Blog #11

May all your good vibes say I got this -Unknown

 

Have you ever had a day where everything seemed to be perfect where nothing or no one could crush the happiness the most your heart could ever feel? A day where even the odd spot of rain couldn’t rub the smile off your face? Well July the 4th was that day for me, a day I would love to relive, not to change anything but just to do it all again.
Although the wedding was only a few months ago, time slowly slips away and I find myself recollecting my thoughts. Before the wedding I struggled coming to terms with our wedding day almost not reaching perfection. I always envisaged walking in some sort of way towards Nelly who would be waiting for me at the alter or even just standing with him at the alter. But with a month to go a chest infection took over my plans. A chest infection with a spinal cord injury can be serious. With my injury all the muscles that control my breathing are paralysed, the intercostal and abdominal muscles, which means my breathing is done solely by the diaphragm. I also have the inability to cough properly, which is of major importance as failure to remove dust; mucus or saliva from the lungs can lead to infection, which is what I battled with up until the wedding day. The doctor ideally wanted me to go to hospital, just incase I needed to be given antibiotics intravenously so the infection wouldn’t lead to pneumonia but at the same time was concerned that I might catch a secondary infection. In the end the Doctor decided it would be better for me to stay at home with regular contact with herself and put in place the home support of a Physio who would come in daily to help and show me breathing exercises to loosen the mucus. After 2 courses of antibiotics, different inhalers and the use of a nebulizer I started feeling a lot better, which was a massive relief to us all. Unfortunately no gym for 3 weeks, lack of practice standing (as I didn’t have the strength to hold myself up), my plans to stand were ruined which for me were upsetting and extremely hard to deal with. I felt it was the closest thing to me feeling normal, but the only thing that kept me going which was more important than standing was marrying Nelly.
I found planning our wedding day bitter sweet, sometimes it felt like a sanctuary for me, as it was a way in which I could almost forget what my life had become as it was so easy getting lost in the beautiful wedding preparations but at the same time accepting that I couldn’t add the hand made touches I always thought I would do. At times this was so hard, but the hardest thing of all for me was still not ever seeing what my dress would look like if I were standing. Many people have asked how I felt on the morning of our wedding day and I can honestly say I was hardly nervous! When I was 16 I used to work in the Tea Gardens that is located in middle of my village and on one sunny Saturday in 2006 I witnessed a neighbour’s daughter walking down the road, her wedding dress floating as she walked with her dad, mum and bridesmaids to the church. There was something so beautiful about seeing someone walk through the village with the sound of the wedding bells I just couldn’t forget it, so that’s what I said I wanted to do when I got married and that’s exactly what I did in my own way. For the walk to the church all my troubles and fears of the past 4 years completely went and for once my mind was absence of sadness. Seeing local people out and about and wanting to talk to me would of once scared me, but this day their wishes of good luck made me feel happy and special. They say safety in numbers and I certainly had that with my entourage of special loved ones around me making our way down to those church bells ringing. I was in the moment and for once I didn’t want it to end.
I think I’m going to be one of those people when I’m older that will always bring the wedding album out and watch our wedding video at every opportunity with friends, family or grandchildren as it was such a unique and happy day that deserves not to be forgotten. I used to chuckle inside when people say they had the wedding blues after their wedding day. I couldn’t quite understand why they got upset over a day that had been and gone, but now coming through the other side of our wedding day I can now say yep to that I know how it feels!
I’ve tried to keep myself busy with getting back into the gym as Nelly has this ability to think of new exercises to keep me interested and it certainly works. I’ve always been sporty and I couldn’t imagine not doing any type of physical exercise. Since day one I feel I’ve been true to myself in a way that I’ve never given up, there’s a fine line between accepting what’s happened and giving up. At the start, I battled daily to accept what had happened, I argued and despised every person who told me to accept it, I hated myself, and I screamed and cried most days, everyday! for probably about two years. There were days when I didn’t leave my bed, days when I didn’t eat and in full honesty days when I’d rather not been here anymore. I still haven’t quite accepted it, I will never quite accept what’s happened as I would be giving up on everything I am about, so instead I’m accepting each day as it is as everyday to me is my story, it doesn’t have a middle or an end anymore it’s just a story that only has a beginning that will never stop until I’ve become 100% me again. Each day I learn something new about myself and I find each day can certainly have different ups and downs. I’ve learnt that my strength in my arms has got stronger, I’m able to pick things up in my arms and hold them for a time, for example my iPad and hand it to someone, it may not sound a lot, but to me it’s another little victory. When I first became paralysed I couldn’t move anything, prospects were pretty grim, it would of been easy for me and everyone around me to listen and accept what the consultants told me, but why should I be the unlucky one at 22 to have everything taken away from me? Instead I just didn’t listen and for once it was the best thing I did as I have improved so much and it’s not going to end here! Don’t get me wrong, I still have those days where I struggle to understand my life, cry at someone I see just walking down the road or cry at the cherished memories I keep so close to my heart that I desperately want to be able to do again but I know it’s only me being human. A quiet whisper to myself of I will try again tomorrow to be more positive seems to help and 9 times out of 10 that works. I know I am one of the lucky ones, I’ve experienced and witnessed stories where people have been dealt a worse card than me not just through a SCI but through cancer too and there’s a constant reminder of their names in my mind everyday.
Today is the 5th November a day I will never forget, not because of Guy Fawkes but because it marks another year of being a different me. It now 4 years since my life changed dramatically, 4 years since Nelly’s life changed, 4 year’s since my family’s lives have changed. There was a time I would enjoy this day, bonfire night, going to watch fireworks somewhere but we don’t remember it as bonfire night anymore and no one has to even be reminded but it’s the night that changed everything. Living with paralysis is hard, my independence has been taken from me and it’s something I won’t get back for a long time. Paralysis is cruel, not only for me but for my loved ones. Being wheelchair bound is something I hate. I HATE every single second of it.
Finding positives use to be such a struggle, days spent in bed counting objects in my room to waste time away, finding reason not to get out, as I didn’t want to sit in my wheelchair or even exist. Being paralysed has tainted me, you have to get used to many things, being excluded, to not even being able to get the wheelchair under a table to eat when your out. I find it easier staying at home where I feel comfortable. I’ll never get back the confidence I’ve lost and unfortunately each day goes by where I forget how it felt to be normal. It’s sad how standing makes me feel sick, dizzy and uncomfortable it’s not a natural thing for me to do anymore. November the 5th is a day I’m always going to hate but the last 4 years, WOW you’ve been a journey. I’ve certainly learnt a lot, no matter what happens or how bad it seems today, life still just carries on and trust me it’ll be better tomorrow. It’s easy to remember the tough times and forget the amazing times but out of all of this I have certainly met some amazing people. I have found strength and hope through some dark dark days, found a very deep bond with Nelly that nothing will ever beat and became someone I am proud of. My life so far has known suffering, struggle, loss, grief and I’ve somehow found my way out of the depths with help. I have an appreciation for life now and although at times I forget I’m soon reminded when the person staring back at me is Nelly and everything seems manageable again, after all very little is needed to make a happy life. I know one day everything will eventually connect together, I will never give up and as I have said before, keep dreaming and one day my dreams will come true. Until then I’ll carry on creating victories, making new chapters in my life and experiencing awesome new adventures. Today is a day I’ll never forget what I’ve lost, but I did find something out about myself, how strong I am… because being strong was the only choice I had. From the 5th November 2011 being completely paralysed not being able to move anything, being scared in a hospital bed not knowing what was happening to me to 5th November 2015 having upper body movement, being energised and happily married. There have been many victories that have been made from a single thread of hope and I’ll always tell myself yep I can still do this not just for myself but also for everyone that has supported and been there for me these past 4 years.

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2 Comments

  1. Gilly Salter says:

    Your strength , determination and stories about your journey continue to inspire and 4 yeRs on you have achieved so much . Proud of you both xx

  2. Fay Olley says:

    Love reading your blogs and hearing details from Charlotte. You are an inspiration to everyone – keep smiling xx

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