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Posted in Health and Wellbeing, The Whole Guide, Thoughts

January Motivations

Been a while!

So summary from my last month or so, didn’t finish NaNoWriMo (hit 11,000 words and then university work kind of took over and I had deadlines on top of deadlines) and had an amazing holiday with my family. Hope yours was amazing as well and if not, it’s 2020 now! When else is better for a fresh start than a new year and a new decade.

2020 has the potential to be an amazing decade for me, but that does come with a lot of pressures. I want to get my degree, maybe a post-graduate Doctorate, start my professional career (whatever that is) and start a family of my own. Notice my health is not mentioned in there at all. That’s because I don’t know what the plan is.

Since I was a child, I had the mentality in my head that I would get to 40 years of age. That ripe old age where you’re just settling in to your mundane life (if you’re a normal person that is) and that’s where I thought I would get. That’s all over the place now. My doctors tell me that with the creation of CFTR modulators like Orkambi and Trikafta, no one has any idea what life expectancy for CF is these days. So that’s a positive. But also, my health is declining slowly and two years ago I was tested for suitability for a lung transplant with the potential for needing one last year. I was rejected but fortunately, Orkambi saved my lungs, stabilised me and helped me live to see the decade in. But all of this has had a weird effect on that mentality of mine. I always wanted to be a DR, not a medical doctor but a PhD doctor. That was a big goal of mine and something that I still want to do. Same with establishing a career for myself and having a family. Although lately, that’s all shifted. Don’t get me wrong, I still have big career ambitions, but they’re not the most important thing for me anymore. My goal is to have a family. As cheesy and corny and old-fashioned as that sounds, I want a white walled cottage in the countryside with a white picket fence and that’s what I want for my life. If I have to give up everything else to get that, I will.

Family has always been important to me, especially with my CF and it continues to be, now more than ever. I realised a couple months ago that the way that I am living my life isn’t sustainable. Sure I’m alive and surviving and doing my treatments but the way I’m living isn’t improving, it’s just stable. While that’s incredible and I’m very fortunate to not be quickly declining, I want to improve. As anyone who starts New Years Resolutions will know, you can’t just change yourself. I am someone who has done physiotherapy maybe once a month if they remember and exercise is walking to the shops and back (5 minutes on the flat). That has to change if I want to improve. I’ve bought an exercise bike and – with the help of my amazing boyfriend – plan to cycle for 15 minutes every evening building up my stamina and lung capacity. On top of this, do physio as much as possible (current aim is once a day).

So that’s where I’m at. My new exercise plan and my new-found desire to increase my life for longer than what it’s got left at the minute because that’s not enough. The saddest thing about CF and my goals with the disease is that I can’t just do them. It’s not like I can book a holiday and go away for a week to all the places I want to see in the world and then be happy. I want a family and if I get told tomorrow that I have a year left, I can’t get married or have a child because what happens to the other people involved when I die? It’s just as big of a commitment for them and it’s not fair to do that to someone, especially someone I love. So what can I do? I can live longer – and that’s my motivation to try. It’s no longer about myself and just wanting to achieve things for myself, it’s about wanting to experience the world and everything in it. It’s about wanting to one day look my child in the eye and know I wasn’t leaving any time soon. It’s about family, trust and love.

~S

Posted in Updates

NaNoWriMo & The Future of CFer’s Guide

Hello, hello,

It’s been a while! Hope you are all doing okay and feeling festive as we approach the end of 2019. Couple of things I wanted to announce.

First of all, as you may know, I am an avid writer and I love books. Always have and always will. I have decided this year to take part in NaNoWriMo (National Novel Writing Month) where you need to write a 50k word novel in a month. Hard but should be good and finally gives me some motivation to write the story I’ve had in my head for years. This is a different one to Designed to Exist that I started writing on my Wattpad. This one is a lot closer to me and therefore I will be keeping it to myself while I work on it. I am, however on 8.7k words already so I’m feeling good! Not quite where I need to be to win the challenge, however I’m getting in to the swing of things and looking forward to writing more and more.

The next thing I wanted to say is in regards to this blog. Honestly, I’ve kind of run out of ideas. I don’t really know what else you would need a guide on and I’ve had a lot going on with work these last few weeks so I think I’m going to be putting this on hold for a while. I might post every now and then and I’ll probably keep you updated with how I do in NaNoWriMo but I won’t be regular posting. What I’m hoping for is that when things settle down a bit, I can return to my plan with Koala Books and do some health updates every now and then for those who are interested in what life is like with CF.

Hope that was a little update for y’all and let’s you know a little bit more about what’s been going on in my life. Hope all of you are doing good and have a great end of the year!

~S

Posted in Day-to-Day, The Whole Guide

A CFer’s Guide to… Moving House

Hi Everyone,

Been a long time since I’ve posted and I just wanted to let everyone know that I’m all okay. Nothing major has happened except… I MOVED OUT!
This time, I moved in with my boyfriend rather than just to university. Let me tell you, it’s a whole other ball park. The number of things you have to think about is ridiculous! So, I thought I’d write a nice little check list of everything you need to do when you move house (or at least everything I did).

  1. Know what you want
    This one might sound kind of obvious but, when house hunting, it’s very easy to get drawn in to the allure of an extra bedroom or a large kitchen or even letting the estate agents talk you into looking at a property that’s miles away from where you want to be. The best thing to do is to write a list of what you need to have and what you’re willing to compromise on and stick to that list. For example, I did not look at any home that did not have a washing machine in it as this was a non-negotiable feature in my opinion. It really cuts down on the time spent searching.
  2. Allow some wiggle room
    Budgeting is hard and sticking to it can be harder. The best thing to do is to leave some wiggle room. Many landlords or sellers (I’m renting so I don’t know much about buying) are willing to negotiate price a little and therefore, going slightly above your budget isn’t always a bad thing. Just don’t get too attached before you know if they’re willing to budge on price.
  3. Pack a few days in advance
    I know with my move, I packed a couple days in advance the things I could live without, for example my massive clothing collection. This meant that when it came to actually moving, I just had to worry about things I used daily. This did include medication and that’s where the next step comes in.
  4. If you’re a CFer, make sure you have enough medication
    For me, moving meant switching doctors and that meant going a few weeks without being able to get a new prescription. As well as this, you also need to make sure you remember everything. Not just the medication, but the equipment as well. I forgot my feed charger and, well, let’s just say a new one arrived this morning haha. Lists, lists and more lists are my main advice there.
  5. Take your time
    Finally, moving is hard. Not only do you actually have to move all your belongings, but bills are a thing too and they can be confusing. Don’t worry if the furniture isn’t exactly where you want it first try. It’s your house, there’s no reason why you can’t move it around if you want.
    Bills are confusing and the best thing to do is not to rush into a contract. It took me a week and a half before I found a deal that was best for me. So don’t stress, worrying only makes problems worse.

So, if the main point wasn’t obvious in those tips, lists are key. List who you need to contact to change your addresses. List what bills you need to sign up for. List what furniture, if your house is unfurnished. LISTS! I practically filled a notebook!

Hope this helps anyone moving home and I have a big doctors appointment next week so will put up a health update after that. Have a great week everyone!

~S

Designed to Exist Chapter Two

Hi Guys,

For anyone who’s following my writing, the next chapter of Designed to Exist is up on Wattpad! It’s a little bit shorter than the first chapter but I hope it carries the same emotion and connection to the story. Let me know what you guys think!

~S

Posted in Koala Books

The Beginning of Koala Books

As some of you may know, I used to have a different blog focused on book reviews and other things which caught my interest. Through a long series of life events, I ended up leaving the blog and it eventually just kind of died. I believe it is still live, however I don’t post on it.

In recent times, I’ve decided that I should rekindle my love for books and my obsession with reading. The issue that I have (and really I think a lot of people go through this) is that I used to be madly in love with YA fiction. Things like the Divergent series or The Mortal Instruments. Around some time when I was about 16/17, I realised that all the tropes are the same and while I loved them at the time, I knew how it was going to end before I started reading them. It was then that I made the transition into more adult fiction. This transition was actually harder than I anticipated. I realised a lot of contemporary/romance novels that I enjoyed became too predictable. I ended up reading a lot of non-fiction books for a while which really helped in terms of academia (and increased my interest into a lot of areas of science) however didn’t really inspire my interest in fiction.

Through looking at what kinda of story line I enjoy and talking with some friends, I’ve finally found a book that’s sparked my interest!!! And so, without further ado, I present Koala Books – a new segment on the blog for book reviews, writing updates and possibly some tips and tricks. Should be up and running once I’ve finished this book. The first book to be reviewed is The Passage by Justin Cronin. I’ve got a hospital admission in the next few weeks so the 960 off pages should help pass the time. Don’t worry, I will still post CF things, just want to keep the blog active while I don’t have any CF specific content – plus I love doing this kind of thing!

See y’all soon and hope everyone’s doing well!

~S

Posted in Thoughts

Becoming an adult

Welcome one and all to yet another post not about CF. I feel like I should just rename the blog and everything. Anywho, getting on with the post, how many people reading this reached the age of 18 and suddenly became an adult.

Legally, the answer is everyone 18+ but that’s not entirely what I mean. I’ve gone down the path of most people these days which is once I left high school, I went to university. At uni, you start living on your own. This involves cooking, cleaning and generally looking after yourself. This I found okay. Whether it’s because I’ve been looking after myself in terms of medication for a while or I’m just an independent person naturally idk. What I do know is coming home this holiday had the weirdest series of events yet.

I haven’t passed my driving test yet (it’s on Wednesday so wish me luck) so I’ve been driving around with my parents to get some practise. I also cooked dinner yesterday and stayed at the house with my younger brother on my own. It sounds kind of silly but there was this thought process that went through my head where this is actually okay. This is how life will be and it’ll be me forging my own way in life rather than doing everything with my parents and it just felt weird.

Basically, what I’m trying to say is that when become an adult, it’s more of a mental thing than the legal thing. Sure, you might be 18 but in my opinion, it’s when you start spending holidays at your own home or making plans without asking your parents and it being okay is when the mentality really kicks in and that’s something that no one really tells you. I would be lying if I said I wasn’t excited for the rest of this year. I move in with my boyfriend, I (hopefully) pass my driving test and get a job. All big milestones and I can’t wait.

This post goes to show how many important miles can happen regardless of your health. If anyone else has an opinion on becoming an adult or other milestones you accomplished, let me know and other than that, hope all is well with you!

~S

Posted in Media/Entertainment

Five Feet Apart Movie Review

Movie Poster

Hi Everyone,

So last weekend I watched Five Feet Apart for the first time with my boyfriend and let me tell you, it was emotional. So, as promised, here is my review of it! (There will be a tl/dr at the end and there will not be spoilers throughout).

The Story
Where do I even begin with this story! First of all, it is being compared to TFIOS (The Fault In Our Stars). If you ask me, it’s a million times better than TFIOS because it’s real. Without putting in any spoilers to those who haven’t read it, the ending was amazing. I felt that it was so rare to have an ending that wasn’t obvious but also was powerful, moving and, ultimately, real.
I can’t relate to the very fancy hospitals (I mean they had a POOL) or the fact that there’s the six feet rule (where I’m from, you’re not allowed to see each other at all) but those were small things that you can look past.
I found that, in terms of the emotion of it, you can get through the first half pretty well. It’s the second half where you already have the attachment to some of the characters, that you start to feel emotional and, honestly, I cried. I cried a s**t ton. My boyfriend did too, so overall, the film gets a pass on the story.

The Characters
The film has three main characters with CF and highlights the different relationships that you have with people when you have CF. First off, you have Stella. Stella is a 17 year old girl who is on the waiting list for a lung transplant and in hospital to keep her health up. Next, you have Will. Will is also a 17 year old CFer, however he has B. Cepacia and is on a drug trial to resolve it. Finally, you have Poe, Stella’s best friend.
I felt that these characters were so realistic. You had Stella, a girl who “lives for her treatments [rather than] doing her treatments to live” and Will – who doesn’t see the point in doing treatment if he’s going to die anyway. I think, personally, that everyone with CF can relate to both of these characters in one way or another. First off, for me, I find that on some days I’m Stella and on other days I’m Will but mostly I’m some weird kinda mix between the two.
I thought that adding in a third character with CF helped expand the plot. With Poe, we got to hear about relationships with someone without CF and the conscious knowledge that you’re putting your health onto someone else and that you know that one day, you’re going to leave them alone. (Just a PSA here, if anyone reading this has this thought in their head regarding their relationship, I will tell you one thing that my therapist told me: It’s not your decision. It’s up to them what they bring into their life and if they’re okay with it then you should be too). He also highlighted the challenges facing CF friendship – one key part being not being able to hug each other.

Overall
Overall, this film was great. I would maybe give it an 8/10 just because there’s only so much uniqueness another teen romance involving terminal illness can get. If you have CF, take a look at some reviews and maybe even read some ones with spoilers so you know what you’re getting yourself into. For a couple of days after watching it, it made me feel a weird kinda way about life and my health and everything so it can be very confrontational. If you don’t have CF, I think it’s out of cinemas now but if you can watch it online or on DVD when it comes out, you’ll love it. The representation and the realism is so important to us with CF that we want as many people to experience it as possible.

TL/DR
Characters – amazing, very realistic, depth to them and moderate character development throughout, showed pretty much all possible relationships you can have with someone with CF (ignoring familial)
Story – unique, real and the ending had so much emotion and good intent (if not very practical in how it was done) that it really was the perfect way to end the movie – in my opinion
Overall – 8/10, if you have CF, think before you watch otherwise GO WATCH IT!

So yeah, that’s my review. I did really enjoy the movie and sometimes it’s cathartic to watch a sad movie. I hope if you’ve seen it that you also enjoyed it and if you haven’t maybe go check it out!

See ya later!

~S