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.

xx

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

Overdosing... Oops.

Sooo. I'm an idiot.

For the last 5 days, I've been overdosing myself on Septrin.

When I'm in Papworth, or I've had a prescription from there, I have to take 2 480mg tablets. But my chemist at home supplies me with 960mg tablets.

Now I KNOW this. My chemist has ALWAYS given me the same version. But for some reason. Since I came home wednesday night, I've been taking 2 960mg tablets, at each dose. Habit I think.

I only discovered this today.

My chest was really tight, and my breathing is pretty rubbish. My resp rate and pulse have been stupidly high. And I've been having really bad headaches, which I had assumed was my sinuses, which had confused me anyway, cos my sinuses normally improve with IVs... But this makes sense now! Lol. And I'd just felt generally rough today. I was shaking and shivering constantly, had no energy and I was scaring myself a little.

I actually text Matt, to see if among his medical contacts, he had someone who would know what the best thing to do was. We're getting on okay-ish recently and we're back on speaking terms, and I hate on-call doctors. With a passion. But between texting him, and him ringing me back, I totally panicked at just how bad I felt. And everything always feels worse and more significant when you actually KNOW there is a problem. So I rang Papworth, and put up with the fact I'd have to deal with some on-call dr. (Because naturally this had to happen after the 9-5 CF nurse hours. GRR!)

So anyway, I rang Papworth to inform them of my stupidity, and ask their advice, and theyve said to stop it completely, and come in for clinic on wednesday. Need to have blood tests done now to check if I've done any damage to my liver, because thats already temperamental.

At least I now know WHY I felt so bad. And hopefully I can start to improve now.

I still feel pretty crap, but I'm hoping it'll slowly ease up.

I amaze myself with how thick I am at times. I mean, with the amount of drugs I'm on, I was bound to mess up one day. But 5 days in a row is kinda extreme... Certainly wont be making this mistake again.

And yeah... Let the mocking commence.

xx

Drugs!

Random Picture Update.

Drugs!

My Morning and Evening Pill collection... Except Domperidone. Which I have somehow run out of. Ooops.

And me. Posing. Cos I could. =) Lol.

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

I want to Rattle!

So, just sorting through my drugs, working out what I need topping up on. And thinking about stuff.
So I thought I'd write down whats in my head.

It still amazes me, the amount of stuff I'm on now, In comparison to a couple of years ago.

Creon 10000 - Every time I eat
Azithromycin 250mg (Antibiotic) - Once a day
Septrin 960mg (Antibiotic) - Twice a day
Carbocistine 750mg - Twice a day
Uniphyllin 200mg - Twice a day
Ursodeoxcholic Acid 900mg (Liver) - Once a day
Esomeprazole 40mg - Twice a day
Domperidone 20mg - Three times a day
Ranitidine 150mg - Twice a day
Vitamin E - Once a day
MultiVitamin BPC - Once a day
Vitamin K - Once a day
Calcichew D3 Forte - Twice a day
Sodium Docusate 200mg - Twice/Three times a day
Qvar (Inhaler) - Twice a day
Salmeterol (Inhaler) - Twice a day
Spiriva (Inhaler) - Once a day
Salbutamol (Inhaler) - Three times a day + When required
Hypertonic Saline (Nebuliser) - Twice a day

And that is just the regular stuff for when I'm well, no extra antibiotics, no steroids, no painkillers.
It drives me mad when people complain about taking a course of antibiotics for a week. Selfish I know. And I generally keep quiet. But it really does annoy me at times. Lol.

On some days you can add any of the following:
Prednisolone 40mg (Steroid)
Flucloxacillin 1g (Antibiotic) - Four times a day
Tranexamic Acid (when coughing up blood) - Three times a day
Salbutamol Nebuliser - Four times day
Ondansetron for sickness - Four times a day
Levopromezine for sickness (Spelling?) - Twice a day
Ibuprofen/Paracetamol/Diclofenac for sinus/joint/chest/stomach pain - As many times as I can get away with
Nasal Sprays
Selection of IV drugs

This is the part that people who dont have CF, cant always understand. Even my family dont really get it still. People assume, that being 'well' is easy, you just feel good, and sit around feeling 'normal'.
It doesnt work that way. CF doesnt disappear just because you're not feeling particularly bad that day. Its still there, and you're still fighting it every single day.

Just some days, you win.
Some days, it does.

When its winning, its harder, theres more to do, extra stuff to remember, when you're already struggling.

And people forget you still need support when you're at home. Because if anything, hospital is easy. Sure, it sucks being away from the people you care about, but someone else takes control for a little while. When you come home, you have to find your routine again, start managing all these things you need to do, and take.

Anyway, I'm done I think. Lol.
Guess I'm just thinking a lot today.
I dont feel 100%, mums got a virus, and I think I'm picking it up. I dont want it, because it will put me in the hospital. =/
Stupid body. You'd think it could learn to protect itself a little better. I'm holding up my end of the bargain, just wish it would work a little harder on its end.

Lovelove xx