The Surgery Diaries: Getting home again

After what felt like a good couple of months I was allowed home again. It had actually only been less than two weeks since they’d done my leg and hip surgery, but I think hospital stays often tend to feel longer than they actually are.

The ride back was long and painful. The place where I had had it done was 60 miles away from home. I’d been practicing building up stamina sitting in a chair for the few days before the trip, but after a couple of hours I was really relieved to be able to do some physio and stretch out.

Not being in the hospital anymore brought with it a new set of challenges. My dad and sister were around to help out a lot more now, although my dad had to go back to work and Sophie was only around six at the time. Thankfully at the time my mother was working a job where she didn’t work the school holidays (which it now was, being August) and that was a huge help. Between us, we’d sort of managed to get a handle on how to work around a few things in the hospital, like showering and getting me in and out of the bed, but that would be different now. We didn’t have a walk-in shower at that time, and it was upstairs anyway, so lots of the routines would take a while to figure out. Dad would often carry me up the stairs and put me in the bathtub, but often my mother just washed me down in our kitchen while I was sat on a commode. We knew we had lots of things to figure out still, but in the back of my mind the count- down clock to Operation Two – the muscle bit, which I’ll get to later – had already begun. It was scheduled to take place around six weeks after the first, probably sometime around the end of September.

My dad had done a great job in turning our dining room into a living space for me. My hospital bed (complete with a Monkey Pole and remote control) had been put in there, along with all my other bits of equipment, and he’d set up a TV for me too, for when I didn’t feel up to sitting in the living room with everyone else.

The first few days were really trial and error with just about everything. The physios were really great at the time and came out two or three times a few to try and help us conquer new techniques and check my progress, with which they were always really pleased thanks to our huge family team effort to make the most of the opportunity I was given. The four of us were –are- a truly awesome team.

At first things were frustrating because I didn’t have much arm strength to pull myself up into sitting positions, or use the slide board very well and that took its toll on my mother quite a bit when dad was at work. For a while, it took three of us (mum, my sister and I ) to be able to get me onto the commode in time, with Sophie taking the arms off my wheelchair, mum putting the board beneath me, me trying to scoot along it, and mum having to pull down my pants on my behalf because I had to put all my efforts into lifting myself up enough for her to be able to do it, at top speed, before I fell down again. I still wasn’t allowed to fully stand up, and hovering was still really painful and hard. Throw in the added time pressures of a full bladder and I think we must have looked like we were competing in a rejected round of the Generation Game, but it usually ended up in us all collapsing in a heap of relieved giggles when we succeeded.

By the time I no longer needed the slide board (several months later) I had arms like Tarzan from sliding, wheeling and pulling my own body weight around. I’m now ashamed to say that I have lost most of this definition in the years that have passed, but my arms are still much stronger for it. Now I know that if I ever need to have any more surgery, I will definitely be investing in a good set of weights several months beforehand to try and make it easier on myself and my family.

The Surgery Diaries: Physio time

While I was in the hospital, the physiotherapists would come round at least twice a day to help me with my exercises and give me some new ones to do every now and then. As I’ve said before, I pretty much hated physio up until this point, but then everything changed.

If anything, I looked forward to them appearing at my bedside. It gave me something to do and someone new to talk to. It helped to break up the long days sitting in bed. I won’t lie. At first I was shocked by how hard I found it. Suddenly things that I’d been able to do just a matter of days ago seemed really, really hard. I remember one of the things that I had to do was slide each leg out to the side. Before the operation I’d been able to do around 10-15 of these before getting really tired. In hospital, I was struggling to get my count up to five.  Instead of letting this get me down, I used this as a challenge to try and make myself go one better every time I tried. I didn’t always manage it, but the times that I did it made a massive difference to my self-esteem and helped me feel like I was doing something productive from my bed.

My family were a huge help during all of this. Without them, I don’t think I would have done it as often as I did, or pushed myself as hard. Mum was allowed to stay with me at the hospital so we’d try and do a set every hour or so. Dad would do them too sometimes, but often he’d be there, crossword puzzle in hand, shouting out the clues to distract me from the discomfort, or motivating me to finish them faster so I could concentrate more. I wasn’t very good at crosswords then, I’m still not now if I’m honest, but my Dad is a whizz at them, even the cryptic ones.

Mum even said that when the time came for me to try walking again, she’d dangle money in front of me as motivation to keep going if she had to. I never put that theory to the test in the end, I don’t think she was ever serious about it anyway, but it made me laugh all the same.

When the Monkey Pole bar was fitted to my bed to help me sit up, I would pull myself up on it a few times just to build my arm strength up to make using the sliding board easier. It probably wasn’t the best thing for me to do looking back on it, but it helped me get stronger and that was all I cared about. I hated the slide board so much in the early days. It should have been my best friend because it helped me get from my bed into a chair, but I found it really hard to use so it just made me feel weak and very frustrated. By the time finished using it though, I could even get on and off it without help, so I guess something paid off somewhere.

Now, when I don’t feel like putting the work in (which is more often than I would like to admit) I try and think back to what the post-surgery, sixteen year-old me, would say to that. I think she’d call me lazy, and I think she’d feel let down that I didn’t continue with the hard work. So, I still try and push myself to work hard, both for my family and for myself.

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: 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.