Death is only the beginning

I first set up this blog in the weeks following Lauren’s accident so that she could share her story and the highs & lows that comes as a result of being told you can no longer walk at the age of 24. I never thought in a million years that I would be writing another blog entry (unless of course Lauren got too lazy to write herself & asked me to on her behalf) but sadly I am. I am sure many of you who will be reading this all know that Lauren passed away in the early hours of the morning on Saturday 31^st January 2015 aged just 26.

Every night since she died I have sat at the laptop trying to think what to write and almost two weeks on I still don’t know so I’m going to keep it short and sweet. For me it doesn’t feel like it has actually happened. Its all just been such a blur and every morning I wake up and go to text her to tell her how Harry had kept me awake most of the night and to ask how her night had been and then I remember I cant. Well I mean I could text her but then I would be waiting for a reply which I would never receive. If it wasn’t for Harry reminding me that for me at least life goes on & I still need to be ‘Mum’ I don’t know how I would be coping or even if I would be coping.

I made reference in my first blog entry that the worst phone call I ever received was from my dad telling me Lauren was in hospital but we didn’t know anymore. That call seemed like a lifetime ago now and the one I had Saturday morning was even worse. Who wants to be told their sister has died? All I remember is saying I don’t want to hear it as I knew as soon as I got woken what the call was going to be about. These past two weeks have been the hardest of my life- we had to bury my granddad which should have been us Staveley’s putting the ‘fun’ back in funeral but there was no fun about it as although we remembered my grandad; Lauren was in our minds and all I kept thinking about it that’s going to be her soon.

I am so proud of everything Lauren achieved these past two years. I don’t think there are many people that would have been able to overcome what she did, get back to work within 6 months of the accident and adapt to living independently. But she suffered and all the time she had a smile on her face there was pain behind her eyes. She never got back her smile. The big beaming smile that defined Lauren. She was always so brave. The worst thing for me,my family and I expect anyone that knew her well was seeing her at her worst, when the pain was so bad that she couldn’t talk or move yet knowing there was nothing we could do to help her. Harry was the only one that could put a smile on her face in those dark times and it breaks my heart that she won’t be here to see him grow up.  

For months after the accident I tortured myself thinking that if only I had been out with her on that night then this would never have happened and Lauren would still be the girl who loved to party, the girl who had the biggest brightest smile on her face which was so cruelly taken from her. I kept thinking then that it was a mistake and one day she was just going to wake up and be able to walk again but really I knew that it wasn’t going to happen. The simple fact is that if she hadn’t have been left on her own that night, she would never had have the accident and she would be alive today and I have to live with the fact that I wasn’t there when she really did need me the most and I never got to say goodbye to my sister and best friend.

Lauren was always a bit of a drama queen in life and could never do anything quietly and the same goes for her death. We are still unable to plan her funeral due to the coroners still trying to determine what caused her to die but once they are able to release her back to us and we can bring her home I am going to ensure that she has the brightest, biggest and best party she ever had.

I’m not going to say rest in peace Lauren, I want you to go on and make sure you party to make up for the past two years.

xxx

'You have to fight through the tough days, in order to earn the best days'.

Its been a good 7 months since I publicly shared my life on here, that doesn't mean its been an easy 7 months.

I have been fighting a pressure sore which very quickly turned ugly. I cant even remember when the sore first appeared, must of been around May/June 2014. I had a routine where I would go to work, finish work, go to the doctors, changed the dressing and redressed the wound. I had various course of antibiotics to help fight the infections after infection. This was life, every day for a good few months. Luckily I have lost my sense of smell so I never had the pleasure of smelling the wound. I could tell it was disgusting because of the faces the nurses would pull when they dressed the wound. I had to inform work, because the last thing I wanted was for someone to walk behind me and smell me. That would be even more humiliating than admitting I had a hole in my back.

 I thought I had done my stint in hospital already, how wrong I was after being admitted  on the 30/09/2014 to William Harvey Hospital due to an out of control pressure sore. It was just another ordinary day. I went to my doctors appointment, the wounds got dressed but I was told they wanted to admit me to hospital as they did not know what else they could do and it needed specialist to view and treatment. They issued me with a letter which was an emergency admission to hospital. We headed up to William Harvey like a whirlwind and arrived in A&E at 6pm. I had a run in almost straight away with a nurse who wanted to take blood. Tears and tantrums started and she learnt not to ask again. I left and went back to the waiting room. Hours past, finally called in and another man ( some surgeon on duty) again wanted to take blood. Tears started, I tried to explain that I had been told a blood test could be done whilst under. I was given a relaxation drug and eventually made it to the ward at gone 1 in the morning.

This hole on my back is exactly how it sounds, a hole. At its worst it was 9 cm deep, you could fit a fist and a half in the hole and it was black, dead rotting tissue. The operation I would be having was called a debridement operation, where the aim is to cut out all of the dead skin.

After the first operation I was given better and stronger antibiotics as the infection had now spread to my tailbone which would mean cutting it out in the next operation. These tablets where huge and looked like something you would give a horse. I had the second operation days later where they were able to cut out the infection and cut out all the dead skin. When I saw the wound next, I could have cried. It was pink, fleshy and healthy, not a piece of black sin in sight. Yes it was still a huge hole, but now at least the recovery could really begin.

I had to get rid of my kingsize bed, to make place for what I can only describe as a hospital bed. I needed a special mattress which was made with air pockets. It vibrated constantly. This was to help the wound heal. I had to change the cushion on my wheelchair as well to help. I am very particularly when it comes to my wheelchair, I do not like for the chair to be visible and like people to see me before they see the chair. This cushion is higher than my originally therefore I sit higher. I hated this, especially getting rid of the bed. I worked so hard to get where I had got, that I didn't want to bring a hospital bed into my home.
I have the district nurses come every other day to change the wound and I have a special dressing called a Vac Dressing. It basically is a machine that constantly sucks out all the bad stuff out of the wound, so it keeps the wound a healthy fleshy colour. The hole is now 4cm deep, which is pretty amazing as it was 9cm only a few weeks ago. Makes me wonder why my nurse did not refer me to hospital sooner as all they were doing was changing my dressing everyday but nothing was happening.

One particularly bad night I sent an email to Buckinghamshire hospital for it to be sent to my Spinal Consultant Mr Derry. The next day I had a phone call from his sectary offering me an appointment early December. During the appointment I showed Mr Derry the photo diary I have been keeping and he could not believe that it had got so bad and asked why I never came to him before. Truth was I didn't know I could go to him with something that wasn't directly related to spinal cord injury. He explained of procedure he could perform which would mean getting rid of the hole for good. He explained that during the procedure he would move some of the muscle from the buttox up to fill the cavity and then stretch the skin up to cover over.

Strangely the recovery sounds harder than the operation itself, spending the initial few weeks on another special bed, which is heated and loud and am not allowed to sit up at all during this time. I am not sure how I am going to cope not being allowed to sit up at all. I am worried how I am going to cope with my pain, especially with even more limited movement

Before this, the day before the operation I have to have a blood test to check everything is ok and because I will be having blood transfusions during the operation. This is a huge thing for me as I have made it perfectly clear I hate needles and have a huge phobia of injections/bloodtest of any sort. Mr Derry knows only too well what a difficult patient I am and he has warned me, he is concerned how I will find the recovery as he knows I can get very agitated. He has offered to give me the numbing cream they use and has also offered me to have gas and air during the procedure to help me get through the bloodtest. I go into Stoke on the 14th January and I am hoping and praying that this is the last of this hole and I can get my life back.

Back in the working world...1 year on.

No goal was ever met without a little sweat.

I can remember the phone call telling me I was successful for the position of a motor claims handler. I remember telling everyone and myself that it was just for a year, until I decided what to do with my life....that was back in 2008.

14th May marked the first year of work completed after my accident. A whole year, it has gone so bloody quick that sometimes it doesn't seem real. It's true what they say, it's like I have never  been away. I am so so lucky, when it comes down to work. They have been amazing throughout my recovery, especially since I have return.

I have been back so long that there are new starters who only know me as being in a wheelchair, I find I have to stop myself telling them I haven't been this way forever.They don't care either way as long as they get an answer to their question. ( Well apart from the member of staff who wondered what would happen if he fell down a cliff. Yep, he got the 'Staveley Stare')

It has been a rollercoaster of emotions this past year, been up and down so much that even I get queasy thinking about it. I admit it hasn't always been easy, had my good and bad days. Days where the injury is determined to take control of my life and I have to leave because I am in so much pain. (Yes the same pain that I have previously mentioned). Then there are days where I forget about the injury and I am just a normal person at work, having a chat amongst friends and worrying about whether I have hit productivity or not.

I guess it is all trial and error, right? until I find something that works for me, sometimes I am so impatient, I always want things done yesterday and when they are not it drives me mad. For example, when I press the call button for the lift I expect it to be there ready and waiting for me. It drives me crazy. Just like when I go to use the loo and find it locked, so after knocking on the door it turns out the cleaner is in there cleaning. This happened everyday for at least a week, in the end I had to tell the cleaner that I have set times to use the loo so can they clean it at another time. Seriously could there be a bigger hint?! That takes me back to my stint in hospital...every single day I was asked if I wanted a hot drink, and every single time I replied with no thanks, I don't drink hot drinks. God that really got on my nerves.

The last few weeks has been a wave of appointments and shift changes,sometimes I don't know whether I'm coming or going. Still trying to find something to help control the pain, or even just to make it more bearable, so it does not control my life so much. I have said it before, but I would be so much more happier if I did not get this stupid pain. It interferes with my life so much, work, social, family ( ok so maybe I'm not to fussed on the family part ). It's so frustrating, and even more frustrating when I try and explain the pain, and even more so because I can't feel my dam feet!

Coming back to work is one of the best things I could of done, I don't understand how theses people that do not work, do it? I was determined to get back too normal, anyone who wishes they did not have to go to work. Believe me, you will be crying out for reality before long. This one of the biggest goal to achieve,I've done that now, it's a year on and old news. My next goal (as always)is focusing on my legs, getting more movement back if possible and go from there.

A Year On

‘Anybody who has gone through a life-changing experience will tell you there is a different understanding of what is real and what is important, and when you are going through different moments you can reflect and go, ‘ I have been through worse’

The past year has been one I will never forget and all for the wrong reasons. As December looms all I can think about is the 7th December- the date my life changed forever; my very own doomsday. It marks the year anniversary of when the accident happened. As December has got closer all I have thought about is 'this time last year..' I have no end to that sentence. 

The closer we have got to December I have become more inquisitive. Over the year I have not wanted to think about that night too much as it’s like mentally torturing myself. However, the closer we have got to that fateful night the more I have thought about it and the more questions I have asked. I have spoken to all my friends, asking them how they found out about the accident, who told them, how it was said. It appears Leah had the job of having to break that news to a few of them and ask them to in turn tell the rest of my friends. What a job for my little sister to have to do ay! I am still at a loss as to what actually happened that night. Not one piece has come back to me. My last memory is still walking into The View with Kieron. I know that it is probably for the best that I do not remember the actual fall and what happened after but there is part of me that does want to remember everything. The fall, the lying in the cold waiting to be found, being found, being taken to WHH, the pain, the screaming, the look of terror, worry & sadness on my parents & Leah’s faces when they arrived at A&E that night. The same questions of how did I fall? Why did my bag end up in a pub at the bottom of the hill? Who stole my money? Who found me? Most importantly though why was I on my own? How did I end up on my own? Why was I left throwing up, in the middle of December, by myself, instead of waiting for me? Questions I will not know the answers to but will always think about. I know Leah has found the last question the hardest. She said at the time she cannot comprehend how people just left a girl throwing up on her and still now she is looking for the answer.

Emotions are running high at this time of year. One minute I am fine, the next I seem to be having a mini breakdown. When I sit there and look back over the year, I can honestly say, I do not know how I have done it. People say I am an inspiration but really what is the alternative? Sit and wallow in depression, allow the ‘what ifs’ to swallow me up and ultimately give up? No. I have put simply ‘just got on with things’. When my family were first told the news I would never walk again they were told that I could be in rehab for up to a year. A whole year away from my life, my family, my friends. However, my stubbornness prevailed and on 27^th March, just 4 months after the accident I was home, well not home, but in my new home, my flat where my new life was just beginning. Second to my goal of getting home, was to return to work. Something I achieved on the 14^th May. Almost everybody said I was returning to work too soon. I mean here I was a girl, 25 years old, who had just had a life changing accident, couldn’t walk, mentally and emotionally at my lowest, returning to work which would just put added stress on me but honestly going back was the best thing I could have done. Those 8 hours I am in the office, I am there to work. The disabilities are forgotten, the chair is forgotten and I feel like my old self again. There is no time to dwell on the what ifs when I am in the office. It seems strange to say that I have been back at work for longer than the time I was off sick! The thing that keeps me going is a career. Just because I sit down does not mean I am going to stop pursuing a career.

So much has happened throughout the year. As I look back and reflect on the year and the previous blog entries, I realise how far I have come.  I have never known so much to happen in just one year; just thinking about it exhausts me. Along with everything else I have had to cope with my relationship has also broken down but can you really blame it? The accident threw a spanner in the works! Now I had to deal with living alone. I couldn’t go home to Leah & Dad because of the house so I was left with little choice. The thought of living on my own did and still does scare me. I think how on earth am I going to cope? What if I have a fall and I’m there by myself? But I am doing it now and so far so good. It is just another hurdle I have to overcome- all these hurdles I keep having to jump over I should be a pro at jumping them by now! I know that although I live alone there is always someone at the end of a text who would come round should I get into difficulty.

Another hurdle I have had to overcome is finding out who my true friends are. I was told at the beginning I would know who is a real friend and who is just an accomplice and its sad that this is the case. Yes I cannot walk but I am still me. My true friends have been amazing and they know who they are. My oldest school friends have always been the best support I could ever ask for. I have been a hermit lately, not wanting to go out because I haven’t felt like it so I haven’t seen my friends as much as I should have. However, I know that all I have to do is pick up the phone and they are there. They come round, we go out, they help me with my car, help me stand, help me with my exercises and also put up with my mood swings. The help and support I get from my friends has been phenomenal. What I have lost in other friends I have gained in forming stronger and better relationships with those I know will not let me down.

I am told that I need to focus on the positives but it is hard, so hard. What is positive about not being able to walk again? Being in a wheelchair is the hardest thing I have, and ever will, have to deal with. My biggest frustration is realising nothing takes 5 minutes anymore, rushing around, banging into things, will I fit through that door, and is there a toilet near? I cannot just pop to sainsburys anymore. I wouldn’t wish this on my worst enemy. So the positives of this year? Coming home, getting back to work, gaining the movement back in my legs, getting my car, transferring into my car on my own, living on my own but most importantly, the news my sister gave us back in April that she was expecting a baby. I was out with Leah & Abi for lunch one Saturday and she just sprung it on us. I didn’t believe her even though she showed us a scan with ‘Leah Staveley’ written on it. It seemed so surreal, my sister was going to be a mum and her bump just grew and grew and grew. It just didn’t stop growing. She was due on the 19^th December but baby Harry got bore and arrived on the 23^rd November. It’s a shame he couldn’t make it the 22^nd November as that would mean we had 4 birthdays in a row- my granddads, mine, and Jacks. The first time I held him was amazing. I haven’t smiled like that since before the accident. I love him.

This past year has been one that I quite frankly cannot wait to say goodbye to. I have gone through one of the worst life changing accidents a human being could have. There is no magic cure for paralysis. All I can do is adapt my old life to my new life and conquer the hurdles and challenges as and when they present themselves to me. It has been a difficult year and I have felt at my lowest. Constantly in pain. I try not to let it rule my life but it is hard. I didn’t even feel like celebrating my birthday this year. Not only was I coping with the upcoming anniversary, the doctors gave me the wrong medication in November so I was ill, had no appetite and was sick for pretty much the whole month. I then caught that awful sickness bug which left me feeling empty and more tired than usual.

A year ago, I was told the devastating news that I would not walk again and because my injury was so sever there is no chance of ay feeling or movement coming back to me. I have already said in one of the past blogs, that I had a flicker return in my left thigh, so tiny I had to hold my hand next to it so you could see it move. Now I have so much more movement in my left leg. It has got stronger and with daily exercises I can now start to move it against gravity. For example instead of just moving it up and down, I can drag my knee up into my chest. I have finally managed to get my right leg to so something. It is not huge but a few months ago my right leg did nothing and now I can get it to move and flicker. I am waiting to see Mr Derry for my year on appointment, this is where I have MRI scan, ultrasound and X-rays all carried out again to see if there is any chance since the last time I had them done. I am determined still to take a few steps and the only way I get to have a go at that is my using calipers (leg braces). The decision lies with Mr Derry. My future lies in the hands of one man. My consultant.

9 months on

"Life's challenges are not supposed to paralyse you, they're  supposed to help you discover who you are. "   Bernice Johnson reagon 

I believe the above statement is true, I am destined to be in a wheelchair and if it had not happened in December then it would of happened another day, another way.  Almost 9 months on now from that dreaded date and I feel at ease to say I am now discovering who I am.
A lot has happened since I last touched based here, so many thoughts and words to put onto here that they almost come out at once, making no sense, and containing a lot of typos. I have particularly found the past couple of months the hardest mentally, no one can prepare you for such a drastic change in your life. I have been through highs and lows, from feeling on top of the world knowing I can beat this disability to  feeling so isolated and sad that I randomly start crying, mumbling the words ' I hate this' or another favourite is ' I can't do this'.  If it wasn't for Sophie and Leah, I honestly do not know how I ever got out of them dark times, picked myself up and continued to plough on. I am forever in their debt, words will never be enough to thank them. They are my rock. As so is this blog, I love this blog. It creates a way for me to escape, express my feeling without being judged or questions. I can rant and vent all my anger out until I  give in exhausted and the best thing, it does nothing but take it.
I am now the proud owner of 2 kittens, Soph brought them as a surprise for me. Freddie and Rory have been with us now for couple of months and I hold my hands up and admit it, I have  turned into a cazy cat woman. Honestly they have helped me through the days at home, they have kept me company. The only people who will understand are the people with pets themselves, while others will read this and by the end will have one eyebrow raised as if to say 'what the f**k' lol.

I could continue writing and by the end me and you both will be n tears ( it doesn't take a lot). So deep breath......lets concentrate on he things I have achieved since I last spoke. Lets see, a new car, brand spanking 63 plate car. I was SO excited. I am missing driving so much, and to get back behind the wheel will give me so much more independence. 

Also used a aeroplane for the first time, flew to Dublin for Soph's birthday. This was a well needed break. I wouldn't normally choose a city break, I like my sun..ALOT. However I was sensible and took the flight as only am hour long so it wasn't too long, well I wouldn't know as I fell asleep as soon as I got settled on the plane, missed take off and was woken up when the lane landed.. Oops.

I took a trip back to Stoke for a 3 month checkup and what a complete waste of time that was, I have managed to get some movement back and was all proud to show my consultant, he's reaction - his eyes widened and I think, I hope he has an explanation, running through my head are all sorts he might suggest, when he says " Well we are not optimistic are we Lauren" what little faith I had in myself, in him disappeared. I know I am never going to walk again, but still after being told that I would never get anything back because my injury was to sever I thought I had done pretty well.


Following on from this, I kept a video diary of m progress, I have ordered crutches so I can force myself to stand using them at home, I got lucky at the doctors (not in that way haha) and he seemed amazed by my leg and has referred me to physio and a pain management clinic so I can get the help  need, I am so excited and relived that finally someone understating. Eeeeek!!!!!!!!i have uploaded a videos on to Facebook, and can ever so slightly move my others.

4 am continued

Sorry the IPad was having a tantrum, probably tired, and would not let me type no more. It is now 5.30 am and I look over at Soph and I feel a pang of jealousy. I want to be comfortable, all wrapped up and sleeping peacefully. It's so not fair, I know I have whinged about life not being fair... But it really isn't, what's the point in pretending?! It's so hard focusing on the next da when I have had none or by little sleep. I have little patience anyway, and well tiredness is not a good combination of me.

I am still in pain, how is that physically possible :( I go back to Stoke for a check up in a couple of weeks and I am going armed with my pain diary which I have been keeping and I am not leaving until they doing something. How hard is it just to up my drugs or change them. Anything.

So ranting on here has passed some time, it's weird this blog is now one of my friends, something I can trust. 

I'll leave it here for now and hopefully after some sleep I will come back and check in again.

Zzzzzzzzzzzzz

Ps 5.41 am

4 in the morning

Nobody can go back and start a new beginning,

But anyone can start today and make a new ending

  So it is 4 am, Wednesday 12th June 2013, and why am I awake so early? Well I never went to sleep because my lovely little friend called pain decided to pay me a late night visit the eve before. Getting settled to go to sleep and gradually the pain is becoming more and more intense, grabbed hold of me so quickly that within half an hour it had gripped my whole leg and had me screaming and crying for it to stop. It didn't. Medication,Oral Morphine, 4X Tramadol, Lavender drops on the pillow and pj top and massaging my foot and calf. Yet I am awake still being tortured by this pain, I am on edge, I can not relax as every few minutes it comes back, starts from my big toe, runs up to the back of the knee and back down again. Every so often it will take control of the whole leg and I have to put a cushion to my mouth to drown the screaming. Safe to say I am still a wimp when it comes to handling pain.

I fully appricate owning an IPad now, it has become my best friend during these long and lonely hours. Stalking through Facebook, although at this time there is nothing good going on. Playing (dare I say it?) CandyCrush. Do a bit of online window shopping,watch episode after episode of Come Dine With Me, however that's not alway a smart move as 9 times out of  0 it makes me hungry.

I realise I have not updated my blog in a while, you already know maybe a bit too much information about me  lol....wait did I tell you about the first time I did a 'proper number 2' haha a few lucky people were in receipt of a photo of that proud moment. Anyway, yes it's been a while and apologies to those who have kept up with me throughout this. This blog is part of me now, in a way it is helping me come to terms with what's happened. 

So I have been home for how long? coming up to 3 months now, gone so quick, only feels like yesterday that I arrived at rehab but in reality I am home, settled into my new home ( did I mention that I could not go back home and as a result had to move into an adapted flat.) and back at work - yay. Feeling quite proud that I managed to get back to work within 6  months.  I have only managed to achieve this by setting myself goals.. They started off so small in the beginning, my first one was something like sitting up on my own all the way to being able to stand up in the standing frame and then working towards being home by April. My next goal is to be full time back at work by the end of July.

What else is new... Oh I know, I have kittens - literally. Soph got them, as a present to cheer me up. I love them. Little Rory and Freddie, they have kept me company on my days off work ( don't be rolling your eyes now, I am not a crazy cat lady) . They were tiny when Soph brought them home, 
they have grown a bit now but actually look like a proper kitten size. They have comforted me when that brave mask of mine slips down, just by coming and sitting on me. So cute.

I went and picked my new wheelchair up on Saturday morning, this is the chair that suppliers at work funded for me for which I am forever greatful for. It is amazing, colours look lush, compact, super light. This chair took just over 3 weeks to design, built from scratch to fit me, shipped over from America and was still here for me before the chair I am due from the Wheelchair Service. The WCS is an actual joke, I went  there a week before I came home so back in March, they offered me a basic lightweight chair ( nothing) special, so why on earth it has taken this long I'll never know. I mean its not as if  I want the damn thing as an accessory. I need it. I can not walk. Maybe I didn't make it clear enough to them when I went there. I mean they already had the refferal from the physio at Stoke and fully assessed me on the day. It is pretty clear that I need one. So yeah the subject of the WCS gets me frustrated and angry.