ProHealth health Vitamin and Natural Supplement Store and Health
Log In  |  My Account  |  View Cart  View Your ProHealth Vitamin and Supplement Shopping Cart
800-366-6056  |  Contact Us  |  Help

|
|
|
|

Trending News

Gut Bacteria, Artificial Sweeteners and Glucose Intolerance

Culprits of Autism Identified: Toxins, Gut Bacteria, Nutritional Deficiencies, and Vaccines Made wit...

Vitamin E intake critical during 'the first 1,000 days'

Turmeric compound boosts regeneration of brain stem cells

Lower risk of mortality over thirteen year period in association with higher levels of vitamin D

Reverse Mitochondrial Damage

Use of Broad-Spectrum Antibiotics Before Age 2 Associated with Obesity Risk

VIDEO: Beautiful Clouds - Relaxation and Meditation

CoQ10: The Longevity Factor

Elevated plasma biomarkers of chronic inflammation in Gulf War illness

 
Print Page
Email Article

Support Networks: Why Chronic Fatigue Syndrome and Fibromyalgia Patients Need Them

  [ 130 votes ]   [ Discuss This Article ]
By Eunice Beck, RN • www.ProHealth.com • April 10, 2002




Dear Friends,

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,


Eunice


-------------------------------------------------------------

I welcome your comments and questions at: copingcorner@prohealthinc.com. 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.
Eunice







Please Discuss This Article:   Post a Comment 



[ Be the first to comment on this article ]




 
Free Chronic Fatigue Syndrome and Fibromyalgia Newsletters
Subscribe to
Our FREE
Newsletter
Subscribe Now!
Receive up-to-date ME/CFS & Fibromyalgia treatment and research news
 Privacy Guaranteed  |  View Archives

Save on Vitamins and Supplements

Featured Products

FibroSleep™ by ProHealth FibroSleep™ by ProHealth
The All-in-One Natural Sleep Aid
Ultra EPA  - Fish Oil Ultra EPA - Fish Oil
Ultra concentrated source of essential fish oils
Vitamin D3 Extreme™ by ProHealth Vitamin D3 Extreme™ by ProHealth
50,000 IU Vitamin D3 - Prescription Strength
Energy NADH™ 12.5mg Energy NADH™ 12.5mg
Improve Energy & Cognitive Function
Mitochondria Ignite™ with NT Factor® Mitochondria Ignite™ with NT Factor®
Reduce Fatigue up to 45%

Natural Remedies

Sunshine Vitamin Has D-lightful Health Benefits Sunshine Vitamin Has D-lightful Health Benefits
VIDEO: Healthy Eating and Fibromyalgia VIDEO: Healthy Eating and Fibromyalgia
Undenatured Type II Collagen - Chicken Soup for Your Joints Undenatured Type II Collagen - Chicken Soup for Your Joints
Are You Obtaining the Proper Enzymes? Are You Obtaining the Proper Enzymes?
The Brain Boosting and Fatigue Fighting B-12 The Brain Boosting and Fatigue Fighting B-12

FIBROMYALGIA RESOURCES
What is Fibromyalgia?
Fibromyalgia 101
Fibromyalgia Symptoms
Fibromyalgia Treatments
| CFS RESOURCES
What is CFS?
ME/CFS 101
ME/CFS Symptoms
ME/CFS Treatments
| FORUMS
Fibromyalgia
ME/CFS
ADVANCED MEDICAL LABS
WHOLESALE  |  AFFILIATES
GUARANTEE
CONTACT US
PRIVACY
RSS
SITE MAP
ProHealth on Facebook  ProHealth on Twitter  ProHealth on Pinterest  ProHealth on Google Plus
Credit Card Processing