Life update!

Happy CP Awareness Day to all my fellow cerebral palsy warriors out there! Since it’s a day for spreading awareness, why not share a little life update…

As my CP is mild, after being discharged from physiotherapy at a young age, I’ve always walked independently & confidently. My emotional issues have always outweighed the physical. But… as an adult, I’ve started to encounter more physical difficulties and insecurities on top of my pain.  

A few months ago, I found myself tripping a lot & losing my balance so much so that I had two falls in the space of a month. Thus, I feel very unstable & have to be very cautious when I’m walking alone – I have never felt this way before! 

So I was fitted with an ankle brace due to my foot drop. Honestly, it’s great in that it helps me lift my foot up so I don’t trip but it is hard to come to terms with it all. As I’ve always said I consider myself lucky to have mild CP, but it is still difficult to manage emotionally and physically. When I wear my brace I am constantly reminded of the fact that I do need help and I’m not as physically fit as I would like to be. 

Having to wear a splint in my mid 20s feels strange as I’ve never had to wear one during my childhood. Although I’m struggling to accept my new reality, I always remind myself that things could be worse. 

I’m slowly learning to take each day as it comes and some will be better than others. It’s ok not to be ok and having a great support system really helps during my difficult days. 

Would’ve never believed I’d come this far!

Two years ago I had many doubts about studying French at uni – even though it was my favorite subject. All these negative thoughts kept popping up and I was going through a hard time when it came to the oral component.

So I started seeing a speech therapist again to help me get through this barrier. We were working on the oral every week, building up towards the exam. This caused me so much stress that I decided I wasn’t going to do French and turned towards psychology.

But my teacher wasn’t happy with this. She spoke to me individually trying to change my mind. And the tears just didn’t stop… I thought it would be impossible to do it! She helped me see that uni could put special arrangements in place and that it could be done.

I always knew it would be a challenge but with the support of my family and professionals, I was determined to give it a go.

So here I am in my second year, planning to study abroad in April and to work in France next academic year – who would’ve thought of that! I’ve done many orals (in front of the class too) and each time they are getting much better 😃. Today I just did my interview simulation assessment for which I was very confident and my lecturer was pleased with the outcome.

My aim is to keep working at it to become better and boost my confidence.

Never let anything stop you from doing what you want, you never know how much you can achieve!

So glad to be where I am now, I’ve accomplished so much academically 😊 I am also very lucky to have extremely supportive and understanding lecturers who are willing to do anything to help me.

Update on pain levels

Hello again,

I am glad to say that this second year at university is going extremely well compared to last year. Honestly, I was unsure whether or not I should return to university after my horrible experience last year…

But I took on the challenge! I am feeling a lot better in terms of pain and yes, there might be occasional pains here and there – after all I do have chronic pain – but I’ve learned how to cope with them. My hot water bottle is always by my side 🙂 …

I guess it’s something that you just learn to live with as time progresses.

However, today my fingers are in a lot of pain, they feel so stiff and I don’t know how to get them to relax. I’ve tried putting them in hot water for a while but they still feel the same. It’s so annoying, especially when I need to write – university notes!

Hoping it will get off soon!

 

 

 

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!! 😦

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.

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

 

Sick of pains

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? 

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. 

‘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!

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.

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

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.

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.