28 March 2011


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?'



  1. I wish I could give you a real big hug xx

  2. I understand how you feel, i think most cfs have felt like that so your not alone hun. You have had a rough time of it but your a strong one you are :)
    The good news is people can get t hrough the blips and regain some lung function so don't you give up on it :)
    I can't make the cf go away or the stupid ivs and bugs but i can always offer you an ear to rant to, or to have random duck conversations with.

    Thinking of you. Here if you need me

  3. I'm really sorry that you are feeling lonely, it's the worse feeling in the world being so far from home and only having a few visitors. I agree about the cross infection rules, I know they are for the best but still.. I remember a time when we could mix and I miss how being in hospital could sometimes be fun (!) when a group of us got together and just talked and laughed into the early hours. I miss that so much.
    Sending massive non buggy hugs