A Day Out in Llandudno

The past couple of months have been rubbish for me, what with health problems being the main culprit. So I thought a little change of scene was needed to have an escape from the doom and gloom.
Funny how just a day out can lift your mood and help get you back on track to cope with life’s obstacles, isn’t it?!

Me and my family decided to visit my uncle who lives in Conwy, North Wales and we all then went out together to have a walk around Llandudno which is close by.
It was MEGA busy for a Tuesday afternoon I thought but then again, it is the school holidays and it was a beautiful, hot, sunny day.

I thought I’d share some photos I took of the day, I hope you like ’em!

The only bad thing of the day which really upset me was seeing donkey rides on the beach… I can’t STAND them and just wanted to go on over and have a go at the owner of the donkeys. Really do wish they’d stop exploiting animals in this way.

Would’ve loved to have gone on this boat trip around the Great Orme and to Puffin Island. I’ve been on it before years ago when I was like 10 and it was brilliant!

There were LOADS of little stalls all along the pier. Loads of food; doughnuts, cakes, cheese, fish ‘n’ chips and of course, ice cream!

I mean, you can’t NOT have an ice cream at the seaside can you?

Just before the pier they had a Punch and Judy show. It’s been here for donkeys years, I remember coming here with my cousin and watching it as a young kid. So lovely to see it again and to see a new generation enjoying the show!

On the way back to my uncles house, he decided to take us around the Great Orme and it’s nature reserve.
You pay £3 at a little booth and then you can either drive around the Orme or park up and walk around.

It’s DEFINITELY worth doing as the views are just spectacular!! There’s lots of cute sheep and mountain goats around too.

My uncle made us a lovely roast dinner that evening and it was the perfect end to a perfect day!
Sometimes you forget how beautiful some parts of our country are, I can’t wait to come back here again! Maybe I’ll ride on the Great Orme cable car next time…

Liv x

 

 

Llandudno, Wales

The June Edit

This month’s review will only be a short one as I had quite a crappy month and forgot to make notes, my brain doesn’t work when I don’t write thigs down!
Nothing in the month ever seemed to go right, apart from the weather that is… I actually cant remember the last time I saw rain.
I don’t think I’ve ever had a summer like this one where the weather has been so consistently good for more than a week. It feels almost surreal, doesn’t it?~

How typically British I start this post with talking about the weather!

Health

You might have seen over on my twitter that I was in hospital recently. I needed to go onto the ward for a few days for a couple of reasons really… I have been losing weight steadily over the past 4 months so needed to go back on feeds. This is where I connect up a tube in my stomach to a machine that pumps liquid filled with hundreds of calories into me. If you’re wondering just wtf all that shiz is then click HERE to read more.
I also needed to try out a couple of medications in a safe environment as I am allergic to so many so my doctor thought it would be best I go onto the ward for this.

I only expected to be in a few days but my diabetes started playing up whilst I was there and I needed to stay an extra couple of days to get it under control.
I HATED being in… I got the room I had last time I was admitted and its right by the nurses station so didn’t get much sleep. Next time I need to remember to pack earplugs!

It was CF (Cystic Fibrosis) Week whilst I was on the ward, this is where people try to raise money and awareness for Cystic Fibrosis. The nurses on the ward had decorated the whole ward with yellow bunting and yellow balloons. It looked great, I wish they could stay up all the time, our ward needs a bit of decoration I think!
The nurses also ran a raffle and made little yellow ribbon badges to raise some money and they did really well, they managed to raise £600! So proud!

If you don’t know what CF is, take a look at the post I wrote during CF Week and find out!

Blogging Life

I haven’t been on social media much this month as other months but I did manage to hit 1700 followers on Twitter! I’m so grateful to everyone who’s followed me so far.

I’m making steady progress on my Instagram though and have hit 450 followers!
Here are a few of my most popular posts this month…

I have been overwhelmed this month with such kind words from lovely followers and friends on Twitter and Instagram. I cant begin to tell you all how much this means to me, I don’t have many friends in RL (spare the violin) and to have people on the internet who care and spend a little bit of their day sending me a lovely comment genuinely means the world.
Thank you all so much, the blogging community is truly amazing!

 

Life in General

This week I was invited to my boyfriend’s family gathering, a couple of his relatives had come over from Australia to visit. We all met up at a BEAUTIFUL pub in Christleton in Chester called The Cheshire Cat and had dinner there.
There’s a lovely canal right next to it and a great beer garden which we sat in for a while after having dinner and watched the sunset.

canal boat chester
canal boat

Another thing I loved about this pub/restaurant was that they allowed dogs! There were quite a few there and I just wanted to stroke them ALL. I spent most of the day staring at them and saying “awww look at him” to my boyfriend haha! They had dog biscuits on the bar in a jar and plenty of water bowls dotted all over the place too which is great to see.

I ordered fish and chips off their menu and it was cooked to perfection. So tasty and their chips were BIG, proper like tombstones! I seriously hope to go back again soon and try other things they had on their menu and of course, DESSERTS!

sunsetsunset over runcorn bridge

Just before I go I just want to mention my friend Steff and her daughter Sam‘s new blogger’s subscription box – Blogbox
They are launching very soon and they have a competition running at the moment on Twitter where you could win one of their boxes!
It closes on the 15th July so be quick and head over to their Blogbox Twitter account HERE and be in with a chance to win!

blog

Thank you all for reading and I hope you have a great July, lets hope these amazing sunny days continue!!

 

Livvy x

 

Cystic Fibrosis and Me

If you’re a reader of my blog or follow me on social media, you’ve probably seen me talk about my life with Cystic Fibrosis (CF).
Lately CF has been in the news quite a lot but there are still a lot of people out there who don’t know what exactly it is or what it actually means to live with CF.
In this post I want to change that.
I really hope by the end of this post you’ll understand what CF is and if you ever meet someone with CF you’ll be able to understand a bit about them and their life.

 

What is Cystic Fibrosis?

I’m going to quote a CF website here as it explains it much better than I ever could…

Cystic Fibrosis is a progressive, genetic (you are born with it and it’s not something you can catch from someone) disease that causes persistent lung infections and limits the ability to breathe over time.

In people with CF, a faulty gene causes a thick, sticky build up of mucus in the lungs, pancreas and other organs.
In the lungs, the mucus clogs the airways and traps bacteria leading to infections, lung damage and eventually respiratory failure.
In the pancreas, the mucus prevents the release of enzymes which help to break down food and absorb vital nutrients.
People with CF are at greater risk of getting lung infections because thick sticky mucus builds up in their lungs allowing germs to thrive and multiply. Lung infections mostly caused by bacteria are a serious and chronic problem for people living with CF so minimising germs is a top priority!

 

Here are some facts about CF which might be a bit easier to digest:

  • Cystic Fibrosis is one of the UK’s most common life threatening inherited diseases
  • CF is caused by a faulty gene that controls the movement of salt and water in and out of the cells within our body
  • CF affects the internal organs, especially the lungs and digestive system by clogging them with thick sticky mucus. This makes it hard to breathe and digest food
  • Over 9,000 people in the UK have CF
  • Over 2 million people in the UK carry the faulty gene that causes CF – that’s 1 in 25 of the population
  • If 2 carriers have a child together, there is a 1 in 4 chance of their child having CF
  • Over 95% of the UK CF population are Caucasian but CF affects all ethnic groups
  • Every week 5 babies are born with CF that’s 1 in every 2,500 births
  • Every week 2 lives are lost to CF
  • Currently half of the CF population will live past 41 years of age (this was 30 when I was born!) and improvements in treatments mean that a baby born today is expected to live even longer!

 

I found this picture online and it just highlights how CF isn’t just a one trick pony…

cystic fibrosis, cf

As you can see, there’s a lot to handle. A lot of people say having CF and managing it daily is a full time job and I totally agree.
There is so much involved daily to just stay stable and even then you’re not guaranteed you’ll escape an infection…
I will be posting a ‘Day in the Life’ type post later this week so you can understand just what I have to do every day to stay alive.

 

What symptoms are there?

People with CF have a wide range of symptoms but no two people with CF are the same. One person could suffer with a lot of the following symptoms and another could just suffer with one or two.

  • Salty skin.

    Woe to that child which when kissed on the forehead tastes salty. He is bewitched and soon must die.

    This is a quote taken from European folklore and is a very early reference to CF! I myself don’t really taste salty (yes, I’ve licked my arm and nah, nothing) but others I know with CF claim they do. I’m not going to lick them to find out though haha!

  • Persistent coughing.
    This is annoying AF as I have constantly have a cough, doesn’t matter if I have treatment for it or not. Mucus is always waiting to be brought up off my chest and I cough to get it out!
    I found it most annoying when taking my school exams in the exam hall. Do you remember how people would fake a cough then their mates would fake cough too then you’d have a hall full of fake coughing going on? Well some people thought I was doing that when I coughed in exams and then they would fake cough… But yeah, it’s very annoying in quiet places for a long period of time.
  • Frequent lung infections including Pneumonia
    The build up of mucus traps germs and then the germs develop into infections. The key is to keep coughing the mucus up so it doesn’t get chance to develop into these infections.
    Normally I would get an infection approx. every 3 months. I could try fighting it off with tablet medications but repeated use of them now means they don’t work much anymore or I go into hospital for antibiotics given through a vein for two weeks.
  • Wheezing/Shortness of breath.
    I get this occasionally when I am ill but it is a very common symptom of CF.
  • Difficult bowel movements.
    Yep CF can affect my toilet habits… What a great thing you now know about me hey? Because my food cant get digested properly due to mucus clogging up my pancreas I would have constant diarrhoea if I didn’t take artificial enzymes (which are actually pig enzymes!!)

People with CF can also go on to develop several related conditions (CF really is the gift that keeps on giving right?!). They include; Diabetes, thin/weakened bones – Osteoporosis, infertility in men and liver problems.

 

Is there a cure?!

Basically no.

There is no cure for CF out there, only treatments to help manage it.
There are a couple of treatments that have been developed quite recently which have shown very promising results in slowing down the progression of CF but they are VERY expensive. The government here in the UK aren’t keen on funding the costs of it…
People are trying to fight this decision as in the long run it would actually save the government money on NHS costs such as inpatient stays in hospital.
CF patients wouldn’t have to need as many antibiotics…
I have read great things about this drug and pray that I get it one day, ’til then I have to keep working hard to keep my health as stable as possible.

 

Transplant

When a person with CF’s lungs become so damaged and scarred from years of infections they can be listed for a double lung transplant. This in itself is not a given and there is no guarantee they would even make it onto the transplant list to get lungs as there are many tests to go through to determine if that person would be suitable for a transplant.

Transplant truly is the gift of life and I’ve recently seen how much of a difference it can make to a person who has struggled to breathe for many years.
One of my friends with CF 2 months ago received that gift of life and now she can run with her dog and plan her wedding. She can sign up to a beauty course at a local college and start to actually LIVE again whereas before she was virtually housebound and needed oxygen to breathe.

Signing up to the donor register is the most amazing thing you could ever do in life. Live life then GIVE life!

 

My CF Story

I was diagnosed with Cystic Fibrosis when I was 18 months old so basically I don’t remember life being any different to what it is now…
My mum took me to the doctors as I kept having diarrhoea (niiiiiiiiiice) and wasn’t putting on weight. They decided to do a test that had only recently come out to see if I had CF. It was, and still is, called the Sweat Test. This measures the amount of salt in the sweat of a person, in people with CF it is abnormally high.
Along with that test they also did a genetic test to see if they could find the faulty CF gene in my genetics.

It is possible to be a carrier of Cystic Fibrosis but not actually have the disease. It can run in families and there is a one-in-four chance the carrier can pass it onto their own child if they have children with another person who also carries the disease.

This may explain it slightly better…

cystic fibrosis

If you are worried that you could be a carrier (there are no symptoms so you wouldn’t know) and are planning to have children in the future with your other half then you can ask for a genetic test to see if either one of you are a carrier.
I always encourage friends and family members to get tested as I wouldn’t wish this disease on my worst enemy… Please consider it.

 

Back to me…
I was very lucky throughout my childhood, I only had to go into hospital once for antibiotics but I know of people who spent their childhoods on children’s wards. I’m forever grateful that I didn’t.
I still had to be seen by my team of doctors/nurses every 2 months to check I was doing okay but other than that I was very lucky to have led a relatively ‘normal’ life.

Things started changing when I was 13, probably because I was in high school now with a lot more people. More people = more germs and what do more germs make? Yep, INFECTION. Good… you’re learning!

I started needing antibiotics every 3 months for 2 weeks at a time. When I look back at that time now I don’t know how I did it… A child being cooped up in a room on a ward for 2 weeks (I was allowed to go home for a few hours at the weekend), it’s just WRONG. Glad to say things have moved on and children with CF are encouraged to have that treatment at home via their parents who are trained to administer it.
I did that all through my teenage years, sadly, up until I passed my driving test and I was free to come and go from the ward as I pleased. I cannot tell you the difference it makes…

I had my first operation at 15 to put in something called a portacath.

portacath
My veins were/still are wrecked from the thousands of needles I’ve needed over the years to pump antibiotics through so this was a more permanent fixture. It is connected to one of the main arteries.
It honestly is my best friend so when it needed replacing years later I wanted it doing asap.
You cant see the box, it’s inserted under the skin so to look at me, you wouldn’t even know I had one.

My second operation was to fit a feeding tube in my stomach. This was something I’d been dead against for YEARS but my weight at the time was rock bottom and this was the only solution.
I was awake for the whole operation and it wasn’t pleasant, they’d cut into muscle so every time I moved afterwards it was SO sore. But it turned out to be one of the best things I EVER did.
This is it below. It’s placed just above my belly button and it’s a total lifesaver when I’m really ill and I find it difficult to eat.

mickey button

I just connect it up to a pump and it pumps a liquid filled with HUNDREDS of calories into me overnight as I sleep. And no, I haven’t ever tried putting alcohol down it, I cant tell you how many people have asked me this over the years!!

 

CF-Related Diabetes

I was diagnosed with CF-related Diabetes about 4 years ago now. I knew it was coming as my test results had been showing signs of it developing for some time. It didn’t really faze me to be honest, it was just another thing I had to learn and get on with.
I do have to inject insulin every time I eat a meal which is annoying when you are starving and just want to eat all the delicious food straight away. But if I don’t inject, I’m absolutely exhausted for hours after.
But then I can go the other way where my blood sugar goes too low… This is extremely dangerous as I can go into a coma and die if I don’t treat it by eating things that will bring it back up again – hellooooooooooo jelly babies!

 

So there you have it, I really do hope that you understand a bit more about my life now and the things I talk about over on my social media!
Life is hard with CF but I am determined to not let it take over!

If you want to learn a bit more about Cystic Fibrosis click HERE 

 

 

Livvy xx

 

 

cystic fibrosis

%d bloggers like this: