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I want my life back! :(

My days are full of pain – sometimes bearable and many times debilitating. Pain takes up all my energy, meaning that it’s difficult to get through the day without a nap. I want to do things and make the days ‘productive’ – especially as I’m in uni. I always feel guilty on my bad days because I know that I should be studying but I just can’t concentrate when I’m in so much pain. Every single day is a struggle, a battle with my body and a fight to stay awake and active – making uni more difficult .

But the worst thing is that I have to get up everyday (though I feel like going back to bed) and get through the day with a fake smile and pretend everything is ‘FINE’ – when I really am struggling. I just want this to end and wish that I could have my life back 😥 There are day when I cry myself to sleep, or I start the day with tears.

I cannot remember what it feels like to live without pain…

Walking has become much harder, uneven and painful and everything requires much more effort. So I tire out much more easily but then at least I get a few hours of relief… as soon as I fall asleep my pain stops (thank god for that).

I’m sick and tired of all this pain, it’s restricting me and taking over my life!! 😦

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New Chapter

Last month I began a new journey… Moving to another country, making new friends and having to fend for myself. There were so many tears and so many doubts – at one point I was seriously considering going back home with my parents. But I told myself to be strong and carried on…

Now I can honestly say that was the best thing I ever did, I have gained so much in just a month:

  • I have learnt how to cook – Although I take a long time to cook (as I find certain things hard to do) I still mange to make some nice meals which I never imagined making.
  • I’m becoming much more confident – I now have more self-confidence and do not let what others think get in my way. I have also become more open and started to break away from my shyness by speaking to different people, professionals and asking questions.

BUT…

Life is becoming much harder. I used to have days where I had no pain at all. But now I am in constant pain everyday; it’s even got to the point where walking requires much more effort. I am tiring much more easily. My whole body just feels so tight and stiff all the time.

Everything just requires more time, energy and effort … but at the end of the day one way or another it all gets done.

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Sleep is now my best friend… as it takes away all the pain and relaxes all the tension in my muscles.

 

Stuck inbetween

Throughout my life I’ve been stuck in the middle. As I have mild cp I am able to do many things that any other teen can do but I’m also quite limited

I attended a regular nursery whilst I attended a special ed one twice a week. From then on, I was in a mainstream classroom with assistance from a classroom aid. As from nursery age through to the end of middle school, I was in intense therapy on a weekly basis. But then again, I got to the age where I was embarrassed of going to therapy, so when others asked where I was going, I would fake it and say ‘to the dentist’ instead. 

I’ve always had this thought – where do I ‘fit in’? My disability is to some extent invisible and I feel as if though no one knows how I feel as they cannot see that I am struggling. But the truth is that sometimes I do – sometimes I feel sad and lonely just because many people don’t understand. Just because it is not visible to others does not mean that I don’t have cerebral palsy and it does not mean that I am not struggling.

Because my cp is mild, everyone assumes that I can do everything at the same pace and level as them but the answer is no. This is why I feel under pressure when I am surrounded by a big group of people who I don’t know; I’m always pushing and beating myself not to do anything ‘weird’ or to do everything ‘smoothly’. 
 
I  am in a difficult situation. 
 
I like to feel at ease and just be myself, after all cp is a part of me which I cannot change. So why hide it if that’s how God made me? Surely there is a reason behind this. 
 
Now, I finally found that reason and managed to be myself and love myself for who I am. In fact, I am glad to have cp because it has made me a stronger person and I have met really wonderful and caring people along the way. I have great friends who accept me no matter what and love me for who I am. 
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‘People will only accept you if you accept yourself’
 
-Acceptance is the key!
 
~Alexandra
 
~ #Alexcandoit

Cerebral Palsy Awareness Day!

Happy cerebral palsy awareness day to everyone with CP out there! This is the day when we should all reflect back on our lives and see how far we’ve come despite the struggles we face. A year ago, I would never have thought I’d be so happy as I am now. CP has made me a stronger person, who had to fight and never give up to achieve her dreams. I am extremely grateful to everyone who has helped me along my journey – pushing me along to  watch me succeed. Last year I was hating myself for being different and not being able to do things that others could do, I wished I didn’t have CP.

However, today I am a completely different person as I’ve realised that being different is great – it makes us unique. It has made me grateful for all the little things in life. Recently I gave a short speech about myself in school for them to see that nothing is impossible and if they really want to do something they can. A disability doesn’t stop you!

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This year has been great-I have met new, amazing friends, one of which also has cerebral palsy. She is an amazing, strong and determined woman who is always willing to achieve her goals and help others. She’s inspired me, helped me accept myself and taught me how to love myself! Thanks to her, I have now become more open about my disability and won’t let it hold me back! It feels amazing to have someone that is like you, someone who you feel comfortable with and who you can be yourself with. If it wasn’t for my friends who accept me no matter what, I don’t where I’d be now. This is the best thing that has ever happened to me and I thank them for that.

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My message to all of you is if you believe you can achieve. Writing these blogs has helped me believe in myself, connect with people in a similar situation and be more open about the difficulties that I face because of CP. But, despite my difficulties, I still get through and manage to achieve great things. My life has been full of obstacles but they have made me the woman I am today!

We are able to do so much – even if we don’t think so, let’s continue fighting and working hard for success!

Happy CP Awareness Day! I am so grateful for all my supporters!! Hope you all have a great Easter xx

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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.

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.

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.

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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!