Lonely. CF Friends. And Stiv.

Having CF, can be unbelievably lonely. Much like having any illness I imagine.
Being ill, being scared, being worried. Theyre all lonely things anyway.
When you are ill, people dont seem to let themselves get too close. A lot of the time they just dont know what to say. They dont understand. They dont always want to.

You start lying to please everyone else. It starts with the 'I'm fine'. Or 'I'm okay'. Or 'I'm good'. When that couldnt be further from the truth.
But its less intense than, 'Well actually I feel rough. I cant really breathe, I feel like I'm slowly suffocating, and this morning I coughing up a load of blood, and every time I breathe in it hurts...'.

Which then leaves all those thoughts inside your head. Afraid to let them out. Afraid to scare people, worry people, hurt people, push them away.

Lonely.

So this is why I'm so eternally grateful for my CF friends.

I joined the forum, on the CF trust website, when I was 13. It was actually my consultant who mentioned it to me. At the time I'd never had an inpatient stay in hospital (I miss those days!), and didnt know anyone else with CF.
I was a lot younger than a lot of the people on there, but I read a lot, and talked to a few people. Without trying to sound braggy (is that a word?), I've always been fairly mature, and intelligient, so my age didnt put me off too much. And it made things a little less lonely.

As I got older, I got to know a few people more personally. And we grew through the bebo and myspace phases too. Now its facebook. And I know so many people with CF.

When I have a problem, I know I can probably find someone to help me within minutes. Cf related or not. I've met people who have become my best friends. People I could not imagine a life without anymore.

I remember vividly, being upset in high school, because someone had passed away, that I knew online. One of the girls asked me, why I was so upset about someone I didnt even know.
I couldnt explain then, I didnt understand fully myself.

Now I realise, you dont need to meet someone physically, to know them, to care about them. You just need to let them into your life, and into your heart, and for them to do the same.
Thats all it takes to know someone.
Take Stiv, or Pete Franklin, they probably 'know' me, far better than most the people I went to school or college with.

Even my family dont understand really. There are 2 or 3 people that they would probably understand about, but in general, they dont get why it hurts when my 'online friends' are sick, or when they pass away.

I dont really see them as online friends anymore. I love them as much as if they lived next door.

Some of the people I love most in the world, I have never 'met'.

Stiv is the best example of this.

I'm a little reluctant to write about him. Because he gets really big headed when I mention him... ;) Haha. Bless him.
He is the one person I trust most, in the entire world. I can tell him absolutely anything, and I do. He knows pretty much everything there is to know about me.
I love the way we can have really deep and meaningful conversations, and then switch to being random idiots, just like that. He makes me laugh, every day. And can always make me smile, no matter how miserable I am, how angry I am, how much I want to scream.

We live on opposite ends of the country, but thats irrelevant. We text, we call, we webcam, we msn, we facebook... And hes my best friend, regardless of the distance.
Hes been there for me through everything with me. The ups and the downs. The hospital stays, and the partying. The falling in love, getting engaged, and the breaking up. The family stuff, the friend problems, the boy issues... Everything. =)

Never having met him, doesnt make him any less of a friend.

Hes not the only one, not even close...
I love you all.
Each and every one of you.

Every day, you make me realise I am not alone. You give me someone to talk to, when otherwise I wouldnt know where to turn. You teach me something new every day. You look after me, protect me, comfort me, entertain me... You make my life so much better, just by being a part of it.

xx

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

Loneliness = Crap

Loneliness.
Its a horrible feeling.

People seem to assume, that not working, is really great for me. That I'm so 'lucky' to not have to get up in the morning and drag myself off to work.

The thing is, I'd absolutely love it. I dont not work because I'm lazy, its not that I dont want to. Its that, in a world where its a nightmare to find work anyway, the fact I'm in hospital every 4-6 weeks makes it a whole lot harder to find something suitable.
After the last couple of months, I struggle to get showered and dressed in the morning, or walk the 3 minutes to the shop, let alone work anyway. But still. I'd love to.
When I was at college, and I was doing my placements, I was working 8 hour days in a nursery, running around after toddlers 2 or 3 days a week, and working full weeks during the holidays when there was no college. I was there every spare minute, unless I was actually too sick to be there.
But this was 2 years ago now. This was when my lung function was still sitting in the 70's a lot of the time. When I could manage longer than a month without IVs.

So its not laziness. Its my health. I'm no longer well enough to work a proper job. Simple as.
So I stay home. I do the housework. I do the cooking. I do what I can to help at home.

But people dont realise how lonely it is. I spend hours and hours, on my own, or staring at the computer. Working, is a huge part of peoples social lives. A way of making friends, seeing people. I dont have that.
I have to rely on the friends who've stuck by me since school and college. And most of them, are out working! Or at Uni. Or both. So I still dont see them.
And no working = no money. I'm on the lowest rate of benefits possible at the minute. I get something like £18 a week. It goes nowhere. I'm reliant on my parents a lot. Which makes it even harder to see friends and have any kind of social life, even when I'm well enough to want to go out.

Basically, being alone, sucks.

Not working, sucks.

And people thinking I'm lucky to not work, is driving me insane.

On the plus side, some anonymous person has made a donation to our sponsored walk. And I love them very much. =)
Sometimes, someone comes along and reminds you that there are some amazing people in the world.

http://www.justgiving.com/Danielle-Canavan0

Lovelove xx