I have decided not to fight anymore.
The moment I was diagnosed, I made the decision to fight. It was a great
decision at the time and that positivity has gotten me much further than I ever
believed possible. I simply wasn't going to accept anything less than
what I knew I deserved. Today I came across the above article and it got
me to thinking how utterly exhausting it has been to fight every second of
every day. It has been a continuous, bloody war against my selfish mind,
failing body, unfortunate diagnosis, and all the arrogant doctors.
Reading this article I was both surprised and unnerved by my answers.
I have come so far in these past 20 months but I still have a long way to
go. I no longer want to be alive with gastroparesis and dysautonomia, I
want to live with them.
1. You’re Not
Living with a Chronic Illness if You’re Hunting For the “Why” Full Time
I have struggled deeply with this. Being labeled
"idiopathic" is hard for anyone, much less me; a factually minded and
medically obsessed “Curious George.” When I was first diagnosed I spent hours
researching possible causes. Here's what I have narrowed it down to:
either this GP is from my terrible eating habits as a child, is genetic, is
from a major head injury that occurred 7 years ago, or is post viral.
Here's the problem: none of these can be proven, so I am left to
speculate. As I have learned, all things get easier with time and
this is no exception. While every now and then I will come across
something that sparks my interest and makes me think "hmm...maybe..?"
I have backed off quite a bit and have learned how to accept and live with the
unknown.
2. You Are Not Living with Chronic Illness If You’re Not
Working
I honestly thought I'd never work a real job again.
When I was still feeding tube dependent, I was a nanny.
That was not a good time or a good job for me to be working as it
required an insane amount energy. My next nannying job was much more
entertaining; I loved the kids and it made it so much easier to go to
"work" every day knowing I
would get to hang out with my favorite munchkins. However, kids
take a lot out of you and I still did not have a lot to give. As time has
gone on, I have gotten stronger and am planning on yet another nannying job
this summer. When I am not working a scheduled time with the sweet
Laura-Grace, I am helping out here and there at church for a few extra
bucks. The cash has been helpful for doctors and medications, but what
working has really done for me is give me back a sense of pride; a sense of
"I can do anything."
3. You’re Not Living with Chronic Illness if You’re Hating
Yourself
I don't know if you could say I ever hated myself. I have
hated my situation, I've hated my disease, my doctors, my life; but not myself.
I think deep down I have always known that I did nothing to deserve this, and
it isn't who I am; it is just something that has happened to me.
4. You’re Not Living with Chronic Illness if You’re
“Fighting” It
Now here's where it gets tricky. For the longest time I
believed fighting was the way to go. Fight to stay positive, fight to get
better, fight to be happier; when in reality, fighting makes your sicker and
sadder. I will say this: I fought like hell when I needed to. When I was
in desperate need of a little weight, I fought to gain it. I fought
for the attention of my doctors and for the right to be treated with respect.
I have also fought food every day. My mind wants this but my body knows
that it is a bad idea. I like how the author above compares chronic illness
to a cancer fight. Don't get me wrong, cancer is a truly horrible and
ugly thing, but if you can fight, you may win. If you fight chronic
illness, you will not only lose the battle, you will lose yourself. It is
insane to try to fight a battle that will never end. I am still working on this
one but from this moment on, I plan to cope with and manage my disorders, not
fight tooth and nail against them.
5. You’re
Not Living with Chronic Illness if You Are Not Moving
Lastly, let’s talk about movement.
I have made some headway on this one. For one, I have physically started
moving again. While I am no where near where I used to be or where I want
to be concerning my fitness level, I can now walk around the block, run a few
slow miles, and lift weights. This is huge progress compared to the one
flight of stairs a day I could handle only a few months ago. As for
metaphorical moving, I have done a lot of that as well. Most of
my friends and family have seen and commented on my extreme spiritual and
personal growth. I have become a new person. I see the world in a
different way and the things that would have gotten under my skin two years
ago, don’t hold a candle to the things that can bother me now. It
takes a lot to shake me. I have become fiercely independent and have
grown more in these last two years than anyone I have ever known.
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