After Lymphedema Perspectives
Early in my relationship
with lymphedema, I realized that I would have to keep my perspective. I could not ignore lymphedema but it was
equally important that it not dominate my life.
That, as many things are, is easier said than done. Everything that had been my life was affected
so how could lymphedema not dominate my life?
During the first months of dealing with lymphedema, I was in pain and my
ability to use my right hand was extremely limited. I could do practically nothing.
Things had to
change.
The definition
of insanity; if you continue to do the same things, you cannot not expect
different results. While I hold that to
be true, and I certainly believed it when lymphedema struck me, it isn’t
exactly clear what a person does instead of the same thing they’ve done in the
past. What exactly am I to do? I had to find the answers to that.
One of the
hardest things during my initial adjustment period was learning what I could do
and what would create difficulties. It
was trial and error, with the errors producing significant pain and potential
long term damage. My bullheadedness
wasn’t the best ally, and I made some mistakes.
I was in a hurry to get on with my life.
I was always pushing to the edge of reasonable activities and often
overdoing it.
It was a dark
time when my therapist gave me a splint to put my hand in and the explicit
order to ‘do nothing’. If this was going
to be my future, I really wasn’t going to adjust. Luckily the rest gave my body a chance to
recover. I know now that I was going to
return to an almost normal life, but at the time the future looked grim.
Once I got
through the total rest assignment, I still had to figure out what my life would
look like. What could I do? Again, I returned to my normal duties with an
eye to pacing and limiting the damage to my arm. That still left a big hole in
every day. I needed time filling and
activities and I needed a purposeful occupation. I didn’t have a clue what that would be
beyond keeping my lymphedema managed and I didn’t yet know how to do that.
It seemed what I
was doing was not good, for firstly I aimed to do something different. I would get different results if I did
something different. It wouldn’t
necessarily be the ‘right’ action but I would be able to figure out what worked
and what didn’t, because either it worked or it didn’t. I realize that this is about as basic as you
can get, but I needed that basic, basic, truth to be hammered in. I might give lip service to ‘knowing’ what to
do, but since I wasn’t doing it so I didn’t know a damn thing. I just knew that I had to do things
differently because what I was doing based on my know-it-all-attitude. That wasn’t working.
Simple. No one was waving a map in my face. I had the stop sign. Stop this now, my body had spoken. Lymphedema.
Easy does it was
the attitude that I had to develop.
However, in the past I had been an all or nothing worker. The signal for housework, as an example, was
the point where I became disgusted with things and then I would housekeep
binge.
Pacing is still
a problem for me, but I have gotten better.
I preferred all-day-get-the-job- done marathons to short spurts of
anything. That had to change. I had to stop being the hare and start being
the tortious on a racetrack that was no an obstacle course. But I still wanted to be in the race.
Early days, I
kept things afloat as best I could, but mainly in respect to my mental
well-being, rather than any white glove house inspection. My desire to go forward with a normal life,
even if it was vastly different than my old life, served me well. Okay.
So my bullheadedness did help.
“Since it was my right hand and arm that was
affected and I am right handed, immediately I was cut off from a vast number of
my normal activities.”
Adaptations were
necessary in both my physical and emotional world. It helped to remember that I had certain
pastimes and activities fade out of my life in the past. I had chosen those changes while these
restrictions were forced upon me, but the end result was the same. It helped to realize that everyone had
something they couldn’t do.
I also realized
that I could no longer do everything that appealed to me. I had to choose. I was limited by lymphedema, something that
seemed a handicap until I thought of it differently. My limitations meant that I had gained
focus. Lymphedema had gifted me with
this.
My left hand got
pressed into service but it was inept and needed training. I garnered a few tips from material
pertaining to amputees who were managing their world with one hand, but mostly
I applied my own ideas.
Could I keep my
house clean? I swept with my vacuum
cleaner that I manipulated with my left arm.
I learned new methods in the kitchen and I set aside fussy recipes. I managed.
I told myself that my ‘job’ at the moment was to do everything I could
to manage my lymphedema and to adjust to my new life.
Writing is the
one thing that has endured as a source of comfort for me. Yet the physical act of writing was
challenging. There were many components
to this. Lymphedema and fine motor
skills are not good partners, so my pen and paper method was not a good
idea. It takes two hands, normally to
type. But I would continue to write as
this was an activity that I loved. I
spent time each evening teaching my left hand to write, beginning with large
figure eights and working my way to writing legibly and within the lines. I learned to type with one hand, to make
notes with my non-dominant hand and to go at composing paragraphs in five
minute segments when rest was necessary.
It wasn’t pretty but writing is something that I would fight to keep in
my life. I didn’t know what my writing
would look like but still I chose to be as productive as possible with my
writing.
I left hand
operated my new camera as well. It was
lightweight and I could hold it upside down for my left hand to push the
shutter button. My camera was a new
hobby’ one that helped me get more exercise and gave me an outlet for my
creativity.
I found things
that I could do and I found how I should think.
I chose to be grateful that I had this life to live. I certainly gained optimism as I went
along. It helped that I was making
physical progress with the lymphedema condition, reducing the amount of fluids
being retained with a combination of daily bandaging, weight loss and
exercise. My weight loss efforts are
described in the chapter – the Weight of the Weight. Why my excess weight aggravated my health
will be explained as well.
“I chose to be as healthy as possible with my
lifestyle- accepting the reality of lymphedema without grieving or become a
victim.”
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