GUIDE FOR RELATIVES & SIGNIFICANT OTHERS
If
you are a spouse, friend or family member of a Fibromyalgia patient, YOU may
need just as much help as they do. In fact, you could need more. There 'isn't
much written or said about partners or friends of Fibromites these days and it
is quite unfair. When a loved one has a chronic illness, everyone around them
is affected. It changes the dynamics of the home, workplace or wherever this
person is as they try to regain their health. People have mixed feelings about
how to act and what to do or say in these situations. There is no map for the
well spouse or friend to follow.
The
most confusing things to you are probably, "How can anyone be in some level of
pain all the time? How can he/she be tired so much? Why is all this medicine
necessary? What happened to my lively companion? How long will this last? How
do I get him/her lively personality back? Will I ever get the person I love
bark?"
These
are valid questions. To understand and help, you need to read all the Support
Group manuals, newsletters and books available. Go with him/her to support
meetings and doctor appointments. Learn all that can be done for improvement
so "she" (or he) will progress easier and faster. Sometimes you may understand
more than your partner about what really needs to be done. Aggressively
sustain efforts towards symptom control. As the primary care doctor works on
restful sleep and getting all systems back in balance, ask about
pain-management - whether the primary wants to do it or use a specialist.
Dragging things out with appointments every month or two will bring great
frustration. If he/she isn't becoming more comfortable in a week or two, it's
okay to call about another appointment or adjusting medications.
The
right combination of medications and treatments never comes in the first
visit. Each person is different and requires extended care to become more
level. You are presenting the physician with a mystery to unravel so the
closer you work together, the better. Your objective is to not just seek
relief, but also healing and true improvement. After years of over activity
and unrefreshed sleep, the FM person's bodily functions in many areas are
damaged and require proper rest and time to heal. Within the first year, this
can greatly improve, the pain level can drop and your loved one can slowly
begin stretching/walking/water therapy and other activities to strengthen
his/her bodies.
With
even moderate symptom control, you might see proud signs of improvement in
his/her smile and enthusiasm. Of course, the beginning will not be all smiles.
It may be very difficult for both of you until treatment starts working. As
the "manager" you can keep track of what medications didn't work so you won't
lose time repeating them. Also monitor allergies or negative reactions. It
would be very helpful for you to keep a small notebook logging in what is
taken and the time of day to help evaluate how they affect your friend/spouse.
This is a wise practice to continue so there is never doubt about what was
taken when - otherwise you risk over or under taking medications. Either over
sight can cause problems.
Expect
changes in your home life to be part of this process. It's not much different
than living with a diabetic, caring for someone with a broken leg or
recovering from a serious surgery. Your friend needs help in recovering and
becoming functional again. The only difference is that this condition is
chronic and some of the lifestyle changes taking place may be permanent.
Organizing things differently is a small price to pay for regaining the health
and pleasure of being with the person you love again.
Some
things will have to change to keep your partner doing well after adjusting to
FM. The first thing to handle is reorganization of the physical jobs at home
or work, shopping, cooking, laundry and even entertaining at home. Emotionally
an FM person will want to maintain the same standards. However, it must be
done differently through assigning tasks to other family members or bringing
in help. A hard day of cleaning or housework can set an FM person back
tremendously! By lightening the physical load of vacuuming or scrubbing,
he/she can retain enough strength to be an enjoyable companion again. Your
pleasant relationship and fun times together are far more important than any
household chore! They will learn their limits quickly and know when to stop.
Pacing activity and using energy wisely allows them to maintain physical and
emotional stability. Like a bank account, they have a certain amount to work
with and must spend it wisely. Before going out, give them the chance to rest
for a half hour so they can last longer having time with you. Also, realize
that mornings are not always the best time of day for an FM person. Some need
a couple hours to feel "human" and face the world! Planning activities ahead
will be a great help.
Anticipate
that both of you will have "off days" when you just don't feel like dealing
with FM and he/she may not feel very sociable either. You are both coping with
lifestyle changes that are difficult. The well spouse or friend can suffer
just as seriously as the FM patient. Both are experiencing a sense of loss for
the way things used to be and grieving for these losses. This natural
emotional reaction can be expected and dealt with through truthful talking or
counseling. Honest communication lines must stay open to survive this
transition period. Realistically neither party can "fix" the other and this
should not be expected. BOTH really need to be heard and understood. There is
a small inexpensive book available called, The Grief Recovery Handbook by John
W. James and Russell Friedman. It is very helpful to couples dealing with any
problem because it explains the process of working through life problems
involving change or loss.
Another
helpful practice is to "forgive, forgive, and forgive". Under stress, we all
say and do things we don't mean. Sometimes it's easier to realize you are both
struggling and to not have such high expectations of one another. Then when
something goes right, it is greatly appreciated. Also, do not let the label of
FM define your personality. Focus on who you really are inside, the people you
love and living as fully as possible
Something for the Significant Others
Who Still Arn't Sure Fibromyalgia or Chronic Fatigue Syndromes Exist.
It
is important to offer support and understanding for those with FM and CFS.
Researchers are doing much research on these conditions but they have not yet
found out what causes these conditions plus many physicians do not know much
about either conditions. In addition many believe these conditions do mot exist
and sufferers of these conditions are hypochondriac and their problems are "all
in their heads".
Actually
people suffering from stomach ulcers were once thought to be from too much
stress, now medical scientists have discovered that a bacteria causes the
ulcers. Before treatment involved decreasing stress now it involves an
antibiotic. Researchers are beginning to look at the central nervous system as a
possible problem area. Some suspect an abnormality of the parasympathetic and
sympathetic nervous system abnormality. (I believe it's an over activation of
the fight or flight response. The nervous system is always on high alert until
it starts to develop the abnormalities seen in FM and CFS).
Therefore
people with FM and CFS have a physical condition and just like any medical
condition it effects the whole person. Medical conditions effect the person
physically, emotionally, psychologically, spiritually and socially. Think about
the last time you had a really bad case of the flu or any other medical
condition which caused you to take medication which between the medication and
sickness you just slept the entire day away. This is how people with fm and cfs
often feel. However as with any chronic condition people learn to cope,
compensate and live with it. Some people learn to live a full life to their
fullest potential and some give into depression and basically give up living.
Those
who give up actually need more intensive help and support to learn to live and
cope with their condition. They may need professional psychological help as well
as pain management training. However with any great loss (they lost their
health) there is a natural grief process they may experience. This includes
denial, anger, depression and acceptance.
