This is where I will be (because I do not know how much blogging I will get in between trips). The green boxes are when I am working and the pink boxes are traveling for various conferences, including Stanford Medicine X, ePatient Connections, and Patient-Centric Clinical Trials.
I will be traveling for about a third of each month in September, October, and November.
Try and keep up! I do not know if I will be able to...
A lot of
us hope to receive compassion and understanding from those we are closest
to.However, most of us feel like we
would never want our loved ones to get sick, and that’s the only way they would
some point, they will experience pain, too, even if it is just acute pain.And it’s how they experience that pain that
is really critical to those of us who deal with chronic illness and chronic
pain on a daily basis.
my BF had back pain.He was laid up with
an ice pack and it hurt him to move.I
tried to be supportive to him because he’s supportive to me when I’m in pain.
was more than that.
He said, I don’t know how you do it all the time.I knew where this was going, but I
wanted to hear him say it.Being in pain.
one day of intense pain was enough to basically make his life miserable.So multiply that by 24-7-365 and you’re
looking at my life in a nutshell for the past eight years.
have to understand, my BF and I have been dating for three and a half years. And we have pretty much spent every day
together since we met.
that’s what it takes.Not just spending
all that time together, because there are plenty of people that do that and
still don’t have any understanding of what their loved one is going through,
but to really be open and honest with each other.
My BF is
one of the only people that I am really open with about when I am in pain and
where, because most other people just don’t want to hear it or just don’t care.
it’s come to my attention that some people have viewed my behavior as aloof and
standoffish.But when you’re in pain all
the time, it’s hard to be happy and cheerful.I do the best I can to put on a brave face, but it might not come across
that way.And even if it does, I really
have no other choice but to live with and through the pain.Otherwise I would never get out of bed or be
able to do anything.But I get up in the
morning, for the most part, and get myself to where I need to be.And to me, that’s enough.But for some people, that’s not enough.But if they haven’t experienced pain, or they’ve
never extrapolated their pain experience onto someone who lives in pain, they
aren’t going to get it, and they aren’t going to understand that sometimes
doing the best you can is really all you can do.
you’re not in pain anymore, you don’t realize the negative impact that
near-constant pain can have on your life.It wasn’t until I got a very successful cortisone shot in my hip, in
March that, not only myself, but others around me, noticed a distinct
difference in me.People told me I seemed
lighter and happier.And I am.
pain is a drain on our bodies and our brains.It takes everything you have to work through it.And sometimes, no matter how hard you try,
you just can’t.And that’s okay.There’s a time and a place for that.
BF didn’t directly say I feel your pain,
by saying that he didn’t know how I dealt with pain on a daily basis based on
his experience of one day of significant pain, made me feel that progress had
been made.That maybe he’s one step
closer to getting it than almost anyone else in my life.
And it’s important
to have that with the person you spend the majority of your time with.It takes time.And not all people know how to be
empathetic.Some people will never get
pain is more than a number on an arbitrary pain scale.It’s about living life to the best of your
ability in spite of being in pain.Whether
that happens gracefully or not, I don’t think matters.What matters is when someone in your life,
even if only for a day, gets a glimpse into what you are going through.