An insight to my life with Cerebral Palsy

I’ve been meaning to write this blog post for a while! I’m going to give you a better insight, into how my Cerebral Palsy affects my day to day life. Currently my main struggle is walking. I rely on the use of a K - walker, in order to be able to walk. I find walking extremely painful and use a wheelchair, when I’m not at home. And my walking is continually deteriorating. Cerebral Palsy also affects my hand function. I typically keep my hands in a fist and it’s difficult to pull them out of this position. I’m unable to form a pincer grasp, which causes many problems. I can’t write with a pen or pencil, brush my own teeth, shave my legs, prepare my own meals, do buttons, fasten my zip, dress myself and any other fiddly activity. This massively affects my independence. I struggle with my arm function too. This makes reaching for things a daily struggle. I’m unable to fully extend my arms. I can’t propel my wheelchair. My arms are very weak, so I c...

I made an exciting order! For a few months, I’ve been saving up to get the Foldawheel electric wheelchair. My current manual wheelchair is extremely uncomfortable and gives me no independence. The Foldawheel costs almost £3000, but it seems like a good chair. It folds, so I don’t need to get a wheelchair van. It’s looks very comfortable. From it’s reviews, it’s easy to manoeuvre. And it’s pretty attractive, which can’t be said about many wheelchairs. With a little help from my parents, I’ve finally saved up enough money. So I ordered it!  I can’t wait for it to arrive, in two to three weeks time. I’m really looking forward, to being able to look round shops myself and being able to drive next to my Mum, as I really miss walking next to her. I think it will make my life so much easier. Thank you for reading. Chloe x

Today, I got casted for splints A few weeks ago, it was recommended that I wear splints again. My leg muscles are getting stiffer, by the week and I’m increasingly coming further up  on my tiptoes, making it harder to walk. The purpose of having splints, is to give my calf’s a stretch and bring my heels, closer to the ground. I have mixed feelings about using splints again. This is because there is no hiding them, under leggings and skinny jeans. But I would like to see if they will benefit me, in some way. I went for black because I thought they wouldn’t show, quite so much over black leggings. I’m getting fitted for them, in two weeks time and I’m dreading it. It’s really tough, having to revisit all these treatments, that I’d previously been discharged from. I just can’t seem to accept, the fact that my mobility is rapidly deteriorating and I’m struggling to enjoy my life. Any advice would be greatly appreciated. Chloe x ...

It gets annoying! Ever since I was diagnosed with Cerebral Palsy, at 11 months old, I’ve had constant therapy and hospital appointments. I’ve had Botox, serial casting, surgeries, splints, Physio, Occupational therapy and consultations, pretty regularly. I’ve never really had a break from it. I receive occupational therapy, three times a week and I’m currently having an 8 week block of hydrotherapy, every Tuesday. I was also having physiotherapy, but as it’s now impossible, I’m having hydro instead. I also see a consultant every 3 months, but at the moment he wants to see me at least once a month, due to the rate that I have been deteriorating. This week alone, I had Botox injections on Monday, I have my three OT sessions and I’m getting casted for splints on Thursday. As much as all these treatments help me, it does get frustrating and time consuming. This is one of the reasons why I hate being disabled. I really hope in a few years the need for regular ther...

Today I had some Botox! A few weeks ago, I had an appointment with my amazing consultant. He recommended me having some Botox injections, to try to treat the spasticity ( stiffness) in my legs and ankles.  He is hoping it will help my heels, come in contact with the ground and ease my pain. Botox hasn’t been very successful for me, for quite a few years now, but he wanted to give it another shot, due to how much I have deteriorated. He also hopes, it will help me gain back, some range of motion.  I would be happy, even if it just eases my crippling pain.  I had the injections into my calf muscles, ankles and hamstrings. I was awake during this treatment, but I didn’t feel the injections going in, as I had some numbing gel applied. The procedure took about 45 minutes, once they had applied the gel and set up and everything. It was nowhere near as traumatic, as it was as a child. It will take around 2 weeks, to show any effect. I hope it helps me,...

My first date! Yesterday evening, I went on my very first date, with a man I met through a dating website. Although I’m almost 21 years old, I’d never been on a date before. So it was a totally new experience for me. My sister helped me get ready and I’m very grateful. I wore a pretty  dress and a nice jacket, with some flat shoes. We went out to a lovely restaurant and had a wonderful time. I ordered some sushi and it was delicious, we shared a sticky toffee pudding. We have a lot in common, he seems like a very genuine and kind person. The date went amazingly well and we are going to meet up again, sometime next week. I was very worried about my first date, due to having CP, but it certainly didn’t seem like an issue to him, he saw past my wheelchair. I can’t wait to see him again next week. Thanks for reading. Chloe x

I’m going on a date! Tonight I’m going on my very first date. I’ve always struggled with dating, mainly because of my disability. Being 20 years old and not having a boyfriend really bothered me, so about a month ago I signed up to a dating website. Around a week ago I found a match. I’m pleased that I put my Cerebral Palsy on the site because it means he already knows, so I don’t have to do any explaining. I’m so pleased that a man has seen beyond my CP. We are going to a nice  restaurant. Last night I realised I’ve got nothing suitable to wear, so my Mum and I are going to go out this morning, to find something. My sister will help me with getting ready and doing my makeup. I’m very nervous about tonight, as it’s a whole new experience for me. I’ll update you on how my first date went tomorrow. Chloe x

Here are some of the struggles I’ve faced, since using a wheelchair: Having to phone places to see if there is wheelchair access. Going round charity shops, the aisles are usually very narrow. Taking public transport, although most busses now have a wheelchair/pushchair space, it’s often taken up. Not all shops have wheelchair trolleys, so when I’m out with my Mum or Dad, I just have to put a small basket on my lap and we can’t fit a lot in a basket. If I’m out shopping I can’t just look round myself, I have to ask people to stop when I see something I like. Some shops have big steps to get in, making it hard for people to get me in. Thanks for reading Chloe x

It was amazing! Today I had my first hydrotherapy  session of a 8 week block. It’s been my first time in the hydro pool, since loosing my unaided walking. The water was lovely and warm. When I was in the the pool, a miracle happened! I was able to walk on my own and it felt amazing! My physio said, it’s because I’m half my body weight, so I’m not putting much pressure through my legs. I also found that my legs weren’t in as much pain, allowing me to do a few exercises and I can’t do any of them out of the water. My legs also felt so much more relaxed and free. I’ve haven’t felt so mobile and free for a few weeks. Unfortunately, as soon as I was out of the pool, my pain was horrendous again. But it was nice to have a rare 30 minutes of reduced pain. I can’t wait to go back next week because it just felt amazing. Thanks for reading  Chloe x

Bowling, shopping and food! Today I had a day out with my Mum, little sis, big sis and baby Logan. As I’ve had quite a rough time recently, my Mum thought it would be a good idea to have a girlie day out to cheer me up. We decided to go bowling first, before we would have loads of shopping bags. This was the first time going bowling, where I needed a bowling ramp. Although, I’ve never been able to get my fingers in the holes, I’ve still been able to roll the ball. But because I can’t walk unaided anymore, I had to stay in my wheelchair, making rolling more difficult. I still enjoyed myself though. I came last, as usual. But I don’t mind, as I still had fun and tried hard. My little sister came 1st, my Mum came 2nd and my big sis came 3rd. Fortunately, my nephew Logan slept through our game. After a game of bowling, we went for lunch at  Zizi’s, our favourite restaurant. I feel quite embarrassed eating out because I need help cutting up my food and occasionally help...

I try my best to be positive, but every so often, I really struggle to accept my Cerebral Palsy. I hate the fact that I don’t have a lot of independence, especially with my self care. I hate the pressure that’s put on my family, to give me the best life possible. I hate costing the NHS money, they could do without spending. I hate the agonising pain. I hate the endless hospital and therapy appointments. I hate all the aids, that are in my house. I hate the rapid deterioration my CP has caused. I hate being in a wheelchair. Being disabled is tough, but I will never be cured and I just have to accept my CP. I’ll be back soon Chloe x

The reason I started my blog! I started my blog ‘ An insight to my life with Cerebral Palsy ‘  just over 2 weeks ago. I started it to educate and raise awareness about Disability. I would like to give hope to parents of kids with CP and give them an insight to what it’s like having CP, as an adult. Although my posts have sometimes been a little bit negative, I want people to see that you can still live life to the fullest and be happy, despite life changing situations. I want to share my achievements and my goals. This blog isn’t just about me, it’s about everyone living with disabilities. Thank you for reading  Chloe x

I feel so lazy right now  As I now require the use of a walker or wheelchair to get around, I’m relying on my friends and family a lot more. I feel so lazy and cheeky, asking people to bring me things, such as a drink or my IPad. I also hate it when I’m out shopping and I need to ask whoever is pushing me to stop and grab me a skirt or something. I feel like it’s my fault, I’ve got to this stage, even though I did my physio program daily and ate all the right food.  I’ve never hated having CP, as much as I do now. I want my freedom back. My legs used to be the least affected muscles, but now they are just as severely affected as my hands  and have very limited independence. I really wish I could afford a electric wheelchair sooner, to make going out the house more enjoyable for me, my family and my friends.  Should I feel bad for needing more help? I’ll be back soon Chloe x

Today I had an appointment with my amazing consultant, I’ve known him for 11 years. I was so pleased about this appointment, as this past week hasn’t been very pleasant,  It’s been a whole week now, since I lost my ability to walk unaided. My consultant appeared very shocked to discover how much I had deteriorated, since I last saw him, around 6 weeks ago. I told him about my increase in leg pain and how physio is now impossible. He wanted to see me walk, holding on to his hands and then without anything, which was completely impossible. He said that I’m much higher up on my toes than last time, which he feels has affected my balance.  He examined me and said, my legs and ankles are a lot tighter and my range of movement, has completely gone. I then went off to get a few x - rays, of my hips and legs. He noticed that my hips were slightly dislocated, but not to a great extent. He doesn’t feel like I need an operation yet, as my hips are not causing...

Something a bit more positive today  Today I had a visit from my big sis and my nephew Logan, who is now one week old. I’ve certainly had quite a tough week, so I really needed something positive to happen. Having a cuddle from little Logan, certainly did cheer me up. He’s the cutest little man in the world, so chilled out and loves to be held. He just seems to give off positive energy and he came into the world at just the right time.  Although I’m losing my abilities, he doesn’t have many yet and he’s still such a happy boy. Maybe I need to be more happy and be more grateful, for what I  can still do. He’s teaching me to be happy, even though I can’t do as much I used to be able to. Logan is so very special to me, he’s giving me so much strength and something to stay positive about. Although newborn babies can’t talk or smile, you can still tell when they are happy or sad. I love Logan so much, he teaches me more than any school teacher ...

This is outrageous! I was watching the news this week and I heard that Legoland had forced a 5 year old wheelchair user to walk, to be aloud to go on a ride. Why should you need to be able to walk, to be aloud on a ride? I was absolutely disgraced. The worst thing was, they made him do it twice, as they weren’t satisfied the first time. Some disabled people can’t walk at all, meaning they will be excluded from going on a ride. Being in a wheelchair myself, I really understand how the little boy felt, being forced to do something, that is very difficult. https://www.heart.co.uk/lifestyle/disabled-boy-legoland-wheelchair/ Please share Chloe x

I am normal Something that really annoys me, is when people ask me “ Do you ever wish you were normal.” The reason this bugs me so much is because I don’t believe that I’m not normal.  To be honest I don’t really know if normal even exists because everyone is so different and unique. There are always times where I wish that I didn’t have a disability, but I feel so privileged that my condition isn’t life limiting or making me ill. Although I hate having CP the majority of the time, it makes me who I am and I believe it makes me appreciate my life so much more. In many ways my life is different to most, but in many other ways it is very similar and I couldn’t imagine my life without Cerebral Palsy. Nobody is normal, but nobody is weird. Everyone is equal. I’ll be back with another blog soon Chloe x

I got my new K - Walker  On Tuesday morning, I realised that I could no longer walk independently. My physio brought me a pair of crutches that day , but due to having limited grip in my hands, I was unable to hold them. So today she brought me a K - Walker with special grips on and she said it should also be easier on my arms than crutches, as my arms are also affected by my CP. This was a great success, I am able to hold onto my new walker safely and easily. It took a bit of getting used to, but I’m safe enough using it now. Walking is still very difficult and painful.  But I am pleased I can now move around downstairs by myself because for the past two days, I have been relying on my family to help me. Because I can’t get my walker upstairs, I am having to crawl. This is so frustrating because I feel like a baby. I would buy sticks or something to keep upstairs, but they are too challenging to hold. For the past few days, my house has started to look very...

This disgusted me! So this afternoon me and my Mum had a walk to town. We passed by the local park and saw a beautiful little boy, who appeared to have Down Syndrome. He looked about 7 years old. He went to go down the slide and these  two boys, who looked about 10 said to him “ Retards aren’t aloud to come up here.” The little boy went crying to his parents and didn’t want to play there anymore. I felt so sorry for this young boy, he was so upset.  Me and my Mum looked at each other in so much shock. My Mum just couldn’t leave without saying something, so she ran over to tell them how furious she was and how they wouldn’t say that if they had a family member with a disability. I find this so disgraceful and upsetting.  Kids with disabilities just want to be kids and be included. They already feel so isolated and different, so being excluded makes them feel even more different. Having someone call you such a horrible name makes kids scared to go out and d...

This is a tough one This is such a difficult blog to write. Today I woke up at 10:45 as normal. I can no longer walk unaided.  Yesterday I could take 8 steps before loosing my balance, now I can take none.  I stood up and tried to take a step, but I just fell. I had managed to pull myself up again using my bed (I lost the ability to do it with just my hands 2 weeks ago). So once I got up again, I tried walking again and fell again. I realised that my ability to walk unaided had just gone. I shouted of my Mum to come and help me walk to the bathroom. We were both in tears. I went downstairs on my bum, as I felt it was safer and my Mum helped me to the kitchen table. As soon as my Mum had given me my breakfast, she immediately rang my private physio. Thankfully my physio had a free slot and came to see me this afternoon. She brought a pair of crutches with her for me to try out, but due to my lack of grip in my hands, I wa...