CML Hub__>__Being a carer with CML

Being a carer with CML

__13 March 2023

Living with chronic myeloid leukaemia (CML) has impacts beyond your own health and wellbeing. Because treatment enables you to live an almost normal life, there’s a good chance you’ll also be responsible for caring for others in some capacity.

That could mean caring for children, or for older friends or family with their own health needs. Being a carer can be incredibly rewarding, but you run the risk of neglecting your own needs by focusing exclusively on others.

You may find yourself forgetting to take medication or missing medical appointments if you’re overstretched, which will only cause more stress. Here are our tips for finding a balance that you can live with:

Share your responsibilities

It takes quite a lot of courage to admit to your loved ones that you’re struggling, but it’s vital that you speak up when you’re under too much pressure.

You won’t be able to provide good care if you’re burnt out. Learn to delegate tasks to other people in your life, whether that’s family, friends or volunteers from a patient organisation.

Help is always out there for those who ask!

Track your tiredness

CML can cause fatigue, and some of the medications you’re taking might compound that problem. This is absolutely something your healthcare can support you with.

The CML Advocates Network has developed an app for PC, iPhone and Android phones called Know Your CML that lets you take notes about your symptoms and quality of life.

If you make it clear that you need to be focused and alert to fulfil your caring obligations, they may be able to tailor your medication to minimise the effects of fatigue on your day-to-day life.

For more advice on talking to your doctor click here.

Don’t overcommit

It can be tempting to automatically say “Yes” when your loved ones come to you asking for help – especially young children – but you must recognise that sometimes you have to say “No”.

Think of your time like any other valuable resource: there are things you need to do, and things it would be nice to do, but not enough time to do everything.

Managing your CML takes up time every day, so make sure you prioritise the things that really matter!

Take rest days

This one can be difficult if you’re used to being ‘on call’ 24/7, but it’s really important. Being strict about having free days on a regular schedule will give you time to recharge so that you can return to your caring role without getting overwhelmed.

Of course you can be flexible, but your loved ones should get the message that you value your own needs as much as theirs.

Your healthcare team will be able to offer advice that’s specific to your personal needs, whether you’re having trouble sleeping, or concerned about the emotional impact of CML on you and your family.

Please consider reaching out to them for help!