I watched a short video the other
day sponsored by Eli Lilly and the National Rheumatoid Arthritis Society called,
Behind the Smile. It shows Jane, a working mom, managing
through her day while living with arthritis.
As Jane encounters each person in the course of her day, they ask how
she feels and she replies, “I’m fine.” However, in the video, you see behind
the “I’m Fine” and understand the struggles in each part of her day. I really related to this video, especially
today. I’ve been having struggles both
physically and mentally with my AS lately.
It’s really starting to get me down.
Recently, I’ve been pushing through
activities and saying, I’m fine, when I’m not.
Then, when I get home, thrilled to rest, I have a bit of an emotional
breakdown. It takes a lot of emotional
energy to push through activities when you don’t feel well. It’s exhausting to keep a brave smile on my
face when all I want to do is get to the comfort of my home as fast as I
can. So, pushing through activities when
I really shouldn’t be is the source of my sadness and distress.
I was talking with my husband about
all of this. We had gone out for dinner
with friends after I had a busy day.
About half-way through our meal, I really started to feel bad. I was tired, my back and hips were hurting,
and my neck felt very painful, too. But
I just sat there, trying to be as engaged as I could, looking forward to
getting home, taking some meds and going to bed. If you’ve ever seen the gif with Amy Poehler
from Parks and Recreation smiling but the caption reads, “Everything hurts and
I’m dying,”…that was me. We went home, I went straight to bed with a heating
pad and some Tylenol. I felt so
miserable that I couldn’t even talk to my husband. That’s when he truly gets worried about
me.
A few days later, I continued to
share with him how bad I felt at dinner with our friends. He said I should have let him know I wasn’t
feeling well and we could have left.
This is where is gets difficult for me.
I don’t want to be the party pooper but at the same time I need to take
care of myself. I realized from our
conversation that I really need to get better at communicating my needs. True friends will understand this about me.
Some days are more difficult than
others living with AS. I don’t feel like
doing activities sometimes. I have to
ask myself when I want to do something but then decide not to, “Is this AS or
am I depressed?” Most times, the answer
is AS. I realize I’d like to have a fun
day shopping. What stops me from going
is knowing the amount of effort it takes to walk around the mall, try on
clothes, walk back to my car, and then drive home exhausted. Recently, I’ve read there is a link between
AS and depression. That makes a lot of
sense. You’re diagnosed with a disease
you never heard of, your life changes drastically from the way you were
previously living, you try lots of different medications in hopes of returning
to your former self, and you are living with various degrees of pain and stiffness
every day. It is understandable how there
is a link between depression and AS. If I ever answer my question with, “I’m
depressed.” I know to make an
appointment with my doctor to get things checked out.
While I look on the bright side of
most things and my intent of this blog was to have a positive tone about
managing life with a chronic illness, I also feel compelled to tell you some of
the not so nice details of AS. This
week, I’ll be going for my Remicade infusion.
I hope and pray that this will be what I need to get over the hump from
my recent flare and make me feel a little bit better.
