Friday, June 25, 2010


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" 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 -

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.


  1. Lauren you know you can always message me with any deep and dark thoughts you might have!! I've had them all and it's definetly best to get them out even if it is just to me xx

  2. I've actually thought about the same stuff, which I find hard to admit but yeah, the thoughts are there and only b/c of this shitty disease which sucks.

    I know we haven't spoken much for a little while but I AM thinking of you whilst you're going through this stuff, you're definitley not alone and you know where I am :)Mucho loves Xxx

  3. We all get these thoughts when we are ill, its quite natural. Don't feel bad for expressing them. However you must think you can fight this! I am a strong believer in postive thinking even if its for a few minutes a day listening to a song you love! It makes the heart stronger! Your body is a temple, don't let CF take over :o)
    Oh and when you do come to the end (which is not going to be anytime soon btw) you will cope because every person I know with CF who has passed on has done, you cope because you have to just like in life xx

  4. don't feel bad for letting your thoughts out. it has to be done otherwise they will take over and then it becomes difficult to see the light! Like the girls have said, we all get these thoughts...I frequently think about dying and life on the run up to's only natural, especially when you're living with a condition like CF.

    I really hope the docs get to the bottom of what's causing so many problems just now. thinking about you loads xx

  5. I think your feelings are natural. You have every right to feel how you feel. You are a divine being. You have been strong enough to make it this far. Your family will be strong, as well.

    I just lost a close friend unexpectedly, and all I have been thinking about is death. What happens after the big sleep? Do we dream? Are we weightless? Who knows. I guess that is the adventure. I am glad you are talking, or in this case writing, about how you feel. Could be worse if you kept all your feelings bottled up inside.

    Just try to laugh with your family a much as possible. Let them know you love them. Because love is immortal.

    I am sending love and good vibes your way.

    xo - Kristen

  6. I actually don't know what to comment. A million things are running through my head, and it's not like I even know you personally. You know?
    I'm heartbroken that you feel like this, truly I am. I wish you didn't have to go though it.

    I wish no one had to go through it.

  7. Oh Lauren! Your words move me so much. What can someone like me do to help you guys with CF? I'm an organ donor - I now realise that I must register my children too. How stupid of me not to have thought of this before!

    Is there anywhere I can go to learn more or do more?

    My thoughts are with you. You're one hell of a fine lady!!