used to be in the days before I had my surgery.

Although it hasn’t been nice to think about how much my shoulders hurt, it’s been quite nice to take some time to reflect and think about how far I’ve come over the last few years, which I think is actually further than I realise most days and definitely further than I give myself credit for.

Let’s hope it continues!

The Surgery Diaries: Getting more walking frames

So there’s just under a week left of August which means that my posts reflecting on my surgery six years ago in this month are almost over. Thanks for sticking with me so far. Today I’m going to fast forward to when I had the second operation. If you’ve missed anything so far and want to catch up, feel free to do that by clicking here.

Eventually I managed to build up my walking stamina enough to be able to do it around the house again. The problem was that the Kaye Walker frame I was using at the time was too big to fit around our house, so I was given some smaller ones. One that went in front me but didn’t have wheels so I had to pick it up to walk with, and one that did have them so I could roll. We tried crutches too, but the physio and I decided very quickly that they weren’t the right kind of walking aid for me. I felt like I was going to fall over the second I got hold of them, and apparently it showed because the colour drained from my face.

I was back in my own bedroom too by this point and was no longer sleeping in the dining room on the ground floor. Mum made dad redecorate it for me as a special treat and it was nice to be back in my own space again, if not a little strange. Being able to use the bathroom unaided was also something I will never, ever take for granted again.

One little frame stayed upstairs and we kept the other one downstairs. I was surprise how well I managed with a frame that went in front of me rather than one I pulled behind me. There were a couple of mishaps, including one where I almost lost a front tooth. Thankfully it only came slightly out of place and was fixed when Mum accidently bumped my wheelchair down the kurb a bit too hard in her rush to get me to the dentist. My jaws rattled together and somehow this managed to knock it back into the right position it had always been in. Talk about lucky. I just had to eat soft foods for a week while it healed and it was good as new. Phew!

I was starting to finally feel a little bit better about how things were starting to happen. I could see progress every day, even if it was quite small some of the time, but it was starting to happen. I could see a time when I could walk unaided again, and I’ll tell you more about that in my next post!

The Surgery Diaries: Learning not to rush it

So there’s just over a week left of August which means that my posts reflecting on my surgery six years ago in this month are almost over. Thanks for sticking with me so far. Today I’m going to fast forward to when I had the second operation. If you’ve missed anything so far and want to catch up, feel free to do that by clicking here.

Six weeks after  I had the muscles in my legs lengthened, I went back to see my surgeon who was happy for the pots to come off my feet, and for me to only have to wear my leg gaiters at night from there on in. This was an amazing feeling! It was kind of nice to be back in my own wheelchair too, I won’t lie.

One of the things that excited me most of all was the fact that I could start to try and go back to wearing jeans again, rather than all the skirts and dresses that I’d bought especially to wear over the previous couple of months. It helped me start to feel like I was getting back to my old self again, even though there was still a really long way to go.

This was the time when all the hard work of getting myself back on my feet and making the most of the surgeries that I’d been fortunate enough to have on the NHS. There were often times when I was angry and frustrated because things didn’t happen at the pace I wanted them to and I felt like I should have been making things happen right away.

I was starting to walk again now, but very slowly. I could only comfortably manage a few steps at a time and I couldn’t even imagine being able to ever do it without holding onto something ever again. If I’m being completely honest, I don’t think that the enormity of what I was going through hit me until a point a couple of weeks after my second surgery. I’d been doing some work with one of the people helping me with my recovery. I think we’d been practicing getting me used to standing still for short bursts of time to build up my stamina. I was holding on to a table for dear life, but I was doing it. I walked part-way around the table I was using (gripping it tightly, of course) and then was allowed to collapse into my wheelchair for a much needed rest. I was feeling especially frustrated because it hurt quite a lot and used up most of my energy, and the fact that this was something I could have done quite easily before I’d had my operations made it feel worse. I decided to point out how I was feeling to the person helping me, and then they said something that really made reality hit home.

This person mentioned something about learning to walk again.

Oh, Maybe that’s kind of what I was doing In a way? After all, a few months before I hadn’t been able to stand, or even crawl and now I was literally having to take things one step at a time. Dang. I hadn’t looked at it that way before. Maybe I was just being too hard on myself. My family and friends had been using similar phrases for weeks and I’d been brushing them off, refusing to believe that anything that had been happening to me over the last couple of months had been a big deal. After that I tried to keep a rational head when I was getting mad and not judge myself too harshly.

The surgery diaries: noticing my knees

Even though I had my surgery six years ago now back when I was 16, I can still remember they first time I really paid attention to knees as clear as though it were yesterday.

Before I had the operation, they had both begun to turn inwards (the left more so that the right) and were giving me a fair bit of pain in lots of parts of my body because of the way that I was standing and sitting. By then, it had got to the point where they didn’t even really face outwards when I sat down anymore either.

As silly as this possibly sounds, I don’t really remember paying all that much attention to how they now looked for the first couple of days after I’d had the work done. I must have seen them at some point but it didn’t really register. I was still in bed with an epidural block in my spine with lots of pain killers in my system. I think I noticed that they were looking better as I lay there with my legs outstretched (which was already a huge change in the right direction for Lefty already.

It hit home most of all when the epidural was taken away and I was told that it was time to brave my first attempt at getting out of bed and having a shower. This is the point where my memory really kicks in. Mostly because everything that followed in the next half-an hour of so really, really hurt.

I very quickly realised that sitting myself up onto a sliding board and pulling myself into the shower friendly wheelchair wasn’t easy. I couldn’t do into matter how hard I seemed to try. My hips (which had been broken as part of the surgery so that my knees could be reset) were throbbing and my arms were heavy with effort. Eventually (and a lot of help later) I was in! Later, I was given something called a Monkey Pole to help me pull myself into a sitting position, and mum came up with the idea of swinging my legs off the edge of bed before I tried to use the slide board, which made life so much easier I cannot even begin to tell you. For now though, back to sitting in The Chair.

These chairs also had a hole in the bottom so that you could sit on them over the toilet to go to the loo. There is probably a proper name for it but I don’t know it, sorry. I’m pretty sure my one hips brushed against the edges of the hole a couple of times. That hurt a fair bit, too.

So I sat in the shower, being washed down by my mum, crying. It all felt too soon and it all felt too much. I sat and wailed that I had made a mistake,  that I had been stupid, and Mum kept telling me that I hadn’t and carried on washing my hair. I looked glumly at the floor and waited for her to rinse the shampoo from my eyes.

That was when I was them, blurry from water at first, but I blinked that away and they were still there. Two nice and pink, (the water was lovely and warm)  front-facing, ‘normal’-looking knees! I wasn’t crying now, but I did hear myself actually gasp the phrase “I’ve got normal knees”.

Mum laughed and assured me that I had, them there were more tears, but happy ones this time, and suddenly I knew that I hadn’t made a mistake. It would be a long journey, but it would all be worth it.

The Surgery Diaries: The day my hips and legs were broken

Despite my constant efforts to focus on things other than the fact that I’d be going under the knife that summer, the day finally arrived.

It was a Wednesday Morning; that much I do remember. Because the hospital that I’d be staying at was a long way from home, I’d been admitted the night before. Mum was allowed to sleep at my bedside for the duration of my stay. While would make the 60 mile journey from our house with my little sister every day. I don’t really remember much before I went down to theatre the next day, other than the fact that I kept trying to read a Nicci French book but I couldn’t concentrate. So I’ll just skip ahead to when I woke up after the surgery was over.

When I woke up in recovery I was greeted by a nice and smiley nurse who told me that everything had gone well and that she’d tell my parents they could see me now. In they came and dad told me that they’d managed to get lost on their way from the ward, even though someone had shown them where to go beforehand. I managed to mumble some kind of playful insult that I had to repeat twice because I was too groggy from him to understand first time. Then mum told me not to be embarrassed about crying because lots of people do that after anaesthetic.

I hadn’t realised I’d been in tears until then but I was too woozy to care.

More nurses came and told me that I’d got an epidural in my spine so that I wouldn’t feel the pain that would be in for two days so I wouldn’t be getting out of bed. Oh good,  I thought , I’m way too tired for all that anyway.

That was when the other nurse held up a bag of urine at the end of the bed.

Is that mine? Surely not…Nobody said there’d be one of those…

“Oh, don’t worry” said Nurse Number One, still cheerful, “I emptied it half an hour ago,”

Woah, woah, woooaah That lady was holding up a half-full bag of my wee and the other one had already had to get rid of some?! Whaaaat?

After saying sorry that they’d had to do that over and over, they reminded me that they’d done it all before so I didn’t have to worry. After a bit I was transferred onto another bed and taken back up to the ward.

This is the part where things get a bit blurry, I suppose from painkillers, the passage of time and the fact that I was trying to process so much all at once. I remember that I tried to east a few biscuits to line my stomach for all the pills, but the decided that that they didn’t really like being in my stomach so much, so I gave up on the idea of food until the next day.

I couldn’t lie flat on my back or on either side (for obvious reasons) so I had to try sleep half-propped up. I’d been looking forward to bed time so much, but sleep just didn’t want to happen. Nurses had to do my observations every half an hour for the first couple of days which didn’t help.

The next morning more and more things began to hit home. I knew that I had to tackle breakfast even though I wasn’t hungry. It was then that I realised that the friends who had tried to warn me that I wouldn’t be able to sit up at first were right. It hurt. That meant that I couldn’t reach the table to get to my toast though, so mum had to feed it to me (something else I hadn’t realised – the list was getting quite long by now). I had to drink loads to help me get it down because I wasn’t  in fully upright position.  So I got really full really fast, even though I hadn’t really had much of it.

Great I thought again I have a feeling it’s going to be a looong day.     

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.