So that was how it all began, well not really how it all began, it began when I was born. Here's a brief (or as brief as I can be for someone who likes to talk the hind legs aff a donkey) of my life so far, I'm sure we will go in to detail as we go on :
Born Nov 1983 to Nettles and Big Sandy
9 months : Diagnosed with Cystic Fibrosis - mum and dad thought the worst
11 years : Ha a great childhood, sure I took meds and got physio three times a day and knew I wasn't exactly like my big blisters (big sisters) but I was fine with that, I was spoilt more and got to eat what I wanted and I liked to fall asleep whilst my dad did my evening physio singing 'Pretty woman' to me in time with his clapping. After he would carry me up the stairs. At 11 I went into hospital for the first proper time to get polyps removed.
13 years : First set of IV's followed by a whole lot of IV's , weight was falling off me, infection was rife and the doctors warned my parents that I was faling down a steep slide that they had no idea how to stop. I spent my birthday in the hospital, I first began doing Nasal gastric feeds (yuck that took me a while to get used to) and my life changed rapidly.
13+ years : I was diagnosed with Diabetes YAY! I say yay because we now had a reason as to why I was so gravely unwell.
TEENAGE YEARS : Not only dealing with crazy hormones, all you buddies are growing boobs (even the boys had bigger ones than you) and hips and I wasn't anywhere near puberty in my body yet I had the hormones to fancy nearly every boy that stood within a metre radius of me. Looking back I'm glad I was an ugly duckling (if you had seen pictures of me before you'd understand that my formative years were much worse than my older years. My sistes teased me calling me cliff hanger - cue a very amusing night of charades for them and tears for me, as my dad tried to hide laugter whilst giving them into trouble) I never got involved with boys.
I do remember CF hitting me like a brick when I was approached by a boy in school who said to me " I heard your not going to live till your 18" BOOM, well FECK YOU TOO!
I got three monthly preventative IV's and regularly was in for antibiotics when I needed them. I continued with the feeding through all my teenage years, I would become the nasal gastric queen.
LATER TEENAGE YEARS : I tried to smoke once, thinking it would instantly make me seem a lot cooler- it didn't I choked I thought better of doing that but my friends like to remind me every so often about that.
I started to drink and tried my hardest to hide it from my parents, they weren't stupid but neither was I a huge drinker. Until the night at Monklands, we may come back to that.
I got accepted into uni at Caledonian to do Fashion with business, great! Clothes making!! NOT, it was all business. I like to blame the fact that clothes making wasnt a huge part of it as to the reason why I dropped out after a year. However, I liked going out too much, I liked to party and I went through a damn crazy time where I didnt take my meds or do anything remotely related to everything I should have been doing for CF.
I call this time my TRULY CRAZY ARE YOU FECKING NUTS DENiAL TiME. I got a job in Miss Selfridge and sometimes showed up for Uni, I partied, I felt great, I began asking myself are the doctors right? Do I really have CF? Maybe all this time 17 FRICKING years they have been wrong, and then I went on fmily holiday with my sister and her wee one Tamsyn. And I got a cough, and I got ill, and on my return I couldn't push my trolley with my bag on it.
TURNS OUT THE DOCTORS WERE RIGHT -I HAD CF - ha ha ha I was sat down by my CF team with my parents and told by my doctor that if I were to carry on, on this route to self destruction I would most certainly reach that DESTRUCT button much faster than I even though.
So I buckled down, gave up Uni, gave up work, it's pretty amazing what getting told you are going to die can do for you.
I bubbled through life having ups and down health and well being wise and then I met someone and I really wanted to try my hardest, I was still doing feeds, I was still doing physio, I kept all this quiet from him for three months.
We were together for a year and a half before the shit hit the fan, my CF had been declining slowly, low lung function but I was still functional - it's amazing what your body can cope with.
I had a MASSIVE lung collapse in his room one night, I apologised to him that I was going to die right here.
I didn't and again we will delve into this at a later date.
I was put on the tx assesment list, the docs at newcastle told me they didnt know how my body was still functioning with the results my tests had shown. After they told me that, it was like my mind gave up a little, it could no longer hold the fort as well as it had.
I was thankfully put onto the tx waiting list.
During this time I had studied beauty therapy and hairdressing and was now studying Makeup Artistry.
June 2009 - I went to ROckness and was blue, I was on deaths door and I couldn't walk even tiny steps. I had never experienced a total lack in control like this, my body was shutting down. Aware that this was going to be my last festival I stayed all weekend with my friends. I went home to the hospital to be told they didn't think I could live through this one. The palative care team were being called. I never told anyone about that conversation until after my transplant (tx).
Okay dokes 10th Nov 2009 - Day after my bday and I got a call to say that I had to go to the hospital, they had lungs and I was the standby(means that the lungs were going to someone else but if they were not well I would be next in line), half hour later and I was told I was the reciepient if the lungs were good. And they were.
Nov 11th 2009 I was given thee most amazing gift anyone could ever give, the gift of LIFE and HOPE and POSSIBILITIES where there had been none.
2009- present day I have had such a wonderful time, I got my dream job, met so many wonderful people, I have loved, laughed , danced my heart out, shared the message of transplant and my story to everyone and anyone that will listen. I have also lost my best friend to Cystic Fibrosis but there will be time for all the magical people who are and were part of my life.
And today - I sit in a campsite in France, my partner DOUGIE and I have embarked on a three month holiday around Europe with our doggy Dexter.
And I have chronic rejection, my lungs are slowly being destroyed by the white blood cells in my body (Hey they are only doing their job). Thus the name Chronically Positive. Like I tell everyone, sure I may have had a few rough times of it, but everyone has to deal with the cards they are dealt, I choose to throw those cards as high in the air as I possibly can whilst throwing down some moves on the dance floor, smiling away and singing my heart out. There are only two ways you can live your life, on the Up, or constantly looking down.
Look up to the sky and aim for the stars!! xx
Born Nov 1983 to Nettles and Big Sandy
9 months : Diagnosed with Cystic Fibrosis - mum and dad thought the worst
11 years : Ha a great childhood, sure I took meds and got physio three times a day and knew I wasn't exactly like my big blisters (big sisters) but I was fine with that, I was spoilt more and got to eat what I wanted and I liked to fall asleep whilst my dad did my evening physio singing 'Pretty woman' to me in time with his clapping. After he would carry me up the stairs. At 11 I went into hospital for the first proper time to get polyps removed.
13 years : First set of IV's followed by a whole lot of IV's , weight was falling off me, infection was rife and the doctors warned my parents that I was faling down a steep slide that they had no idea how to stop. I spent my birthday in the hospital, I first began doing Nasal gastric feeds (yuck that took me a while to get used to) and my life changed rapidly.
13+ years : I was diagnosed with Diabetes YAY! I say yay because we now had a reason as to why I was so gravely unwell.
TEENAGE YEARS : Not only dealing with crazy hormones, all you buddies are growing boobs (even the boys had bigger ones than you) and hips and I wasn't anywhere near puberty in my body yet I had the hormones to fancy nearly every boy that stood within a metre radius of me. Looking back I'm glad I was an ugly duckling (if you had seen pictures of me before you'd understand that my formative years were much worse than my older years. My sistes teased me calling me cliff hanger - cue a very amusing night of charades for them and tears for me, as my dad tried to hide laugter whilst giving them into trouble) I never got involved with boys.
I do remember CF hitting me like a brick when I was approached by a boy in school who said to me " I heard your not going to live till your 18" BOOM, well FECK YOU TOO!
I got three monthly preventative IV's and regularly was in for antibiotics when I needed them. I continued with the feeding through all my teenage years, I would become the nasal gastric queen.
LATER TEENAGE YEARS : I tried to smoke once, thinking it would instantly make me seem a lot cooler- it didn't I choked I thought better of doing that but my friends like to remind me every so often about that.
I started to drink and tried my hardest to hide it from my parents, they weren't stupid but neither was I a huge drinker. Until the night at Monklands, we may come back to that.
I got accepted into uni at Caledonian to do Fashion with business, great! Clothes making!! NOT, it was all business. I like to blame the fact that clothes making wasnt a huge part of it as to the reason why I dropped out after a year. However, I liked going out too much, I liked to party and I went through a damn crazy time where I didnt take my meds or do anything remotely related to everything I should have been doing for CF.
I call this time my TRULY CRAZY ARE YOU FECKING NUTS DENiAL TiME. I got a job in Miss Selfridge and sometimes showed up for Uni, I partied, I felt great, I began asking myself are the doctors right? Do I really have CF? Maybe all this time 17 FRICKING years they have been wrong, and then I went on fmily holiday with my sister and her wee one Tamsyn. And I got a cough, and I got ill, and on my return I couldn't push my trolley with my bag on it.
TURNS OUT THE DOCTORS WERE RIGHT -I HAD CF - ha ha ha I was sat down by my CF team with my parents and told by my doctor that if I were to carry on, on this route to self destruction I would most certainly reach that DESTRUCT button much faster than I even though.
So I buckled down, gave up Uni, gave up work, it's pretty amazing what getting told you are going to die can do for you.
I bubbled through life having ups and down health and well being wise and then I met someone and I really wanted to try my hardest, I was still doing feeds, I was still doing physio, I kept all this quiet from him for three months.
We were together for a year and a half before the shit hit the fan, my CF had been declining slowly, low lung function but I was still functional - it's amazing what your body can cope with.
I had a MASSIVE lung collapse in his room one night, I apologised to him that I was going to die right here.
I didn't and again we will delve into this at a later date.
I was put on the tx assesment list, the docs at newcastle told me they didnt know how my body was still functioning with the results my tests had shown. After they told me that, it was like my mind gave up a little, it could no longer hold the fort as well as it had.
I was thankfully put onto the tx waiting list.
During this time I had studied beauty therapy and hairdressing and was now studying Makeup Artistry.
June 2009 - I went to ROckness and was blue, I was on deaths door and I couldn't walk even tiny steps. I had never experienced a total lack in control like this, my body was shutting down. Aware that this was going to be my last festival I stayed all weekend with my friends. I went home to the hospital to be told they didn't think I could live through this one. The palative care team were being called. I never told anyone about that conversation until after my transplant (tx).
Okay dokes 10th Nov 2009 - Day after my bday and I got a call to say that I had to go to the hospital, they had lungs and I was the standby(means that the lungs were going to someone else but if they were not well I would be next in line), half hour later and I was told I was the reciepient if the lungs were good. And they were.
Nov 11th 2009 I was given thee most amazing gift anyone could ever give, the gift of LIFE and HOPE and POSSIBILITIES where there had been none.
2009- present day I have had such a wonderful time, I got my dream job, met so many wonderful people, I have loved, laughed , danced my heart out, shared the message of transplant and my story to everyone and anyone that will listen. I have also lost my best friend to Cystic Fibrosis but there will be time for all the magical people who are and were part of my life.
And today - I sit in a campsite in France, my partner DOUGIE and I have embarked on a three month holiday around Europe with our doggy Dexter.
And I have chronic rejection, my lungs are slowly being destroyed by the white blood cells in my body (Hey they are only doing their job). Thus the name Chronically Positive. Like I tell everyone, sure I may have had a few rough times of it, but everyone has to deal with the cards they are dealt, I choose to throw those cards as high in the air as I possibly can whilst throwing down some moves on the dance floor, smiling away and singing my heart out. There are only two ways you can live your life, on the Up, or constantly looking down.
No comments:
Post a Comment