- Last Updated: 06 December 2015 06 December 2015
by Jean Mosher, R.N.
Twenty-five years ago I was working as a private duty nurse, and it was at this time I met a family member of one of my patients. She was very energetic and involved with life and is the most creative person I know.
As I recall, she had been diagnosed with myasthenia gravis and other assorted illnesses. Nothing was clear-cut and no definitive diagnosis was made for a very long time. It took some 12 years for that to happen.
As our friendship grew and I learned more about her medical history, I heard ofthe disease that was then called Chronic Epstein-Barr Virus, now referred to as Chronic Fatigue Syndrome CFS) or Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS). Although I am the nurse, I have learned a lot from my friend, now supposedly "the patient."
Observations about energy: "Talking Hurts"
CFIDS is an all-encompassing and all-consuming disease. I hear about and have seen the consequences of brain dysfunction and the inability to comprehend simple information. Ordinary tasks including walking can be very arduous for a person with CFIDS (PWC). It is not at all unusual to lose muscle strength and fall at any time. I have seen this in my friend.I hear that energy is very valuable, almost a gold standard for these patients. The energy it takes to even talk on the telephone is not easy, complicated by the persistent sore throat. Talking hurts. There are sleep disturbances. Going to bed does not mean "going to sleep." I hear ofnights that no sleep was possible or, more usual, finally getting to sleep about 6 a.m.She also has times where her sleep is disturbed and can wake every couple of hours. After sleeping 10, 12, or even 14 hours, she still is exhausted. Sleep studies seemingly have documented this disturbance but relief does not seem to be within her easy grasp.
Finding a time to visit a person with CFIDS also is difficult. If the person has some energy, it may be more important, as they prioritize their time, for them to take a shower, feed themselves, do laundry, when possible, or see doctors. Social interplay takes work. Perhaps only one or two requirements for daily living can be accomplished and the remainder put off for a later date. I have found that people who are that ill usually do not use energy to make telephone calls for help, for they are too debilitated and are in bed.
A busy week for my friend would be to have three days outside the home, perhaps taken up with medical appointments. The rest of the week she is in bed. A good day would be to have enough energy to accomplish something for a two-, three-, or (pushing) a four-hour period in one day, including eating a meal and the preparation that goes with it. There are times my friend is too ill to eat,because as she explains it, it takes too much energy to prepare meals. Money is tight—and fast or prepared foods not an option.
Times of the year are also very important for my friend. The amount of sun and the temperature of the day have significant repercussions, as do the sudden barometric pressure changes. She does better when it is warmer and there is more light; she suffers from Seasonal Affective Disorder. This seems to aggravate the CFIDS symptoms.
What friends and family can do
How to help as an outsider? To help a person with CFIDS is not to say: "Call me if you need me." That call most likely won't come. No energy to reach out.
To help is to enable independence, recognizing that every motion is energy and little energy is available. Doing shopping, picking up prescriptions, doing an errand, making a meal are all valuable aids for anyone with CFIDS. Even offer to change a bed or clean. Help make phone calls, mail a letter, or offer to fill in forms when necessary; Any little thing to a well person is a mountain to climb for a PWC.
It took time before I understood the brain dysfunction. At first I felt rejected, especially when my calls were not returned. I was looking at the relationship from my own perspective. I made a call; I expected a return call.
I was a slow learner, but eventually, I came to understand when my friend would say she couldn't process information. Her brain had effectively shut down and she knew what she was talking about. There have been many times she was too ill to speak on the phone.
I learned to respect that and now check with her when we settle into a conversation. Sometimes it will start out fine, and a few minutes into it, she can't follow all the details and will tell me she "can't compute."
I have learned this is part of the process of the illness and no longer take it personally. I have also learned to listen to her and realize that as much as I may need to talk, I will wear her out and she will not hear anything. She will call me when she has the energy. Our friendship is not a one-way street, but a crooked road I have learned to negotiate.
Navigating the crooked road
Over time, I have come to understand the language of CFIDS. Everything seems to be measured in energy units. When I tell my friend of how many miles I have walked to get somewhere, she is exhausted just relating to it. I would suggest that others be sensitive to CFIDS lifestyles and the need for flexibility.
PWCs do not always know when they wake up what the day will hold for them. Their lifestyle has been dramatically affected, if they have a life at all. I have worked with cancer patients, and I see them doing better than the CFIDS patients I know. Still, while this illness may put limitations on my friend, our honest communication has not diminished our friendship, or the essence of her.
To be a friend, I call regularly. I understand that if I get the answering machine, my friend can either be out, or out of it. Our mutual understanding is that she doesn't have to feel pressured into returning my calls, and I want her to know I call to check in so she knows someone cares.
Be a friend to a CFIDS patient. It is worth the work. It takes flexibility, understanding, and patience, but it is worth it. It is not enough to be willing to help, you must act on that willingness.
These are not dispensable people, but rather people who cannot be dispensed with. The spirit of a person never really leaves them, whatever their physical condition, and if the friendship is built on that and on love, you've got a winner.
- Last Updated: 28 February 2009 28 February 2009
Somebody is thinking of you.
Somebody is caring about you.
Somebody is very proud of you.
Somebody misses you.
Somebody wants to talk to you.
Somebody wants to be with you.
Somebody hopes you are not in trouble.
Somebody is thankful for the support you have provided.
Somebody wants to hold your hand.
Somebody hopes everything turns out all right.
Somebody wants you to be happy.
Somebody wants you to find him/her.
Somebody wants to give you a gift.
Somebody thinks you ARE a gift.
Somebody admires your strength.
Somebody wants to give you a hug.
Somebody is thinking of you and smiling.
Somebody wants to protect you.
Somebody can't wait to see you.
Somebody loves you for who you are.
Somebody treasures your spirit.
Somebody is glad that you are their friend.
Somebody wants to get to know you better.
Somebody wants to be near you.
Somebody wants you to know they are there for you.
Somebody wants to share their dreams with you.
Somebody is alive because of you.
Somebody needs your support.
Somebody will cry when they read this.
Somebody needs you to have faith in them.
Somebody trusts you.
Somebody hears a song that reminds them of you.
Somebody would do anything for you.
Postscript: Reading the above may bring many "somebodies" to mind—friends and family who have helped you, and those whom you have helped. But if you're feeling particularly isolated or sick today, you may not know right now who those somebodies or somebody might be. Rest assured that, for each of us, there IS a somebody thinking of us and wishing us well—even if you don't know at this moment who that somebody is.
(Source: Several Internet newsletters; author unknown)
- 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.
More Articles ...
Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.