A caregiver’s story
My name is Jana and I have been providing care to a person with Myalgic Encephalomyelitis (pwME) for several years. My pwME is my husband and the journey from partner to caregiver hasn’t been easy, nor is it over. I’m still learning about ways to cope and finding new resources that can help me do it better.
One of the first things anyone says to me when they find out that I care 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
MEAction’s caregiver Facebook support group. You have to request access to this closed group for caregivers of pwME from all over the world: https://www.facebook.com/groups/meactioncaregivers.
SolveME patient and caregiver resources:
Caregiver - https://solvecfs.org/loving-someone-with-me-cfs/
US CDC document for parents of children with ME:
Open Medicine Foundation (OMF) resource page with
specific resources for parents of children with ME:
MEAction’s guide to caregiving with additional links at the end of the document: https://www.meaction.net/wp-content/uploads/2015/05/Caregivers-Guide-to-ME-1.pdf
ME/CFS and FM Self-Help page with links to 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
Caring.com is a site geared to people caring for the elderly but there are some less specific resources are available: https://www.caring.com/caregivers/
The Caregiver Space: https://thecaregiverspace.org/
Doctors of BC list of community resources for family caregivers, including financial aid: https://www.doctorsofbc.ca/sites/default/files/resourcesforcaregivers-tearsheet.pdf
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