14 May 2011

Life With CF

What is it like to have CF?

This is a post I've been working on for a little while. I've changed it so many times now, I dont think I'll eve be completely happy with it. But here we go... This is what has survived the many edits.

This is just what CF is like for me...

Well, to begin with, there is no such thing as 'normal'. No two days are the same, and when you go to sleep at night, there is no knowing whether the next day will be a 'good' one or a 'bad' one, or anything in between.

You cannot see CF, as such. Until you are really ill, and needing oxygen or a wheelchair, there are no visible signs that you're 'sick'. Maybe a bit pale and skinny, but thats about it. (Although, I dont even have the usual CF weight problems at the minute. My weight is very very good.)
Sometimes there are ports, or pegs, to give little clues, but theyre easily hidden.
This can be amazing, because it leaves you free to live life without being looked at funny, without people staring and asking questions.
On the other hand sometimes it can be a pain because people dont realise, or they forget, that something isnt quite right, or you might have trouble keeping up.
Its a constant battle between wanting to be seen as normal, and making the allowances that you need to stop yourself from struggling quite so much.
For all its nice to be treated like everyone else, sometimes thats just not going to work. Lol.

Most days, its an effort to breathe. Usually breathing is just something people take for granted. Its a reflex. You dont have to think about it.
But a lot of the time, breathing IS something I think about. Because its really hard to get a proper breath in. My lung capacity is only 45% ish, on a good day, and I can feel it. When I breathe in its like my body wants more, it wants to keep going, but my lungs cant physically breathe in any more. I just end up breathing much faster than 'normal'. Its part of the reason breathing is far more exhausting than people realise at times.

And thats just the usual problems. Theres the days when it hurts to breathe, those days suck. When my lungs actually ache, its hard to explain. Just like a dull achey pain when I breathe in.

Then there is all the drugs.
Now I'm lucky in some ways that a majority of my drugs are tablets. I dont have any antibiotic nebulisers because I cannot tolerate them. They just make my airways close up. I say lucky... Thats not really lucky. I'd much rather have the nebulisers, and need less IVs in the long term.
But even so. I'm taking about 50 tablets a day. Plus the enzymes when I eat. So probably about 80 ish tablets a day. On a 'good' day.
I'm only 20... Its not what most 20 year olds have to deal with.
And I have to remember to actually take them. Even after years of taking all these pills, I still manage to forget. I dont know how its possible. Lol.
And making sure I've eaten before I take them in the morning. Because some of them just make me feel sick if I havent eaten. And throwing them up again, kinda defeats the object of taking them... Lol.

And remembering CREON! (Creon = Enzymes to digest food.) Omg. I'm okay if I'm at home, but as soon as I'm out of routine and enjoying myself, I'm not great at remembering to take them. Either that or I go out and realise that I dont have any on me, and then its the dilemma of am I going to eat without them or not... =/
When I was younger I always remember Mum stopping at the front door if she was going out, and double checking she had her purse, keys and phone. It was a little habit of hers.
If only it were that simple when I go out. I need to remember all the normal things, plus creon, inhaler, pain killers, reflux medication, tissues (in case I decide to cough up blood while I'm out)... And then if I'm on home IVs... Well, thats a whole other story. Haha.

It would be easier if CF was just one thing, but it affects so much. Its not just the lungs, its the liver, the digestive system, the sinuses, the joints and bones... Everything.

One thing that frustrates me now, is getting so easily worn out. You have to start making choices. Little things that most people dont have to consider. For example, You can go to the pub tonight with your friends. All you will do is sit and chat and listen to music, but if you go, you'll be too exhausted to go shopping tomorrow for *insert thing here*.
Or one that catches me out a lot is being asked to go out last minute, and then realising that if I want to go out, I need to wash my hair. If I wash my hair, I'll be too worn out to actually feel like going out anymore... So then what do I do? Lol.
Its so frustrating. I want to be able to do everything... I want to do everything my friends are. =(

One of the hardest things I've found about having CF, is making friends with other patients. Its the most natural thing in the world, to start chatting with someone and get friendly. We understand each other on a different level, have things in common, share feelings and hopes and fears...
But once you know them, once theyre your friend, you have to watch them suffering with all the same problems. Knowing there is nothing you can do to help them. Its horrible.
One of the most horrible feelings I've ever had was being in hospital just before Nick passed away. He was only a few feet away, and I wasnt even allowed to go and give him a hug.
It hurt in a way I'd never felt before.
And all the time, all the time this crap is happening to the people you've grown to care about, you cant stop fighting for a second, because you have to keep fighting for yourself.

Theres always that constant feeling, of knowing things wont really get better. There is no cure, theres no magic fix... Things might be stable for a while or they could get worse, but getting significantly better isn't really option.

As much as it hurts though, my friendships with other CF patients mean the world to me. I wouldnt give them up for anything.
Some of them have grown far past the fact we have CF, and become my closest friends.

Its one of the very few advantages to having CF, it has brought some amazing people into my life. For that, I am very grateful.

It can be completely depressing at times. I have my days when I just want to stay in bed all day, and cry, and ask 'why me?'.
But at the end of the day, it could be worse.

It could always be worse.


(Hope most of that made sense in the end... Lol.)

1 comment:

  1. This is brilliantly written. It's so hard to find the right words to describe something but this sums up everything perfectly! I love my CF friends to bits but loosing friends is the hardest thing ever and very rarely to "normal" people loose friends so young and they find it difficult to understand why you're so upset loosing someone you've never met.

    Just read you're next post too, so hope you're lungs start behaving themselves!! Coughing blood is plain annoying!!!