This newly updated comprehensive booklet considers the well-being of carers, what might be involved as part of caring for someone with ME/CFS , and the kind of help that might be necessary, plus the booklet includes personal stories.
Introduction
Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help.ME/CFS is one of the hardest conditions to manage and can represent a real challenge to the people who have it and to those who care for them. Symptoms and severity can be unpredictable.
For a loved one it can be very difficult to watch a previously active and engaged partner or family member suddenly be unable to cope on their own. This disabling illness affects each person differently and can mean a big adjustment for those who have had to suddenly become carers. People with ME/CFS might be bedbound with very severe symptoms, be unable to communicate, be sensitive to stimuli, be restricted in what they can eat or drink, and require 24-hour care.
But even those who are less affected or who have reached a period of relative stability, will need help with some aspects of their daily lives. The problems you face as a carer will also vary and for each carer they will be different in some respects. Caring isn’t just about providing physical help to a person who is limited in how much they can do for themselves, it often involves emotional support and encouragement as well.
ME/CFS has a range of symptoms that are the same for most people, but the severity of those symptoms can fluctuate and are adversely affected by activity. This can make the condition and the degree of help required on any particular day quite unpredictable.
In this booklet, we hope to provide you with a basic review of caring for an adult with ME/CFS and provide some real-life examples based on community feedback.
