A caregiver’s story
My name is Jana and I provided care to a person with Myalgic Encephalomyelitis (pwME) for several years. My pwME was my husband and the journey from partner to caregiver wasn't easy. I learned much about ways to cope and finding new resources that could help me do it better.
One of the first things anyone said to me when they find out that I cared for someone who is chronically ill and bed-bound, whether they’re a doctor, nurse, other health care provider, friend, stranger, is that self-care is important. But that is often easier said than done.
This page is here to try to help you in your caregiving. Some of the references are to ME-specific caregiver resources or information but many are not. It’s important to note that none of these links are endorsed by the ME|FM Society of BC. Everything has been collected based on how it has helped me, or other caregivers like me, and I hope you find some of it helpful too.
If you have questions, recommendations for sources for this page, or you would like to share your own story, please contact firstname.lastname@example.org.
ME caregiving resources
Many caregivers also find books, websites, blogs and podcasts about living with ME can also be helpful when trying to understand what it’s like to live with ME.
Non-ME caregiving resources
Other caregivers have found books, podcasts and blogs on the following topics helpful:
Meditation and mindfulness for caregivers
Relaxation and stress relief techniques
You may also want to consider:
Some form of regular physical activity, acupuncture, massage
Guided breathing and meditation
Apps that help with time management, organization, health and wellbeing