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))

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