A few weeks ago, I realised that I’ve never shared my story on NSTP so I thought it was time and I couldn’t think of a better time than National Cerebral Palsy Awareness Day.
I was a premature baby by 5 weeks, it was apparent from birth that something was wrong as I was in intensive care for 2 weeks and during this time, I was having regular seizures. I eventually got my diagnosis of spastic CP when I was 18 months old with my official diagnosis being Spastic Diplegia Cerebral Palsy with ataxic/ dystonic features however as my parents had no experience with CP they didn’t know what to expect. It was more apparent as to how my CP was going to affect me when my younger sister was developing faster than me. But my parents were very determined to help me, for example, making me walk and doing my physiotherapy with me, I believe if it wasn’t for them, I wouldn’t be able to achieve the things I’m doing today.
So once I was diagnosed, I was obviously back and forth to the hospital. CP affects me in all 4 limbs, pelvis, trunk, head control also my speech is affected. My cerebral palsy affects both fine and gross motor skills, I can walk short distances like around the house but most of the time I use either a manual or electric wheelchair.
I always have kept active doing dance lessons, drama lessons, swimming lessons, tennis lessons, horse riding and wheelchair basketball. I have never let my disability stop me as you can tell from this list. Some days are good but others my CP really gets the better of me and I struggle just to do a simple task as I can use up to 5 times as much energy as most people, so it is very tiring at times. I do get frustrated at times when I can’t do my hair or put my jewellery on but am I very lucky to have my family help me in do these little things.
But even though my body doesn’t function as easily as others it doesn’t stop me I am currently at university studying occupational therapy, of which I would have never chosen this career path it wasn’t for my previous experience with OT. I’m loving life at university and I believe that occupational therapy is the perfect course for me. However, at times I do wish that I was able to live more of the ‘student university life’ as being so dependent on my parents means that living in halls would have been extremely difficult for me as all my energy would have gone into looking after myself rather than focusing on my work. I still go on nights and days out with my university friends although I do wish that I could go on a night out more often as there have been a few occasions where I’ve had to turn a night out down due to fatigue. Not only this but as a result of CP, I also have epilepsy, so I must make sure I’m fully fit for a night out.
Having CP means that a few hurdles crop up when least expecting, but with the right attitude and determination, I will get over these hurdles. I am lucky to have a very supportive family that are behind me 100% as some days even though I don’t want to admit it I do need help.
CP awareness month means a lot to me as it gives me the opportunity to write blogs like this because people often think that as a result of my CP I just get more fatigue- when in fact it’s much more complex. I also love this month as then I can read other stories about CP and learn a lot more as no 2 people with CP have the same needs. I wanted to share my story to enable people to get a glimpse of what goes on behind closed doors. I consider myself extremely lucky that my disability isn’t life-threatening and that I am able to live a fulfilled life however I still face challenges daily. Facing these challenges can be frustrating but I would never choose a life without CP as without CP I wouldn’t be the person I am today.
Happy CP awareness month 2019!!
Thank you for reading I hope I have given you just a little bit more insight into Cerebral Palsy.