Daily routine and life with cystic fibrosis
Establishing a routine is important
Fitting in a cystic fibrosis (CF) treatment routine and keeping on top of it can be complex and time-consuming, especially if you like to lead a busy life. It is therefore very important to establish a daily routine that makes it as easy as possible for you to follow your CF treatment and physiotherapy schedule, as prescribed by your doctor.
Establishing a routine
Some ways to help you establish a daily CF treatment routine are listed below. If you’ve been managing CF for years, you might have already established a routine and you may even be using some of the tips below already–but take a look, you might find something new!
Tips for establishing a daily CF treatment routine:
1. Organise a routine that works for the whole household
Involve everyone! Set up a daily routine that works for you and ideally all the other people you live with, such as your parents, brothers and sisters, grandparents, a partner or housemates. Using a shared diary or wall planner can be a simple and highly visible way of keeping everyone aware of who is doing what and when.
If your CF treatment routine works for all of the people around you as well as you, it is more likely that you will be able to stick to the routine.
2. Start early in the morning
Getting up early in the morning to fit in your CF routine (medications, physiotherapy, and nebulisers) before other activities in your day demand your attention will help to ensure that your routine has a minimal impact on your daily life.
3. Be organised
Organisation is key to making your CF treatment routine a normal part of everyday life. It can be helpful to:
- Check the required storage conditions of each medicine
- Keep all, or at least a majority, of your medicines in one place
- Save time by organising your cupboard with all of your medicines made up for a month at a time
- Make sure you never run out of your CF treatments
- Plan prescription refills by making a note of your next prescription due date, and arrange to receive repeat prescriptions before the current stocks of your various medications run out
Fitting life with CF in around your child’s life
If you have a child (or children), establishing your CF treatment routine while juggling the demands of a young child can be very challenging. Here are some helpful tips for establishing a routine around their lives:
- Try to fit your CF treatment routine in at the same time as your child’s breakfast time, before their school run, to avoid having to do it later
- Try to fit clinic appointments in while your child is in school. At other times, if possible, give your child the option to come with you to the clinic or stay with a relative or friend
- Have a plan in place if you fall ill or become hospitalised to help with childcare. If you think you do not have anyone who could be available at short notice, it would be worth discussing this with your CF Care Team so that you know which support you can call on if you ever you should need it
Remember: Every time your doctor makes a change to your treatment, it is important to make sure that any changes fit in with your entire CF treatment routine. Your doctor and nurse will always be pleased to help so never hesitate to ask for their advice.
Maintaining a routine is important
However well you establish a cystic fibrosis (CF) treatment routine, the unpredictability of day-to-day life means that sticking to it is likely to be challenging at times. Nevertheless, it is important that you continue to take your CF treatments correctly, as prescribed by your doctor, each and every day.
Even if you feel well, or feel no better after starting a new CF treatment, it is important for you to continue to take it correctly as part of your routine.
Think about how friends, family, and housemates (your support network) could help you stick to your treatment routine. If you are finding it a challenge to do everything yourself, or would like to involve others in your CF routine, here are a few ways they can help:
- Acting as a reminder or back-up support to help ensure you follow your treatment routine
- Help you prepare your treatments
- Help you with percussion and other physiotherapy
- Doing simple visual checks around the home, like checking you have used your nebuliser at the correct times based on whether your equipment has been washed and left to dry
- Discussing any concerns, and helping to share responsibility for spotting risks to your treatment routine
- Help with activities you find difficult to carry out, for example cooking if you can’t stand for very long
It is a good idea to look out for things that could potentially upset your CF treatment routine and be proactive in trying to prevent them from happening.
Plan ahead to maintain routine away from home
If you are going away on holiday or staying away from home over night, it is important to plan ahead so that you can maintain your normal routine. For advice and tips on planning ahead, visit Sleep and travel.
Big life changes
Big life changes, such as relationships, moving home, starting a new school or university, getting a new job, or even transitioning from paediatric to adult CF care, can disrupt your CF treatment routine. Although these things can make it a challenge to keep to your routine, it’s important you do so for your wellbeing.
It is difficult to predict exactly what will change in these situations, but try to think ahead about the best way to adapt your CF treatment routine. Being prepared and organised can help make the transition as smooth as possible.
If you are starting college, university, or work, it is important for your teacher or employer to understand your specific needs and how they can help.
If you are planning to do a college or university course, some things to think about are:
- The type of course that is appropriate in relation to your CF health status (e.g. part-time, modular, full time)
- Asking your Social Worker for help with CF routine planning so that you can fit your treatment and physiotherapy around a demanding revision schedule
- Demands of the course, for example whether you will be required to travel frequently
- Talking to your Social Worker about the availability of grants/funds (e.g. for buying computer equipment or help with accommodation and heating needs)
- Location of the campus to your nearest CF Centre
- Facilities for safe medicine storage
Other things to consider while studying:
- Multi-tasking such as revising while using a nebuliser or having a friend carry out your percussion
- Asking college or university friends or housemates to exercise with you
- If you need to take time off for ill health, talking to your CF care team and college/university about delaying exams/graduation while you get well
You may be employed full- or part-time, or you may be considering starting a new job. In all cases, here are some points to consider:
- Disclosure of CF status. You may want to discuss with your CF care team whether it is a good idea to tell your employer about your CF
- Flexibility of working arrangements (e.g. to attend clinic visits/hospital admissions)
- Whether you want a physical or a desk-bound role (or a combination of both)
- The type of hours suited to your health status (e.g. part-time or full-time)
- The pros and cons of being employed or self-employed (e.g. control of your circumstances)
- If possible, making exercise part of your working day (e.g. cycling to work or a quick run at lunchtime)
Cystic Fibrosis Foundation. Managing Your Treatment Plan. Available at: www.cff.org