how much a of a self-involved, own-illness obsessed prick must i be to have taken SIX ENTIRE WEEKS (including two lame unanswered texts to him and an unmentioned xmas card) that the reason I was hearing nothing about Jonny, my strong CF boy i was in touch with the most, has now also been taken for the angels?
I couldnt even drag myself onto facebook and just check his profile, just in case, when i worried about getting no texts? fuuuuuuuuuuuuuuuuuuuuuuck.
What a sad sad thing. Breath Easy now Jonny, I loved you man and I wish I'd gotten through to leave my message to you sooner. Sorry honeybun
xxxx
Showing posts with label Breathe Easy. Show all posts
Showing posts with label Breathe Easy. Show all posts
Thursday, December 30, 2010
Friday, June 25, 2010
Scared.
Just to warn you, this wasn't written with me in a very good mindset at all. It's not exactly a skip-through-the-flowers type read.
Things are really not good.
The temperatures are back, my sats aren't improving, and every single breath is a fight at the moment. I'm swollen in my face, hands, feet, ankles, even my back if you can believe it! - it could be the prednislone but more likely my body is using up proteins faster than I can take them on, because of the infection. We just don't understand where this is coming from - I was on the up: infection being dampened down once again, CRP falling; albeit slowly, and BAM, I'm back at square one, or possibly worse.
And I'm really scared. To me, the worst feeling in the world is not being able to breathe - it's why I was so scared of the bronch, it's why I've spoken to my mum about the fact that if it can possibly be avoided I never want to be intubated - I don't want a machine breathing for me, however contradictory that may seem.
You might not know this about me, but I think about death...a lot. Like, on a daily basis, at least. Especially in recent months, since my health has become a more serious issue for me. I've had to realise that actually, I have a disease that will kill me, is killing friends and acquaintances and strangers as I speak. But I'm not scared of dying. In fact, I might even go so far as to say I'm interested! Okay, maybe that doesn't sound quite right. Maybe I want to be like Peter Pan, thinking, "To die, would be an awfully big adventure." I am however, scared shitless by what might come before. In the last weeks or days before "it" happens...how hard will it be to breathe? I have dreams about it: I'm breathing through treacle; oxygen is sucked out of me before I can use it; I'm drowning in myself. And the thought of that makes me so so afraid, so scared that I cry, for hours and hours every once in a while.
And I'm scared of what happens after.
What will my dad do, alone in his big house, with my bedroom empty, and all the "stuff" that makes up a life just sitting there useless? How will my mum cope with me not being around, or peoples sympathy?
I fucking hate this disease. I'm disgusted when I think about it. It makes me sick to my stomach to think of how CF is ravaging my body and the bodies of my friends, when it shouldnt exist at all, it's too much. Why should however many people each week or month or year die because they got unlucky in some genetic lottery, so they are sentenced to slowly drown in their own secretions?!
This is so fucked up.
Also affecting me and my mindset today is the news of another CF death, 7 year old Conner is now breathing easy, my thoughts are with all of his family and everyone who knew him. Reading his mother's blog has been especially raw for me in the last few days when I have been struggling so much myself, although of course nothing compared to what Conner has been going through, I just thank her for her honesty and openness. I think she is a very brave woman.
No matter what happens I will always be grateful that I have been allowed time to grow and experience some of what the world has to offer, I have become an adult. No-one should have that oppurtunity taken from them like Conner did, and I'm ashamed to say that I might not have remembered this if it weren't for Sarah's blog.
It's a rough read but if anyone wants to take a look - http://notsobrightandshiny.blogspot.com/
I'm sorry for the depressing subject matter. Trust me, this doesn't even scratch the surface of my thoughts at the moment, some of them are too scary to let out into the world until I can control them myself.
Things are really not good.
The temperatures are back, my sats aren't improving, and every single breath is a fight at the moment. I'm swollen in my face, hands, feet, ankles, even my back if you can believe it! - it could be the prednislone but more likely my body is using up proteins faster than I can take them on, because of the infection. We just don't understand where this is coming from - I was on the up: infection being dampened down once again, CRP falling; albeit slowly, and BAM, I'm back at square one, or possibly worse.
And I'm really scared. To me, the worst feeling in the world is not being able to breathe - it's why I was so scared of the bronch, it's why I've spoken to my mum about the fact that if it can possibly be avoided I never want to be intubated - I don't want a machine breathing for me, however contradictory that may seem.
You might not know this about me, but I think about death...a lot. Like, on a daily basis, at least. Especially in recent months, since my health has become a more serious issue for me. I've had to realise that actually, I have a disease that will kill me, is killing friends and acquaintances and strangers as I speak. But I'm not scared of dying. In fact, I might even go so far as to say I'm interested! Okay, maybe that doesn't sound quite right. Maybe I want to be like Peter Pan, thinking, "To die, would be an awfully big adventure." I am however, scared shitless by what might come before. In the last weeks or days before "it" happens...how hard will it be to breathe? I have dreams about it: I'm breathing through treacle; oxygen is sucked out of me before I can use it; I'm drowning in myself. And the thought of that makes me so so afraid, so scared that I cry, for hours and hours every once in a while.
And I'm scared of what happens after.
What will my dad do, alone in his big house, with my bedroom empty, and all the "stuff" that makes up a life just sitting there useless? How will my mum cope with me not being around, or peoples sympathy?
I fucking hate this disease. I'm disgusted when I think about it. It makes me sick to my stomach to think of how CF is ravaging my body and the bodies of my friends, when it shouldnt exist at all, it's too much. Why should however many people each week or month or year die because they got unlucky in some genetic lottery, so they are sentenced to slowly drown in their own secretions?!
This is so fucked up.
Also affecting me and my mindset today is the news of another CF death, 7 year old Conner is now breathing easy, my thoughts are with all of his family and everyone who knew him. Reading his mother's blog has been especially raw for me in the last few days when I have been struggling so much myself, although of course nothing compared to what Conner has been going through, I just thank her for her honesty and openness. I think she is a very brave woman.
No matter what happens I will always be grateful that I have been allowed time to grow and experience some of what the world has to offer, I have become an adult. No-one should have that oppurtunity taken from them like Conner did, and I'm ashamed to say that I might not have remembered this if it weren't for Sarah's blog.
It's a rough read but if anyone wants to take a look - http://notsobrightandshiny.blogspot.com/
I'm sorry for the depressing subject matter. Trust me, this doesn't even scratch the surface of my thoughts at the moment, some of them are too scary to let out into the world until I can control them myself.
Thursday, May 27, 2010
And just to put all of my stupid problems into perspective...
I just found out we lost another CFer today. This shit just won't stop.
Breathe Easy Greg,
xx
Breathe Easy Greg,
xx
Sunday, March 28, 2010
Love love love love
For Eva
I already miss your journal entries, beautiful girl.
I've been wondering what to say since I found out you were gone... All I can think of is goodbye. And I suppose that's appropriate!
I really thought you were going to make it. I spent two days with watery eyes after you posted the video telling us: "my life is ending". It was tagged with the words death, life, and love... I remember thinking if I was going to have a tombstone, those would be good words to put on it to sum up Everything!
but the entries after that were so hopeful, and still had so much of you and your spirit coming through, I thought there had been some mistake. And I really can't believe that I won't read another now.
Well done girl, for being such an inspiration to so many people, and for fighting for so long. Well done for your awesome smile! Enjoy the freedom that I hope you have now.
I wish I had had the chance to know you better Eva.
Breathe Easy!
<3
I already miss your journal entries, beautiful girl.
I've been wondering what to say since I found out you were gone... All I can think of is goodbye. And I suppose that's appropriate!
I really thought you were going to make it. I spent two days with watery eyes after you posted the video telling us: "my life is ending". It was tagged with the words death, life, and love... I remember thinking if I was going to have a tombstone, those would be good words to put on it to sum up Everything!
but the entries after that were so hopeful, and still had so much of you and your spirit coming through, I thought there had been some mistake. And I really can't believe that I won't read another now.
Well done girl, for being such an inspiration to so many people, and for fighting for so long. Well done for your awesome smile! Enjoy the freedom that I hope you have now.
I wish I had had the chance to know you better Eva.
Breathe Easy!
<3
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