Meg on positive communication with your healthcare team

Meg is a 28-year-old self-employed hairdresser. She lives with her husband Dan and her two dogs. She discusses what she does to stay well, how she navigates changing her treatment regimen and why it is so important to establish positive relationships with your healthcare team.

What sort of things do you include in your week to try and stay well? 

“Well, I really like to exercise. I feel like that’s good for my lungs and for my mental health. I like to go to the gym a couple of times a week. I also walk the dogs most days and enjoy going to the pool for a bit of a swim too. 

I like to do my airway clearance at least once a day when I’m well. I generally do this of a morning as soon as I wake up. I find that’s the most productive time of day for me, and I generally feel better doing my treatments first thing. My airway clearance involves a session of hypersal combined with my Aerobika, then followed by my Pulmozyme. If I’m unwell I try to do another session of a night as well.” 

Have you got any other tips for exercise, whilst we’re on the topic of exercise and how you motivate yourself to do exercise? 

“I feel like it’s the creature of habit thing for me, because it’s just something I’ve always done. But definitely having a dog is helpful. Because even if I don’t feel like going for a walk, she definitely does.  

I think it’s because exercise makes me feel better, like makes me feel good mentally. I think that’s a pretty driving factor for me. I feel better after doing it. So that’s why I do it.  

And having different exercises you can do. So, it’s not always doing the same thing. It’s nice, changing what I’m doing. So, if I go for a walk a couple of days, and then might go for a swim. Because I don’t swim as often that feels like a bit of novelty. So that kind of makes it feel a little bit less like a chore as well.” 

Are there any parts of your regimen that you find hard to keep up with? 

“Generally speaking, no. I do struggle if we’re on holiday or if we go away. And I did find it kind of annoying fitting it in on my wedding day. But I generally struggle more with the introduction of new equipment or techniques. If it’s something I’ve done for a long time, then I feel like my adherence is generally pretty good. But I like, like I used to use the flutter instead of the Aerobika and it took me a while to feel converted with that. I struggle to add in things like my breath hold or AD. I sort of fall into a pattern that I’m used to and then revert back to that.  

I also struggle slightly with my concentration. I feel like I can get distracted easily. I recently moved all my treatments to the dining room table. I feel like this has sort of improved my focus. My pulmozyme I do that after the Aerobika, but then I tend to go for a walk about 30 minutes after that. 

Talking about the pulmozyme before, I know that I used to do that of a night. I felt like it made me a bit irritated of a night time. So that’s why I moved it to earlier in the day.”  

Has there been a time when you’ve found your airway clearance has made you feel worse? What did that feel like and what did you do or how did you navigate that time? 

“I’ve found, like a little while ago, my treatments were making me feel quite queasy, as in my hypersal and at this point, I think my flutter, so I still did them. But I definitely felt worse after which wasn’t very encouraging. Eventually, my doctor prescribed a combination of inhalers for me, which has helped heaps now. I either feel the same after I’ve done my treatments, or I feel a bit better from shifting everything a bit, which is good.” 

Do you modify your treatments every day or do you do the same routine? And if you do modify it, what sort of things do you look for, or listen to make that decision? 

“I’m a massive creature of habit. So, I tend to do the same thing every day. If I’m feeling the same, like if I don’t feel like anything with my baseline has changed, I generally keep them the same. But I keep an eye out for signs that I’m unwell which for me tend to be increased sputum, changing consistency or color of my sputum, more coughing, or if I feel like I’ve got a cold or I’m getting a cold, then I’ll adapt my treatments a bit.  

The first thing I probably do is increase the frequency of my airway clearance to twice daily. So, I do my morning session, and then I’ll fit another session in of a night. But I’ve also had a couple of episodes where I’ve coughed up blood and had to modify what I’m doing until that settles down. I probably struggle with that a bit more because that’s scaling things back rather than increasing a change. And I kind of feel like maybe I’m not doing enough you know when that happens. 

I know I struggled a lot during COVID, because I was in quarantine and obviously wasn’t allowed to leave the house. So, walking or going to the gym was difficult. So, I’d just do a few extra sessions of my hypersal with my Areobika, like during the week to sort of substitute for that, I guess.” 

Do you have any advice for physios or other health care professionals out there when they’re talking to patients? What have you found helpful in the past when you’re working together with your healthcare team and working out your regimen? 

“I really like to feel like I have autonomy when it comes to my health care. For me, CF is a big part of my life but it’s still not my whole life. I’ve found that professionals who treat me like a person first and a patient second probably tend to build a better relationship with me. And then with that relationship, I feel like I’m more honest and open with them, rather than telling them only what I think they want to hear. I feel like this also creates mutual respect and in my experience that probably helped me create better health outcomes for myself.  

I think where I found where I’m comfortable saying that I like I mentioned about earlier, like the breath holds and the AD are things that I’m not very good at remembering to implement, after I’ve learnt them. Being able to, you know, I guess admit that or say that I haven’t been doing that, opens me up to learning more about it or understanding why I’m not very good at implementing it or trying to implement again, rather than just sort of being like, oh, yeah, I’ve been doing that. Because I know, that’s probably what I should have been doing or what they would like to hear.  

But if I said that, or if I felt like I couldn’t say that I had struggled with it or hadn’t done it, or I’d completely forgotten, then that wouldn’t open up a conversation for me to I guess, relearn how to do it or touch on ways that it would be potentially easier to include it or things we could do that would make it easier for me to remember to do it and stuff like that.  

Meg, why do you think there should be such an importance on open and honest communication with your healthcare team? 

“Because I think that’s something that’s really been invaluable for me with my health care and my adherence and taking on those new things rather than just being a creature of habit and sticking to the stuff I’ve done since I was 10. Because obviously, there’s advancements and I wouldn’t be making the most of those if I just kept doing what I’d done in the early 2000s. 

So, I feel like communication that, yeah, that lack of judgment [from your healthcare team], I guess in that space is quite helpful for honesty. I think honesty means that we probably get better outcomes.”