what I wish people knew about me.

DROWNING

I think I have come to place in my life where I absolutely have no idea where to go from here...being a social worker, I argue with myself-a lot.  This is definitely a time where I wish I did not have the gift of seeing things from both sides, or all sides. in this case. All I have managed to do is confuse myself and get mired in a rut so friggen deep it echos when I call for help.

If you look in from the outside, we a cute, happy, family.  Hubby works hard all day, and comes home to play chauffeur, grocery-getter, and housemaid.  Dear Daughter is in grade 11 and has tons of homework (that looks like Facebook if you glance at her computer screen) and she has to start making some decisions about co-op, college, jobs...Dear Son in in grade 10, and he hates school with a vengeance.  His saving grace is that when he lets all the school work slide, he does, in the end, come out on the other side with his work done and passes the course.  Both kids have gone through their share of skipping and getting caught, but they learned from it.  I think they are pretty cool most of the time...

So why am I drowning?  Because my house is a mess, no one will do chores-but they will argue long and hard with you, and be able to come up with the most inventive reasons as to why things are not done..."I wasn't home", "No one else did it?  Why do you always only as ME?", "Home(Facebook)work!", "The cat next door farted"...and on it goes.  And I usually give them my 'no-expression' face and tell them that it needs to-and must be done, that as a family we all have to pitch in and work as a team....blah, blah and bla-ah.  

Teenagers are a tough crowd.  They heckle back.  I'm good until I hear, "Why can't dad do it?"  That's when I go from in control of my emotions woman, to the type of woman who wants to give 'You entitled little buggars' speeches.  Sometimes I do; which is not indicative to fostering a feel-good session of happy house cleaning.  Or of anything else for that matter.  I think that we have set this pattern and we are all running like little hamsters in a wheel trying to find freedom.  

Dear daughter wants to keep her Blackberry with the bells and whistles...she has no job.  We agreed on what she has to do around here on top of normal stuff to earn her phone...ya, sounded good, but really, to pile more crap on top of crap that never gets done anyway is one big pile of, well, you know what it is.  Dear son sits back and observes all of the above and says that since he doesn't do anything around the house, he will not ask for money or things.  Way to encourage that lazy-ass phase, mom.  At least he works all summer.  

So far this sounds like fairly normal teenage/parenting stuff we all go through.  What brought on this need to post this hidden deep within my blog?  I dunno.  Could be my desire for at least one or two to find it and offer consoling words or the kick in the ass I need, or the fact that I spent 40 minutes frozen a my kitchen sink because my neck and shoulders went into spasms while I was doing the dishes that were sitting there for 2 days...Why were they there that long?  Because I chose to tackle the bathroom, cook dinner, do laundry, and volunteer at a group yesterday instead of doing them.  Why didn't anyone else see them and do them?  I DO NOT KNOW...and I am sick of hearing myself ask for help that falls on deaf ears.  I even pulled the, "um, by the way, you know I'm sick and need help, right?  You have been introduced to me, right?" sarcasm.  If I mention it to hubby, he defends why he didn't do them/it, and pounces on the kids for atrocities done in the past and some they just might be thinking about in the future...but still NOTHING gets done, and everyone retreats into their corners until the next round.  So, I am drowning.  And need to vent and yell and I want my mommy.

Speaking of mommies, my mother in law is an angel.  She would be here in a heartbeat if I asked-she cooks us supper every Thursday night, and dad drops it off at the door.  She is the best-I am blessed to have her.  I just feel awful (read: ashamed) asking her to come here to help me clean because her son is so overwhelmed with working all day and helping me after work, and her grand kids are lazy.  That hurts her too.

Thank you for listening, any suggestions or wonderfully hilarious jokes to make me forget my whining would be appreciated.

What I wish people knew about me

It has been said by many people that I am a very good actress. “But You Look Great” seemed to be all I heard. Is this a good thing? Sometimes it is an appropriate thing to say ...Most times I take it for the compliment it is, all the while smiling, knowing exactly what it doesn’t mean. It simply means I am not the woman I was before. I “act” like a healthy person the best I can. I take on this role as if I will someday win an award for best portrayal of a healthy person. The downside is that there is no trophy, there is no prize, I just end up alone with my feelings and everything I have kept inside. I act as if I don’t care- but I do. I act as if I am not scared, but I am.

Most people use the “acting” comments as a way to tell someone that they are outgoing, or social, or funny or holding themselves together. There are those people who walk in a room and you know you want to hang out by them. Well, that can be me.  I have the funny story.  I get groups of people up and laughing. I walk in not knowing a soul, and leave with everyone knowing my name.  What they don’t know is that this really isn’t me. What you see is a very calculated illusion of the woman I want to be. By all means --I hate the word illusions. I hate the tone it puts out there for others to decipher, but being plain old me is worse.

The illusions started small like putting on extra blush to cover up when my skin looked sallow. Then I learned how to wear fake clip-on hairpieces to fill in when my hair started falling out.  A little extra lip gloss goes a long way….It gets you farther if you remember to put it on...and mascara does wonders to make you look wide-eyed. Those are the basics of my disguise.

Now comes the real art of war, the real plan of attack...my ever-running-through- my-head list of questions that I must have answers to before I go anywhere. I need to know if I am even able to drive.  If I am not, can I get a ride? I need to plan to pack a huge (but cute) ‘purse’ to make sure it holds all my medications that I need, and my “in case of emergency” type things.  Now with all this, time has passed, and I am I am already late to wherever I want to go.  “But why don’t you have this bag pre-packed and by the door all the time?’ you may ask.  Well, simply because I need all those medications throughout the day, and every day is different, and if I kept them all in one bag, by my side all day...that bag would be the size of the allowable weight limit of fully packed airplane luggage.  Would you want to lug that around?  I know I don’t.  I tried, but kept leaving stuff all over the place and forgetting where things were-turned out to be more chaos than help...it did, however give me some pretty fine arm muscles for a while. 

But now I still have to plan my ‘look’ from the feet up, and base every choice on how good or bad I feel.  Should I wear my hair down? Am I able to move my arms enough to dry it?   Should I go all out with the make up to cover for the fact that I am a walking zombie that needs many layers of blush and concealer? Now onto the clothes…. well, will it be hot? Cold? Does this night involve a lot of sitting (ouch-pain) or standing/ walking which could put me in worse pain if I make the wrong choice?  Don‘t even get me started on the big shoes decision.

I would rather say that I am fashionably late to a party rather than explaining all the b.s I had to go through to get there.  The truth is, if I was to ask you if you wanted to hang out with me – I know I would not be your first choice.  I am not saying that to gain sympathy. I am saying it because everyone will mingle with the sick girl; curiosity, I suppose— But heaven forbid something grows out of that chance meeting…. what now?  Now I need to worry about if this person can handle my life, my choices, my energy highs, and lows, the billions of things I am forced to obsess over on a daily basis. Since I was diagnosed 5 years ago, a few people I loved and trusted turned their back on me.  I was, and still am, heartbroken because of it.  One girl I knew since grade 3 just stopped all communication; another woman that I considered to be one of my best friends, openly told people I was faking it...now she just says she is sick and tired of me of being unreliable because I have to cancel going out too often.  Yes, that’s right; I got sick just to piss her off.

I miss being normal.  Normal healthy people go crazy for cute shoes, they go shopping for normal clothes, they can eat whatever and wherever they want, they can browse for makeup--whatever. Don’t get me wrong… I enjoy all of those things too.  I just can’t pick up and get geeked about going out to do all that, because I quite simply do not have the energy or time, or a dependable pain free day to count on.  I have no choice; I have to live my life different from everyone else around me.  I have to think about just getting up out of bed. I need to think about my medication. Do I need to stand for long periods? Where is good for me to eat, transportation etc…. Just so many little things that people do not put much thought into at all.  I have thought about these things so many times, it is like living in a different world, with different issues, different priorities, and an entirely different language that I can only speak.

There are times when I do let go and speak to my sick friends and it feels like a light bulb has gone off – or maybe a switch has been turned on – but I feel a level of understanding and pure comfort around the people who understand both me, and the “acting” me.  They know me both. They know that with me– you get the real and the fake- just- to -survive.  If you are a good friend, you can dig through the illusions and the crap and find me somewhere inside.  I am part of the “secret society of the sick,” and I am proud- but not lucky to be a member.

I hate people seeing me when I am sick, and especially when I am looking sick.  I really hate being pale, with faded eyes and with splotchy skin and bad hair. At least I know that some of these things are things I can work on, but others- well, they just are. I choose what to wear based on how bad I look/feel.  I choose where to go, by how far is it.  Can I safely drive there, will the people there want to see me and be happy or excited?  Will I be able to leave without any financial issues or friendship ramifications? I hate walking around in public with a limp.  I hate not being able to wear tall sexy shoes, because I cannot walk in them.  I hate trying to quickly think of the much cooler reason for wearing running shoes.  I hate that I don’t know a cooler reason.  I desperately wish I was cool.

Big bags are trendy right now..., which is great and very convenient for me as in this role I am playing. My character wears big bags that hold lots of stuff. No one would ever know what is in my bags. Unless one spilled over- that is a nightmare I have often. I pack up every possible medical bottle or device. I pack all kinds of makeup to make me look less ghostly. I bring emergency phone numbers; I bring EVERYTHING.

I do love my life, but I hate many things lately. 

• I hate popping pills, and having people ask me personal health questions that I don’t want to answer.
• I hate living up to other people’s expectations of what a healthy person should be.
• I hate living up to other people’s expectations of what being sick is.
• I hate thinking about how or when I might die, because for me it might be a “when day” and not a “someday.”
• I hate never feeling good enough, quick enough, pretty enough, or just “enough”.
• I hate that I wonder if my husband’s family thinks that he made a bad choice for a wife.
• I hate that I wonder if my husband thinks that he made a bad choice for a wife.
•  I hate that I wonder if I am a useless mother.
•  I hate that I know my doctors better than I know my friends and some of my family.
• I hate that no matter how hard people try, (or don’t try) They will never know the loneliness of being in a crowded room knowing you are the only one who tells time by pills, energy and pain.
• I hate people that are inconsiderate, and make plans that include a lot of walking, and then get annoyed when I can’t keep up. 
• I hate people who complain, “I need a nap,” “I need some caffeine, I have a headache”, “I have pms cramps,” or even better… “I have a cold… I am Dyyyiing!” These expressions need to be banned, because they do not adequately describe how you are feeling and they belittle what pain and sickness others with invisible illnesses may be feeling.
• I hate having to defend that I am a good mother, wife, daughter, or friend.

Most of all lately, I hate people who judge, and give me advice, or questioning how I handle my diagnosis, or my life.

Basically, I hate letting people see the effects of my disease. I don’t care if they know that I’m sick, I just don’t want them to have to see it, or deal with it.  (See above rant) So I do my damndest to not let them.  In a funny way, this puts me back in control.  I get to pick who knows the real me.  I get to pick who to share my soul with.  I decide who to let in.  This isn’t a pride thing for me.  I don’t worry about people thinking I’m weak because I know I am stronger then I- or even they can even imagine.  Despite my disease, there has been nothing in my life that I couldn’t accomplish (or that I didn’t find a way to it).  It is like the scene in the Wizard of Oz when the wizard (talking about himself, in a big booming voice) “Pay no attention to the man behind the curtain.” When you watch the movie, everyone knows that the little man and the wizard are one in the same.  But because of his presence, his knowledge, and even his Sass, people want to believe in him. He hides his flaws with his smarts and pizzazz. 

My main reason for hiding my disease is that I don’t want a sheltered life.  I don’t want the simplest option given to me because somebody thinks I can’t handle any more.  I want to decide.

I want to be liked and loved because I am a great person, not despite the MS- but maybe because of it.  Maybe having this disease taught me the skill of being a chameleon, mixed with the communication skills of a great counsellor, added to a touch of structure and organization from living by the clock and the pills.

Maybe I am cautious because I am scared.  I live in two worlds- the world of the healthy- where I put my best face out and do anything my heart is set to, and the land of the sick.  Here I am understood, but I don’t have that much fun.  I worry.  I rest. I follow rules, and I live a life with pain. The unfortunate thing is- you really can’t live for very long in two worlds. It is a dizzying, exhausting dance to be two different people.  I guess I am starting to change a bit though.  I quite simply do not have the desire to act anymore.  This is who I am.  Good days and bad days.  Sometimes, there will be days where I am the funny girl that you just can’t believe is sick.  Then another day or week later- I may be that really sick girl who used to be funny. It’s all when you catch me.

I am doing my best.

I want to have one world with one life- no acting- just me...where I make no excuses any more for my choices, my feelings, and my health. A friend of mine with Lupus decided to do just that last year.  Her family did not respond well, telling her that she was selfish and mean.  She was doing the same thing I am, trying her best to fight the disease and forge ahead doing all the things everyone expected from her.  She smiled in public and cried out in private.  The fight to live up to being normal was wearing her down, and her symptoms got worse.  She decided, with her doctor and counsellors, to make some changes to improve her health-and keep her alive.  Her hubby and kids were all for it at first when she told them, until they saw that it meant they had to do some more work around the house, and have a little more compassion for her struggles.  She moved out 2 months ago to live on her own.  She says her husband treated her as if she were either slow-witted or with disdain-his duty to fulfil for the day.  Her kids (15 and 16) laughed at her and walked out when she asked for extra help around the house.  She tells me, “I didn’t realize I was such a joke to them...although it was a hard decision to leave, I do not feel as lonely now.”  YIKES!  Her story keeps popping up in my mind when I think about just ‘being me’.

I am trying to find a balance, but first I have to find a way to express my world to those who share their lives with me. I wish I could tell all this and more to them, but sometimes I think the illusions are easier for them to live with.  Maybe we could make a deal...when I start acting like the Wizard of Oz, someone could do a load of laundry.