Support Networks: Why Chronic Fatigue Syndrome and Fibromyalgia Patients Need Them
By Eunice Beck, RN •
April 10, 2002
I’ll never forget the wonderful laugh I got from my CFIDS Doctor the second time I saw him. He asked how I was doing. My answer was "I'm feeling enough better to be frustrated by the things I'm not well enough to do." And that pretty well describes how I'm feeling right now.
The last time I saw my present doctor, we made a couple of changes in my medications. I think that's why I'm feeling somewhat better, but with this disease, who knows for sure. Most nights, I am sleeping better, and longer. I feel less tired, but still tire easily when doing any physical activity. Some of my other symptoms; headaches, frequent bouts with IBS, seem to have improved somewhat as well, although my ache and pain level is about the same.
What this slight improvement has done is give me the energy to be aware of things I need or want to do that I was too tired to notice or consider before. I am getting a few of those things done, but not as many as I’d like because I still tire so easily. I can't believe I'm complaining about improvement! Or maybe my complaint is not enough improvement. I suspect all of my readers understand exactly how I'm feeling.
One of the things this improvement has made me a ware of is how isolating this disease is. When we are feeling our worst, we don't have the energy or interest to pay attention to much besides our physical selves. It's when we improve somewhat that we become aware of what this disease does to us, socially and emotionally.
I have always been very much a "people person." I loved the patient interaction portion of my nursing career. Now I am at home most of the time. Fortunately, I have my spouse and my cats for company, but the level of social contact is certainly decreased. I do interact with the world via my computer, but have far less energy for, or interest in conversations with others. There are some friends I stay in touch with, although frequently the total of my communication is forwarding some joke or other message that tells them I am still around. I'm on some support lists, and read most of the messages, but seldom post myself.
I can only imagine how lonely this disease enforced isolation must be for someone who lives alone. In addition to which, that person has to expend more energy than I do shopping, cooking etc., because I have the support of my spouse. Many of us are too sick to do much more than get through each day. But meeting those human needs of interaction with others plays a part in our getting better. Is it any wonder that many of us are depressed as a result of what this disease does to our lives?
Someone in one of my email groups used a good analogy the other day. He referred to the California cheese commercial where the Midwestern cow is trying to explain how great it is to be able to graze without having deal with snow. The California cows obviously don't understand what snow is. I think that explains very well what it is like to try to define this disease to anyone. When it is so difficult for others to understand, I know I tend to not try to explain. I just withdraw, which increases the isolation.
It is worth the effort to try to educate family and close friends because emotional/social support is so important. It might be helpful to seek out a local "face to face" support group. Even the support groups on line can be good, knowing you are understood, and letting you participate when you feel up to it, and just "lurk" when you don't. The chat rooms and message boards at ImmuneSupport.com are always available.
Maintaining friendships is difficult because I am not the same person. I have far less stamina to spend on activities with friends, less energy to laugh and have fun. So I am less able to work at the friendship. I have lost part of me, and so have my friends. Some of my friends will remain, and continue to be supportive. Others will fade away. And I will make new friends, but fewer than would have been involved in my "old" life.
A non-FM friend just suggested that a group of us organize a camping/hiking trip. I know I would have a great time with this group, but also know that this type of activity is out of the question for me. I'm jealous.
I am seeing some improvement, but not enough to have my life back. That makes the improvement somewhat bittersweet. While it's good to be able to see beyond my physical world again, I can also feel the anger and frustration, anew, about what this disease has taken away from me. I also know that I am not as sick as many of my readers, and that I have more support than many of them do. In that way, I'm lucky.
I'm happy to have the improvement I am seeing, as little as it is. But I want more. I want more for all of us who have this DD. There is a lot of research out there, so we can hope for improved physical treatment options. But it is up to each of us to maintain our support system, whether it be folks with the disease or other friends or family. If we have energy beyond our physical needs, human contact is where it needs to be focused. We need TLC, and have a need to reciprocate. I appreciate all of you, the kind words you send my way, and the things you share. I think of you, my readers, and hope that you, too, are seeing some improvement. Take care and be well.
Yours in Health,
I welcome your comments and questions at: firstname.lastname@example.org. My
articles and email responses are not being offered as those of a health care
provider. The information and opinions included are intended to give you
some information about your disease. It is very important that you empower
yourself with knowledge and participate in your own search for care. Any
advice given is not intended to take the place of advice of your physician
or mental health care provider. Always follow your physician's advice, even
if contradicted by something written here. You and your physician know your
situation far better than I do. Thank you and be well.