Invisible Illness. Visible me!

If you were to see me in the grocery store, you wouldn't even know.  You might pass me on my walk to the bus stop and you will never see it.  That mom in the parking lot coasting on the cart with two smiling boys hanging on for dear life, that's me!  You might laugh but you would have never guessed.  Photos of me and photos I take don't show the whole picture.  We could talk, hold a full on conversation, but you would have no clue. I am one of thousands living with an invisible illness

I have Budd Chiari Syndrome.  A rare liver disease.  Not a day goes by that I am not reminded of it too. The typical response to finding this out, people always say "you don't look sick" or something along the line. That's the deal with invisible illnesses.  Unless you are the one living with it, or are told, you don't see it.

Every morning I wake up, take a deep breath try to convince myself I have the energy to get out of bed.  When I roll out of bed, I cringe.  My body is stiff and that sharp pain in my side is a reminder or the monster living inside of me.  I walk to the bathroom, turn on the light and stare at myself in the mirror.  I ask myself.  Am I pale?  Are my eyes still yellow?  I wipe away the blood that drips from my nose after another nosebleed.  I take a few more deep breaths, wash my face and look again.  I am awake.  There are bags under my eyes after a night of tossing and turning.  The veins in my chest and neck are so dark.  My hair is thinning again.  But the truth is, I don't look sick. Tired, maybe.  Sick, no.

On a typical morning with no appointments, I chase down my morning meds with some ice cold water and something small to eat.  I check my sons backpack and make sure he is dressed and ready.  I have a window of time before I get sick, so off to the bust stop we go.  I pray the bus isn't late because I look forward to talking to the other parents for a bit before I have go home.  By the time I hit the door, I can feel the energy I worked so hard to convince myself I have, draining out of me.  For the next 4 -6 hours I will be running to the bathroom.  My little one wakes up while I am lying on the couch and gives me my morning hugs.  I wonder if I have the energy to be a good enough mom that day.  I make him something to eat and try to get some chores done.  Some days my energy is better than others.

Some days I have the energy to just be what my oldest calls a "regular mom".  We play cars on the rug or we chase each other around acting like ninjas.  Some days we are a lot more low key.  We color or snuggle up and watch a movie.  I make it a goal to do a few exciting activities each week.   An alarm goes off to remind me that its lunch time.  Most days I will make something for Alex only.  I will snack on something small but I am usually still sick so I keep it light.  I hop on the computer for a little bit.  Before I know it, another alarm reminds me its time to head to the bus stop.  Shortly after we get home another alarm tells me to start dinner.   No matter how tired I am, I have to feed my family.  Dinners are kept pretty simple these days.  But food is always on the table.  Sometimes later than usual, but there none the less.  While dinner is cooking I try to pick up the house and freshen up so David isn't to shocked when he gets home!  After dinner its time for baths and bedtime for the boys. I have day/night reversal, insomnia and anxiety all keeping me awake after everyone is sound asleep.  

The hardest days are the ones where I actually have to leave the house.  I recently had to say no to being the team mom for my sons Soccer team because I knew there was just no way I could.  Its hard enough for me to put on a happy face and make it though practice.  I have to mentally and physically prepare myself for my these days.   They are almost as draining as my meds.  Our school schedule is starting to settle in.  Soccer practice Mondays and Wednesdays.  Speech Thursdays and Fridays.  And weekends are spent running all the errands I can't do during the week because I am not allowed to drive.  Its frustrating.  And as much as I dread these days, I look forward to getting out of the house for a little bit.  Even lab work can be exciting!

This is my life.  It is painful and frustrating.  But it is also amazing.   I have the sweetest craziest boys.  They love me unconditionally.  I have a husband who never lets me give in but knows when not to push me.  I have a support system of family and friends who always lift me up on the bad days.  I will fight my illness every day with all I have.  You may not see it, but its there.  My illness is invisible, but I am not!