If you have, or have heard of cystic fibrosis, you will likely know that digestive system management is pretty much a full time job. From calculating fats and carbs to digestive enzymes and insulin, as well as dealing with the CF symptoms that can occur.

Over the last few years I’ve learnt some tricks that help me to better manage my digestive health and keep my tummy happy.

I’m so happy that I’ve finally put this in a blog post - both for my own documentation, but also to give anyone that needs it some ideas of tweaks that you can experiment with.

I talk about: what I do and don’t eat, what I do and don’t drink, what kind of movement helps, hormonal considerations

I used to really struggle with using airway clearance devices like flutter and acapella.

I found I got restless. I got bored. I got distracted.

I could go months or years without using certain types of airway clearance equipment, because I just didn’t get on with it. I used different methods that were less reliant on breathing into a device. While we don’t have the vest readily available in the UK, I can understand why people choose this passive airway clearance technique.

The thing is, I have come to realise, over years of doing different types of physical activity and different types of breathing exercise, that breath awareness and an active breath (versus passive) is far more effective.

I’m writing this because for the first time in years today, I decided to pick up my flutter and give it a go.

Why did I do this? And why did I find I was able to finally feel that I was able to do this effectively?

I was diagnosed with cystic fibrosis-related diabetes (CFRD) in the summer of 2018. I think the official diagnosis came late August when I was first prescribed insulin, though it was my glucose tolerance test at my annual review appointment in April that first hinted at the diagnosis.

It was really my own self-awareness that ultimately resulted in me asking for insulin when I needed it, as I felt I couldn’t wait any longer for someone else to make that call. Knowing my body as well as I did, meant that I was making correlations that my Drs weren’t, and it may have saved my health from getting a lot worse. So, I wanted to share the things that led to me pushing for a CFRD diagnosis and the insulin prescription that I needed.

I’ve never been much of a runner. I’ve tried at various points in my life.

The reason I keep trying is because I know that it’s really good for my lungs. Living with cystic fibrosis, I have to put a lot of time and effort into keeping my lungs clear and healthy, and one of the things that gives me the biggest bang for my buck when it comes to airway clearance is running. Well, jogging, in my case...

When doing core/ab workouts, I often felt like my breathing wasn’t controlled. I felt like I was breathing shallowly and erratically. Sometimes both. I felt like I was tense in places that I shouldn’t be tense. Especially in my shoulders and neck, which probably affected my breathing. I felt like I was rushing to get reps or to fill timed intervals. It was rare that I could actually feel the movement itself. Instead, I could only feel the discomfort of it.

Does any of this sound familiar to you? If so, the good news is that it can get better!

I started taking my first CFTR modulator drug - Symkevi - on 31st January 2020, after it was made available on the NHS in the UK.

For someone with cystic fibrosis (CF), I consider myself really healthy. But, with each year that’s passed until now, maintaining good health has taken more and more work. My hope for starting Symkevi was that I would have to work a little less hard to maintain the health that I have now. But the changes that I saw in myself have actually been very different than that… Am I actually working harder?

People seem to be suffering with sinus issues more and more. So, as we’re well into allergy season (a lot of tree pollens start to build from March), I’ve already stepped up my sinus care regime and found myself seeing friends and family following suit as they see the benefits I get.

Outside of the obvious, I find the amount of waste that I produce really frustrating. If I want to stay healthy, I have to take my medication. If I take my medication, I have a tremendous amount of packaging to deal with.

Inhalers are one area that I’ve been trying to become extra conscious of.