Eleven Skills I've Learned from having Cystic Fibrosis

Having an illness like Cystic Fibrosis (CF) brings with it a few obstacles and hurdles. However, it brings a skill set I never knew I needed. Even now, I'm still learning a lot about CF and how it affects my body. You'd think I'd pretty much know everything after 31 years, but honestly, I don't. I wing my life with CF half the time, and that's god's honest truth. I take my medications, do my exercise, carry out my treatments and attend hospital appointments and that's that. As I said though, I may not know entirely everything, but I have a new skill set that only people with CF or any other disability/chronic illness will relate to.

An array of Cystic Fibrosis medication, including Creon and an insulin pen.

Firstly, what is Cystic Fibrosis?

I have talked about CF on numerous occasions on my blog. But it doesn't hurt to re-introduce it again to those possible new readers I have accumulated lately. 

Cystic Fibrosis is a chronic genetic condition that affects the exocrine glands. It means I produce abnormally thick mucus which affects the lungs, digestive system (particularly the pancreas) and sinuses. I was diagnosed when I was six weeks old but I was born with it. 

How does it affect your everyday life?

With having to take 20 medications every day, I'd say CF does impact my life a little! Not only that, I'm working out at least 5 days a week to keep my lungs as strong as possible. So as you can imagine, my life is a little hectic! However, I don't let CF define me as a person or let it take over my life. 

So what skills have you learned from having CF?

As I said earlier, I have gained a new skill set over the last 31 years, particularly since I became an adult. These skills you may or may not relate to, it's just a bit of fun and even a little factual!

A woman using a physiotherapy device called an 'Aerobika'.

These are the skills I've learned from having Cystic Fibrosis:

Learning to have the patience of a saint with GP's - I honestly need the patience of a saint to deal with my GP and in particular, GP's receptionists who think they know it all. Also don't get me started on trying to get through to them on the phone, I've got more chance of speaking to the Pope.


Mastering swallowing multiple pills at once - I try not to do this so much now as I don't think it's entirely safe due to the risk of choking, but the small tablets I can swallow in one go. 


Identifying which arm is the best option to have blood taken from - having Cystic Fibrosis means numerous blood tests at clinic appointments. I always have blood taken from the arm, not the hand. A quick lesson for you here - never have blood taken from the hand - it hurts like hell. 


Mastering the chest x-ray position - shoulders forward, hands on the hips, arms and chest forward, chin on chin rest. Simples.


Pre-planning when I need to order my prescription - especially around bank holidays - I need to order my prescription in advance to make sure I have enough medication. This involves a bit of math, something I am not the best at doing. 

An array of Cystic Fibrosis medication, including Creon and an insulin pen.


Packing perfectly for a hospital inpatient stay - a hospital inpatient stay requires packing the right things and the right amount of clothes, medication etc. Also snacks, they are the most important thing.


Memorising my medication and their dosages and their spelling off by heart - names like Prednisolone, Itraconazole and Azithromycin aren't easy to roll off the tongue. Also, they're not easy to spell either. It's important to know and remember what dosage of medication I'm on, it's dangerous if I don't take the right dose.


Coughing up a bit of phlegm when the physiotherapists ask me for it - if the physiotherapists need a sample on the quick, they're going to get it. 


Figuring out how much Creon I'll need for each meal I eat - I've had to master this skill from a young age. Creon is a medication I take with anything I eat. As my pancreas doesn't function properly and doesn't produce enough enzymes to help digest my food, I need extra enzymes to help, which is where Creon comes in. I have to calculate the amount of Creon I take with the calories in my meal. Again, this involves a lot of math. 

Knowing what food to have or not to have in the hospital - from my personal experience, I stay away from the rice pudding in the hospital, it's not as good as Ambrosia. 


Timing my appointment around finding a car parking space - hospital car parks are busy. As I live 45 minutes from my CF clinic, I have to leave early to get a parking space. Car park rage is a thing guys, especially when you know you'll be late for your appointment. 

This is my skill set from having CF! 

I'd love to know your thoughts on this - can any of you relate or have I missed something? Let me know!
24 comments
  1. This post is so inspiring! Your strength and positivity shine through. Thanks for sharing your journey and the unique skills you've learned. It’s eye-opening and truly motivating!

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  2. I don’t know much about CF so this was really helpful to understand a fraction of what you go through. I have Fibromyalgia and chronic pain and although it is not the same I do understand some of these skills you’ve had to learn as I have too. You sharing your experience will be inspiring others living with CF too! Thank you for sharing.

    Lauren - bournemouthgirl.com

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    1. I hope you're doing ok at the moment Lauren, I've learned a lot about Fibromyalgia from your blog also. I'm glad you have found this post helpful lovely!

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  3. I've only learned about CF through following your blog and IG. Thank you for taking the time to share and raise awareness of your conditions. I love that you've managed to take a positive spin on things and I can definitely see how this condition helps hone in some skills!

    I don't have CF but I can definitely relate to knowing where to draw blood. I had to do a lot of blood work throughout my pregnancy and instantly I would tell the nurses that my right arm is the best and nothing else, haha. Having needles in the hands definitely sucks!

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    1. Having Cystic Fibrosis has definitely helped me learn a lot of skills I never knew I needed Claire!
      Having blood taken out of the hand is so painful, I always opt for the arm and like you, the right arm over my left arm!

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  4. Good knowledge sharing on CF. I heard of CF before. But I did not what is CF like. Thank you for this information. Please take good care of yourself. You're strong. So keep it up.

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    1. Thank you Fadima, I hope you've found this post insightful!

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  5. It is amazing how adaptive we humans are, and that we can learn new things that we may never have thought we could master. I found this when caring for my husband throughout his illness. We are often far more capable than we think, and the skills you have learned are amazing. Thank you for sharing!

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    1. Absolutely Molly, as humans, we are far more capable than we think we are and we are always learning new skills!

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  6. Wow, your journey with CF is truly inspiring Lucy! Your practicality in handling the daily hurdles of this condition are just amazing. I especially love your insights on mastering hospital stays and pre-planning prescriptions—so helpful! xx

    Lenne | lennezulkiflly.com

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    1. Ah thank you so much Lenne! It's so important to pack properly for hospital and pre-plan ordering prescriptions! xx

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  7. This is so helpful! I don’t have CF but I know plenty of people who have chronic illnesses (myself included). I can really relate to the medication one, such a problem when traveling or when it’s a holiday!

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    1. Yeah it's such a nightmare trying to order everything before travelling or before a holiday!

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  8. Thank you for sharing your journey. I bet this is so helpful to others suffering from a chronic illness. I hope you're doing ok x

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    1. Thank you Chloe, I'm doing well at the moment thank you (touch wood!) x

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  9. Absolutely Lanae, anyone with a disability and/or chronic illness need to have the patience of a saint!

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  10. I’ve heard about CF before. But don't the know the challenges people who have it has to face. Thank you for sharing this knowledge.

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    1. I hope this post has given you an insight into what living with CF is like Fadima!

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  11. I admire you so much Lucy. You always turn everything into a positive and I am so in awe of you!
    Rosie

    https://www.loverosiee.co.uk

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    1. Aww Rosie that is so kind of you to say, thank you! x

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  12. So glad I was led to read this post today. Thank you so much for sharing the link on the Blogger Hut RT post on X. I really learned a lot from your post.

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    1. I'm glad you have learned a lot from this post lovely!

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  13. Such an interesting read! Loved it! Some of the pointers made me chuckle - The car parking one is so true! Hospital car parks are no joke - So anxiety inducing.
    Claire.X
    www.clairemac.co.uk

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    1. Hospital car parks the biggest anxiety inducers! Especially when you're late for an appointment and can't find a space! x

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