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

Wales

Hi my lovlies,

As you may know I do Geography for A level and for one of exams we had to do some field work in Wales.

For the past five days I have been in Wales and I can honestly say I had the best weekend ever.

It was so lovely spending time with my loving and caring friends, who did not only make me smile but also checked up on me and looked after me.

I was very nervous to go on the trip and honesty didn't want to go...but I am so over the moon that I did go.

On the first day we just travelled down in our school mini bus. I slept and listened to music for most the journey but also had so much fun playing cards against humanity with everyone in the mini bus.

Obviously we worked till around 9:30 every evening.

On then second day we went around Cardiff. At lunch we got an hour to explore the city and me and my friends bought Welsh flags to carry around with us!!
We also got to see the amazing Cardiff bay and the Millennium centre.

 On the third day we left Cardiff to go to Aberystwyth. On the journey we drove through the prettiest mountains and hills and had lunch at the loveliest lake.

On the way to Aber we stopped off to climb a mountain at Cader Idris.
This was probably the worst part of the trip for me. I really wanted to climb this mountain, probably more than I've wanted to do anything else in my life. However at just 1/4 of the way up my chest began to cause me so much pain and I was so close to crying. My teachers could tell that I was unwell and in the end my head of year sat next to a waterfall with me for two hours while everyone else went to the top. I was and still and so upset with myself for not managing to go to the top.

On the fourth and last full day in Wales we did our rivers fieldwork. This was so much fun because me and my friends could just chill and mess around all day.
In the afternoon we went into Aber to explore the town. We where given free time to go around by ourselves. Me and Joy took this opportunity to find a tourist gift shop and buy massive Welsh hats which we wore all day. All my other friends where pretty embarrassed by us but I was so happy. We also bought transferable tattoos and Welsh bracelets.

On the last day we travelled back.

I hope you enjoyed hearing about my trip to Wales.

Peace love Iz x

Gathering my thoughts

Hi lovlies,
I've never been any good at expressing my thoughts, be it out loud or online and I just let other people's thoughts overwhelm me and take over my mind.
I wish I could be better at voicing my opinions and speaking up for myself but I hate the feeling of being told I'm wrong or that I can't think of say that because someone else might not agree.
I don't really know what I'm trying to say here exactly but I would like people to realise that putting me down isn't going to make me feel better about myself or make me change the way I act, if anything it's just going to make me weak and isolated.

People often comment telling me that I don't look ill so therefore I cant really use my CF as any excuse for anything. First I wanna say that I wouldn't want to use it as an excuse but just because I look fine doesn't mean for one second that I feel it. Inside I find it hard to breathe. I am constantly tired and find it hard to concentrate because of this.
I don want any sympathy, I just want to be left alone. For the comments to stop so I can feel able to admit when I'm unwell.

The most important thing to me is having supportive family and friends. They understand me.

Maybe it's because I'm unsure of myself or maybe it's because people find it hard to understand things, all I know is that it's not fair.

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

I'm sorry for being so deep and depressing.
Anyway just want to get my thought across, maybe one day people will realise that just because im shy it doesn't mean that I don't have thoughts and opinions.

That's all for now,

Peace love Iz x

Festive holiday updates

Hi lovlies,
So today's blog is going to be all about my Christmas holidays with my amazing family in Sussex.
It was the first time seeing all of them in 4 months so it was very special to me.
On the first day back I went to see my amazing cousin Emily straight away, we have been counting down the days till we where reunited and it was so exiting.

We spent the day catching up, watching Christmas films and putting on fake nails.
It was such a lovely and relaxing day.


That evening I also saw my cousin Becky after so long and it made me feel so happy to be back with everyone.

The next few days I was ill so didn't see anyone, the only thing that really happened in these days was that I was finally productive during physio which was probably down to mixing AD with my acapella.

I also went to see beauty and the beast at the pants and it made the whole Christmas feel super magical and we got to spend the day in Easbourne.

Christmas Eve I went ice skating which was so much fun as it made me feel exited for the next day as I got to skate around listening to Christmas music (I say skate but I mean walk round holding on to the edge ;))

In the evening I went to church with my family and it was so fun.

On Christmas day I got to see all my cousins and uncles and aunts and got spoiled rotten by everyone. I ate every piece of food in the house and playing family games all night.

The next few days up till new year where soent playing games with friends and seeing loads of Emily.

On New Years eve me and Emily went to Poppy's house and watched divergent and played games. At night we stood outside and listened out for fireworks.

I only had a few more days of holiday left at this point so me and Emily tried to do as much fun things as we could. We went shopping in town and in a big shopping mall, we watched the fault in our stars and had a lovely drink in a village cafe.

That's all for my Christmas holidays updates.

I absolutely love my family and and grateful for them all.

At Christmas 2013 I saw JLS for the last time before they split so Christmas 2014 was a year since the split.

That it for now,

Peace love Iz x