So,
I’ve been trying to put into words what this disease is to me. What it is like
living with this illness and how it has affected my life on a daily basis,
mentally, emotionally, relationship wise, and, of course, physically. I will
not attempt to explain the medical definition of this disease or what it is
technically doing to me. This is what living with it is like.
I
know it has changed me and continues to do so. Living with chronic pain is
something only other chronic pain sufferers can truly understand. It’s a misery
that makes you hard, angry, mean, and I feel like I come across as unapproachable. Jaded doesn’t even begin
to touch on it. You develop such a misanthropic attitude because you truly do
not want anyone to be around you and it is so rare that someone genuinely
comprehends what you’re going through.
It’s
a daily pain. The best way I can find to describe the pain is this: if feels like
my skeleton, muscles, tendons, and organs are all on a slow boil inside of me;
slowly burning away into nothingness. Meanwhile someone is continuously
pressing the entirety of my epidermis onto barbed wire. It feels like I’m being
continuously tortured in some sort of medieval way. It’s constant. Constant.
I
want to have energy. I want to go out. I want to be functional. I look
completely fine and yet I’m suffering.
Along
with the pain comes the intense fear. The fear that at any moment whichever organ
is chosen next by your overactive immune system will fail. At any time that
could be it. They’ve already removed all of my disposable organs, because,
luckily, they were destroyed first. What will be next? And will this pain ever
end?
It
ruins relationships and makes people think you do not care about them. I have
no patience for the unimportant. I don’t have the energy or strength for small
talk or the normal dating lifestyle. When it is bad I cannot even be hugged
because the pressure on my skin is agony. Cuddling is not something comforting
to me. If it isn’t pain that it brings, the heat becomes too much for my body
to bear. Often I cannot even stand as much as a sheet covering me because any
pressure, touch, etc sends shock waves of pain through my body. Sunlight makes
it worse as does florescent lighting.
Then
there is the question of whether or not I will ever be able to conceive. I’d
love to have children sometime, but then again, do I dare? And with the fact
that this disease is hereditary and could easily be passed on to my children,
could I do that to them? I wouldn’t wish this disease on anyone. And I don’t
think I could handle it if I knew that I had passed this sort of torture onto
someone whom I love.
Mentally
it is taxing. Without my intelligence I would feel like nothing. My body
doesn’t work correctly, it makes me emotionally hardened and unavailable. My
brain is my salvation. My brain and music. And more often than not, anymore,
it’s only listening to music. When the lupus is really bad I don’t have the
strength in my hands to play my guitar. That fact hurts me more than anything
else.
Then...let’s
talk about not having insurance...they (the docs) were keeping me on a regiment
of strong painkillers, steroids, and beta blockers. Now there is nothing.
Nothing that even takes the edge off. Nothing OTC, at least.
It
takes your energy, your life force, your happiness, your desire to be happy,
your appetite, your patience, your willingness to listen to bullshit, and your
ability to sympathize. You turn people away because you know, in the end; you
cannot be the person they think you are. You feel like you don’t deserve to be
happy, or deserve for anyone to actually care about you or want to be with you.
It’s
struggle. It’s misery. It’s pain. It breaks you apart. I know, for I am broken.
It’s
hard to remain positive and look forward to the future when each day is a
battle.
This
was just a practice in self-reflection and some sort of attempt to help people
understand what living with lupus is like. Thank you for reading.
© 2013 Kara Nelson
Very insightful...thanks for sharing Kara
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