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.

These are the moments I'm going to remember the most.

Rock bottom became the solid foundation
On which I rebuilt my life.
(J.K. Rowling)

Getting in a wheelchair for the first time,
Being invited along to the pub to celebrate a birthday
Ordering take- way on to the ward
Getting rid of my curly hair
Being able to wash and dress myself
Being able to sit up on my own
Playing basketball for the first time
Scoring a basket in basketball ( after 3 months of playing)
Getting in the pool for the first time
Transferring on my own
Falling off the plinth in the gym
Going to town

The list could on and on, I have had many "first" moments during my time at Stoke and many that I am grateful for however small they sound. I can not even begin to describe to you how weak I was when I arrived at Stoke.

My days consisted of physio, occupational therapy, seeing a physiologist, sports and in the beginning I spent a lot of my spare time in bed, why? Well because I could only manage to sit up the chair for an hour or so at a time. It hurt- a lot, it was uncomfortable to get in and out of as the staff used a hoist. I didn't want to mix with anyone, why should I? I don't need them. My goal was to get home and quick. I hated it. I told all the nurses,the consultant, doctors basically anyone that would listen
that I would be home for the spring. My goal was to get home by April and back to work late spring. I was told that was wishful thinking and I should be prepared to be going home and returning to work around August time. I'll prove them wrong I remember thinking.

The day I arrived I shut my eyes as I was wheeled on my stretcher, I didn't want to see all these people in wheelchairs. To me I felt like I had reached the end of the road, this was my home now for the foreseeable future I had no choice. I felt mixed emotions and it wasn't until mum and dad left me that I fully took in what was happening, it was overwhelming and exhausting. How on earth was I going to get through this?! Sheer determination and hard work was the answer.

Ever had physio? Nope me neither. I thought it would be someone who would stretch my legs and massage them. How wrong I was. I was allocated my own physio and we went through everything from learning to sit upright, balancing, transferring from the chair to another surface using a sliding board, getting in and out of a car, weights, and finally after 12 weeks I was given the all clear from
the consultant and was able to use the standing frame. There were times where the physio was so intense it would bring tears to my eyes, mixture of pain, and sheer determination to finish what I was given to do. I never got one massage.

My fear of needles continued throughout my time spent at rehab and I refused to have the blood thinning injection, you are supposed to have this every day for 12 weeks after the accident. By me not having this injection meant my risk of developing a blood cot was 82%, I also delayed my Physio as no work was allowed to take place on my legs until the consultant said so. This just made me even more determined to build my upper body strength and quickly.

As time passed I realised that everyone here is in the same/similar situation and that it wouldn't hurt me to engage with them. I hit it off with a few guys from my ward and a few from different wards. I never met a single female in there with the same injury as me,apparently the injuries I sustained are more common in males. Always had to be the different one and cause more attention to myself.
Oops. Never a day of sick, then I go and have months off all in one go. Brilliant.

Every night I would try and get my toes to move, face screwed up in concentration trying with all my might, willing just a flicker, but nothing. I started trying to get my legs to move, night after night  I tried, suddenly my thigh flickered, confusion crossed my mind, I tried again slowly, it flickered again. Ahhhh. So tried again this time I filmed it just incase it never done it again. Next morning I tried again and it still moved. Sheer joy passed through me, I wanted to shout and cry all at the same time. A muscle was starting to work again. YES YES YES.

The smug look I had on my face when I 1) made it through the 12 weeks without developing a blood clot and 2) that I had managed to recover a tiny bit of muscle movement back. The Consultant was lost for words during that ward round.

27th March was set as provisional discharge date by myself and the rest of my team, I was warned it could change as in be moved back. There was noway I was going to let that happen.

I'll never forget my time during my rehabilitation, it helped me prepare for the start of my new life.

03/01/2013 - 27/03/2013

I'm smiling but I am close to tears

There are two ways you can get through pain, 

you can let it destroy you, 

or you can use it as a fuel 

to drive you to dream bigger and work harder.

Ever feel like no matter how hard you work and how hard you push and how hard you fight for your dream that there is always something waiting to pounce on you when you least expect it....I'm talking about neuropathic pain, the worst type of pain I have ever experienced ( ok so the break in spinal cord hurt but I can't remember that)

So I can not feel my right leg and foot yet I am feeling the most excruciating pain ever in my right foot... Figure that out?! I am used to a tingle of pain which I get most days but for the past week it has been so bad that I have had the night staff call doctors out on 3 separate nights and referred for an X-ray.The third doctor actually listened to me and allowed me to have a dose of morphine, instead of just saying take tramadol, now it didn't make the pain go completely but it made it more manageable.

Today (4th March) the pain has come bright and early, as if to say, 'ha you can handle me at night, now lets see how you cope during the day' smug bastard!  Epic fail today, back in bed by 11.30am, tried to stay up longer and do things to keep me busy, but it was so sharp and intense it was useless. 

I Feel like no matter how hard I try it is jut not good enough. I am useless at handling pain anyway, this accident hasn't made me into some super human who can handle anything. I'm still me, still the same person..

Today was another one of them days where I put on my face and my fake smile and my fake laugh is down to a T. I remember using the fake laugh once on one of my friends and she turned round and was like 'Stav that was your fake laugh' oops.  Here tho noone knows me so it's easy, smile, laugh, joke basically anything to get them on side and to leave me alone. I managed it for 3 months, until today.

Behind that smile that doesn't quite reach my eyes is a whole different person, one that rarely makes an appearance. That smile let me down today and the tears came, once they started they didn't stop.  

So many questions.... Why? How? What can be done? Does it get easer? Is it forever? Never given a straight answer... Frustrated, I have learnt the best way to get answers is to speak to the patients and not ask the doctors or consultants as let's face it, how do they actually know.They  have  learnt from a textbook. They have never felt the pain.  I am told by ex patients that the pain never really goes away but you learn to cope with the pain better as time goes on....( great just what I want to hear) so now the tears fall even harder not only do I have to spent the rest of my life in a wheelchair, I now have to manage the pain that comes with it. I sit here and wonder what on earth I did to deserve this life, they say life is'nt fair well guess what it really isn't. I think why me? Just when everything in my life was going so well and then in a matter of seconds I'm fighting for my life. I sit here and wonder why on earth I even agreed to let them treat me as surly death is better than living like this?! That would of been the easy option to choose, what I would give to be peaceful and pain free.  I don't want to live like this, dreams of walking down the isle on my wedding day-gone along with plenty of other dreams and plans. I find myself drifting back to the quote used to describe death.

"Your so lucky" " it could of been worse" are two of my pet hate sayings, I feel like shouting back ' how could it of been worse'.

There's more to a spinal cord injury than not walking...

Every closed eye is not sleeping,

                                         And every open eye is not seeing
 
So, lets start with my injuries....  T12 complete ( the T stands for the art of the spine that is injured, so in my case the lower part of the spine. The complete stands for no movement below the level of injury,) 3 fractures to the skull, haemorrhaging to the brain, operation to place a metal work fixation on my spine and being told I will never walk again is a lot to take in for any person - dont you agree....

Well unfortunately life isn't that kind, there's more to add to that list, how about adding going to the toilet, loss of sense of smell, short term memory problems.

For as long as I can remember I had a catheter in until I arrived at Stoke. I assumed I had it ( as most people would) because I was in hospital and doesn't everyone who's ill in hospital have one?. No one even mentioned the catheter to me, it became a part of me. AlI I knew was that my internal organs were fine and luckily still working. 

It became apparent slowly that the staff in Kings were trying to make me poo, the nurse came up to me and lowered her voice and said to me to give her a shout when I had gone. I asked her where are the toilets and will all the drips be oaky coming with me, she looked at me as if I spoke a foreign language and replied... "You go in the bed" . " what here? On the ward?" Was my shocked outburst and she nodded and carried on.  I can remember thinking, what?! No way am I 1) pooing in bed, 2) not on the ward, 3) what if I farted and it was loud and finally what if it smelt?! Nope not happening. End of.

So days, weeks went by and I still had the catheter in and I still hadn't been for a number 2. Medication was given to 'help' including the most disgusting drink ever, well after a mouthful of it, there was noway I was drinking that. As usual the family thought I was over reacting over this drink ( well who could blame after reading the previous blogs). So I got Sophie to drink some and it then became clear that I was not over reacting over this drink at all. It was gross. I was given some tablets to help me go, we'll after a few weeks I decided I didn't want them no more and just left them. I remember 'accidentally' knocking them on the floor...Opps.

On arriving at Stoke and talking to Mr Derry, trying to process the reality of my injuries, he then slips in bowel management and SIC, self intermmitent catherisation, brought back own to earth with a bump "WHAT". He explained that although the  bladder and bowel are working, I will no longer be able to feel when I need to go to the toilet so I have to retrain the bowel and bladder. Retrained to use the loo at 24, disgusted with myself, what have I done to myself, anger overcame me, why, why had no one said anything to me until now. 

 

24 and losing all dignity

Ego is just like dust in the eyes, 

Without clearing the dust,

You can't see anything clearly

So clear the ego.... And see the world

Imagine you are a 24 year old female, you are happy, you have great friends, the best social life, amazing partner, a good job and is totally independent...Now imagine having that life snatched away from you. I don't even know where to start, not being able to wash or dress, being fed by my sister and girlfriend, having my teeth brushed by someone, none of which should describe a young girl. 

One of my earliest memory's is being face to face with a nurse in kings, she was holding a sponge coming towards me saying  ' now let's get you washed' ,I automatically refused, I mean who at 24 wants someone else to wash them?!?! Her response was fine you do it yourself then and gave me the sponge, with all my might I tried to lift my head off the pillow and raise my arms - epic fail, who was I kidding, I couldn't even lift my head off the pillow let alone sit up and wash. So with great reluctance I gave in, I remember closing my eyes and cringing at the thought she would see my body.Something else I was going to have to get used to and deal with.

The bed washing continued pretty much until a couple of weeks after arriving at stoke. This was another hard obstical I had to overcome as a result of the injury. It made me feel like a child, I felt angry, I mean not walking is enough to try and deal with let alone having strangers wash me. As time went on I became a stronger until when at William Harvey I was able to help the nurses and wash my top half. This as a huge step for me and gave me a little bit of faith back and got me thinking maybe I can do this and get through this living nightmare.

I am a very body conscious person and very private about my body, well a least I was before 7th December 2012. I have lost count of the number of people who have seen my body, Lost count of the number of nurses saying the same bloody comment 'don't worry love, when you have children you lose all your dignity" ermm There is going to be no baby at the end of this.

 I don't have a lot of patience anyway and the nurses well and truley tested it. Hearing the same words over and over again, 'give it time, you will get stronger' well I didn't want to give it time and certainly couldn't see how in time I would get stronger. It's one of the loneliest feelings in the world being so incompetent, weak and feeling like a failure. There was no one who could really relate and understand, my way of dealing with this obstical was to laugh and make jokes about this horrific situation. 

 
Looking back over the past few weeks, I hate to say it, but yes in time I really did get stronger, one step a time, until finally now I can wash my whole body while in bed. ( Or quite easily have a shower but meh thats effort)The independence is coming back.

I will never walk again. Mr Derry's words to me

The most painful goodbyes are the ones never said,

                                    But the heart already knows it over....

 'Lets be honest Lauren,you will never walk out of here, but you will go out a lot better than what you arrived in'  Dr Derry Spinal consultant and surgeon (4th Jan 2013)

Look at the date that statement was written, nearly a full month after my fall. So lets rewind.

I remember waking in Kings and my legs wouldn't move, I couldn't move,I don't remember feeling any sort of panicky feeling. I just knew my legs weren't working. I started asking indirect questions about my legs and feet because I wanted to know if I began asking these questions would they be honest with the answers ,because nobody was was saying anything about my legs. Looking back it seemed like a really taboo subject.  I even got Sophie to massage cream into my feet, ha and my feet aren't the nicest things I inherited from the family, I blame dad. Anyway back on track..... I couldn't feel a thing, not the touch, nor the motion of massage, no sensation, was the cream hot or cold? I still don't know to this day.

I waited and waited for someone for bring it up with me, to clarify what I was thinking and nobody did. Phone back in hand, oh yes :) having a browse on Facebook ( being as drugged up as I was you still need a Facebook fix) and scrolling through the news feed and there it was in black and white..."Lauren will never walk again" So that was it,well its nice to know I can't walk again, didn't anyone think to tell me. Then I gave the phone to Sophie to read out the paragraph to mum as I couldn't, what a way to have my worst fears confirmed to me through facebook of all things. Still after that outburst no doctor/nurse and whoever else wears a uniform, came to see me. I don't remember feeling any sort emotion about this until I reached rehab on the 3rd January 2013. Which I will now share with you.

Mr Derry came to a see me on the 4th January 2013 and turned out to be a brutally honest and straight to the point guy, he relayed the above sentence to me ",Lets be honest Lauren,you will never walk out of here, but you will go out a lot better than what you arrived in" that's  when it hit me, tears were pouring down my face as I listened on , the words you never want to be put together in a sentence, the moment I realised that this nightmare is real and I am living it.

 I knew at that moment when he said the above words that I am NEVER going to walk again. I can not describe what emotions went through my mind?what, how, why, no not me. Amongst them thoughts was 'I am never going to the priz again '. How could my life change so much in a matter of hours? It's not fair! I even debated not to go out that night, why didn't I just say no. It's all my fault, I caused this to happen just because I didn't bail on my works Christmas meal. I felt sick, how am I ever going to live my life again, I couldn't picture it. I was and still am scared. My world fell apart.

I don't think the reality of it has sunk in, I dont think it ever will. I wouldn't say I have fully accepted what has happened but its done and I have to deal with it, what other choice do I have.  

I have never lost anything so precious to me, yet I have lost my old life and that in its self takes time to grieve something which I haven't fully mastered yet. Part of me is still clinging on too my past. I look back now and realise I had a pretty perfect life ( not that I ever realised it at the time)and now I face a future which I wouldn't wish on anyone.

I never said goodbye to my legs because as the quote says in my heart I already knew my legs had gone way before I spoke with Mr Derry.