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Carly’s Blog #5

Time is too slow for those who wait, too swift for those who fear, too long for those who grieve, too short for those who rejoice, but for those who love, time is eternity- Henry Van Dyke.

 

How to dismantle a far from perfect life? Well whatever your answer maybe its probably right but I’m finding that perfecting my shoddy life is very tricky its almost like watching someone solve a difficult puzzle, easy to watch but harder to do yourself. I’m always so tired recently and every breath I take almost doesn’t seem enough, my spasms are worse, my nerve pain is more intense. Each night I deal with the constant reminder that falling asleep isn’t easy for me anymore. Settling down for bed is a set routine, the positioning of my body, the exact hip alignment and my OCD on my pillows, which have to be exactly right to support my neck. The night time spasms that grab me and then send my body in a tight lock, the distress of not knowing why these pains are happening is terrifying. Through the last year and a bit I’d say I’m quite in tuned with my body I know what’s right and what isn’t right with it.

I haven’t been feeling quite right recently and with the onset of these worsen spasms it is a process of elimination. The most obvious problem is UTIs (urinary tract infections) which are quite common with a spinal injury, in fact I have had 4 in the last 2 months and have had numerous types of antibiotics which has cleared them up, so is there maybe something else wrong? Whilst in Salisbury I was told I had a Syringomyelia, which is a cyst or cavity that contains fluid that forms within the spinal cord which formed below my level of injury. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. I had 2 MRI scans to check up on the syrinx and a year ago it hadn’t got any bigger, I just can’t help thinking what if all this not feeling right could be down to the syrinx expanding. I must get a scan so then I can reassure myself that everything will be ok, as I know it’s the only way for me to relax and not worry. These cyst may look beautiful on a coloured MRI scanner as the consult in Salisbury said but I don’t want these beauties in me anymore! I just wish they would shrink, as I’d hate for the movement I have regained to disappear, it feels like a time bomb. I need to speak to the doctor.

Summer seemed so long ago, but this year was a better summer in many ways, the weather was better and I felt physically stronger and a little more at ease. The sun can always create a blissful picture, make a city look beautiful and turn a dull gloomy room into a light perfect sanctuary.

Looking back a few months I see myself dressed for the summer, I have my colourful dress on, trying to look nice but I hate it. I change into another outfit but I’m not feeling it, I then remind myself that this isn’t me it’s just a progression and this person that I’m staring at won’t be the same next year. Nothing fits me right, my clothes mark me as I’m constantly sitting on a crease, which causes red marks on my skin, and if they are not noticed can turn into pressure sores, which would then mean having to stay in bed to take the pressure off the sores for possibly several weeks so the skin can clear up. While I was up in Salisbury towards the end of my stay a lady came in, as she had to have plastic surgery to cut out very bad pressure sores as she didn’t bother to check her skin and didn’t check what she sat on. I certainly don’t want that to happen to me but the clothes I see on the websites, that I think look nice are usually on models that are standing up! Why don’t fashion labels picture models sitting down in their clothes, it’ll be nice to see what an outfit looks like in a sitting position.  I use to love the summer, dressing pretty, surfing, beach, socializing. I wish for that life back but now I’m trying to create a new summer for me but I just can’t help recollecting my thoughts, it’s just my summertime sadness. When it’s hot and I’m stuck in the same position I panic, as not being able to regulate my body temperature is so hard because of my injury. I feel like a boiler, sizzling away and until I get moved I’m cooking! The breeze on my face relaxes me and relieves me from the scorching heat. The quietness and tranquility my garden gives me and the occasional tickle from Dora brushing past me reassures me that I’m not on my own. Even though teardrops fall down my face are not as frequent as I am more content with my life and myself, I can still feel sad. I find myself dreaming about walking and consciously I’m aware of my injury but I’m still walking with crutches, maybe this is a test for me to keep fighting I will never know, its just a reoccurring dream. I describe my spinal cord as a wire in an electrical circuit, it needs a connection to work but unfortunately the connection has been lost/obstructed so my body won’t properly work. There are still many nerve connections in my body which well and truly fire off and I’m just finding a way to work and control them, then it’ll be a perfect connection and that’s what I’m working hard on. The exercises I do I’m always trying to link my muscles up to movement and the energy recently I have felt it is as if my legs are ready to explode. My arm strength has increased and I’ve found that every so often I can do something new, something that to anyone else is just taken for granted but suddenly for me I realize that I can lift my right arm a little higher than I could do 5 weeks ago. It hasn’t suddenly happened overnight and it’s quite hard to explain but you get used to being in a situation and without attempting to try and do things for yourselves sometimes you never know if you can do it. It’s amazing how complex your body is and I’m definitely finding out this each time I do something.  I was told it’s retraining my brain as the circuit has been cut and sometimes the circuit finds a way around. I’m having to retrain each movement as my little brain is slowly figuring out that its been here before. I understand how hard people can find life; there are many people who are going through a similar situation to me not just people with a SCI but also people who have different medical problems. I have a lot of respect for whoever is fighting to get their lives back, it’s hard, tragic, frustrating but it’s worthwhile. Although I’m a long way down on my ladder there is no way I’m falling down, I’m here until I get the life I dream about back.

I have many friends who help me through these rough seas; they are amazing and so supportive and incredible. A lady asked my Mum the other day “Does Carly’s friends still visit her”? I’m not sure what this lady was thinking as I’m still Carly Taylor, I look the same, I haven’t grown another head, I just can’t move like I want to. I get fed up and frustrated but on a good day I can still have a real good laugh. My true and loyal friends are hanging in there with me and yes they do visit me regularly! I have also made new friends since my accident, and if it wasn’t for my accident our paths might never have crossed, life is so strange, they always say from a negative thing comes something positive! I try and surround my life with love from my true friends and family, I know they will always be there for me I don’t even have to talk when they’re with me as their presence fills me with contentment and bubbles of reassurance. I am blessed with many loyal friends who give up their time and fundraise for me. Fund raising events and challenges that go on around the country and every single one is fantastic and it’s one of the inspiring things that keeps me strong and committed to finishing my challenge of being me again, as I don’t want to let them down. People that I have never met but have heard of my injury via friends of a friend and have sent me donations from fund raising, so much amazing support; Thank you. I say these two words so many times but it is said with heartfelt gratitude.

Luck has been given to me, luck came from bad luck and saved my life, let’s face it I could of been given worse luck than the situation I’m in now. You’ll never find luck until you’ve been given a perspective of some sort. I always try and remember no matter how hard I find life there’s someone worse off than me and we should all think like this. There are still selfish moments where I breakdown and scream and moan how unfair this is but I find myself rewinding these phrases and picture someone in a worse situation, then I’m fine again. Nelly and I always talk about our pathways in life, we share, meeting each other was meant to be and was written somewhere in a story. The options and movements in my life were pointing me into an incredible direction and at one point I took the wrong way but I’m still here is that fate? Fate to me is like a strange, foreign, unpopular restaurant that is filled with odd waiters who bring you things you’ve never asked for and you may not necessary like, if only you could send the order back.

A set routine is key to my rehabilitation; I know I’m very lucky to have Nelly who supports me near enough each day with physio at my gym!  He is a very hard taskmaster and doesn’t allow me to do anything half-heartedly. It’s always a heated several hours at the gym in more ways than one, but no one does it better than Nelly he knows how to push me and the improvements are outstanding. It’s amazing how exercise can make me feel better, I was use to an incredible fast moving pace of life before my accident, sitting working and waiting patiently to me is near enough impossible. Every word that could describe slowness and laziness is knocking about in my impatient, perfectionistic mind. I can’t explain how I feel after exercise, but it mentally allows me to escape and protect myself from sadness. The understanding of the word “hard work” can be seen in my tired but smiley face. To me rehab is my work. I would love to get up each day and go to “work”; I miss that sort of interaction. I would do anything to get back some sort of normality, if anyone can think of anything let me know!

The last year I have been a busy bee, without Nelly knowing my Mum and I have been setting him up to go on ITV Surprise Surprise. Some of you may personally know Nelly others may have heard of him but he has been my total rock especially over these last 2 years and well I wanted to do something for him. Through secret meetings and many phone calls while Nelly was out at rugby training and still not knowing if my request had been totally successful I found myself getting happy and eventually stressed about the situation! Nelly, myself, mum and Kelly ventured to London on what Nelly thought was an interview with ITV about SCI. With Nelly having a slight suspicion about what was going on when we were up there he definitely wouldn’t have guessed the outcome and neither did I! Talking about what happened feels surreal and crazy but Nelly got his wish of meeting Johnny Wilkinson  which was what I was hoping was going to happen but me receiving the FES bike thanks to Anatomical Concepts was an emotional, overwhelming experience for both myself and Nelly. The FES bike stimulates the muscles, which then allows my legs to move with help from the machine, this has such a positive impact on my rehabilitation. With both Nelly and myself full of happy tears, we were then told we are going to Miami for treatment. Unbelievable!

 

The show was aired October 6th, it was near enough impossible keeping everything secret but it was so worth it. Watching the programme made me reflect on how far I’ve come and what I’ve now achieved. Every emotion was showed throughout the episode and even though the situation isn’t great, there’s a positive that has come out of it, bitter sweet really. Not only was the show aired on my and Nelly’s 4th year anniversary, that day I became the future Mrs. Webber. Nelly proposed to me in Cardinham Woods, which was a very special place as it had sentimental value to me, as it was the first place I ventured publically after the accident. It was such a perfect day I didn’t want it to end; it was and still is an exciting, magical and truly amazing next chapter of our lives. Having a wedding to focus on has given me a challenge to keep being strong and to work twice as hard, as I know time doesn’t wait for no man and if I could get married tomorrow…believe me I would. I never knew a love for one person could be so strong and pure, Nelly is my meaning to the word inspiration and has given me everything that I’ve ever wanted but I know staying true to myself is key to everything that I’m fighting for. My wish may be laughable to some but I will walk down the aisle some way or the other, it will happen I promise. Many things have happened throughout these months, bad things have happened and well, being told my syrinx has got bigger is one thing that I didn’t want to know. The unknown terrifies me, the thought of the syrinx increasing in size deflates me and I feel empty and frightened.

It’s hard how I feel about everything, perhaps two emotions that mix into one? . Overwhelmed by happiness but struck at the same time with sadness. Improvements are now recognised physically and mentally, as much as I hate being stuck in a wheelchair I know life must go on and the way forward is to show everyone the not so carved in stone me. The nerves and awkwardness I feel whilst I’m out in public may never change, but knowing I’ll never be alone gives me enough confidence to pull myself through these situations. Not now but one day I will be able to give hope and help back to whoever needs it. A couple of weeks ago I wanted to show family and friends how much Nelly and I appreciate the love and support we receive from them. We held a small gathering to celebrate with us our engagement and trust me if the venue was bigger more would have been invited! The night was perfect, relaxing and full of love. Seeing friends and family who mean so much to me and Nelly made me happy but teary, as much as I hate being the way I am and how I looked having everyone round me meant so much. Overpowered and moved by everyone’s positive and kindness kept the demons at bay and I couldn’t thank you all enough. What a magical night.

Gradually you slip back into the normal daily events of life and no matter how hard it is always promise to never give up on your dreams and some of these will be the dreams you never thought would come true. There are ripples of destiny in the water when you least expect them and some come towards you so fast they’re uncontrollable and others flow past so slow you can hardly feel them. But these ripples can’t be ignored, bringing as often as they do a future impossible to ignore.

 

It’s now another waiting game for me as I’m now being referred to a neurosurgeon and this is where I am now. Hopefully the bad news will only be a few pages in my life compared to all of the overwhelming happiness I’ve had and will have in the future. With all of this in mind in three words can sum everything I’ve learnt about life so far, life goes on.

 

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3 Comments

  1. Tina McMurdo says:

    Dear Carly,
    I met you when you came out to Bahrain to play in the Intergulf Tournament.
    I was the Medic and my daughters played in the Bahrain A Team.
    Watching you and your team mates was a wonderful display and my daughters especially my GA playing daughter learnt so much to help improve her play!
    We are so proud of your determination, courage and strength of character to move forward! Keep up the fight, you will prevail!
    A huge Congratulations on your happy engagement to Nelly! Wow what a wonderful man you have there! I am so glad you have such a wonderful man who will support you and encourage you to continue to improve!
    As an Adult and Neonatal Intensive Care nurse, I totally know the mental and physical hardships you must be going through! Hang tough and keep your chin up as much as possible! Everyone is praying for you to move closer to you goals!
    All the Best for the Future!
    Tina

  2. Sue Gilbert says:

    I have never met you but this came up on my news feed on fb, you sound like an amazing young lady, i hope you achieve everything in life you wish for – good luck to you and your man, never give up hope xx

  3. Mel Goosen says:

    Hi Carly, I met you when you came out to Bahrain and i would just like to say how truly inspirational you are. I love reading your blog. You are a gifted writer. It would be amazing to put all your blogs into a book. Im sure people all over the world would find your story very uplifting. You are a fighter and your trust couldnt be more aptly named. You are truly a wonderful woman and i wish you many congratulations on your engagement.

    xxx

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