For Love and For Pain

Putting my 5-year-old to bed tonight, I kissed her goodnight and she told me to lean down so that she could kiss my head.  She gave me about 15 kisses all over and said "Mom, I'm sorry your head hurts, if it hurts."  Broke.my.heart.  I told her it does, but thanked her for the kisses and told her that it made me feel much better.  She said, "It doesn't make it stop hurting, but it makes you happy, and it's enough to get you through the night and the day, the night and the day?"  (As she's saying this, she's waving her hand back and forth...so grown up, lol.)  So much wisdom in such a tiny body.  This whole thing with me being sick has been really hard on her.  She has a hard time with me not having the energy or not feeling well enough to do things with her, or just being cranky and irritable all the time.  She's also really been challenging me lately, which is something that I am not sure if it is just her personality right now, or if it's her way of coping with what is going on? 

I feel so guilty most days.  I come home from work, where I have to put on a smile and act like everything is fine for 8 hours a day.  Which in and of itself is exhausting.  At that point, I'm so tired, achy, and headachy, that I just have no patience for anyone or anything.  Sometimes I think I compartmentalize the pain while at work, because I know I just HAVE to get through the day.  I notice the pain, but usually I can power through it.  (Then there are days where I am melting out of my chair and the hours just can't pass fast enough.)  When I get home all bets are off.  Everything that was put off during the day hits me at once.  I walk in the door and my poor family gets nothing but Oscar the Grouch out of me.  In the moment, I feel so angry at them.  Either they're too loud or they won't leave me alone or who knows what.  And they should just KNOW better.  They should KNOW to be quiet and KNOW to stay away from me because I'm cranky.  (YEAH RIGHT!  I've been gone all day, they want to see me!!)  Then before I know it the kids go to bed and I have 5 minutes to myself and I think what am I doing wasting this precious time with them?  They're only going to be young once and the days are flying by.  I wonder what they must think of me as a mother?  Do they think "I wish my mom didn't yell so much"?  "I wish my mom wasn't sick all the time"?  "I wish my mom would play with me more"?  I have so much guilt.  Not to sound cliche, but this illness causes such pain in my head, and the...well, let's call them "side effects," cause pain in my heart.  My family is the collateral damage of all of this, and they are suffering too.  Moments like tonight, tucking my sweet little girl into bed, remind me that my family may want to put me out of my misery some days (HA!), but they do still love me and realize that I'm suffering.

Now I do want to say, I don't mean for this to sound overly dramatic.  I don't walk around with a giant cloud over my head wallowing in self pity.  I have good days and bad days, and sometimes good stretches...or bad ones.  It's not like I am completely unable to enjoy life or laugh or have fun.  The thing is just that I never really feel totally like myself.  I can't explain why, but I have become even more shy and self conscious than I already was.  Then people point out to me that I don't seem like myself or that I look uncomfortable, or I must not feel good...and I feel even more uncomfortable.  The most ironic thing about this is that I have an INVISIBLE illness.  Anyone who doesn't know me has no clue that there is anything wrong with me.  So what is there to be worried about??  I think part of it is my vision, I have trouble focusing on people's faces now without going cross-eyed, which is extremely embarrassing to me and causes me to avoid making eye contact whenever possible.  The problem is that I am just too much inside my own head, and let's face it, there is no room for anything extra in there!  Whatever breaking out of my shell I have done over the past 10 years or so, I've picked up the pieces and glued them back together and now I'm cowering at the bottom of my shell in the fetal position, hoping that no one notices me.  LOL 

I want to thank everyone who expressed interest in reading my blog.  It means a lot to me that people care enough to read all of my rambling and to know the details of what I am dealing with.  PTC/IIH is such a rare and unknown illness, I'm glad to know that I can help spread awareness of it.  Thanks for reading!  :-)