Thursday, January 22, 2015

Rebuilding

The day I was stabbed, was the day I died.
The Kim that was lost, was not the one that was found.
Everything that was once familiar, became unrecognizable.
The face I saw in the mirror, the body, was a stranger.
The voice I spoke with, not my own.

But I am returning.
Not as the girl who stupid
but as the woman I want to be.

So much changed for me in that instant. So much that anyone would find intimidating, never mind a 16 year old.
It was like being dead for months and then suddenly returning.
There were months, moving to years, when nothing, nothing good happened in my life. Where every blow was more bad news, were every day bought new obstacles that could be the end of me, every breath the potential to be my last.

To try and be someone that I wasnt sure I was anymore.
Friends abandoned me, unable to deal with the broken me, not able to comprehend why I changed and blaming me for the things I blamed myself for. Neither them nor me had the life experience or skills to comprehend what had happened.

Its only as I grow older that I am able to begin forgive myself. To heal the wounds that I have done to myself wracked crazy with guilt turning to hatred.
It kinda explains why I over think everything, why I have abandonment issues, because when I needed people the most, when I could have really used a support network, the people I trusted turned their backs, developed blind spots in my exact shape and size.
And I dont blame them, I dont.
But the damage that is done when we are at our lowest, tends to cut us the deepest and take the longest to repair.

These days, when someone does something nice for me, I am genuinely shocked.
And when someone raises a voice or expresses a dislike or disdain from me, I go running as fast as I can, usually to the depths of my being, to a very dark place. to a place, where I can be sure that I am in control, where I can say, hurt me as much as you like, for you can never hurt me more than I can hurt myself.

For so long, I couldnt accept all that had happened. And until now, I never really counted losing my friends in that list of things. But as I begin to heal and rebuild, I can see more now.
I still have a long way to but every step brings me closer to being the person that I want to be.

Monday, January 12, 2015

how long?

Its 2015 and as I look back on this blog all I can do is wonder how on earth it has been 18 months since I last wrote.

Time is like sand, running through my fingers while I am powerless to slow it down. One thing remains true though, I am so lucky to be where I am.

I'm going to try and glaze over a few things to catch up once again.

The end half of 2012, for me was pretty grim. I had a lot of emergency admissions, one of which found me back in theatre with the crash team at 4 am. I came close to being air lifted to London, before it was decided that I was too unstable to risk it. Instead we opted for a blue light transfer in a crouded ambulance. I had to be transfered with 2 anestists and a consultant surgeon plus the regular ambulance crew. That was fun.

I was discharged 2 days before Christmas, but my normal fighting spirit had run away.

Heading into 2013 I was a Shadow of my formal self. I had put so much weight on yet lost a heck of a lot of muscle. The thought if hospital made me want to scream and all I wanted to do was curl up and never move.

My surgeon agreed that we needed a break and I desperately wanted to remember who I was when hospital was not the main thing about me.

So for the past 12 months, everything was put on hold. No theatre trips unless absloutly nesscisary. I can honestly say it is the Best thing I could have done.

I have been abroad. More than once and achieved things I previously thought were out of my range.

I had gotten to the point where I was doing as I was told. Last year I got back to being the person who challenges a nov and finds a way around it.

I began going to the gym and whilst I will never be able to excel at cardio stuff (I end up a wheezing coughing mess) I can lift. I have worked at strengthing my muscles and this in turn has allowed mW more reserve when i am unwell.

I have lost some weight though there is plenty more to go. I have seen tortoises in the wild. I have travelled over the article circle, visited the most northern city in the world, witnessed humpback whales and orcas in the wild and had the privaliage of watching the northern lights. All of these things are magical, but the northern lights were truly unquie and I could do little more than stand awestruck underneath them, thanking everyone from my donor onwards that had allowed me to get to that point.

There are many people who have fought for me. People who have had the strength to push me when I thought I could go on no further.

I have made new friends alongv the way and cut out anybody who made me feel worse. And last December, I celebrated being 13 years post transplant.

That's not to say things have been easy. I have had countless infections, periods where I have coughed so hard that the vessels in my lungs have burst and I have nearly chocked on blood instead. I am now colonised with acinterbacter which will slowly destroy my lungs but nothing can be done about that.

There have been a lot of losses this year and though I won't write about an body specifically, they all hold a special place in my heart.

But I am in control of this life and this body. I have taken control and has the opportunity to do do my own IVs at home.
I was discharged again on Christmas Eve and planned Christmas day around trips to the hospital for blood tests and mixing my medication up at home whilst putting it through my own iv port.

Oh I had one of them fitted btw, an iv port that is. It has made life SDI much easier.

This year I have stated as I mean to go on.  Last week I was in London and watched the Matilda show at the west end. Right now, I am visiting a friend in Newcastle. This morning I had a go at archery and next week I am hoping to begin a night school course studying photography.

Right now I am living and loving it. I do everything with 100% of my soul and though life can be cruel the amazing highs balance out with devastating lows. But right now, life is within my reach. I am making the more most of it and putting my everything into achieving my goals.

(Edit: I didn't think it had been that long since I update, but seems my version of blogger was being naught . So instead think of this as a recap (as I only noticed after I typed it all out))




Sunday, October 19, 2014

The 3 Hs, happy, healthy/ish and holidays.

This blog has been well and truly neglected. I would like to say that that is going to change, but I think we know that it is not true. So many things have changed though. I think back to when I started this, to who I was. I was deeply unhappy and not just unhappy, I depressed and remembering how bleak things were then and the things I did, makes me shudder. I never want to end up with things that dark again. I put myself at risk so many times. Overdoses and injuries, infections and abuse. I hope to never end up back there. 

But even thinking back shorter periods of time, things have changed so much. I have come to accept who I am, mostly anyway and that for the forseable future I will have a trach. That one is not so easy. Yes I hate the way it looks, but more so I hate the inconvience of it. The machienery that is needed for up keep, the changes in my voice, to having no voice sometimes. The inability to have a conversation if I am using my hands, the added caution with things involving water, dirt, dust or infection. But even so, I have to say that I am making the most of things so far. 

I have lost about 18lbs, I am eating healthier and I joined a gym to build up some muscle tone. Admittedly going to the gym kills me and I have to run a truck load of extra treatments to do it, but it is focusing on the long term effects that matter more at the moment. Oh and I havnt been for about 6 weeks as my latests infection has completely knocked me on my arse.

But apart from that I feel that I am living for the first time in a very long time. I am doing things that I want to do and ejoying them.

I have just gotten back off holiday were I spent some time in Turkey with realtives and in Greece. A chance to escape everything and unwind. I have always loved travel more than anything. I even found wild tortoise (something on my bucket list)





Speaking of bucketlists, I also go to meet and shake paws with an old english sheep dog and attended Creamfields where I watched Avicii live. I am currently pursuing seeing the northern lights.

So many things. 
That makes it all sound like it has been fun and joy and it has in so many ways, but there has also been the usual background rubbish involving numerous courses of antibiotics and admissions for IVs. After many years planning, they figured out a way to put in a porta-cath, which is a port underneath the skin in my chest. This allows me to have IV medication straight into that now, instead of having to cannulas and needles. I have also had sugery to fit a stent into my airway, to try and save some of my voice. It is helping so far, but is also causing problems such as pain and potentially adding to my infection build up. I need to go in for IVs at some point soon (I was last in about 2 weeks ago, having gotten out for my holiday)

I never used to be able to understand how people could become obssesed with making sure everything is clean and things like health being such a big thing to them. To me it was always something that was either there or not. But as time goes on, and I find myself having to elvauate myself and my circumstances all the time, I find that it does become a much bigger thing. Kinda, ok my breathing is noisy today, what do I need to do. Is it airway or chest, ENT or pulmonary drs. Does the risk of antibiotics and immunity outweigh the risks of lung damage and scaring. Do I want to gain a couple of weeks of voice and good breathing, at a cost of infection, pain and exhaustion from surgery. Most days I dont know what the answer is, but I can see how it becomes a big thing. But in the end, I know that all I can do is to keep up my treatments as best as I can and hope for the rest to fall together. 

In the meantime, I aim to enjoy what I have. Keep working on things off my list and trying to achieve things that most people my age have already achieved.

Saturday, September 20, 2014

fears

I have written so many entries and half entries. Some I have fell asleep whilst writting, some just never made the cut, some I have gone to post, but just didnt. But tonight, I feel I need to give speech to some things that I have been locked up in my fears box wanting to get out.

Dont get me wrong, life isnt bad at the moment, and nothing drastic has changed. But tonight, I am feeling a little raw.

I remember growing up, I was brazen and cocky and had no fear of anything. But time and cirucumstances have slowly chipped away at that facade. Some for the better, but some not so much.

These days, I have so so many fears. I fear that I am going to be stuck in this exact plase forever. That I never will find a cure, never find a work around. The life will always involve living from one surgery to the next, running merley damage control because that is all there is left to run.I fear that I will die before I have had a chance to make a mark on the world. I fear that I never will experince true love or any adult relationship. That my end will come or I will grow old alone. Never to have a family to call my own. Never to really achieve anything. Not an eduction, not a job or career not anything of worth. I worry that my parents will always argue. That they will end up spliting up due to their bickering. Or worse stay together and one of them suffer for so long. I worry that one day I wont be there to tell them both to stop. I worry that one day I will do something that I cant stop.

There are so so many things. Being like this for the rest of my life and never experincing true love are my greatest fears. And there is nothing that I can do about either. All I can do, is hope for the best.

And I am going to leave that there for tonight. My heart hurts sometimes and seems heavier than anything else. Its hard work living as if nothing bothers you, as if every operation is a walk in the park, that at my age, I want life to revelove around hospitals and medication and treatment. I want to just find peace.
maybe...
one day....

Wednesday, September 03, 2014

Future progress and opportunity.

Things continue to go on the up and right now. I am feeling good and steady within myself. I have set myself small goals that I am achieving. Getting up at a resonable time (Which is before 10 btw) Still working on getting to bed earlier, but a few times I have fallen asleep mid night time nebs, which you would think would show me something but it takes a lot for me to get the hint. I am showering frequently, my room is tidy and everyday I am keeping on top of it. I am mostly keeping awake during the day unless I have really pushed it or gotten up extra early when I have a nap.

More than that, I have started eating clean and proper. Cut down on the carbs, and the junk food, completely cut out coke and soda. I have more energy I think. I have been trying to exercise. Small things, but I have noticed it getting slowly easier. And so this week I joined a gym. Now I am hoping against hope that I dont become one of those people who never use it. I wanted more advice on what I can work on and how. So after a session with a personal trainer, I have some better ideas. Cardio work is a struggle and so we have to keep that low and not push to hard, in order to keep my oxygen levels up and my pulse rate down. But weight work well for me. I aim to build muscle. I can do weight work, as you can go as slow as you need and still have it work. I am looking forward to going back.

My thoughts and aims is that is I build more muscle, my body will work more effectivly and therefore need less breathing to move around and leaving me able to do more. That is my theory anyway.

There is a long way to go, but I feel I am finally able to move on and accept who I now am, finally able to work on moving towards the person that I want to be, to achieve what I want to achieve.

I know that there will be obstacles in my way. I know it wont be a smoothe journey, but it is one I am ready for.

Oh, I also had surgery a fotnight ago. The findings were that my airway above my trach had closed to a pin hole, that was why I had such headaches and talking had become next to impossible. I pretty much expected it. For the time being the bottom of the airway, still looks inflammed, but scar tissue has no pushed its way through just yet. After talking we were throwing ideas back and forth, I like that I am able to do that with my surgeon. This guy is a world renowned surgeon and yet he can be honest about what he is thinking with me, can ask me what I think of his ideas and I am able to throw some ideas back at him to think on. Between us, we did come up with an idea, but the chances of it working are slim, however, it wouldnt require much hospital time and would be low risk, so it might be worth a go.  But for now, I am going with the trying to get my body into a better place first.

I think that it might be almost time for another adventure. I went to Alton towers with my 2 nieces the other week (Yes you read that right 2!) I was super excited as I seem to be building bridges and slowly getting family members back. Another one where time will tell. I guess there is a lot to wait and see for. Perhaps this is why the future seems so sparkly right now, it is full of opertunity, and that is all I have ever really wanted, the oppertunity for better.

Anyway enough ramble for the time being.

Thursday, June 19, 2014

Im ready.

I havnt posted in a while, I guess I have been trying to get a handle on where my life stands and how I feel about it all.

Last week, I had a panic attack, only a fairly minor one one night, but still, the first one I have had in a long time. Since then, I have done some pretty serious thinking.

I know what was bothering me, what was causing the problems. Its the whole death and dying thing. Things were put pretty bluntly and just when I thought that I had made up my mind, the words of the surgeon, bought my whole world crashing down upon me, making me reevaluate my decisions.

My mind has been everywhere, between denial and despair, joy and triumph. And its only now, as fear builds up its height, that I am truly able to see over everything.

Last year, my extended spell in hospital destroyed so much of me. It broke me beyond where I thought repair was possible. Not only was it a toll on my body, it was a toll on my mind, my spirit and my resolve.

But today I look back and I can admit that I was broken and it was scary. It has taken a heck of a lot of work to build myself up again and the mere mention of surgery was enough to make me quiver with visions of being the ill again. But I am not that person any more. I am stronger, I have faith in surviving again. Back then, taking a shower, would be a long and draining process. It would take all I had to manage it, before collapsing with exhaustion on my bed to sleep for hours. But now, I am still restircted, yet I am able to shower without needing a break. I am able to do that and more besides. I have made peace with who I am and more than that, I am oh so grateful for what I have.

These last few weeks have been amazing. From going to Turkey with my niece, to greece with my parents. Visiting Devon with my family and this past weekend, Alton Towers with my two nieces. I have taken steps to rebuild bridges, I am slowly bringing my family back together. Its early days and its baby steps, but my heart feels happier for it, at the prospect of once again being close to others.

Of course the flip side to that, is once they go home, I am filled with this lonely ache deep inside me. It has taken all of today and yesterday for me to put a name to this feeling and recognise it for being lonelyniess. But that is a good thing surely, for recognising, instead of wanting to shut away alone, away from everyone.

Right now, I am happy. I feel strong, I feel positive. And more than anything else, I guess I should say that I feel ready to defey some more medical boundries. So my sleep patterns not great and bad thoughts fill my nights. But right now, I am able to fight that.

And so, next week is going to be a simple in and out of hospital trip, everything to plan and I will bounce back from it, as I always used to. And I will talk to the surgeon. Its my turn to tell him where I think things are. That, sure, I am not runing any marathons, nor joing a talk show. But right now, I surviving. More than that, I am flourishing within my limits. I still have enjoyment, I am still able to do the things that I want to, just with a little more support than usual. I am not ready to pin my life on a risk. I am however ready to fight. Ready to achieve some more goals. Ready to kick ass and fight back.

And so, my thoughts are still against me, the dreams, the flashbacks, the panics. But my physical self is still here. I still have a way to go. And I am ready to go that way.

Friday, June 06, 2014

Take a breath and let it go

I feel fine. I feel happy during the day, occupied and my mood is fine.

But it gets to night, and I cant bring myself to wind down to sleep. Its silly oclock by the time I do drift off. But when the house goes quiet, and I relax and watch some tv, then the thoughts come streaming back. Thoughts of harm and damage. Cravings of death. Which is odd, as the thing that I want least during the day is death. But I know that damage is not far away either. It wont take much, just a small slip. But the thoughts wont leave me alone. At night, I feel truly terrified, but I dont know what of. I am apprehensive about going back to london in a couple of weeks for surgery, I am more so apprehensive about their plans for me and what I want. I also know that I am not strong enough for what they do want. Physically and mentally. Last year I was a mess, the time in hospital, left me broken, to the point that I am still trying to rebuild. There is no end in sight. But why does my mind spin it down to destruction and damage. Its thoughts like this that once again push me to a place where I feel so alone. There is no one that I can turn to about this, this isnt anyone who even knows my thoughts.

But on the other side, whilst this is going on in the background, I am enjoying life. Achieving goals, having fun, taking pleasure in the small stuff.

In the mean time, have my current favourite song.

When you watch he world just turn away
And break the promises it made
When love is all too hard to hold
Just take a breath and let it go