What not to say to someone with CF

Hi lovlies,

I'm so sorry that I didn't write a post yesterday but I was so busy at a talk.

Today I thoguth I would write and explain a few things that you should never say to someone with CF.

1. You don't look ill/you look so well and healthy

The reason that i many not look ill is because my lungs are not on my face. CF is an invisible illness and inside we are suffering so much pain and when we are at our worse we sturuggle to walk and find it a challenge to tackle stairs.

We may be able to put on a smile and pretend to look like we are keeping it together but inside we are crumbling at the strain of life.

Don't let a face of make up mislead you.

Not all of us may use a wheelchair but that does not mean for one second that we are not disabled.

However, this doesn't mean we want sympathy or to be treated as invalids. We try as hard as we can to be like everyone else.

2. So CF is like asthma?

No no no no NO. CF is nothing like asthma and when people say this to me I want to tell them to piss off.

Asthma causes coughs and wheezes but this should not be compared to CF.

CF is a life shortening/threatening illness that effects many organs (I have already done a post explaining the problems that CF cause).

By no means am I saying the asthmas isn't serious and I am aware that it can cause many problems but it is a completely different illness to CF so the two shouldn't be compared.

3. At least it's not cancer.

Why is it that there is only one disease that gains to much attention from people, while other illnesses are pushed to the side.

Many people that are in the end stages of CF or have severe CF are also on oxygen and have feeding tubes, Central lines or other treatment machines. The medication lists go on and on and the illness also causes people to develop anxiety and depression. As we go throught our own journeys we also see and hear about other suffers who have passed away.

Our illness medication and traeatment can be as aggressive as that of cancer patients.

All illness deserve attention and should in no way be compared to eachother.

After all neither illness has a cure and so patents of both are faced with struggle and the threat of a short life due to the illnesses.

That's it fot this post. I would just like to say that I am in no way saying that asthma is a lesser  illness than CF nor am I saying that cancer doesn't deserve the attention it gets, because it does. All the money and charities that raise money for cancer are amazing and it is such a cruel and evil illness. However it shouldn't be compared with other illnesses and CF is just as serious and damaging.

Hope I've not a offended anyone.

Peace love Iz x

Celebrities and CF

Hi lovlies,

It's day three of awareness week so I've decided to do a post on celebrity connections with CF.
Today's post will be much shorter than the last two because I wanted to make sure that my blog wasn't getting too boring and I'm also trying to interest as many people as possible so that more awareness can be made.

The first celebrity is Ben Shepard

Ben became a patron of cf in 2003 and has also run four marathons for the trust.
He has also hosted a number of balls and events for cf as well as hosting a team at their golf events.



Prince Charles-

Last year the Prince of Wales became a patron of the CF trust as the charity celebrated its 50th anniversary.

Miley Cyrus-

In 2007 Miley got a tattoo saying 'just breathe' after her friend passed away from CF.

Ed Westwick aka Chuck from gossip girl also put this picture on his Instagram.

All time low also attended and event which raised money for CF and also tweeted about it.

The singer Bianca Nicholas who is part of the musical duo Electro Velvet, who took part in the 2015 Eurovision Song Contest, has Cystic Fibrosis herself.

Many other celebs have also raised awareness by wearing CF t-shirts.

Finally, One Republic dedicated their song 'I lived' to CF as well as raising awareness and educating people about the illness through their music video.

That's it for this post guys, I'm sorry if I missed any celebrities out and if I have I will be sure to add them in.

Hope this was interesting.

Thanks for reading.

Peace love Iz x

My CF story

Hi lovlies,

So it's day two of awareness week so I thought I would tell you all about my life with cf so far.

Ive not told many people this whole story before but that's mainly because it never comes up.

Since the day I was born I've been in and out of hospital with many problems (none of which I really know) but around the age of six I started to develop a persistent cough.

After being repeatedly told that it was a habit cough the DR finally decided to do a sweat test.

I think I had two of these done and both came back positive for cystic fibrosis.

It was very hard on my family to hear this news and many people close to me had never even heard of it before so I imagne that it was very hard for them to ubderstand what was wrong with me.

As soon as I was diagnosed we had a physio come to our house to teach my family how to give me physio, in the form of percussion.

This involved so one tapping my back at different places for around 20 minutes.

I was also started on colomycin (which is an inhaled medicine). It was giving to me through a big machine which took 30 minutes to complete and made a noise so loud you couldn't even hear the tv on full volume.
Since 2010 I've been on the eflow machine which took 5 mins and was silent to the ineb which takes 2 mins and is silent.

Although I was aware that not all my friends where going through this and having to come home early so that they could do their medicine it never bothered me at all (until I was around 13).

The main problem I remeber having throughout primary school was severe pancreatitis. I had many admissions over the years as the pain used to be so bad in my tummy that I couldn't walk and I couldn't eat meaning I had to be on a drip.

This pain was caused by high amalase levels.

At this point I was started to creon 10000 which I have to take every time I eat to help digest my food.

One DR also decided to put me on a low fat diet to control the foods that I was having to digest, so for three years I wasn't allowed to eat chocolate :( however as I started secondary school I used to eat what I wanted when I wasn't at home and it was later decided that the low fat diet made no difference and was completely pointless.

When I started secondary school my pancreatitis started to reduce and I was told that I would 'grow out' of the pain and eventually my pancreas would stop working.

My main problem now was chest infections. As I became older I started developing more and more infections and for the most part there wasn't a time that I didn't have either pseudomonas or staphylococcus.

My first IVs where in 2012 as my lung function dropped from 80% to 50%.

These helped a lot and although I still had many infections none of them needed IVs again until 2014.

This is when I develped APBA. I was admitted in February after asking my DR because I was aware that my LF had dropped to 50% again and I had lost a stone in weight (with CF, weight gain is extremely important in maintaining good health).

These IVs didn't help me and it wasn't until annual review that my DR found out what infection I had and what meds I needed.

So in March I went back into hospital for another two weeks which finally improved my LF and I was given drink to help me gain weight as well as steriod to help control the inflammation in my lungs and also give me chipmunk cheeks (which I can't seems to shift).

This meant I missed 4 weeks of school right before GCSE's.

The APBA came up again at the end of 2014 so I had another two weeks of IVs in December which also helped me a lot.

Now I am currently waiting for the results of my annual reveiw to find out how I am doing now. All I know is that I currently have APBA again and a microbaterica infection.

My current medicines-
- accapella (physio) twice a day
Inhaled medicine-
-promixin- twice a day
-DNase
Inhalers-
-fostair
-ventolin
Pills-
-creon- 13 a day
-fluclox- 2 a day
-vitamin a and d
-calci chew

Sorry for this super long post. I hope that it wasn't too boring. Thanks for reading.
Please be aware that I have not covered every problem that I have had with CF as some are small and others are too personal and I also didn't want to make this any longer.

Peace love Iz x

Cystic fibrosis awareness week

Hi lovlies,

So today marks the beginning of Cystic Fibrosis awareness week in the UK.
My aim is to raise as much awareness as I can so I have decided to blog post days this week to help people to learn about this illness.  Today I'm going to explain what cf is and how it affects sufferers.

What is cf? 

Cystic fibrosis is a life threatening, inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.
The illness affects the lungs and pancreas and well as playing a damaging effect on our liver, bones and sinuses.

Due to the increased mucus it is easier for cf suffered to develop regular infections which add to the damage to our lungs and cause reduced life expectancy if they cannot be treated successfully.

The average life expectancy of someone with cf is 40, however children that are being born with cf today are living much longer and healthier lives due to the new treatments that are being developed.  

What causes CF? 

People have cystic fibrosis because a faulty gene is passed from the parents to the child.
Cystic fibrosis can't be caught or developed. If you are not born with cystic fibrosis you will never have it, but you could be a cystic fibrosis gene carrier. However, some people with cystic fibrosis are not diagnosed until later in life.

How is it diagnosed?  
Increasingly cystic fibrosis is being diagnosed through screening, but some babies and older children (and even adults) are diagnosed following an unexplained illness.


Screening- 
Newborn screening 
This test involves a heel-prick sample of blood.
Carrier testing 
A simple mouthwash test can determine if you are a carrier of the defective gene that causes cystic fibrosis.
Antenatal testing
Used early in pregnancy.

Other tests 
There are a number of other ways of testing for cystic fibrosis, such as the sweat test (people with cystic fibrosis have more salt in their sweat) or a genetic test, where a swab is rubbed gently on the inside of the cheek to look for the faulty gene.

I was diagnosed when I was six years old after having a sweat test.

What's treatments are there? 
There are many different treatments that people with cf can do to control symptoms.
For example, physiotherapy which is done to shift and hopefully help to bring up mucus. This will help to clear our lungs each day.
Inhaled medication is used to control or prevent infections.
Tablets- Antibiotics to help battle an infection.
Enzymes to help digest food.
And many others which help with bones and liver problems.




Awareness is extremely important because this illness if not that well know. Each year new medication and trials and developed and carried out and this is due to more people becoming aware of this illness and raising money so that these developments can be funded. It would mean the world to me if you would either spread awareness of donate yourself.

To donate go to - https://www.cysticfibrosis.org.uk/get-involved/ways-to-donate/online-donation



Thanks for reading,

Peace love Iz x

Radio 1 Big Weekend

Hi lovlies,

So it's be ages since I last did a blog post but exams got in the way.
So since I last wrote, I managed to cross something off my bucket list so I wanted to make a post about it.
On the 23rd of May, me and my cousin went to the radio 1 big weekend. This event was classified as a festival so even though we didn't camp (you couldn't anyway) I'm still going to let it count.

We arrived at 12 which was just in time to see 5SOS open the big weekend! They where insanely amazing and it was so surreal to see them perform for real instead of listening to their songs on my iPod. Seeing them live didn't sink in until about 2 hours later. It was so much fun to sing and dance around with Emily while soaking up the atmosphere aswell. We where also 5 rows from the front!!!

After 5SOS the next artist we wanted to see was Ben Howard! While we waited we got to sit down and have lunch while listening to the Vaccines and Charlie xcx!

When the time came for Ben to perform we pushed our way through and managed to get second row. Listening to him perform was crazy. His voice is so mesmerising and you could feel the base in your chest. The whole time he performed me and Emily where quite as we listened intently to him! I'm over the moon that we got to listen to him because his music has got me through some tough times. I listen to him while I'm in hospital.

The last band that we listened to was Fall Out Boy! We stood in the middle at first but had to move as people around us started smoking. Luckily the view from the side was much better! After a few songs I noticed some girls running to the front of the stage screaming and to my disbelief I saw Michael, Luke and Cal from 5SOS! They where standing inches from the front bar and we managed to run down and get very close to them! It was so surreal and felt as if we where rocking out to FOB with them as they danced just inches from us! It was the best end to a magical day!

So that's it for now lovlies,

Peace love Iz x