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.