Carly’s Blog #4

“The man who removes a mountain begins by carrying away small stones.”

Chinese proverb

 

Many obstacles are thrown in your path of life, no matter how big or small it is, it can make such a dramatic turn and change your life forever. No matter how hard I wish things can’t change.

Every night I close my eyes and imagine living happily with my family and my close friends, the sun gleaming down on my face, laughing, walking, smiling and then I realise this was me before, so why can’t this happen again?  if you recognise the same  words and thoughts in my blog, I was told several months ago  to say how I feel and be truthful  so, sorry but I find myself repeating my thoughts because it is what I am thinking.

I have such a tight family and their support creates hope and motivation for me to get better. Through my troubled journey I have met numerous people some caring and well some not so caring, but one in particular who was so caring and gentle was my Nana. Ever since I was little she believed in me, the memories that we share they will never be forgotten. Since the accident my Nana has never given up on me, she has been my number one fan. Sadly my Nana very recently lost her fight with cancer and passed away. My Nana’ s final words to me were  to get better which I’ve promised I will do. Although I’m still angry and upset that my Nana has been taken from us I know she is still watching and those down emotional days are slowly being turned into days that are determined and worthwhile not only for me but for her. Life is painful, just like a wave you’re turned upside down never knowing where your going to end up, you could get hurt along the way or you could get lucky. I’ve definitely got hurt but millions of people have to. I read stories and think because of my situation I am lucky compared to some . I find myself looking through social network sites struggling to sympathise with the occasional moan someone has publicly put, the frequent ‘my life sucks’ to the ‘I can now get up and walk around after several days on bed rest’ are you really complaining about how hard your life is, compared to what?

A challenge can be described in many people’s life stories, in my eyes I face a challenge each day from the simplest things of getting up to exercising towards regaining a happier and stable life. Each day is different and more recently I can never tell if the day is going to be ok or bitter. It’s hard waking up to a monotonous routine, waiting to have my breakfast fed to me, having someone wash, dress, style my hair and put me in a chair. There’s no independence , no option it’s just so frustrating, who designed a life like this? If I could scream every minute of the day I would, the anger, the pain I feel there’s no way of getting this emotion out I hope as time goes on it gets easier. My mind wonders and I think of my friends enjoying themselves building a life and making things happen and I think if they’re experiencing amazing stuff why am I stuck like this. I am more open about talking about my accident, I can recollect the story but feel stronger each time the harrowing words leave my tongue. Many questions are asked and I answer but the awkward silence between my answer seems to permanently absorb me back to the night. It’s ok though, as the nightmare feels smoother than it once was not just for me but for Nelly and my family, the lining may not yet be silver but its becoming less dark. Two weeks before my accident Nelly and I were looking at properties , the next step that I could tick off my clear path in my life. We were at the stage of making a concrete life for ourselves, the excitement of the thought of driving home from university and entering your home and seeing your boyfriend. Closing my eyes the perfect picture is still there along with being able to go up to Nelly and hug him. I’m now living with my lovely parents, my brother and Nelly. It’s nice to be home don’t get me wrong, but I would love to sit in a room sometimes in utter quietness, only listening to my mind and finding peace. It’s just impossible to do now. Busy people = Chaotic house. It’ll just be peaceful if Nelly and I had an escape, a place we could call home, but till then i appreciate and soak in the love my family give me. Since my accident there hasn’t been a day without a problem, from a pinch of my skin to the loss of bladder function  can cause me to have Autonomic dysreflexia (AD). Autonomic dysreflexia is a potentially life-threatening complication. It can affect people with paralysis as a result of a spinal cord injury at the middle of the chest or higher. It is commonly seen in tetraplegia (where both the arms and legs are paralysed, also known as quadriplegia). Autonomic dysreflexia is caused by a problem with the autonomic nervous system, the part of your nervous system that regulates many of the body’s functions you don’t have to think about, such as blood pressure, digestion and breathing. Autonomic dysreflexia occurs when something interferes with the normal function of your autonomic nervous system. Your nervous system will send a signal to your brain to find out how to deal with the irritant. However, due to the injury in your spinal cord, the signal will be unable to reach your brain. The blocked signal will then trigger a series of abnormal reflexes, which cause your autonomic nervous system to raise your blood pressure and slow your heartbeat. As well as terrible mood swings which admittedly I’ve had before my accident but they have gotten more emotionally intense. The worry and stress, I constantly think about my mum who is my superstar, we’ve always been close but each day we are brought closer as she is mentally going through what I’m going through and I can’t help think and wish life was simpler for her. She nurses and looks after me, keeps the family together and puts on a pretty good brave face. Mum and Nelly are the ones who help maintain my physio each day, they are the ones who praise and motivate me and wipe my demon tears away.

I can sit and watch time and people speed by, just like a movie I’m going no where but people come and go around me. My improvements are slow and frustrating but each week I’m surprised at how far I’ve come. Nelly has made the greatest improvements like a hibiscus plant he grows with improvements in his rugby at an incredible fast pace. From making the big step of moving  clubs, to representing cornwall and to be selected to play for the English Counties Team in a tour to Belguim. I am honoured to say I’ve witnessed it all. I am with him all the way and can not stop smiling as I’m so proud of all his achievements. He totally deserves it. I hope one day he’ll be smiling just like I am when he sees me walking down the aisle.

Numerous fund raising is going on and from the bottom of my heart I appreciate every effort you guys go to, to raise money for me. I am now in the process of turning an industrial unit into a gym, this will give me space to workout and utilise my equipment which I have. Nelly will then have less stress moving the equipment in and out of our house,  the unit will allow me to escape and turn to rehab each day. The excitement for both Nelly and I is incredible, it’s a place where we can call ours and it’ll give me a chance to crack down and intensify each physio session, if things go well I am hoping to open up my gym to other SCI people as there is nothing down here for us and I would love to help others. I was lucky enough to travel up to Cambridge again, the 3 days that I have at prime physio are cherished but with it comes hard work and satisfaction. The amazing team that run the place always believe in the positive and express the improvements that I make, the 2 hours each day are tiring but well worth the complications of travelling and staying in an unfamiliar surrounding. I was lucky enough this time to go in an ekso suit, which is how I would describe a bionic suit that allows me to walk. I am strapped into a back pack and metal robotic legs, this was the first time I had walked since my accident, as well as not remembering how tall I was I was shocked how I towered over people! Emotions were tough and hard to battle with whilst concentrating on balancing my weight and off loading it on each side. I can’t sum up how I felt as it just felt weird walking but smirking at how wrong the physios and consultants were at Salisbury saying I wouldn’t be able to move anything from my shoulders down. I am now in the exclusive club of being the 3rd person in the world to walk in the ekso suit with such a high level of injury. Nothing is impossible.

Previous before my Cambridge trip I was unlucky enough to receive the dreaded letter saying I am due a check up at Salisbury. Nelly, Mum and I travelled the good 3 hours to the horrendous place they call a spinal unit. I can remember getting apprehensive but looking forward to facing my demons, nothing could have prepared me for what my so call specialist consultant said. Anyone specialising in dealing with spinal patients knows when having a SCI injury you are less physically active so maintaining a healthy weight is hard. Although I am always trying to exercise 5 days a week I can openly admit I have put on a little bit of weight since Salisbury where I was very very skinny in there due to the trauma and stress. So when a consultant doesn’t hold back any thoughts and openly asks “Are you pregnant as you’ve gained weight” my self build of getting my life back takes a blow again as my already low self esteem is knocked to pieces.  My life isn’t easy in the first place and being asked a thoughtless question took me on an emotional downward destruction for days afterwards. This was something I didn’t need and those hurtful words still ring in my ears . I find Salisbury Specialised Spinal Unit a very irritating and depressing place, especially for patients that have a higher level of injury. That place has less hope helping someone than a prison does, there is no life line and months of positive rehabilitation are none existent. It’ll never improve as it is stuck in a old fashioned believ, the majority of exercise equipment is broken and they never look at  the potential. in a patient. I knew I’d never improve if I stayed in there longer.

As of now in myself many questions are being asked, the process of improving is gradual and at times I can not see a way forward. I’m scared about the present and future of my life as now I can see a clear bitter taste between my life and everyone else’s. I need to move on but it feels so hard, as a child we grasp and hold on to anything we can and we would keep holding on as we’re too scared to let go. The thought of letting go meant giving up and quitting, but as we grow older we have to accept and change the way we think. So now I’m trying to accept things and move on, I’m battling with myself as I feel  the old me may just pop up and save me. I promise to myself everyday that I won’t give up, when the dark days surround me I will take shelter until they go and embrace everything and anything that makes me smile. Recently I’ve made a trip to Twickenham to watch Nelly play rugby for Cornwall. Having to adapt to a new situation isn’t straight forward, although we thought we were organised unfortunately the parking situation wasn’t ideal. Many disabled parking spaces at the ground were used so we had to park in Tesco’s car park and take pot luck with the disabled parking ….not ideal. Once I finally arrived at the stadium the tingles and my smile was present, the crowd overwhelmed me in a happy way and I thought to myself how lucky I am to be experiencing this with Nelly. His ora is so powerful with his positive attitude that it does occasionally brush off on me. The achievements he makes are shared with me and his family.

Many people ask me what my main goal is, I would love to say to run a marathon, but the past 18 months I’ve matured and learnt I’ll never be like I use to be, that was once me but its now a ghost. Just like my little girls dream, a white wedding with me walking with my dad down the aisle to meet Nelly would be my ultimate goal, this purpose is what gives my life a meaning.  I won’t give up, it’s easy to but I thrive off challenges and deep down I know it will happen as all this crushed heartache will soon repair as so will my body. Having Nelly makes me fight for a better life, his love gives me strength and with me loving him gives me courage. It will happen and bring on that day.

I enjoy talking to others and sharing my wild adventures, along the way I’ve met others who inspire me. The success they show is not measured by the position that they’ve found themselves in but by the obstacles that they have overcome trying to succeed. I sometimes find my hope has disappeared but talking to someone is the greatest key for me getting back on track. Without inspiration the best powers of our mind will remain thoughts, everyone has the power that can create a masterpiece. Nothing is ever easy, some people achieve greater things than others but as they say life is what you make of it and if it takes me years to walk then so be it. The truth is finding some kind of happiness is hard, the struggles counteract anything that is near enough perfect, the happy ending isn’t in sight but maybe it’ll pop up one day and help save me from this horrible situation. I wish I could tear down the past and re write this story, I would make it have a happy ending. They also say things do happen for a reason but I still haven’t figured out why this has happened to me. I appreciate having another chance at making my situation better and I look forward to the day when a cure is here and I can turn to Nelly and finally tell him everything will be ok.

 

 

 

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4 Comments

  1. tanya chick says:

    Ive never actually met you carly….but have always heard amazing things about you from nelly..who I used to go to school and college with….but just wanted to say this is the most emotional and inspiring piece of writing I have ever read. Im so glad that you and nelly have each other and I believe if you want or believe in something hard enough your dreams will eventually come true. … all your determination and focus will pay off and ive got faith that you will both live happily ever after…..bad things sometimes happen to good people but the world will end up rectifying its mistake in the end! Good luck with all your training and I hope you both get everything you want together in the near future 🙂 xx

  2. Mandy says:

    Hello Carly. Having just read your blog it has given me a insight into how my Dad must be feeling. He is currently in Sailsbury he’s been there since Feb. he had a back operation Dec and it went wrong he is now T4-T5 paraplegic. We’re going through the motions of trying to get the equipment so he can return home. But everything is a constant battle.
    I have heard about your accident through Caroline, we work together.
    Keep up the good work. It is inspiring and I will talk to dad about your physio and how well you are doing. It may give him hope.
    Remember it’s still early days. But look what you achieved up till now in that short time.
    Thank you for your honesty I look forward to blog #5 .

    Mandy

  3. Stephen Haynes says:

    Hi Carly – I heard about your story whilst on holiday in Crantock from someone who lives locally. Like yourself our son has a spinal chord injury (C5/6 incomplete) following an accident nearly 2 years ago. I think we have some idea what you and your family have been through and the challenges you continue to face on a daily basis. I just wanted to say how brave you are in putting down all your thoughts in such an inspiring blog. I’m sure you will go onto have a great life and I wish you all the very best for the future. Kind regards Steve

  4. Caron Lawton says:

    Hi Carly
    I guess you will be receiving lots of messages since the programme aired last night so here’s another one !
    I have compression vertebrae fractures and and fractured bones in both feet following a car accident – which happened abroad and foreign hospitals in rural Croatia are not fun places! three months down the line it’s a struggle . I awoke this morning in pain again but I’m lucky – because pain means I can feel and also after a period of time I will get better. I read your blog I took my painkillers and I am going on a Christmas shopping trip with my friend to our local shops – in the wheelchair I hate !
    You are truly inspirational – you must have heard that hundreds of times – but they are not hollow words -you are a beautiful woman and you are a beautiful couple
    It is just so clear that Nelly would rather have you in your condition(- any condition ! !) than to be without you .Life is so not fair and there is no small nugget of gold inspiration anyone can say about your situation that will make it more bearable – I keep thinking of the pathetic phrase “why me?” But then “why not me ?” !! Because life’s not bloody fair I answer !!!
    Anyway I wish you all the luck hope and love in the world beautiful lady , lots of people are thinking about you , and hopefully making donations to your fund ! ( which I will do when I muster the energy to tackle the stairs from my bedroom to get my purse !!
    Ps you write beautifully – did you do an English degree ?!
    Caron xx

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