Being Paralysed doesn’t just mean I use a wheelchair

22nd bday

When I landed 50 foot below the balcony that I had just jumped from I was instantly paralysed, screaming “I can’t move”  “I Cant feel my legs” and “I don’t want to die”. Even if I wasn’t psychotic at this point, I still wouldn’t have realised what this then meant for me for the rest of my life.

Having a spinal injury and being paralysed means a lot more than most people assume. There are all sorts of medical, physical and psychological difficulties that come with it. I must have cried every day for well over a year after my accident. I was grieving for the loss. Loosing the function and sensation of my legs was devastating and everything I had previously known was now different. I was in hospital 5 months but the last 10 weeks were in a rehab. I was allowed home at the weekends in rehab. I couldn’t wait to go home but when I got there it wasn’t all that great. I really believed when I got home I would feel better but it actually made me feel worse. I couldn’t get upstairs to my room or even get in the toilet downstairs. The house hadn’t been adapted so there were steps and obstacles. Every time I came across something that was different to how I would of done things before my accident, I would just cry. Even though I wasn’t happy at home I really hated going back to hospital on the sunday, I didn’t want to be anywhere. I didn’t want to exist at all.

second neck brace

One of the most heart breaking things was knowing people close to me were so affected by me being paralysed. But I couldn’t hide the sadness in my face. Or frustration with things that were now different. My dad, my sister and other friends and family would cry because they were just so sad for me and they wanted to help but there wasn’t anything they could do or say to bring my old life and body back. It felt awful that it was me making them so sad. Its been incredibly hard for me to adjust to my new way of life but its been equally very hard for my loved ones watching me in them first few years. I cant imagine how upset they would have been when they heard the news of my accident and then visiting me for the first time laid on my back unable to move. How were they supposed to respond when I would cry and say “I’m never going to be happy, I cant walk”.
When I eventually came home my Mum found it so difficult to watch me lay in bed or on the sofa crying and sleeping all day every day. But I just couldn’t just put on a brave face, being paralysed wasn’t something I could escape from. I just wanted to shut off from reality so I just slept all the time.

To begin with I didn’t want to see anyone. I would sometimes avoid having friends come over , I just couldn’t bare to be seen so low and depressed and I knew that all I would do was cry. Of course my friends were persistent and would just come over, even if it was just sitting in silence, they were there.

me kez jess

I cant fault the support I have had. I still felt lonely in my own head though, its hard to put into words. I felt like there was nothing or anyone I could relate to anymore. Going into social situations was incredibly difficult as I would sit there in silence and just look at everyone wishing I was them having fun. I never really laughed anymore. I would go out but quite often my friends would end up bringing me home in tears just because it was too much. If you were to meet today I am mentally a million miles away from the person I became after my accident. Most people would probably describe me as outgoing, chatty and quite loud! Today Occasionally I will have a cry about everything and reflect back but its not something I Dwell on anymore.

There are lots of things I could sit and feel sorry for myself about. But I don’t.

me jen nay

I may sometimes message my friends having a little moan about things but then I move on. Like the fact I cant feel when I need the loo anymore, or control going to the loo. Spinal injuries are complex, for me the level I injured my spine, meant that from the hips down I have partial sensation and function. I cant feel parts of my legs, my feet I cant feel at all or move. My injury meant that I lost complete sensation and control of bladder and bowels. Its horrible leaving the house everyday knowing that at any point I could have an accident, mainly bladder. And yes it has happened. A few years ago I had an operation on my bladder which has helped hugely with the accidents. To be honest though I blame my friends for some of them accidents because they would make me laugh so much! The operation hasn’t brought the sensation back or function, thats something that will never return. So I just guess when I need the loo, or time it every three hours. And I use cafeters to go the loo. It is something very embarrassing to talk about but it is my reality.

happiness

A huge difficulty that has come with my spinal injury is the amount of pain I experience. Its chronic neuropathic pain I feel in my feet and legs and it is caused from where my spinal cord in my back was damaged when I had my accident. It started the year I came out of hospital, so I have had it five years now. Words fail me when describing what this pain is like, there is nothing I can compare it to. Getting a headache now feels like a breeze. And the worst thing is that no medication works on it, not even the opiates like morphine. When you experience a headache it is your nerves telling your brain you have a headache but when its your actual nerves that are damaged you cannot treat it. Some days/years are worse than others. The day my best friend got married, unfortunately I experienced such strong pain, It was such a beautiful lovely day and I was so happy to see my friends so happy.  I was bridesmaid for her , the pain really did cripple me though and it was hard not to cry.  Luckily by the evening it finally eased off a bit and I was able to get out of my chair and  have a dance with the beautiful bride.

jesses wedding

For the last six months my pain has reduced by half which has literally been amazing! I can actually sometimes sleep at night and go out and do things more often. Before this year I had a period of about two years where the pain was 10/10 for strength and is was every single day, and thats no exaggeration . It was honestly the hardest thing I have ever had to deal with. Not sleeping for days on end was unexplainable. It was just a miserable quality of life. I was forced to drop out of university at the end of my second year. For the last year I was there I would lay in bed literally everyday, the pain was so intense, somedays I couldn’t even get to my wheelchair. I didn’t eat because I couldn’t physically get to the shop or make and prepare anything or I would eat for comfort by ordering takeaways at 4 am. I used to ring my parents everyday in tears as It just hurt so much. They would offer to come pick me up but I would always say no . Im really proud of myself for sticking it out though and staying living there till the end of the year but I just couldn’t possibly face another year of that. And I made some great friends who I am still in contact with. We did have some fun nights out In between the chronic pain , but usually I was drinking to try numb the pain. 

winos

If you have seen me out and see me shaking my legs, its not that I’m having a spasm, that is my attempt of trying to shake away the pain, it actually does nothing at all to reduce the pain but its something I do when I get the shooting pains. Last year I was screaming because of the pain and had the ambulance out at 3 in the morning but all they could offer me was gas and air , which didn’t help at all. It shoots , stabs, burns etc and there is no escaping it. Sometimes its in both feet/legs and it can be in five different places all at once. And it doesn’t just last a few hours , it’ll last days at a time. I do live in fear that it’ll suddenly come back to the severity it can be and that I am going to have to suffer from pain for the rest of my life. But for the moment I am making the most of being in less pain!!

red top

Having a spinal injury means constantly being at hospital or doctors!  In the last two years I have been to A and E four times for various occurrences because of my spinal injury. I am under the care of four different hospitals in various places in the country. The worst thing to have happened (other than the pain) since my accident is that I burnt my foot very very badly.

Last November 2014, I completely forgot that I couldn’t feel my feet. I was sitting infont of the stove/rayburn and had one foot pressed flat down up against it. I suddenly looked at my foot and was like O GOD and pulled it away. A realisation swamped me. I looked at the dial and it was well over 250 degrees. I immediately took my sock off , the whole bottom of my foot had turned white. I went straight to A and E and I had suffered third degree burns. It sounds silly and odd to explain how this burn happend to people. One of the nurses in A and E asked me whether I had been playing a game! (As if a 24 year old plays a game- Who can leave their foot on the stove the longest?!). That comment did make me laugh! It was very scary to begin with not knowing what this burn now meant. I was later told by a nurse that I was very lucky it didn’t get amputated. If my foot had been on there any longer I would now only have one foot. Once again I count myself as very lucky. I don’t even know how long my foot was on there for. The plastic surgeon said that they couldn’t skin graft , as the skin on your heel and foot is unlike any other skin on the body. Its really thick ,so if you took skin from your thigh, the heel just wouldn’t take to the skin.

To begin with after leaving hospital. I couldn’t leave the house for a while, and the nurse came to dress it everyday. I couldn’t put any pressure on it , and because I cant hop on one leg it has been incredibly difficult. It was infected for about three months. Then various infections on and off since then. Gradually the toes and ball of my foot healed. Its 9 months on now and I still have it dressed twice a week. The heel and big toe just wont heal. It’s annoying as I cant swim, have a bath normally or even go on holiday etc. I have been on a diet and been taking various vitamins to try help it heal, but it hasn’t got any better for the last three/four months. Because of the bad circulation I have due to my spinal injury, it means blood doesn’t get to my feet as much as it needs it. Last week a nurse at hospital told me it will never heal and the plastic surgeon has now only just said it may take another two years to heal and that he hasn’t ever seen a burn like this and probably wont for the next five years. So I don’t know why he hasn’t done this sooner , but he is sending me to the burns specialist unit in chelmsford. So I am currently waiting to be seen there. We are hoping and praying that they have a solution. I try not to think about what could happen. Instead I focus on being positive and for a hopeful outcome. Chelmsford are the best in the country, hopefully they have seen a burn like mine. My friends and family help me to keep positive when I have a moment of panic ! Its just so unusual for someone to burn the bottom of their foot so deeply, as most people don’t hold their foot on something hot for long at all. So at the moment I am unsure of the outcome but Hopefully some kind of surgery will sort it. And when it is healed me and some friends are going to go on holiday! Which I talk about all the time.

carravan

 

Despite being paralysed and what comes alongside it, I dont wish I was someone else anymore. Of course I don’t want to suffer chronic pain, have a seriously burnt foot and would love to be able to feel when I need the loo and all the other difficulties that come alongside paralysis. But I have learnt I cant change these things , I have adapted to living a new way of doing things. I have learnt invaluable lessons and ways of thinking that no one can be taught. No one is happy all the time but I am happy with where I am today. I do still experience depression, but not as severe as it was straight after my accident.  When  you are forced to see life from a different point of view , it gives you a whole new perspective on life.

I Appreciate the things I still have. What makes me happy is not worrying too much about yesterday or tomorrow but living each day for what it is.

glasses

For all my posts -rachelholly90.wordpress.com

 

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6 thoughts on “Being Paralysed doesn’t just mean I use a wheelchair

  1. Amazing story, amazing young woman. So truly glad to know such a strong willed person. You are nothing but an inspiration to everyone. Keep on blogging!!!

    Liked by 1 person

  2. Hello – My sister is bi-polar and jumped out of a window headfirst onto concrete from two stories up. She is in an ICU right now and will probably never walk again. We are mainly hoping that she will at least be able to use her arms. This only happened two days ago. I have not been able to determine how much of an effect her mental illness has right now, as she’s in the hospital. Is she still in a mania phase? Do the opiates help her mental condition? She has not had her psych drugs in many weeks. I am worried that she is terrified and so confused. Any advice is appreciated. Thank you!

    Like

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