This article was written in response to a letter to The
Lupus Chronicle from a woman who's husband had been diagnosed with lupus.
She was looking for advise and wondering if there were other such rare
animals as her husband out there.
I am a man. I
have Lupus. They finally found out what my problem was about 8 years ago. I
was a construction worker all my life. I
worked
in the rain enough times, and said all the right things to all the right
people enough times, that I became Manager of Construction of a large
Company.
How did lupus
affect me? It attacked my liver, my kidneys, and my joints, produced extreme
pain, and worst of all, caused a complete loss of strength. I could not put
my socks on. I could not pick my legs up to get in a car. I could not pick
up a coffee pot. I also thought I was losing my mind (in a way I was). Lupus
causes what we call a "fog". I would put car keys in the fridge. I would
feed the dog twice, or not at all. I would go to another room for a very
important reason, only to not know how, when, or why I came to be there.
Even now these things still happen to me.
Having
certified that I am a "Lupie", maybe I can be of assistance to spouses of
Lupus men. (This applies to spouses of Lupus women also.) First let me give
you some "do's and don'ts."
There is no way
you understand what pain and
mental anguish your husband is going through.
He can not tell you, nor does he really want to. He is not exaggerating his
inabilities or his pain. He is not looking for sympathy. Sympathy is what
you look for when you have had two back surgeries and a hemroidectomy.
Believe me, I would gladly suffer through all these threefold than go
through what lupus caused.
More than
anything he is looking for understanding. From you, from his doctor, and
from the unknown. So what is your roll? Help him when he asks. Leave him
alone when he expresses that desire. Never, never, say "let me do it", or
"do you want me to do it". Never ask him "what in the world are you doing?"
when you find him asleep on the commode. Never show your exasperation.
Believe me, he has enough exasperation for the both of you. And most
important, when he snaps your head off, or says something
mean
and spiteful, remember that it is not you, but the unseen wolf he is mad at.
Even though he may not tell you, he needs and loves you more now than you
can possibly imagine.
Now for the patient, there
is good news and bad news. The bad news is there is no cure. There are two
"good news". There is remission and there are medicines that help you live
with the lupus. I have just completed two of the most wonderful years of my
life. I was in remission. Now I am back living from pain to pain to pain.
You can live
with Lupus. An important thing for me was to set a goal and do it. My first
goal was to mow the yard. I did. It took me 2 days to finish what I once did
in 2 hours, but that was OK. Another important thing is knowing when
to stop. Right now, today,
my wife and I will be doing something like building fence, or working with
the cows. I will say " I have to stop now." and I do. It's easier to recover
from exertion than from overexertion. Another important thing for me is a
deep faith in God. But, what may be more important is a sense of humor. You
need to be able to laugh at yourself when you do something ridiculous.
Look at the
bright side. Lupus gave me an deep appreciation and unsatisfiable hunger for
one the greatest, most enjoyable, things on the face of the earth. Hershey
Nuggets.
I have the
following laminated on a card that I carry in my wallet. When the wolf
starts howling more than I think I can stand, I read it.
"WHEN WE WALK
TO THE EDGE OF ALL THE LIGHT WE HAVE, AND WE TAKE A STEP INTO THE DARKNESS
OF THE UNKNOWN, WE MUST
BELIEVE ONE OF TWO THINGS WILL HAPPEN. THERE WILL BE SOMETHING SOLID FOR US
TO STAND ON, OR WE WILL BE TAUGHT HOW TO FLY."
I have been
taught how to fly.