Well to be honest i wasnt really up for blogging at the moment, but something is telling me that i need to share my thoughts with everyone tonight, and to get everything off my chest for my own good!
After having some amazing news about the new kalydeco drug that im going to be starting in the next few weeks, i cant help but feel guilty about it.
Since then iv had some really sad news about a girl id been chatting to this past few weeks, she was like myself, has cystic fibrosis, heading for transplant just getting the all the go ahead to get onto the list!
i felt like i had alot in common with Nic, esp when it came to wearing her oxygen in public! she started a blog which you can see here by clicking on Nicolas blog! she didnt seem to make a fuss over her illness, just wanted to be treated as a normal person and just got on with things, without making the drama like most people do! proper down to earth girl and proper laugh too!
its really has come as a shock to myself but also iv heard it has for her family too. i knew she was in hospital at the moment as she had a bad lung collapse last week, and needed two drains in to help with it, but in hardcore nic style she was down the pub when it happened and even drove home and then got an ambulance to hospital!! just shows the type of person she was, a proper fighter, iv experianced a lung collapse before and by the sounds of it mine was nothing compared but omg how she managed to drive home is beyond me!!
all seemed to be going well as could be, her lung had come back up and she'd had one of her drains taken out, but sadly she caught a virus and things happened so quick and sadly she passed away yesterday i think.
i always promised myself i wouldnt get attached to people as for my own selfish reasons its so hard to handle when you hear of storys like this, but the problem with having CF is people like nic and myself can come accross as being so normal and as well as we can be, and you grow bonds and friendships with people without realising how unwell there actually are, we talk about it but its almost like your telling a story instead of actually telling your life if that makes any sence... but sadly it only takes one bad virus/ infection and thats it, we forget how fragile our bodys are and how much damage has been done already to our lil lungs, you always want to be positive about life, and dont get me wrong i will never not be that way but.....
things have really hit home for me, and now thats another beautiful young life lost to such a shit horrible illness!!
im so gutted she didnt get her chance to get her life back, we both talked about wanting to go on holidays again with out mates and go out clubbing etc..... she will always be in my thoughts and im never gna stop fighting if anything i feel like im fighting for her aswell now!
thats all...
R.I.P Angel xxx
love love
3,369 hours on transplant list, 4 months 18 days x
After having some amazing news about the new kalydeco drug that im going to be starting in the next few weeks, i cant help but feel guilty about it.
Since then iv had some really sad news about a girl id been chatting to this past few weeks, she was like myself, has cystic fibrosis, heading for transplant just getting the all the go ahead to get onto the list!
i felt like i had alot in common with Nic, esp when it came to wearing her oxygen in public! she started a blog which you can see here by clicking on Nicolas blog! she didnt seem to make a fuss over her illness, just wanted to be treated as a normal person and just got on with things, without making the drama like most people do! proper down to earth girl and proper laugh too!
its really has come as a shock to myself but also iv heard it has for her family too. i knew she was in hospital at the moment as she had a bad lung collapse last week, and needed two drains in to help with it, but in hardcore nic style she was down the pub when it happened and even drove home and then got an ambulance to hospital!! just shows the type of person she was, a proper fighter, iv experianced a lung collapse before and by the sounds of it mine was nothing compared but omg how she managed to drive home is beyond me!!
all seemed to be going well as could be, her lung had come back up and she'd had one of her drains taken out, but sadly she caught a virus and things happened so quick and sadly she passed away yesterday i think.
i always promised myself i wouldnt get attached to people as for my own selfish reasons its so hard to handle when you hear of storys like this, but the problem with having CF is people like nic and myself can come accross as being so normal and as well as we can be, and you grow bonds and friendships with people without realising how unwell there actually are, we talk about it but its almost like your telling a story instead of actually telling your life if that makes any sence... but sadly it only takes one bad virus/ infection and thats it, we forget how fragile our bodys are and how much damage has been done already to our lil lungs, you always want to be positive about life, and dont get me wrong i will never not be that way but.....
things have really hit home for me, and now thats another beautiful young life lost to such a shit horrible illness!!
im so gutted she didnt get her chance to get her life back, we both talked about wanting to go on holidays again with out mates and go out clubbing etc..... she will always be in my thoughts and im never gna stop fighting if anything i feel like im fighting for her aswell now!
thats all...
R.I.P Angel xxx
Nicola Johnson please donate and in memory for nicola x
love love
3,369 hours on transplant list, 4 months 18 days x
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