Walk a Mile

Having Chiari and PTC/IIH is no walk in the park.  Daily live is filled with some level of pain and discomfort.  Today happens to be one of those day.

Woke up knowing it was going to being a bad day - you know the feeling you get when you put your hand on top of a vacuum nozzle?  That's the type of headache I have today.  And I'm annoyed by just about everything, good thing I'm alone today.  Which also annoys me.

Like I said, today is one of those days.

Looking at me though, you wouldn't be able to tell anything is wrong.  I don't have any spots or rashes that would show that I am sick.  When I have a headache, I don't have blood coming out of ears.  When you have a headache, look in the mirror, on the outside you look absolutely fine, except you have a headache.

So when you feel crappy every day, but look absolutely healthy every day, it is easy for our loved ones to forget that we are in pain.  I don't know about you, but I hate focusing on how much pain I'm in.  And I certainly haven't stopped living my life, I still have to go to work, go food shopping, have chores that need to be completed.  Life hasn't stopped.

But there are days where I certainly wished it has stopped.  And those are the days it seems our loved just don't seem to be on the same page as us.  Over Christmas, my family kept egging me on to drink alcohol in the midst of being put on new medication.  As much as I would love to solve my headaches with my old favorite standard Citron and Water, I have a feeling that won't work in the long run.

Obviously I am changing my behavior from that in the past, so of course my family is thrown off.  Friends and family are thrown off when I go from loving large and loud gatherings of people to preferring the company of a small number of close friends because my headache intensity will be less.  At work, I know it's throwing off some of my performance.

No outward symptoms and behavioral changes - no wonder its so hard for others to grasp what is going on.  I have a hard time sometimes.

This sucks.  But it sucks for more than just us.