Last Updated: 21 January 2016 21 January 2016
Coping with a significant change in life, like chronic illness, requires that a person come to terms with his/her situation, focus on what s/he can still do and make sensible changes, such as:
- Educating oneself about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) in order to get a reasonably good understanding of how the illness manifests and how it is generally managed.
- Establishing a new sense of "normal" for yourself by trying to recognize early signs of when you are starting to surpass your limit and determining when you tend to feel or function your best. Don't overdo even when having a good day. Always plan rest breaks.
- Pacing activities by alternating tasks/chores and breaking them down into smaller, more manageable steps and resting in between. Prioritize and determine what can wait. Try to schedule things (if at all possible) when you function best and add a little extra time to avoid rushing or unforeseen delays or problems along the way.
- Creating a safe, quiet space for yourself where you can clear your mind and rest—especially for sleep. Keeping the television on may provide company, but the bright, flickering lights and continued background noise can interfere with sleep. It will also interfere with cognition, since ME/CFS and FM patients frequently have trouble focusing and multi-tasking.
- Developing a routine by which to keep track of appointments, planned activities and even symptoms. A calendar with large write-in blocks or a spiral notebook will serve the purpose. A calendar will help you quickly see how appointments or activities are spread out and help to fit in adequate recovery time in between these. Another calendar could be used to record symptoms and medications (especially adverse reactions), which in turn, may even help identify a pattern in symptoms or pinpoint when a specific problem started. Keep several pads of paper handy so you can jot down thoughts or something you need to remember. Also, try to establish a designated place where you leave your keys or glasses.
- Finding ways to escape daily drudgery and have fun—such as music, movies, audio books, puzzles, crafts, going outside (whether you can take a short walk or just sit in fresh air), and/or looking for community events at local schools, bookstores, churches or centers.
- Seeking support through groups, whether these are actual groups or internet message boards, and trying to stay connected to others by short emails or phone calls. Plan a "field trip" with a friend or neighbor for lunch, shopping, or a concert. Invite a friend over for a "sleep over" and just sit around in your PJs, talk or watch TV together. Try to maintain a sense of humor and remember to laugh.
- Journaling can help to release bottled up feelings/thoughts from one's mind to paper. This way, you are not carrying these with you all day.
- Attending to your emotional and spiritual needs. Try reading inspirational material or going to church or temple. Find something uplifting and meaningful to do—like sending a personal note or card to a friend or someone in the community.
- When the going gets too rough, it is perfectly fine and advisable to seek a practitioner or therapist for one-on-one counseling to help you grieve the losses, accept the illness and make healthy lifestyle adjustments.
10 Rules for Those Who Love ME/CFS and FM Patients
A View from Outside: How to Help a Person with ME/CFS
Book review of Full Catastrophe Living—Using the Wisdom of your Body and Mind to Face Stress, Pain and Illness by Jon Kabat-Zinn Ph.D.
Book review of How to be Sick: A Buddhist-inspired Guide
Coping articles—A selection
Dr. Lapp's Stepwise Approach to Managing FM and ME/CFS
Emergency Preparedness Plans for ME/CFS and FM Patients
Living in your energy envelope
ME/CFS Self-Care: The Basics
My Perspectives on the Making of a Support Group
Perspectives on Friendship
Recovering from ME/CFS
Rest, Pacing and Stress: What Every ME/CFS Patient Needs to Know
The ME/CFS Initiation—A Primer for New Patients
Tips for living with ME/CFS and FM
Tips for traveling if you are an ME/CFS or FM patient