Post #4 - A day in my life

Hello everyone, hope you're all keeping well and having a good new year!

For this post I thought I would do a 'day in the life' style format. A look into how I spend my days, this will be a general day in my life, some days are more exciting, and busy, some are worse and I do very little, it all depends on how my lungs and I are feeling day to day!

I am not a morning person, anyone who has ever met me will tell you that. So I don't tend to get up early but I have my alarm set for 9am to try and be productive with each day. (Side note: It is not necessarily the mornings I don't like it's the waking up, so for example if I had to wake up at night instead, I would equally not like the night!) As I don't have a job at the moment, due to my CF, I have no 'proper' reason to get up in the morning, it can be difficult to motivate myself but most days I manage...even if it is sometimes just for food!

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If all you've done today is wake up and read this blog then I'm proud of you, some days waking up and doing anything is difficult, don't beat yourself up. Everyone needs quieter days, sometimes it happens for a few days or weeks where you feel 'meh' but just remember you've had better days and you will have them again, if you're feeling really down, speak to someone, the GP's, if you're part of a CF team or similar already, then ask to speak to the psychologist, or use the many tools available to you online or over the phone; and sometimes just speaking to a friend or family member can help, you're not alone.

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I tend to get up and do my first nebuliser (Pulmyzyme; a nebuliser is an inhaled device to help get the medication to your lungs), once this is done I have to wait a minimum of an hour before it becomes effective so I normally go back to bed either to continue sleeping or to scroll through my phone, and then have a shower. After the hour I do my first inhaler (Ventolin) to open up my airways and then my second nebuliser (Hypertonic Saline; this is salt water, similar to sea water which helps to move things around in your lungs and gets you coughing!) of the day followed by some chest physio. This can involve using 'gadgets' such as a flutter, which helps to get the lungs moving. This is in an attempt to get me to cough and clear my chest. I then do another inhaler (Trimbow) post physio and my third nebuliser (Promixin) of the day which is an antibiotic.

Some days I go for a run after my first nebuliser which helps get the lungs moving before my physio; a bit harder to do in the cold winter weather though!

After this I will take my tablets and have breakfast. I take a couple of Creon 10000, Kaftrio, Iron, Sertraline, Azithromycin, Vitamin D (I only take this twice a week), Multivits, Vitamin E and Vitamin K.

(A quick explanation of each medicine:

Creon 10000, helps me to digest my food, I have to take them when I have any fat containing substances, so whenever I eat anything, except fruit and veg and some sweets, and whenever I drink, again except water, fruit juice etc.

Kaftrio, NEW triple therapy gene modulator - does a lot of good!

Iron, helps my iron levels

Sertraline, for my depression

Azithromycin, an antibiotic to help keep any infections at bay

Vitamin D, Multivitamins, Vitamin E and Vitamin K, for my vitamin levels)

I'm then ready for the day and have a few hours before I need to do anything else. I live alone so I will always be tidying up, doing a food shop, looking at my Nail Technician College Course theory or practical, and sometimes I just sit and watch Netflix or do some online shopping! I try to always make sure to have three meals a day, a lot of the time I have big dishes for my lunch and dinner, and lots of snacks; people with CF can struggle to maintain/gain weight, since being on Kaftrio I no longer need extra help with my weight via supplements and have been weighing around 9 stone for about 6 months, which I'm very pleased about. I'll then make lunch, and I normally give my friends or family a call/FaceTime too, depending on who's at work.

About 4 hours after my first lot of physio, I get everything ready to do it all again, this time I'm doing my Ventolin, followed by my Hypertonic Saline, then some more chest clearance, my Trimbow inhaler and then my Promixin again.

Sometimes before my afternoon session I will do some exercise. Throughout the first shielding phase I did a lot of Zoom exercise classes with the Physio's from my CF Centre, |'ve managed to keep up with this a fair amount but again the motivation fluctuates; especially in the winter, for me personally. I'm definitely looking forward to getting back to the gym and to the Zumba classes I started doing at the beginning of the year. But as for now, the Physio team have sent us the new timetable and my CF friend and I are planning on trying out a few different sessions together. It's been such a brilliant idea throughout this year and hopefully even once life becomes a new "normal", the Virtual Leisure Centre can continue, it's a nice boost to be able to do it from home and share the experience with other CF brothers and sisters :)

It's then normally about dinner time, I'm not the best cook in the world, I don't particularly enjoy cooking but I can make a good few dishes, and I think my boyfriend enjoys the fact I can make him a roast. I want to venture out and try more dishes but I get quite lazy, hopefully this year I can experiment a bit more! After dinner, I'll sit and watch some evening TV/Netflix or play on my playstation or Wii, I do have some more creative things such as an adult colouring book, or knitting - I can actually knit - or I do love a good relaxing bath, bubbles or bath bombs, candles and a cuppa (or glass of wine, depending on how the day has gone), and sometimes even a nice face mask too, absolutely lovely! For Christmas this year I received an acoustic guitar, I did ask for it as I think it would be lovely to learn, but having long nails and playing the guitar don't mix as I'm now finding out! I don't want to get rid of my nails though so I shall persevere with it!!

Finally for the day, I take my Kaftrio evening tablet which I normally have with a hot chocolate as the Kaftrio needs to be taken with fat containing substances.

(Every other month I exchange my Promixin nebuliser for Aztreonam -another nebuliser, which I do three times a day; with the two physio sessions and with the night time dose of Kaftrio).

It might appear to be a lot and sometimes it does feel that way but most of the time it doesn't take too long and it's all I've ever known so it hasn't 'changed' my life as such. It can be difficult to keep up with the medications and when you're not well you're meant to take more but in reality you take less as you don't feel up to taking them; it's a vicious cycle.

Every few months I go into hospital for two weeks worth of Intravenous Antibiotics (IV's), I have a Port - a - Cath in the right side of my chest which the nurses put a needle in to and I have the IV's administered that way. (I shall go into more detail about IV's in another post).

I think this pretty much covers my day to day life, I hope this makes sense and gives you a better understanding of how much involvement CF can have in my everyday life!

As always, if you have any suggestions for new content please let me know. And if you have any questions about anything written in my posts (this one or others) please send me a message and I'll answer as best I can!

Stay safe, be kind, and enjoy the new year as best you can! Here's to a more positive 2021 xoxo