Broken

Today hasnt been my best day.

This isnt going to be the happiest post. Just a warning. If you want happy, I'd skip this entry. =)

I feel like I'm breaking down, if I'm honest.

I'm constantly trying to seem okay. People ask how I'm feeling and I automatically answer, 'Oh I'm okay.' Or, 'I'm good thanks'. All the time. Even when I'm hospital, I'm telling people I'm good. Its a blatant lie, and everyone knows it, or I wouldnt be here. But people accept it. For the same reason I say it. Because at the end of the day, its easier than facing the truth. Denial is easier than acceptance.

How am I really? Well thats hard to explain.

I'm fed up, and frustrated. I'm sick of my life revolving around CF and Hospital.

Since February 2010 I've had 9 courses of IV antibiotics. I've spent a total of 6 weeks on home IVs. And 15 weeks in hospital. Thats 21 weeks on IVs... In the space of 13 months.

And I'm 20 years old. This isnt the life I imagined having, when I was growing up.

I'm angry. Angry at CF, not only for what it does to me, but for my friends. Because its taken away some amazing people, taken my friends, and because I have to watch while other friends suffer.

If I could stop it hurting everyone else, I wouldnt care how sick I was.

And I'm scared, because I dont want to be ill. I dont want to suffer. No one wants that.

Plus it scares me, how little everything surprises me anymore. I'm used to feeling ill. I'm used to coughing up blood. I'm surprised when I'm not in pain.

I'm in hospital at the minute. I'm feeling fairly good, its nearly time to go home. Thats a good thing right... But its also scary. I have a lung function of 47% at the minute. My lungs are working 47% as well as they should be, and I feel good...? I'm learning to function on this level. Its a good thing for me really in the long run, but seriously, if you think about it, and you were so used to being ill that your body was used to it... Its a fairly confusing feeling.

I dont know if I'm really making sense.

And I'm lonely. Both literally, and emotionally. I'm lonely because I'm in hospital, and other than my parents, the only person I've seen is Gavin. I love him to bits for coming to see me, I certainly didnt expect him to.

And I know its not always easy for people to get here, but even just a text, a quick message on facebook, an email, a phone call... Anything. But a lot of people dont seem to bother, I only hear from them if I start things off. Just for a change it'd be nice if people seemed interested in me, without me chasing them.

I know a couple of the other patients on the ward. But its not the same. Cross infection rules means I cant really see them much, as much as I'd like to. Jordy and Daren are both here. I care about them both deeply, but I cant even stand in their doorways to chat without getting moaned at by the staff. If anything that makes it worse. To have friends so close, and not be able to see them.

Cross infection rules are for everyones safety, I know. But they suck. I dont see what harm standing in someones doorway for ten minutes for a chat can do, when they are sat at least a good 10ft away, as far as we know we grow the same bugs, and we're both adults who know not to be coughing and spluttering over each other.

I'm sure the positive effect of a friendly face and a giggle would far outweigh the tiny risk involved. Lol. Rules seem so harsh at times. Oh well.

And emotionally, it gets lonely. I never know who to talk to, how much to tell people, how far to let people into my world. I dont like to burden my family with all my thoughts and fears and emotions. As much as I know they wouldnt mind, I dont want them to worry.

But, people will ask how I am. And I will go on replying with okay, or alright, or good. Because who really wants to answer with, 'Well actually I'm frustrated, angry, scared, and lonely. How're you?'

xx

Day 8

Yay! They changed my drugs!

The consultant was moaning about how I have so many allergies, because I cant have;
Ciprofloxacin
Ceftazidime
Aztreonam
Meropenem
Colomycin

And now we're adding Tazocin to that list. And Tobramycin because of my recent tinnitus issues.
But I still dont want to suffer on drugs I react to, just because it makes things a little more complicated. There is LOADS of IVs they can give me still. They just have to think a bit harder!

I'm on Timentin now anyway. =)

My lung functions hadnt improved yesterday, so it didnt take too much convincing to get them to change the drugs. In fact, they'd actually managed to drop another 2%.
Now I know 2% isnt a big drop... But its still NOT the right direction for my lung function to be going half way into a course of IVs!

xx

I've been struggling with my own emotions the last few days. I'm just missing home. I want my parents, and my friends, and a hug. Not had any visitors since sunday, and wont until saturday. Its hard.
I'm just miserable, and stupidly emotional.
I cried at scrubs last night. LOL!

Stiv and Gavin have been amazing, putting up with my constant harassing them and texting, listening to all my moaning. I love them for it, I couldnt cope without them.
Its helped having Nathan next door to talk to as well. And Daren is around. We've had a few giggles the last few days. We do have some very interesting conversations!
Oh, and Sammie gave me a packet of jelly.
I'm not even gonna try and explain that one... Haha!

I've managed to get out and off the ward a lot today, and enjoy the sunshine. The weather has been amazing. I was wandering around the village today, in a vest top, in march! I walked down to the park and sat on the swings for a while, took advantage of the phone signal and send lots of texts, and rang Pete to say hi. =)
And bought a mini tub of rolo ice cream on the way back. YUM.

I've been trying to do lots of walking, practice for this sponsored walk. And I do love just putting my headphones in, and just walking anyway. Forgetting the world, and vanishing into my music.

Lovelove xx

My Other Home

So, I'm back in Papworth.

My second home.
Feels like my main home sometimes. Lol.

Ironically... Back in the same room I was stuck in for 4 weeks in January. Haha! I seem to end up in here a lot. Perhaps I should like, paint, and decorate, and make it my own.


My lung functions today were 44%. So not my worst, because they were 36% in December. But also not even close to as good as in clinic a couple of weeks ago. =(

Theyve put me on Aminophylline again, so I'm attached to the drip, but I dont mind too much, because it does help. And I'm on Tazocin and Imipenem for now. And theyve started me on potassium because apparently my potassium is low. I dont know what that means... (Note to self: Google potassium)

Nathan is next door, so at least I have a friendly face from time to time. We need to learn morse code! Lol.

Not typing a massive long post, cos my joints are playing up, and my fingers hurt. =/

Lovelove xx