Cystic Fibrosis: Treatment Hacks & Physio Cheats
It is no secret that I struggled with treatment adherence and chest physiotherapy over the years, I would go to great lengths to avoid anything “huffy and puffy”. Cleaning the loo felt more enjoyable than squeezing a Pulmazyme in when I had free time.
Like all reformed people — now I can’t get enough of having a healthy lifestyle and seeing that little smiley face pop up on my i-neb screen every time I smash another neb! So, I thought it’d be a good idea to share some of my Cystic Fibrosis treatment hacks and physio cheats that help me through the less enthusiastic days…
First Things First, Choose The Right Nebuliser Device For You
This is crucial to your routine. The age old debate, which one? Phillips vs. Pari. You’re likely either an i-neb or e-flow fan but never both. Although, I like to be the exception to the rule.
I-NEB: Made For Momentum & Practicality
I generally use my i-neb for 80% of my inhaled treatments because, hands down, it is the Porsche of the bunch when you’re shopping for speed, style and reputation. The neat, compact Royal Blue device is a perfect fit for a handbag or manbag, making it super easy neb on the go.
E-Flow: Made For Versatility & Ease
But, and there’s a big but, if you are shopping for something a little more classic and a bit steamier that does an all round job, then lets give credit where credit is due. The e-flow comes in on top. I love my e-flow device for Hypertonic Saline — the wet, steamy consistency feels much more effective for hydrating my lungs and drawing out all the good (bad) stuff during physio. Another big plus for me, it fits onto my Aerobika device if I am not feeling particularly lazy or too impatient to do proper physio (AD).
Become A Pro At Chest Clearance
We all know it, physio can be mind numbing, repetitive and difficult. I find the thing that keeps me on track most is variety. I never stick with the same old routine. That word again.
Sputum Pots: I have an unnatural amount of disposable party cups stashed away to do the job. I also have a steel water bottle for when I am exercising in public. Note; this bottle has now been branded a CoughUp® cup. Watch this space — Dragons Den?
Master Your Autogenic Drainage (AD) Technique:
Back when I was introduced to AD, I thought I was going to pass out. It felt so hard and uncomfortable. Now it is my weapon of choice. I have honed in on my craft, sometimes a classic relaxed throat and wide mouth to keep the airways open works but other times I need to close my mouth and blow out faster through my nose to create a little positive pressure which gets them “rumbles” rumbling.
I am a BIG, BIG fan of over-pressure and often rope my significant other (L) in, when the ol’ green gunk isn’t playing game.
Check out what a “normal” (AD) set of treatment looks like in the video below.
Gentle Exercise In Place Of AD When Feeling Unwell:
At times like these, I favour a quick whizz around the block with the dog or replace physio with some yoga and breathwork. I find movement helps if my chest is painful. This can be just as effective as AD as well as, lifting my mood ‘and calming my mind. My personal fave is Yin Yoga, slower poses with longer holds feel very restorative on those bad days.
SUPPORTED BACK BENDS: I tend to end all yoga practices in a deep supported back bend to open my heart centre (chest) and place a heated wheat bag across to soothe it. This pose is my go to daily, I always try to use it before physio in the evening. Stay here for 3–5 minutes melting into the mat with long, deep breaths.
Get Some New Toys To Mix It All Up:
Sometimes I bypass using AD as clearance by getting my e-flow out and popping it on to the Aerobika. Two birds, one stone. You can also do this with Acapella. Lets not forget about the Pep Mask, those little devices are still flying round if you find your airways are shutting down.
If you’re really struggling getting stuff up with clearance at home, it may be worth speaking to your team about using a Nippy as this can mimic the Bird (using positive pressure to push air deeper into the lungs).
Running, Cycling, HITT, Weight Training When Feeling Well:
Higher intensity exercise — anything that gets you huffy & puffy enough to blow the house down, is the GREATEST and most obvious physio cheat. It took me a long while to jump on the fitness bandwagon but it has been such a credit to my health and lung function since I started just under a year ago. I am pretty impressed with how quickly my body adapted to running (well, more like a very slow jog but still). It guarantees results. I promise.
Laugh Until Your Heart Is Content:
Who doesn’t love to laugh… anyone else notice how it basically sidesteps all the long physio cycles but clears just as much? Put on a funny film, watch your favourite comedian, a ladbaby clip or, just laugh for the sake of laughing until the laughing makes you actually laugh. You get me? Because not only does it do wonders for our airways, it releases all those super happy hormones too.
Lastly, Prep Those Pills Like A Boss
Dosset Boxes:
If you haven’t already got one, they are the best investment you can make to save time. And I don’t mean just buy one, seven day box. Oh no. My repeat prescriptions are every 8 weeks so I’ve stepped my game up with my boxes, I have enough for the full duration which means once they’re organised, I don’t need to think about refilling them for 2 whole months. Winning. Get the one I really rate, magically delivered to your door by Amazon, here.
Plus having dosset boxes makes taking our handfuls of pills much more less weird when trying to be cute on a first date!
Always Take Your Vitamins With Food:
Why you ask? Well, firstly this practice will begin to build an association in your brain and create a routine (something that is crucial if you want CF treatment to feel a little less of a burden). Alongside that, taking fat soluble vitamins with food means they are being taking with Creon which helps ensure maximum absorption. Win, Win.
Iron Supplements Plus Vit C:
Ferrus Gluconate and Ferrus Sulphate, are synthetic versions of Iron. To treat iron deficiency quickly, make sure you take your supplements with orange juice or high dose vitamin C to ensure up to 10x better absorption.
Did you know: Iron is the hardest mineral to synthetically restore in the body.
There you have it, all the little bits and bobs I’ve got tucked away in my treatment toolbox. Until next time, keep up the hard work.
