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!
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!
So, on this lovely Tuesday evening of ours, I thought I would just write a post that wasn’t CF related. I decided it would be best to focus on things that help distract us from the negatives in our lives, whatever that may be for you.
For me, it consists of writing, Netflix (cliche I know) and certain forms of art. If you’ve been reading my posts for a while, you’ll know that I love writing. Fiction writing specifically. When I was younger, you could never separate me from a book. I would always bring a book with me – even when I knew there wasn’t going to be time for me to read – just in case we had time to spare. Sometimes I would bring two if I was towards the end of one so I could read something else if I finished the first one. Reading transformed into writing and I wrote so many things. Stories varying from fairy-tales when I was about eight to more sophisticated stories like short horror stories or contemporary fiction.
I find that writing helps to calm my mind. It takes my brain away from my world and transports me into a world entirely of my creation. Sometimes, it feels like I’m watching the story in my head and trying to communicate that through the screen. Every good piece of writing I have done has started from one image in my head or an idea that turned into a concept that turned into a series of images. Finding new ways to articulate that is a feeling that I love and I always turn to that if I need an outlet.
Netflix – I think that one is self-explanatory. Good luck finding someone who doesn’t binge on Netflix.
I would in no way call myself an artist. I have some friends who are artists and they create beautiful pictures and paintings and landscapes in all different media. However, I find water colours relaxing to look at and to watch other people paint. My goal for this year is to learn how to water colour and I think I’m getting there. Before you ask, probably won’t be putting any up on here for a while but I love creating smooth gradients and hope one day to have enough skills to put the images in my head onto paper. That form of art is a bit more intense as it requires more concentration so I only do it when I feel like pouring my focus into something.
Another form of art I enjoy is cross-stitching. Yes that makes me sound like a grandmother but I find it relaxing. I’m just following a template at the minute of one I found online. It’s a pretty large piece of material so it will take me years but let me tell you, good music or Netflix and stitching when I don’t have to think is a wonderful thing.
So that’s what I do to take my mind off things. I want to say to everyone that it’s never too late to start something new. I know all the famous dancers, singers, artists, musicians or really anyone with a good skill says that they’ve been doing it since they were young but you don’t have to be the best at something to enjoy doing it. Life is short and enjoyment is all we get out of it so if you want to paint, then you paint! If you want to sing, sing till your voice is gone. You’re only as good as you want to be.
That’s all from me, also wanted to put a little note out that the prologue and first chapter of a book I’m working on is up on Wattpad. It’s called Designed to Exist. If you read it, make sure to let me know what you think. Trying out this genre for the first time but feeling really passionate about it. Much love to everyone and hope the rest of your week is as great as can be.
First off, I would like to apologise for the lack of posting, honestly just had a lot on and lacking inspiration at times but here we are and here’s another guide post. I was trying to figure out what I could do a guide on that I hadn’t yet and what issues I feel that most people might want to know about ahead of time. And that is where this topic came about so sit back, relax and enjoy the advice (also when anyone else hears “sit back, relax” they close their eyes as well? Might not be so helpful here).
When I started university, I realised that something was going to change. I was going to have to tell people that I had CF, be it because I would miss lectures or because they asked me about my medication. It’s not like I hadn’t told people before, however when you’re young, people don’t tend to process things in the same way as when you’re an adult. Honestly, they’re more interested and it didn’t feel like something that would define me. It’s at this moment that you realise children are where we should have stopped in terms of dealing with things but that is a post for another time.
As my doctors said to me and as I will say to you, you absolutely 100% do not have to tell ANYONE about your CF that you don’t want to. You owe no one any obligation to tell them your health problems because *gasp* it’s YOUR personal business. So that’s point number one. Point number two is you need to pick you moment. For me, I didn’t want to go “Hi, I’m Sophie and I have a terminal genetic condition” the first time I met someone. Only a few people here actually know and that is my friends and flatmates. If you want to lead the way with it then that’s fine and your personal choice but I found picking the moment to be the best option.
After a lot of negative experience with people backing out of my life when health got too complicated, I knew that it was going to be a possibility (even more so) as an adult when people haven’t known you for years and have no emotional connection to you already. In case you’re wondering, I told my flatmates when I started coughing a lot (as they were concerned about my health) and I told my friends when we were close enough to hang out together yet not too close that they wouldn’t feel I was keeping it a secret or that I had lied to them.
That’s another thing. For me, CF isn’t a secret. It’s a part of me and while people say that it doesn’t define you, I think it would be naive to suggest that it doesn’t help create you. I, for one, wouldn’t be the person I am today without it. If someone asks me, I will tell them and otherwise, I will keep it to myself. This is a lesson that kind of comes in here so I will say it (and trust me, this one can be hard to hear): no one is obliged to deal with your health with you. There are some amazing people in this world who will stick with you through thick and thin but, at the end of the day, in the culture we live in, people are selfish and having a friend with lifelong health issues might not be what everyone has in mind. When telling new people about CF, you need to tell yourself that it’s okay if they back off and it’s okay if they don’t want to talk to you about it. Some people will want to be your friend but not want to deal with the health and you know what, that’s fine too. All that you need is one or two people who will stick by you through anything and you’ll be fine.
I’d like to finish this post off by quoting a post I saw on some social media site. Imagine you are a book. In your life, you will meet three kinds of people. The first is someone who skims the book and puts it back on the shelf. The second is someone who reads the book once and returns it and the last is someone who not only reads the book but keeps it and rereads it. I hope you all find that third person and see y’all in another post!
PS I’m in the process of writing a chapter for a new novel over on my Wattpad page so keep an eye on that 🙂
Been a hot minute since I’ve posted and I just want to take a moment to talk about where my life has been over the last year (PSA: This will be a long post). I know this is usually something that people do at the start of the new year but for me, my years really seem to take shape in February.
For starters, 2 years ago I got my G-tube placed. I’ll save you the gory photos of the healing process but you know what, best decision I’ve ever made. It’s taken a lot of stress out of eating for me and if I know I won’t have time to eat lunch, I can push some calorie drink through it and be good to go without worrying that I’ll lose weight. Last year, after one and a half years of feed, I hit 49kg. I don’t remember quite making 50 but if I did, it was short-lived. Currently I’m sat at around 45kg and that is down to some practicalities and something that I am trying to sort out currently. Let it never be said that a CFer doesn’t try to survive. Feed and the routine was a difficult thing for me to get into and it didn’t come easy, but now I know what’s possible, I’m determined to get back up there.
Where to start with 2018. My health started to take a turn in December 2017 after a culture came back with the first signs of Non-Tuberculosis Mycobacterium. If I knew where it would take me, my days I don’t know if I would’ve done it. December went by with me on steroid treatment over Christmas (I was actually dead on those, not the best and in my opinion, did nothing for my health) and then a routine appointment to get my button replaced in early January. At which point my doctor came in unexpectedly. Now I don’t know what infection care is like in other hospitals but in mine, they wear different types of aprons when treating you. As soon as he walked in and put on the contagious apron, I knew what the result was. Proudest moment was that I didn’t start crying then and there.
What followed was a lot of thought and deliberation about a course of IVs that I would have to do if I wanted any chance of killing it. Even then, it was only a 50% chance. On the 15th February 2018, I was admitted into hospital for 6 weeks and what happened there can be reserved for another post. Let’s just say that I had to fight my way out before Easter.
Then I had major exams which would decide university placements. Fortunately for me, I had done well enough to have my place guaranteed regardless of grades so it took some of the pressure off and then in October, it was off to university for me. If you read my posts at the time, you would know how settling in was and honestly, I’m not even there yet. I am yet to find people who understand me and who don’t want to go out binge drinking every weekend or who don’t shy away from deep conversation (I’m not big on small talk).
And now we’re here.
All of this really focused on the negatives and while 2018 was a year I will never forget for many reasons (I also failed my driving test), there were a few positives. My boyfriend and I celebrated one year together and went on a holiday to the Bahamas for 3 weeks. That was amazing and created memories that I will cherish forever. I also went on a trip to Croatia with some friends and had so much fun on that coach trip it’s unbelievable. My birthday party that year was incredible, friends from other countries came over to celebrate with me and I just want to take this time now to say that I don’t know what I would do without them. My amazing, wonderful, supportive boyfriend stuck with me through all my health trials, the realisation that we would be at different universities, our anxieties about the next stages in our lives and honestly realising that no adult knows what the F they are doing.
One thing that’s really hard to do but one that I’m going to keep doing for as long as humanly possible is being true to yourself. I think I can speak for most CFers when I say that we had to grow up quickly. At 13, I was told I wouldn’t make 25 unless I got my weight up. That was a shock to the system. And in all this dealing with life, it can be easy to find the wrong friends. While Cystic Fibrosis is a curse in so many ways, it’s a good way to test which friendships will last and which you have to kick to the curb because you’re better than that. It may take you longer to find friends than most people but when you find them, they will be the best friends in the world who you know would be with you in a split-second if you needed them to be. They would sit with you through your worst, one of my friends sat with me while I was having IV treatments and the line broke so my hand swelled up, that was fun. They will be the biggest pain in your butt but it’s all because they want to help you grow. So love those friends with all your heart because they love you for you and if you ever for a second think that you’re not worth their love, think to yourself if that’s really up to you to decide.
Much love anyone who’s gotten this far down the post and I hope your year has been slightly less dramatic than mine ❤
Yes. That is an ominous title. I just wanted to air a thought here that I find I do sometimes with CF. This post might have a negative effect on your view of your CF so at the bottom I’ve attempted to make a collection of kitten photos for you to enjoy and hopefully take your mind off of anything from this article – or you can skip to the kitten photos now 🙂
I really can’t say that I know of other CFer’s who do this and if you do it too, please let me know but every now and then (and these days it’s rare), I’ll look at my tablets but like… really look at them. Not just take them like a robot programmed to refresh itself twice a day or like a normal part of my life, but something that makes me different.
Before I start to sound crazy, I am aware that people without CF don’t take the same pills and people ask me about it all the time so maybe it’s an anxiety thing as it only happens every now and then but I look at a pot of Creon or an antibiotic and think “I have to take this to live”, “this isn’t a short term thing”. “If I stop taking these drugs, I will die”. And it’s a very weird thought process to have.
It’s not all like that and don’t all get that deep but every now and then they do and it’s weird. It’s like watching Children in Need or Comic Relief or another charity show where they show people in poor situations who are recovering from bereavement or cancer or are in severe poverty and you think “wow that’s awful, I can’t imagine life like that”. It’s this awareness that other people will look at my life, everything I go through on top of normal things like exams or work or budgeting and normal stresses and go “wow that sounds tough”.
Sometimes, it is bloody awful. When you’re 11 days into a 6 week course of treatment that makes you feel sick and you haven’t left the same four walls or the walls of the hospital for almost that long, yeah okay. Then I can see how someone would say it sounds tough. But during the day to day life of CF, it just becomes routine. I almost don’t feel qualified to be able to say that it’s tough because, when I’m healthy, it’s not really too different from remembering to feed yourself or a pet.
I guess you could say it’s kind of like an out-of-body experience. Like you’re seeing everything you do from someone else’s perspective and you realise that you deserve every little breath you get back from these hours and hours of treatment because you know what, life is tough and the fact that we have to fight to even breathe, even get to live long enough to see a sunset on a romantic getaway or the sights of the world makes all the little joys feel like the top of the world and when you get to the top of the world, whatever that is for you, be it having a family or actually climbing a mountain, you realise that in that moment, you deserve to be there because no one other than yourself knows what it took for you to get there and no one can understand how much those five minutes realising how amazing life can be cost years and years of work.
And oddly enough, I guess that’s something I’m proud of. Every little thing in life I appreciate more. The time with friends, the time with family, the holidays, the joys and everything that makes life worth living. I’ve earned it and I’ve earned the ability to say that I work every day to have these moments so I am going to spend every second I can living in them.
That turned out to be oddly more positive than I was expecting but I promised kittens so here are kittens (all rights to the photographers).
So as you are probably aware, I am currently living at university in student accommodation. Unless you are aware of college living, the rooms are… small to say the least. They do have some built in storage (mine has 4 shelves, a wardrobe, a very small chest of drawers and a pull out drawer underneath the bed). Now, I don’t know if you know this about CF, but we take a LOT of medication. Like a s*** ton! And trying to fit all of this into a tiny room while still having space to move around is HARD! So let me tell you how I did it. (Unfortunately, my phone camera is broken thanks to some sunscreen spilled on it last summer (LONG story) so I can’t post pictures but I will put in links to everything I bought for you).
Buy stackable drawers. Click here for the one that I bought.
In these drawers, I store pretty much all of my medication. It doesn’t take up that much floor space (it’s just tall) and sits pretty nicely against my wall. It does have rollers but I haven’t attached them as I don’t really plan on moving it until I move out and then wheels probably won’t help take it down the stairs. I use the first drawer for my nebuliser solution. It holds the needles, saline and vials of the actual drug (I have the syringes sitting on top). The second drawer is where I’ve put all of my tablets. I get monthly prescriptions so there isn’t too much to have to store and it means that I can keep track of what I have. It all fits pretty nicely and means at one glance and, more importantly, after only opening one drawer, I can see all of my tablets. The third drawer is Orkambi. I get that in 3 months supply and any that don’t fit in the drawer, I store at the bottom of my wardrobe. The fourth is for feed extension sets. My feed is a whole other story, I’ll get to that in a moment and the fifth is one that is just kind of miscellaneous at the minute. I will eventually use it for feed supplies but at the minute it’s working as is.
Take advantage of extra ‘useless’ space
I doubt very much that you will use the 2ft by 5ft rectangle of space between the desk and before you hit the door stop for anything actually useful so store medication there. I currently have my drawers there and a tower (literally) of feed and some boxes of extensions that I need to put into the drawers. Another area of dead space is under the bed or at the bottom of the wardrobe. Underneath my bed currently is a drawer full of high calorie shakes and boxes of more shakes and extension sets (my feed company send me wayy too much and the postal service at the uni means I can’t reject it so guess who has LITERALLY SO MUCH FEED! I’m in the process of sorting it out now 🙂 ). The wardrobe I don’t use as much because everything else fits nicely in other places but that is a good option for those of you who have more medication than me or maybe less floor space (you can buy smaller drawer sets for the bottom of the wardrobe, just make sure they aren’t too heavy).
Put all your medication in one area where possible
I know that for me, having medication in one area means that when I’m working at my desk or lying in bed, I know exactly where I can look to forget that I have a mountain of medication. My mini-fridge (for refrigerated medication: a similar one to mine is here and most universities will allow you one on medical grounds but check first) is next to my drawers which is next to my pile of feed (no the door does not open fully but it’s okay). The only medication elsewhere in the room is my feed machine by my bed (which I can’t see) the oxygen machine and the oxygen tank and that is because those need to be placed elsewhere for safety reasons. Another area is one of the shelves and that doesn’t really have medication, just supplies but it is reasonably high so I don’t really notice it.
Finally, be organised
This is a hard one for most people, including myself. I have been here for around 4 months and still haven’t really figured out what I’m doing. The habit I’m trying to get myself into is as soon as I get medication delivered, put it away. Otherwise, you end up with piles and piles and you’re digging through bags trying to find what you need, causing additional stress and you can’t see what you need to order until you’re out of something only to find some in a random bag that you completely forgot about. Routine is important but it doesn’t happen overnight and if you forget to put something away or let things pile up, wait until you’re in the right mindset (or need a procrastination activity), put on some music and just get it all done there and then. That’s what I did today and now that I’m sat, writing and looking at a pretty organised room (not 100% but hey, who’s perfect), I feel pretty damn good and relaxed.
I hope you can take some of these notes and tips. I’m aware everyone has different medication and there are some things that I have that other people don’t and vice versa, these are just how I get by and I hope that it could be of some use to you. Much love everyone!!