Aches that won’t go away…

The pain has come again. I’m sick of it.

 Last year I had a little accident in which I missed a step when I went on a zip-line. As I was strapped to a harness my body jerked up causing pain on my hip and therefore leg. I had x-rays done which didn’t seem to spot any problems. So I was referred to physio which was where they found that my pelvis was dislocated. There and then I had it manipulated and I was in no pain at all for he following few months. 🙂

About 3 weeks ago the pain started again, this time it was  worse –  in both hips and both legs. This time I went to a specialist physio.  My appointment was an hour long and I had a full physical examination. I was told that the reason behind my pain was a lack of exercise, bad posture as well as wearing the wrong type of shoes. So, I was given several exercises to do everyday in order to keep stretching and strengthening my hip and leg muscles.
I really don’t understand what is wrong with me because I am doing everything that I was told to – I walk everywhere, I’m doing the exercises everyday, I’m walking for an hour once a week and I’ve bought the proper walking shoes which were recommended by the physio. It’s a real pain – both physically and mentally! 😦
I wake up in pain and go to sleep in pain. It’s so horrible!
And what’s even worse is , I went to the doctor’s today and I got no help at all. I was told that there is nothing that can be done. I felt really sad and angry as I can’t take the pain anymore. I’m also worried about my future as I will be going to uni this September and the pain will make uni even harder. Also, my parents have been saying that I am too young to be experiencing great amounts of pain and I cannot be taking painkillers all the time. Can anyone relate to this? I would be extremely grateful if anyone has any recommendations of what you do to try and ease the pain.
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Last year at High School

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.

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University worries

Please help me! I’m in need of advice regarding my disability and university.

I have now made up my mind and come to the conclusion that I want to go to uni to study french and business. However, there is one important issue… my disability. Due to my cerebral palsy, I struggle with my writing – it’s quite slow because of my lack of fine motor skills. This means that I will need a support assistant to take notes for me as it would be impossible for me to take down the notes as the lecturer speaks. Additionally I will also need extra time in exams. I will also have to disclose my slight speech impediment and the fact that I was exempted from the oral examination. So I would really appreciate it if anyone who has been to uni or are going, and have a similar disability, could answer these questions for me:

  • Did you mention your disability in your personal statement?
  • Did you call/e-mail the universities before applying?
  • Did you actually visit the universities beforehand?
  • Did your school take care of it?

Thank you in advance, I am really worried! I really want to go to to university and want to prepare and disclose these issues to the university as soon as possible so that they accept me but I don’t know how to 😦 Therefore if you have any advice I could really use it right now.

My summer holiday!

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.

PicMonkey Collage scotland

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.

Experiencing more pain recently than ever…

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?

Society and CP are not a good combination.

About a month ago I was told I had social anxiety and it is clearly caused by my mild cerebral palsy. As my cp affects my speech slightly, among other things – such as my startle reflex and my poor motor skills, I was constantly stared at and sometimes made fun of. I will always remember this young girl who was about 4 or 5 at that time, I must have been 8. Anyway, we were at the beach and she overheard me while I was talking to my cousin. “She talks weird” was what she told my cousin when I was RIGHT BESIDE her. I had to keep it in at the time and deal with it. However, these words really tear my heart apart as there is nothing I can do about the way I speak – although when I was younger my speech was worse. 

At the beginning of this year was when all those ‘saddening’ memories came back. I sat alone in my room and cried my heart out – wishing I could speak like other people and why I spoke differently. Here, I wished I never had cp and was constantly asking myself the question ‘why me?’ I even had extreme thoughts of which I would never have thought of before this. You can probably figure it out! Thankfully, my mum noticed early enough to get me some help.

I was offered the opportunity to see a psychologist – at the beginning I was worried about going as I didn’t know what to expect. My first appointment was a little awkward as I wasn’t quite familiar with the situation and I couldn’t express all my feelings openly yet. However, appointment after appointment I became much more open with my therapist as I knew that all she wanted to do was help me – and was not going to judge in any way. After sharing my thoughts and worries, she came to the conclusion that I have social anxiety.

 understanding-social-anxiety-disorder

This is true as I am incredibly self-conscious everywhere I go. When I am in a big group of people and asked a question, I instantly sweat, my body goes all shaky and I choke on my words – with the addition of the ’embarrassing’ unwanted actions that cp brings. This makes me feel weak and intimidated by society as I can’t control the way my body moves – as much as I want to. In order to avoid these social situations, I tend to hide away in my room, but I am working towards getting rid of that anxiety and shyness together with my therapist.

I am so glad I made this step in my life because, slowly, I am overcoming my social anxiety. If I hadn’t gone, I would have been stuck in my house all day and would have never had the courage to expose myself to society, Thanks to the support of my psychologist among many other people, I am slowly beginning to accept myself for who I am and view life with a positive perspective – some days more than others, but hopefully I’ll get through it!

Massive thanks to social media!

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!