-FMS Self-Help - Advice to a New Patient

[Guest guest]

This is some of the most important advice we can read for ourselves.

We cannot do the best we can until we forgive ourselves for being sick

and then accept that we have FMS or whatever the diagnosis may be.

God Bless each of you,

elaine

Advice to a New Patient

By Bruce

What are the most important things to remember in coping with Chronic

Fatigue Syndrome or Fibromyalgia? We asked that question of several groups

of people participating in our program. Specifically, we asked them to

imagine that a newly-diagnosed CFIDS or fibromyalgia patient approached them

for advice, asking what three or four things they had found most helpful in

coping with their illness.

Their responses clustered into six themes. About two-thirds of people

mentioned one or more aspects of the following three ideas:

1) Accept Your Illness

Whether you have CFIDS or fibromyalgia, your illness is real, physical, and

long-term. Getting it was not your fault. While your should accept that your

illness is long-term, you should also be hopeful because there is much you

can do to improve your life. Rather than fighting your condition, be

compassionate toward yourself as someone with a serious illness.

As one student said " the single thing that has probably helped me most with

living with my disease is accepting that I have a chronic illness. Since I

started to plan my life around my illness, my life seems to have improved.

For a long time, I was in denial of my disease and lived in hope for the day

it would just go away. My life seems better since I accepted that I have to

adapt to the illness. "

Another student emphasized the challenge of adjusting to loss. She said that

a new patient is likely to go through a grieving process before reaching

acceptance. " We grieve the losses this disease has caused in our lives. Our

lives are drastically changed by our illness. "

2) Live within the Limits of the Illness

Adjusting your activity level to the limits imposed by the illness is one of

the most helpful coping strategies you can use. In our course, we call it

" living within the energy envelope. " The idea is that we have less energy

than before. If we try to do too much, we usually trigger an intensification

of symptoms that forces us to rest. In contrast to living life on this

roller coaster, we can gain some stability if we learn to live within our

limits.

To do this, you need to learn to listen to your body and respect its needs.

Having limited energy imposes the need to simplify and to prioritize. By

pacing yourself (balancing activity with rest) you can gain some control

over your illness and bring stability to your life.

One student summarized the idea of accepting limits by saying she would

advise " setting priorities, really getting down to basics and saying no to

activities that do not fall within our personal agendas. It is essential to

preserve our energies for activities that help us get better. This becomes

most difficult when we hate to disappoint special people in our lives, but

we must remember that if we do one thing, we can't do another. "

Another said that she believes the key to living successfully with chronic

illness is to adapt life to the illness, and not just as a short term

strategy. Looking back, she believes she clung to the idea of getting better

too long. " I really needed to be told, life will not be the same. I needed

to learn to manage my life from that point on, very carefully, much as

diabetics and others with chronic conditions do. "

3) Get Support

Chronic illness can be isolating and demoralizing. Others may not always

understand or sympathize. Having people in your life who acknowledge your

suffering and offer support can be crucial. Seek out support from fellow

patients, who understand because they share your situation. Stay connected

to family and friends to the extent possible, but be realistic in your

expectations. Some people may never understand.

A third to half of those responding mentioned three other themes:

4) Keep a Positive Focus

Though there is as yet no cure for either illness, improvement is a real

possibility. Through your efforts, you can gain some control over your

illness. Regardless of your situation, it is possible to lead a meaningful

life, so value and take care of yourself. In the words of one student: You

have a choice in every situation. You can be defeated by it or learn and

grow from it.

5) Educate Yourself

Many treatments are used for the two illnesses, with new developments

occurring all the time. No cure has been found to date for either illness

and no treatment has proven widely helpful. Seek out information and options

about the illness. Experiment to find what works in your individual

situation.

6) Rest Daily

Integrate regular periods of rest into your day, regardless of how you feel.

(In the course, we call this " pre-emptive resting " or resting as a

preventive measure.) By taking scheduled rests-lying down with your eyes

closed in a quiet place-you may be able to prevent flare-ups or reduce their

intensity. Such rests can help lower symptom levels and increase a sense of

control.

Other themes

Other themes mentioned included getting exercise and avoiding stress. A

surprising result was that only about one person in ten mentioned medical

care as being important to their coping.

Summary

In summary, members of our groups think that the foundation for coping with

CFIDS and fibromyalgia lies in the combination of accepting the long-term

nature of the illnesses, adjusting one's life to live within the limits

imposed by illnesses, and having supportive relationships. They also believe

that a hopeful attitude is both realistic and effective, and that

self-management includes education about the illness and experimentation to

find what works in an individual situation.

http://home.flash.net/~brucepa/artcl_advice.htm