Tag: disability

The Surgery Diaries: Banishing my hydrotherapy hatred

A couple of weeks after the surgery I was told that I’d be starting hydrotherapy as part of the recovery process and my heart sank. I’d had group sessions a couple of years before at my local pool and I hated it, although it was there that I finally did learn how to swim aged about 11.

At first I’d disliked it because I couldn’t swim without armbands and all the other kids seemed to be better than me which made me very, very sad. The physios there would make me work hard and then I’d have to go to school smelling of chlorine and answer questions from my classmates about where I’d been. They’d ask me how far I could swim, and I’d have to tell them that I could only manage five metres. I felt lame. I used to go to bed on Thursday nights and hoped that I would be too ill to turn up the next day.

Over the years though my Friday mornings in the pool paid off and I learned to swim not only on my back, but on my front AND under the water; the latter being my favourite way of doing it. Eventually I started to look forward to going, although I still didn’t particularly enjoy it. I liked it because it gave me a chance to meet other kids from other schools and everybody would try and help each other reach our targets when we could. I could see myself improving, but it got to the point where I couldn’t really take time away from school lessons to go anymore when the work became all about passing exams.

When I found out I’d be trying it again I felt really nervous because I was worried that I would have deteriorated, but at least these sessions would be one-on-one in a proper hydro pool rather than my local swimming baths.

Getting in the first time was hard work. I still wasn’t allowed to stand after the operations, so I had to slide from my wheelchair (with the help of my Dad) onto a bed/lift thing that lowered me into the water, and my feet   could barely touch the bottom once I was in. I was pleased when I realised that these appointments weren’t really going to be about swimming, but just about doing exercises mostly. The water was so lovely and warm, and it felt so nice just to be floating again while it look my weight, that I really, really looked forward to going. Luckily when I started my A-levels at school after summer was over; there was a gap in my timetable on the days that I was supposed to go so it was still okay. Schooldays felt long and tough at first so it was something nice to look forward to that helped me through my Tuesday morning.

A couple of weeks into the appointments I was allowed to try and take a few steps while I was in the water because it would support me and it wouldn’t be the same as trying to stand on my own or something. It was hard but It felt wonderful. Never again will I dread hydrotherapy.

The Surgery Diaries: Getting the new wardrobe

I think it’s fair to say that when I had my surgery I was going through what you could call a Goth style phase. I could usually be found sporting mostly black, oversized clothes with characters like Emily the Strange and Ruby Gloom on them. I wore dark make to school most days, dyed my hair black and had the nail polish to match. Most people wouldn’t know it though to look at me now, and that is thanks to my surgery.

It didn’t take long for me to realise that none of my cargo pants and jeans were going to be wearable for the next few months while I recovered from the surgery. They would be tight on my hips and press on my new scars. At the time before I had the procedures done, I was too self-conscious to wear dresses and skirts. Mum and I took to the clothes shops to get something for me to wear. We got dresses and skirts in all different colours, lengths and styles. There was even a pale denim mini skirt! I really didn’t care what I wore as long as it was comfy and looked half-decent, (which was more than could be said for me).

When I went back into hospital for operation number two (which we’ll get to soon, I promise) my family told the doctors that I’d taken on quite a different dress sense . Even for a long time after operation two I kept wearing The New Wardrobe. Even after I did go back to my jeans, I got rid of my old clothes. It didn’t feel like me anymore. And, my family had spent so much money on the new clothes, I didn’t want it to go to waste.

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: 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.