Living in Spite of Your Symptoms

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“Living in Spite of Your Symptoms”
by Cynthia Perkins © 2002

When living with chronic illness or chronic pain it is very
easy to become completely focused on avoiding symptoms,
consumed with symptoms or consumed with the daily challenges
of survival and thus forget to focus on “Living.” It is
also very easy to allow your symptoms or fear of symptoms to
control your life completely.

This is very understandable. Illness and pain can be all
consuming and very frightening, but continuing to live is
exactly what you need to do. Finding a healthy balance
between your limits and living is essential for your mental,
physical and spiritual well-being.

You don’t want to let your illness/pain become your complete
identity and control your life completely. This is very
important so that you don’t lose other important parts of
who you are that enhance your life and so you don’t drown in
the negativity of illness. Yes, being ill is an important
aspect of your identity and worthy of respect and
recognition, but it is not all of who you are. It is a
piece of who you are and your other pieces need to be
respected and recognized as well. You are still a parent, a
partner, an individual, a friend, etc.

Yes, in many cases illness/pain does often dictate our lives
to sometimes an extreme degree, but there are areas where
you can take control for a period of time. You can choose to
participate in life and enjoy life in spite of your
illness/pain. Do not cut yourself off from all life
affirming activities or your life will be lacking in
meaning, purpose and enjoyment. Find alternatives to your
limits.

This does not mean you want to throw caution to the wind and
be wreckless with your health care, but rather you want to
find some balance. You of course don’t’ want to do anything
that will cause severe distress or exacerbate symptoms too
much, but you can pick some activities that are life
affirming that will have a minimal impact on your symptoms.


For example if eating out at a restaurant gives you a
migraine or breathing difficulties, then having a nice
dinner at home with loved ones or a picnic outside is a
great alternative. If riding an exercise bike is too
strenuous and causes symptoms then a nice stroll around the
block or the park will be just as beneficial. If being in
public places is problematic for you then maintaining
relationships by phone or computer will sustain you.

Although we want to be respectful of our limits and learn to
live within them, there may be times when we want to push
ourselves beyond our limits just a little.

If I never did anything because I was in pain or having
fear, then basically I would have no life at all. Much of
my living takes place during great pain and suffering and
fears. I don’t let it stop it me. Yes, there are days
when I say, “I need to lay down and rest today,” or “the
price to pay for this benefit is too high” but there are
also days when I push forward even though I don’t feel like
it and function within the discomfort.

For instance, a few weeks ago I had the makings of a minor
migraine and for some reason, my writing “muse” came alive
during the midst of this. All I wanted to do was lay down,
but instead I took a hot shower, massaged my trigger points
and then let my “muse’s” thoughts flow out on the paper and
thus I now have a new article for my site to edit and
upload. Sometimes I can do some of my best work in the
midst of great pain.

Once when visiting Arizona I was planning a trip to visit
friends in California I hadn’t seen in years, but I was
experiencing a lot of symptoms. I debated whether to go and
decided this was just not something I could pass on
regardless of how I felt. I developed half a migraine on
the trip and the trip was very hard on me, but in the midst
of this I visited my friends, ate Rice Dream ice cream and
took a walk. The next day the headache was gone and I went
to the ocean for the first time in my life and had a
spectacular time. I had another wonderful day visiting my
friends the following day and then went back to Arizona.

I was very happy I had pushed myself beyond my limits. If I
had allowed my pain to control me I would have missed this
incredible opportunity to spend time with friends, have a
wonderful visit to California and enjoy the magic of the
ocean.

Before going to Arizona I was full of fear of making this
trip. I worried about what would I do if my car broke down
on the way and I ended up in the middle of nowhere with no
car and no safe place to live. I worried about all the
millions of symptoms I would have on my way there. A friend
said to me “Cyn, no matter what happens, you will survive.”
I was not so sure that they were right, but I held onto that
and pushed myself beyond my fears and went anyway. Yes, I
had a million symptoms on my way there and endured a great
deal of suffering, but I survived and when I arrived I had
improvement in my health once I hit the dry air, made
several wonderful new MCS friends, enjoyed the most
beautiful landscape and wildlife I have ever seen and found
a lovely community I would like to live in hopefully some
day. If I had allowed my fears to control me I would have
never had this experience.

Sometimes you can be pleasantly surprised to find that the
endorphins released when you become absorbed in a fulfilling
experience can temporarily relieve your pain. If you can
become completely absorbed in the happiness of the moment
you can transcend your symptoms for a period of time.
Sometimes the benefit you will gain after the symptoms makes
the price worthwhile. But then there are other times when
the best thing you can do for yourself is to rest and
pamper. The key here is balance so that you can continue to
have a happy, enjoyable and fulfilling life.

Of course we want to be reasonable and not push ourselves
too much, too frequently. We certainly would not want to
push ourselves to attend a function in a building that has
recently been pesticided or newly remodeled, but we can
possibly attend an outdoor function where we may have some
slight itching or a mild headache. It can be very tricky
to find a healthy balance. Weigh out the benefits versus the
suffering and participate in those activities that have the
most benefit and the least amount of suffering and the least
amount of negative impact on your health.

My point here is that life is short. Don’t let your fear of
your symptoms prevent you from living. Don’t let your pain
control you life completely. Remember what’s most important
in life (love, family, friends and spiritual fulfillment)
Make love when you have a headache, read a book with your
child when you are in great pain. Write that book even
though you can barely stand up. Take a walk or go to the
ocean even though you are aching tremendously. Take risks
and allow yourself to live in spite of your limits while at
the same time honoring your limits.

Being healthy does not mean being free of illness. It means
being as complete as possible and living life as fully as
possible within the limits that you are faced with.