iPain Living Magazine — 39
help give me a quality of life that I
otherwise wouldn’t have. In the
early stages of diagnosis and treatment
I was so busy trying to figure
everything out, that I really didn’t
stop to think about the things that
were within my control. Things
that I could practice or put into
place (that’s the self-care part), that
could not only help me manage my
disease but improve my overall
health.
Desperate for answers, my care
team and I turned to various techniques
associated with self-care in
order to try and ease the debilitating
pain and flare ups brought on by
CRPS. This would also help me
with my mental health and living
day to day with a rare disease. If I
was going to manage this disease
effectively, and maximize my quality
of life then I needed to get really
serious about caring for myself.
This meant developing a plan that I
could try and follow to the best of
my abilities. One that centers on
five types of self-care: physical,
emotional, psychological, spiritual,
and professional care. With the help
of the staff on my care team we
started to look at these five areas,
trying to build aspects of each into
my daily routine.
Fortunately some were already
there. These haven’t been mind
blowing changes but rather simple
changes that for the most part only
involve changes in lifestyle. Ones
that I can honestly say have made a
huge difference in how I feel and
how I’m managing my CRPS
symptoms. I’m not going to lie
practicing self-care is hard work. It
takes commitment and discipline if
you want to see the best possible
results. Something that isn’t always
easy when you’re battling a chronic
illness.
When it comes to self-care and
chronic illness, I think the single
most important piece of advice I
can give is listen to what your body
is trying to tell you. How many
times have I heard someone say “I
think my bodies trying to tell me
something”? Do we ever seem to
stop and listen to that voice inside?
I think the majority of us living
with chronic illness would say not
often enough. I might be wrong but
I think we tend to put our own personal
care as an afterthought far too
often.
When you’re at the point however
where you have no treatment plan
and all you can rely on is listening
to your body and treating through
self-care methods suddenly everything
becomes very real, very fast!
There was no choice but to make it
a priority.
One of the first changes I made was
to find a way to reduce stress. The
chronic pain that CRPS causes is
neuropathic pain and it gets worse as
the nervous system becomes more
stressed. Not to mention life in general
brings on stress! So this can be a
big challenge. In order to reduce my
stress level, I spend an hour of what
I like to call “me time” at the beginning
and end of every day. I spend
this time on my own doing something
that brings me joy and happiness.
That might be something as
simple as getting lost in reading a
book, or sitting on my front deck
overlooking the lake with an early
morning coffee. My family is beyond
understanding and knows that
this is an essential part of my day.
They know that if I’m going to function
at my best then I need to prepare
my body at the beginning and end of
each day.
I also incorporate biofeedback into
every day (usually the beginning and
end of each day) which consists of
breathing exercises that are designed
to reduce stress. This calms my
nervous system and helps with taking
on any additional stress. This has
been a big part in helping me reduce
the number of flare ups that my
CRPS causes. Another change that I
have made in my day is finding time
for a nap. Due to my chronic pain
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