Along with the Lycra glove, I have also tried other Lycra garments and suits. I was the first child to have a Lycra suit funded by the NHS in our area. Lycra suits are skin-tight and they’re designed to compress the muscles a little to dampen down involuntary movements or support controlled movement. I don’t know what it’s like now, but when I was about five years old, Lycra suits weren’t funded in our area because it was like a postcode lottery; it depended on where you live

Another thing that I’m really happy to be able to do is stroke my dog. My mum, dad and I have a Labradoodle called Rani. She is four years old but she still thinks she’s a puppy; she is very clumsy and loves to run around doing what we call a doodle dash. When she gets excited, she runs the length of the room and back again. Rani lives with my mum and dad, and when I visit, she goes mental! I get out of my wheelchair before Rani is let into the living room because otherwise,

As I’ve said, I fix my arms when I am doing things with other parts of my body. I sit in the “W” position sometimes at home. This is where your knees are bent with your feet on either side of your bum. Most physiotherapists I’ve seen have tried to discourage me from sitting in the W position because it’s bad for my hips, but most haven’t seemed to realise that I cannot keep myself sitting upright without something behind me unless I sit in this position. When I eat or brush m

When the wound was healing up, I had lots of little scabby bits along the scar. Very technical wording, I know! Anyway, the scar was raised and I’m not sure if it was these scabs and I don’t know why, but at one point my scar was really painful. I kept catching the scar when my arm moved across something, and that felt like I was pulling a single strand of hair! As with every injury or procedure, you have to learn to adapt afterwards, and I know that this operation wasn’t rea

Two weeks after the operation, on 14 November, I went back to the hospital for a check-up. The consultant was very happy with how my wound was healing and said that I didn’t need anything back on it and he said to leave it open to the air. I went home, and carried on as normally as I could. I still had my arm in the sling to keep it supported and to prevent me from whacking my arm on things at home. After my cast was taken off, my arm and hand were very swollen. My wrist and

Moving around was very painful at times. As I said, I had no feeling from the elbow down because of the 24-hour nerve block they administered (I’m not sure if it was an intravenous drug or something else), so I didn’t have any pain apart from muscle aches in my legs from where I had been laying still for so long during the operation, but that didn’t last long. The nerve block started to wear off the next morning. I don’t remember exactly what time the feeling started to come

Along with not having a shower, I had to change my personal care and my standing transfer routines as well. As part of my routine I have to roll onto my side, and I have always rolled onto my right side because it worked better for both me, and my carer. As I had my arm in a cast and sling, I couldn’t really roll onto my right side due to the pain and the sheer awkwardness of my arm being immobilised. It was really weird for both of us, and kept having to think about which wa

I arrived home around 8 o’clock that night and I was absolutely pooped! I was also still hungry, so I had a tin of Ravioli. After that, I just sat and chilled before going to bed. I can’t remember if it was the next morning or the morning after, but I got up and attempted to have a shower… For those of you who don’t know, I have a shower chair. It’s quite basic, the only thing that isn’t basic is the pommel. Due to my Cerebral Palsy, my knees gravitate towards each other. Thi

I was visited by about four different people when I was in my room waiting for the surgery. I don’t know why, but I had three mini panic attacks; one with each consultant and I think I had another with the surgeon. They asked me if I had any allergies, and I almost said no because I didn’t think about the mental health drugs I tried over the past couple of years. I have tried a few medicines in the SSRI and SSNRI categories, and they made my involuntary movements worse. I kee

At one point, we had to play around with the timing of my Botox injections because 6 months had become too long in between, but 5 months was too soon. Unfortunately, we never found a happy-medium. I had been having meetings with the Hand and Wrist surgical team to find out if there is a surgical option to combat the spasticity permanently, without the need for the Botox. Over the last few months, there had been a lot of speculation about whether or not surgery would be the be

Having Botox for my shoulder is relatively simple and painless, and having it in my forearm is not too bad either, but I hated having it in my thumb because it hurt like a bitch! I think it’s the worst pain I’ve experienced. Don’t take my word for it, but I think this is because it’s such a small group of muscles. To inject the Botox for my thumb, my mum had to hold my hand open and force my thumb out to the side to enable the doctor to inject the muscle in the base of my thu

As I mentioned before, I had Botox for my right hand and shoulder to relax the muscles. I have had this procedure since I was 18 years old. Botox is a muscle relaxant. Botox is a toxin and its full name is Botulim Toxin, and most people know it to be cosmetic; for example, when people use it to get rid of wrinkles in their face. When I first started having Botox injections, we joked around by saying that I need to bring some back for the older people I know, but I’m not sure

For me, AFO splints can mean the difference between walking and not walking. I don’t technically have spasticity in my legs, but I do have high muscle tone. To put it simply, muscle tone is basically the amount of effort your body puts into moving the muscles. People who have high muscle tone either have spastic (tight) muscles, or a mixture of tight and loose muscles causing involuntary movements. People with low muscle tone struggle to move because their muscles are too loo

Eventually, I got plastered. When I got plastered for the old splints, I remember having two casts taken for each leg; one set of casts was for the full-length splints, and the other ones were just casts of my feet. This time, he only took one cast of each leg. He said that they would make the inserts from the original casts. I didn’t want to speak too soon, but I was quite optimistic that I would get what I needed this time. I know that I said that last time, but we’d just h

My first pair of new splints didn’t have any heel on them at all, which caused rubbing and awful bruising on my heel. When I tried these splints on at the hospital, I knew that they didn’t feel right, but I went with it because I wasn’t used to them. I had suspicions right from when I saw the moulds of my legs because they didn’t look like my legs at all. I was sick of the constant battle just to get splints that actually work for me. I was sick of not being listened to. I ha