Everything You Have Always Wanted To Know About Keeping A Treatment Diary
One of the biggest struggles living with cystic fibrosis (CF) is managing the daily slog of treatment. This is the most common issue in CF care and one that many patients aren’t shy to speak about.
Treatment is boring. Tedious. Time-consuming. Above all, it is relentless.
Staying on top of a multitude of hospital appointments, CF clinic’s, medical tests, repeat prescriptions, daily treatments and endless medications is exhausting; the energy expense alone, both mentally and physically, can break the most motivated people.
I wasn’t surprised when my medical team pinpointed that CF has the highest treatment burden of any genetic condition.
After thirty years of trying to do better and be better, I found treatment diaries and progress tracking were the key. Here I am going to share why, what and how…
Finding your motivation
Mindset is everything
Sometimes looking too far ahead into the future feels daunting or can leave patients feeling defeated before they’ve begun. To combat this focus on the immediate effects of doing CF treatments like less coughing and a clearer chest after physio.
Take your time setting achievable goals to avoid disappointments or setbacks. A general mistake when trying to plan a new routine is getting lost in what we would like to achieve versus what is realistically achievable. Alongside this, it is crucial not to get caught up in negative thought patterns by focusing on missed nebs, nobody can manage 100% treatment ALL the time.
Once in a blue moon, have guilt free day off if it is medically safe to do so. Maybe it will be a special occasion day like a birthday or perhaps just a random day that you decide you are “checking out”. We all deserve a well earned break.
Some patients find it helpful to speak to their team who can help set realistic goals and gently hold them accountable by checking in for progress updates. They can also help review where things aren't going so great and encourage you to make the right adjustments.
Don’t give in at the first hurdle, this isn’t an easy feat. When you fall off the CF wagon, get back up and back on as soon as possible.
It’s all in the P’s… Plan, Prepare, Practice. Repeat. If you are lucky eventually it will become a nearly effortless routine!
BE FLEXIBLE! Flexibility really is the top secret to making it all work. Not everything you put into your treatment schedule will go to plan, the quicker you learn to adapt the easier it will be to stay on track.
Draw up a visual treatment diary. It is easy for our heads to create their own narratives around treatment which isn’t always accurate. By writing it all down the bigger picture becomes clearer making it much easier to track progress or notice when the scales tip a little too much to one side.
Creating the treatment diary YOU need
If creating a treatment diary feels overwhelming, I would recommend a spreadsheet which feels a bit easier to grasp. Another idea which requires minimal effort is using an annual wall calendar where you can mark off the days quickly.
Writing every last detail down helps make each individual task feel bite sized and a lot more manageable. Don’t just stop CF treatments - I add in exercise, meals, sleep, mood, menstrual cycle, lung function results and anything else that feels relevant. You could add other symptoms too like cough, temperature or blood saturations if you use oxygen.
When creating a treatment diary, make it personal. Use motivational quotes, colours, stickers, stars, fancy pens or whatever makes it feel positive and interesting for you.
For every disciplined effort there is reward
Better treatment management usually equals less hospital admissions or clinic appointments which is by far one of the greatest rewards. Patients who keep track of their treatment say they feel empowered and much more in control of their health.
Patients who have visual representations of their health trends may benefit better clinically. Better treatment adherence helps minimize infections flaring, reduces lung inflammation and increases breathing capacity - the ultimate reward.
Don’t forget to reward yourself. After all your hard work and commitment, treat yourself to something nice. This could be something luxurious like a massage, a coffee and cake at your favorite coffee spot or buying yourself a more practical gift.
How has CF impacted your decision to become a parent?