Posted in Thoughts

That Moment When You Realise

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).

~S

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Posted in The Whole Guide, Day-to-Day

A CFer’s Guide to… Organizing Medications

Hiya!

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!!

~S

Posted in Day-to-Day, The Whole Guide

A Day in the Life of a CFer @ Uni

Hey Everyone,

I kinda felt like writing something, I’ve been surprisingly active recently but for some reason I’ve just hit a little bit of a streak with enjoying posting! Let’s hope it lasts *fingers crossed*! Anyway, thought for a little bit of a different style of post, I would take you through my daily life as a university student with CF.

DISCLAIMER: I am a normal person so my schedule varies from day to day along with my uni timetable but I’ll hope to provide you with an average look at how I structure my day. This is also personal to me, other CFer’s will do things differently as will other Uni students. Here we go!

08:30-10:00 – Wake up
Now this is a pretty large time frame and there is a reason for this. I sleep quite late and unless I have a 9:00 lecture, when I wake up at 8:30, I will most likely get up at about 10:00.

10:00 – Wash medication
Now I know this is bad (before anyone else tells me that it is) but I will quite often not wash my nebulisers until the morning because when I’m doing them at 12:30, a girl kinda wants to go to bed. If I have a 9:00 lecture, this would happen at 8:30 once I’ve woken up and I will do them when I get back from my lecture.

11:00 – Do nebulisers
Regardless of what time I have lectures (at least this semester) I will do my medication at 11:00

11:30 – Get ready (if I wasn’t already from an early lecture)

12:30 – Lunch + Orkambi
For those who haven’t read my Orkambi post or who don’t know about the drug, it is a drug that needs to be taken with around 10g-12g of fat. I find this easier to do with lunch.

13:00 – Pack for lectures
Most of my lectures this semester were at around 13:00-14:00 and so this is what I would normally do at this time.

14:00-16:00 – WORK

16:30 – More Medication!

16:45-18:30 – Chill Time!
At uni, at least on my course, you don’t get homework really. I’ll get pieces of coursework which I will have a few weeks to complete but it does allow for a lot of time to do things I enjoy.

18:30 – Dinner!
Quite often this includes chatting with flatmates and friends, my most social time of the day apart from during lectures.

20:00 – Work on coursework

20:30 ish – More tablets (which can’t be taken with food)

Depending on how I feel, I’ll then either work for another hour or call my boyfriend or just hang out and do some writing/blogging/anything else

23:00 – Nebulisers (again)

00:30 – Orkambi and last of the tablets (Yes!)

01:00 – Set up overnight medication (and take subsequent creon)

01:30 – attempt to go to sleep (which usually results in watching netflix for about half an hour)

02:00 – ACTUALLY go to sleep

So that’s a typical day for me. Some days I have to go do laundry and others I have to order food because adulting. Some days I go out with friends and others and don’t work at all. It really depends, but that’s what my schedule looked like for the last few months.
Hope you enjoyed that little look into my life and shockingly, how much time medication takes rather than work (and that doesn’t include boiling and sterilizing once a week)! Chat to ya soon!

~S

P.S. Hope you like the new theme!

Posted in Thoughts

The Opinions Of Other People

So in this modern world that we live in, almost all of our self worth comes from other people. Likes on social media, fitting in with the best crowd, being told you’re doing well at life. If you’re one of the lucky ones who can feel comfortable in yourself then I salute you. I am not one of these people.

When I was 12, as I believe I previously mentioned, I wrote a book with a friend. When I read back over it, it wasn’t very good and the cover art we did was on MS Paint and it was awful but we self-published it. From that, my Dad helped us set up a radio interview for it (which was a lot of fun) and that’s kind of where it ended.

I have always loved writing, used to run a blog based books and reviews and I loved it. I was quite self conscious about it though. No one at school other than my friends knew about it and then one day, I walk into the classroom and on the projector was my blog that a friend of mine put up there. Coincidentally, we aren’t friends anymore but that’s besides the point. Initially, I felt so embarrassed but then I kind of accepted it. It was who I was and what I enjoyed doing and I didn’t see anything wrong with that.

All it took was a few sarcastic people commenting about it and years down the line when people still say to me “Hey do you remember that time you wrote a book!” and laughing, is it a wonder I stopped writing? I hardly read anymore either. I still write a little but I never show anyone. There are millions of story drafts saved onto my laptop that have just been left unfinished because I lose interest. I’m not good enough and people would laugh at me.

It wasn’t until recently that I started writing again. I mentioned to a few people that I like writing and no one laughed at me. It wasn’t greeted with sarcasm. If I mention that I self-published a book, there’s a look of “oh that’s cool!” rather than “why?” as there had been before. Someone asked to read some of my writing and actually enjoyed it and finally, I began to realise that maybe I’m not as bad as people made me out to be.

This is a very long and sappy post but I hope the message gets across here. I lost enjoyment in one of the few things I absolutely adored because people took the piss. I lost years of doing what I wanted to because of other people and years trying to sculpt myself into who I thought everyone else wanted me to be. It – unsurprisingly – never worked. The friend who I wrote the book with tried the same. She is now on a very different path but I hope she’s happy in where she ended up. I certainly am.

Sometime in the last few years, between my hospital appointments and many, MANY exams, I realised I didn’t give a shit what people think of me. If you like me, great let’s be friends. If you don’t like me, okay but I don’t want to be around you. Life is too short for negativity, especially with an anxious brain making the world negative for you, you don’t need others. It’s not really a New Year’s Resolution as it’s already half way through January (2019 is going fast!) but I think I’m going to start writing more and on a bit more of a public platform. In November, there’s an event called NaNoWriMo which is basically try and write a novel in a month. I think, depending how things work out, I’ll give that a try again but for now, I’ve made a Wattpad account.

For those of you that don’t know, Wattpad is basically a collection of books written by the public that you can upload yourself chapter by chapter. I figure it’s a good way for me to get back into writing and share what I’ve written rather than it sitting on my laptop. Even if only one person enjoys it, it’s worth it.

If you want to see what I write, my username is SophieCFWrites so go have a look at that and otherwise, I hope what you’ve taken away from this is that listening to other people sucks. Be who you are and do what you enjoy doing. Don’t let anyone dull that spark of excitement in anything you do. After all, life’s boring unless you’re obsessed with something. Bring some emotion back to doing things you enjoy if you’re like me and if you’re not like me, keep enjoying every little thing that you write, draw, paint, create, sing, whatever it is!

~S

Posted in The Whole Guide, Health and Wellbeing, Update

Find Joy in the Little Things

Hi Everyone,

So if you keep up to date with my blog, you would know that I just had some amazing doctors results. I gained 8% lung function over a year and my overnight oxygen saturation is high enough that I can come off of my oxygen! The thing is, these results took hard work and one of the things that sucks with CF is that you’re never better. You just slow down the progression – and therefore the inevitable.

Those of you with CF (or are easily triggered) can skip this paragraph but for the rest of you reading this, here are the facts.

  1. CF will eventually kill me
  2. Improvements are a short term thing
  3. Each small improvement required years containing days filled with hours of doing various forms of medication

So rather than focusing on those more negative outlooks, here are the positives.

  1. My NTM treatment has extended my life
  2. Orkambi is working exactly how it should be
  3. I can now keep up when I walk with friends over short distances
  4. I can focus more on university work than my health

While these things might seem rather silly, they are little positives that help me keep going. Sure my weight is still really low and I still have to fight through each coughing fit and hospital admission, but for now, it’s less and I plan on enjoying that time doing things with my friends, boyfriend, family and focusing on the long term goals that every normal college student has (like my second attempt at my driving test).

I guess the lesson here is that little things, no matter how small, can make you feel so much better and give you such a confidence boost. I can’t quite describe the feeling that I felt when my doctor looked honestly surprised with my improvements. Doctors don’t know everything and it’s funny when you surprise them.

Don’t worry about where you are, if you keep putting in effort, it will get better. Even if now it feels like it never will, the little things like hot bubble baths and beautiful sunsets will always make the night a little bit brighter.

~S

Posted in Thoughts, Update

“New Year, New Me”

Hey everyone,

So hope everyone had a great holiday and is getting back into the swing of things for 2019. I have already handed in two coursework pieces for my degree so feeling a little productive, even if this post is just procrastination from revision for next week’s exams (don’t judge me!).

Everyone makes New Year’s Resolutions and when I was younger, I really liked doing them. There was this notion that as soon as the clock struck 12:00am on New Year’s Eve that you could start over and do things differently. I would always want to be more organised or look after myself better or make my bed every day or do homework as soon as it was given to me. This year, however, I was confused when 12:00 came and went and I hadn’t given a second thought to what I would change this year. I think it’s because I’m getting older.

Currently, in my life, I’m adjusting to university, doing all of my health treatments on my own and just generally moving forwards with my life. I’m learning to manage my anxiety, my workload, making new friends (harder than you may think!) and just generally becoming more responsible. I don’t know at what point it hit me, whether it was last year or the year before but I realised that there’s no specific day when one can suddenly go from an unorganised mess to perfect in every way. That’s some Mary Poppins type magic that unfortunately, those of us mere mortals do not possess. I know this revelation might seem obvious to some readers but alas it was not to me. I realised that New Years Resolutions were just designed to fail and that you need to try and grow slowly. For example, I haven’t set any formal goals but I have some rough guidelines for this year. I would like to slowly start increasing my weight again and to do well in my degree. These are things that cannot be done instantly and often require some level of failing before you get there. Your weight won’t go up without occasionally coming back down – trust me there – and you will always get a bad test result.

I guess what I really have to say here is that the goal, at least for me, with New Years Resolutions isn’t so much in fixing yourself but learning to forgive yourself for falling back into old habits, not revising when you should or maybe missing a meal every now and then. It’s learning that practically, you can’t be perfect and that failing is okay. It’s the drive to get back up and keep going that makes you strong and just think, if you’re reading this now, you have survived every bad thing that has happened to you so far.

2018 was a major year for me. I got diagnosed with NTM, officially diagnosed with diabetes, filed for a place on the transplant watchlist (didn’t qualify), went through 6 weeks of hell on IVs and then another 6 to recover, did my A-Levels, failed my driving test, went on holiday with my boyfriend and started uni. Plus my lung function is now the highest it has been in about 4 years and I’ve started on Orkambi. It was a major year with a lot of milestones and certainly will not be forgotten anytime soon but for now, it is 2019 and it’s time to make some new memories. Whatever happened in the past, good or bad, the future is what you make it and I am determined to make it one of the best years yet… but if I don’t, there’s always 2020!

~S