Everyday is a struggle. For over a year, I’ve been having pains everywhere; lower back, legs, arms, feet and even fingers. I wake up in pain and go to sleep in pain. I’m sick and tired of it 😦
I have been to physio and taken painkillers but they don’t seem to work 😦 So I went to the doctors again but was told that there is nothing they can do. This was so hard on me . I am feeling very low and miserable. I have no energy and feel very tired all the time – I just lie in bed all day.
I don’t know what to do anymore! I would really appreciate it if anyone could give me any tips. How do you cope with your pain, if you have any?
I find it hard to believe that I am already in my last year and planning to go to university next year.
It’s been a tough couple of weeks full of big decisions about which uni to go to, what course etc. I had originally decided on my chosen course in summer but lots of things occurred which led me to confusion. Due to my CP, I began to doubt myself by thinking that I couldn’t do a French degree just because I speak a little different to everybody else. I was torn down because of this as I have loved the French language ever since I started studying it.
I thought that this was impossible and that I would have to give up my dream and go in another direction…
BUT. I was not alone. Thanks to my parents, teachers and speech therapist, I managed to get back on track with a positive attitude and focus on achieving my dream – to study french at uni!
They helped me see that unfortunately some people have to work harder than others … but it’s ok. This is my life and I cannot change it so the only way forward is HARD WORK. I am ready to take on this challenge and will work hard to achieve my goal. I won’t give up. I won’t let CP stop me from doing what I want to do in life.
Scotland! Been looking forward to it all year round. Well, it came and went ever so quickly 😦
It turned out to be one of the most ‘hectic’ holidays for me (it was great though!) as my leg decided to start hurting the moment we arrived. We were fully booked with tours, site seeing, long walks in order to get the best out of Scotland during the few days that we were there. I kept trying to motivate myself by being positive and reminding myself that exercise is good for me and it will only make me stronger. Everyday seemed like a struggle, but you get the best feeling ever when you’ve made it through the day that you thought you couldn’t. The weather didn’t help either; as most of the time it was raining and really cold.
I was quite proud of myself for not giving up and pushing myself whenever I felt like stopping. I even surprised myself as I climbed up the famous ‘King Arthur’s Seat’ which required a lot of effort and caused my legs and now hip to ache a lot- nonetheless, I continued until the highest point and back down again. I felt so relieved when I took the last step down and so happy to think that ‘I did it!’ 😀
Despite my pains, I absolutely loved Scotland as it had wonderful sceneries and incredibly beautiful highlands! So much so that I didn’t want to come home. It was an unforgettable holiday – if we leave the pain to one side.
Recently I have been feeling very tired and experiencing a lot of tightness in my muscles, especially in my calves because of the way I walk. About a year ago, I had the same problem so I went to physio and I was told to do some stretches everyday in order for my muscles to grow properly (as my body was growing, but not my calf muscles). To be honest, I started doing them everyday for a few weeks, but it came to a point where I either forgot or was too tired and not bothered to do them. After a month or so, I was fine and wasn’t experiencing any pain…
However, several months ago my CP really started to annoy me. My right leg (weak side) was really hurting and so it limited me from doing what I wanted to do. I had to lie down and ‘massage’ my leg as it wouldn’t go away. I’ve also been feeling incredibly tired and found it hard to make it through a day without taking a nap – I never used to take naps when I was younger! This got me thinking, will everyday tasks get harder with age? Will I be experiencing more pain as I get older?
Only after walking a fairly short distance, which caused no pain before, I now feel really lethargic and my right leg just sort of ‘gives up’ on me. However, I always try to ignore the pain and carry on.
But, after a few days, I can’t take the pain anymore! I get mad to think that I’m always so tired and I have no energy as well as sad to think that I am limited and restricted to things that I would like to do – if this is now, how will I be in thirty or forty years time?
At the beginning of this year, I felt like my life was falling apart; I felt very lonely, useless, extremely sad and my head was full of negativity – I couldn’t find positivity in anything! After keeping it in, faking a smile and holding my tears back for quite a while, so as not to make my family worried, I finally had to spit it out – I just couldn’t hold it back anymore. I told my mum one night, while in tears 😥 – she could tell that something was wrong as I was very anxious and very jumpy (not like myself!) – and she kept on telling me how there are worse things in life than cp and how people with disabilities can be whoever they want to be if they set their mind to it. She then told me to focus on the things that I am good at and push the things I couldn’t do aside.
After a couple of days I was still the same – my mum didn’t know what to do with me anymore. So, she called one of therapists, who said that I could contact her whenever I had any problems. My mum booked an appointment for us to have a little chat with my therapist and to see if she could do anything to help me. And she definitely did! She told me to look online and join CP Teens UK chat, where I will find many people with cerebral palsy sharing experiences and making friends. So that’s what I did – and i have to say, I recommend it to anyone with cp, because it’s just an amazing and friendly community where you don’t feel alone anymore.
Personally, I’m incredibly happy to be a part of this amazing community as I have had the opportunity to share my experiences with people with the same condition. I would also like to thank the members of the group who made me feel welcome and supported! If it wasn’t for social networking sites, e.g. FB, I would not be as confident as I am now and as happy as I am now. Therefore, I would like to say a massive thank you to my mum for her endless support and also to social networking sites and the members of CP Teens UK chat – you have definitely changed my perspective of living with a disability.
Thank you for changing my view of life!
The reason why I have not been posting much lately is due to the fact that I was preparing for my ‘nerve-racking’ AS level exams. My head was fully blown with vast amounts of revision as well as worries. So yeah, you can probably guess that I am somewhat a worrier! Anyway, now that exams are over the celebrations can begin!
This is a blog about my recent experiences and feelings about living with cerebral palsy (cp). I have mild cp, which means I can do pretty much everything but at a slower pace or slightly different to others. My right side is weaker, and may not always act quickly (especially when I want it to). When I was younger I had a limp in my walking but now you can hardly notice it – except when I’m tired. In the past I was faced with vast amounts of stares – and I still get some. This makes me feel very frustrated as there is nothing I can do about my disability and that’s what most people don’t understand. I will be happier if people would ask me questions (obviously in a polite manner) than to stare at me from top to bottom – that really hurts me.
This type of cp means that when I am under pressure my movements are really difficult to control – personally, this is one of the most embarrassing things, as well as my startle reflex (which I absolutely hate).
Don’t get me wrong – my life is not all negative! I’m glad that I have cerebral palsy (in a way) just because it’s given me the opportunity to meet very special people and to achieve some pretty amazing things – which I’ve had to push myself for! If I wouldn’t have cp, I wouldn’t be the same person, as I received incredible amounts of help and support all throughout my childhood and so this has led me to have an interest in helping people with disabilities – this makes me remember some amazing memories and achievements. I have also had the pleasure of meeting amazing and inspirational people through the CP Teens UK chat group on Facebook. Through this, I have had the opportunity to share experiences with people with the same condition and I have found lots of support (the group has given me a more positive view of the world and has picked me up when I felt down – thank you for that!).
That’s it for now – I would love to know what you think about my blog and please feel free to ask anything or suggest a topic for my next blog 🙂
I have always been that shy and quiet person who always wanted to hide the truth in order to ‘fit in’ with society.However, I’ve come to realise that now is the time to share my story…
My name is Alexandra Perera and I have cerebral palsy. I am now 16 years old and live in Gibraltar, UK, I am currently in the sixth form doing my AS’s in french, spanish and psychology. As you can imagine, most of my days are spent studying with the hope of achieving the best grades possible. Apart from these studies, I have come to this phase of my life where I have many insecurities about myself (including the insecurities that any other teenage girl would feel). So hopefully this will give me the opportunity to take a break from my studies and at the same time open up and express all my feelings.
I have a very mild form of CP. I am a twin, I was the second to be born and my birth was rather rough! I was clinically dead and resuscitated when they found that I had a pulse on my umbilical cord. And so I was called a ‘miracle baby’! As from a very young age, I attended OT, PT and speech therapy on a regular basis; it was part of my weekly routine! I was dismissed by my therapists by the age of 8. Thinking back now, although I dreaded it at the time, I am very grateful for everything that I have achieved, thanks to my therapists (although there’s always room for improvements, especially with my speech!)
Although I have always been positive about my CP, I have now reached an age where I am more exposed to society; therefore I am very conscious of my weakest spot – speaking. I’m also worried about my future, thinking whether I would fit in at Uni. I try to push aside these worries and think on the bright side of things, but sometimes it just gets out of hand :'(. Last month was the worst I’ve ever felt – I had very negative thoughts and felt very lonely. However after going into some websites, I have now realised that I am not the only one living with this condition.
Despite my CP, I live an ordinary life and can do the things that any other teenager does. I have always been afraid to tell the truth, but so I’ve been told that there’s nothing wrong in doing so. I’ve had lots of ups and downs in my life but now I have learnt to accept myself for who I am and focus on the positivity of life. I have accomplished so many things and will continue doing so! My favourite quote is “never give up, no matter how much life throws at you!”