Thursday, September 4, 2014

Life with Dilbert

Acceptance, that is the stage where I find myself after 2 long years of battling Dystonia.  WTF is Dystonia?  Dystonia involves involuntary contraction of muscles that normally work in cooperation, so that a body part is held in an unusual and often painful position as a result. Dystonia can affect any body part, and can result in both embarrassment and the inability to perform daily activities.   Mine is called oromandibular or lingual dystonia, sometimes also known as Tardive Dyskynesia.  My jaw, my tongue, my palate.  I have decided to name my Dystonia and his name is Dilbert.

This stage of acceptance brings both peace and grief at the same time.  I call myself hope junkie as I am the eternal optimist, the idealist.  I crash and burn often yet somehow when I catch a glimmer of that magical elixir called hope I breath a little faster and before I know it I am flying with possibilities and what ifs in Magic-land.  Sometimes they really do come true and sometimes I am hurtling back to earth with the bitter taste of disappointment in my mouth.  I remember googling my crazy side effects of the anti-depressant I was on and copying the link in a mail to my sister and husband.  I was in so much pain and so freaked out and when I read: months, years and sometimes forever I freaked out.  FOREVER?   What do you mean FOREVER?  I cannot do another day of this, not one more day.  Well guess f*cking what?  You can and you will and you have to.  Over 700 days, I have lived with this for over 700 days.  Not because I am brave or strong, because I have young children and a husband so I cannot take my own life.

Have I thought about it?  Oh yes.  Very much so.  I have tried various medications to tame or even kill Dilbert and the one made me so suicidal.  I thought about taking my own life every day.  Many times a day.  It came to a head on the 2nd of April and I raged all day, literally fighting for my life that day.  It was the classical battle between good and evil with death standing very close and pulling me little by little closer to the edge.  I prayed and prayed all day and ironically it was the suicide of my own grandmother that meant I had to stay.  I was not going to take on that legacy and not going to do that to my mother or my children or Gary.  To be THAT family spoken about in hushed tones.  When Gary came home we had a chat and he called my doc that said depression was a side effect of those meds and I went off immediately.  The suicidal thoughts also went away.  Geez it was a hard and scary time for me.  I remember my birthday tea on the 9th of April, exactly 1 week later and looking at my friends thinking if only you knew how close I was to not being here just 1 week before.  But enough of that, its horrible just writing about it.  And no, I don't want to talk about it.

So what am I writing about?  I suppose in the light of Dystonia awareness month I am writing to try and explain what life is like for me.  I posted a clip of myself showing my spasms on FB.  It was ugly and embarrassing but also a little liberating.  When you are trying so damn hard to be normal and act normal but actually you are dealing with a neuro movement disorder 24-7 you never quite feel normal.  Its a lonely place to be.  Apart from the pain the worst part is speech.  I have to talk against my tongue.  Its very hard and very tiring and it makes it hurt far worse.  That makes me feel disabled which in turn makes me super cross.  I blame Lilly the drug company for making Cymgen (Cymbalta generic) and then denying responsibility.  I blame my hard as nails don't give a f*ck psychiatrist who prescribed the meds, reported my case but then when Lilly said it doesn't cause Dystonia she washed her hands off me and hasn't answered a single mail since.  Her time will come, we are all held accountable for what we do and do not do. 

So how do I manage?  I suck sweets, I have a baby teether, I drink lots of hot tea, cold water.  I use masses of lip-ice/chapstick.  I try not to talk on the phone and save my speech for when my kids get home and I need to do homework.  I cannot read them stories anymore and it makes me sad.  If I say something and they don't hear me (its hard to speak clearly) I want to cry at the thought of having to say it again.  Thank God I can write and thank God I don't have it in the rest of my body.  I can exercise so I do.  One gift of Dystonia...becoming a triathlete.  Its my great big F-you to Dilbert.  I am sorry I have to swear so often.  It helps with the cross bit.  I am not a loud or screaming type but sometimes I want to collapse on the floor and rage at the world like a 2 year old crying and yelling.  Itsnotfair Itsnotfair Itsnotfair.  Then I watch clips of people with it all over or really bad facial grimaces and parts of me feels guilty because I am mild in comparison and parts of me so afraid that mine could get worse.  I saw a clip today that was so horrendous I thought no way would I live like that.  But then I thought I need to hold Daniel's baby for the first time one day and I need to button up the back of my daughters' wedding dresses like my mother did for us girls.  I have to stay and I have to just hope that it never gets worse.  I have to hope that I can manage it better and maybe, just maybe, I might even hope that they find a cure for it and I can have my life back.  Its possible that I do not have to do 40 more years of this.     

PS:  I have thought about what the hell I am going to do once I graduate and I start my career as a counselor with the real possibility of not managing to speak for lengthy periods.  My response...hope junkie thinks in the next 2 years somehow something happens and it lessens or stops and I just open my great big mouth and talk.  Fluent, easy, painless.  Please God.    

Friday, August 22, 2014

Fighting the good fight

A very kind friend gave me some dope crunchies for the Dystonia.  I tried them twice but I get so insanely stoned.  Last night in desperation I ate half and I was far less stoned but still had that cool experience where your thoughts are on a deeper level. (And it helped the spasms!)

One thought process was for a particular person and I shared the info with them today.  I know it was the right time and the right info and I was so relieved it was received in the absolute love it was sent with.  At the time I thought this is soul wisdom, a deep wisdom and I need to tell this person.  Seems God can speak to you perfectly fine when you are a little stoned!

The second revelation I am actually going to share at church one day and I want you to share it too.  Show your kids, your class, your friends this simple diagram.  Once again it felt like soul wisdom.  (Shit I still sound stoned, promise I am not!!)  Anyway, picture a big white circle bright with light and warmth.  Then have a led grey pencil in your hand.  Everytime we are mean, unkind, unforgiving, nasty, negative we colour in a little section of that circle.  When someone is ugly to us they colour in that section and when we respond in kind, we add to the grey,  More and more white gets covered and less light and warmth is allowed through.

Now picture yourself and others doing good things.  Kindness, honesty, integrity, forgiveness, caring.  It adds to the white and removes some of the grey.  Its in the tiny things, the smiles, the love, the positivity, the gratitude.  All that adds to the warmth and light and the circle/world we live in can stay a place for growth and health.  Its fighting the good fight, its keeping the warmth and light in.

I never want to colour in grey, I never want to block the light or stop the growth.  I am choosing to fight the good fight and even when someone is a major arsehole I am going to try and get my eraser out and erase their actions or words by responding in the opposite spirit.  I won't get it right all the time but I am certainly going to try.

I know I sound a little nutty, a little hippie and very idealistic but as I age I operate on a deeper soul level and it is amazing what we discover when we venture our thoughts to a different less safe space.  Know I don't just do this after a crunchie!!

Saturday, August 16, 2014

Girl Sh*t

When you are a girl mom or even just a girl yourself you understand how complicated female friendships are.   This starts at about 4 and judging by the actions and behaviour of my mother and her friends and me and mine, it continues throughout our life.
Guys in comparison are simple creatures without that need for the intense friendships we have.  They can speak to their mate every so often and it’s no issue.  If someone doesn’t like them, it’s a f*ck them thing.  They don’t agonize over why the person doesn’t like them and they move swiftly on to another chap to speak about the latest footie game or what is happening at Google.  Now I do know you get the exception and I am generalizing here and yes you do get the deep and sensitive chap.
Anyway, I see how my girls have struggled over the years and the teen years have not even started yet.  Girls bully by exclusion, who can or cannot sit with the current cool crowd, eat lunch with them or be included in their game.  Rebeka has 2 special friends and I am very grateful she is over the isolated pushed out phase.  Obviously 3 is often a crowd though with someone inevitably being left out.  Sofie struggles socially and it kills me.  I know she can be stroppy and she acts all tough but she finds it hard.   As many will identify, we handle most of the tough stuff re our kids OK but when it comes to them feeling left out or like they have no one to hang out with at school, well that is like a punch to the heart for me.  I wish I could teach her to be more likable at school and not pretend to be all tough and pretend she doesn’t care.   Every group I suggest supposedly has one girl in it she thinks is mean.  She cannot seem to just play with the rest and ignore that one.  Or they will be playing netball or something and when she asks to join in they say no.  Oh it kills me.  So I guess it’s not just my appalling ball skills and lack of aggression on the hockey field I have passed down, it’s my over sensitivity.    
The good thing about being sensitive and aware is you see things; you feel things and experience things that pass many by.  Colours are brighter, music is louder, pain of others filters onto you even when you don’t know them.  It is why I will be a good social worker and counsellor and it is why it will be hard for me too.
Yesterday Sofie tells me it’s alright she doesn’t need friends because she sits with her sister or she walks to the library or reads her book to pass the time and the characters in her book are her friends.  I wish I could help her, be a fly on the wall to see how she handles social situations so I can advise her.  Thank goodness she has 2 gorgeous out of school friends, Dani and Teagan, and me, her BFF!
It’s been a long week, my Dystonia has been horrendous and unrelenting.  I am going to think about fun things, Polly-Anna things.  I am going to make more of an effort to see my friends, FB ensures we know all the details of each other’s lives but it doesn’t mean as much as face time.  I am going to start my Ironman 70.3 training soon, my leg is now on day 25 and healing well.  No running yet but walking, spinning and swimming.  I am going to finish my assignment I am really into and I am going to think about my end of year holiday even though it’s a thousand sleeps away.  Hey, I just counted, make that 127 sleeps.   Its 6.48pm, I wish it was bedtime so I could write this week off and wake-up tomorrow with the promise of a new day.  I know everyone has felt the death of Robin Williams this week and it has left us all feeling rather raw and sad and even exposed.   OK, rambling now, going to go and chat to my Prisca.  What a bonus that even though Daniel and her are no longer really friends after being BFFs years ago I get to keep her!   Love my kids’ friends, love mine too.  Bye x

Saturday, July 26, 2014

Day 4 of no exercise

My op was on Wednesday afternoon.  Thank goodness I had a full week of training before then and the Friday was going to be my rest day.  The training for Ironman 70.3 only starts early August but I thought I would train for 2 weeks so I didn't absolutely die when I started.  I am very intimidated by the training ahead, by this crazy race I have entered which leaves me both terrified and excited.

Initially when Dr Toogood saw the wound he said 7 to 10 days. (Plastic surgeon and his name is Toogood!)  It felt very long but the consolation was I would be OK when we started the training programme and I would also be able to run the Spar Ladies 10KM I have entered on the 9th of August.  Last year it was my first 10km run so it has sentimental significance for me.  The swelling on the one side of my leg concerned my doc (and husband) which is why he thought possible fracture so he sent me off to x-rays.   Yay for no fracture which would have meant a longer recovery.  When he did the op he found the swelling was due to the skin separating from the muscle creating a cavity he could put his whole hand in.  He had to do internal stitches to re-attach and then sew up the other surface wound. 7-10 days had just become 21 days.

That is a very, very long time.  I see him Tuesday to have my dressing changed and I will then ask him what I can safely do so long.  Maybe some walking and swimming with the pool buoy between my knees so I don't kick.  As you know I only began exercising somewhere in my thirties.  I only starting exercising hectically in my forties.  How I survived my twenties doing nothing is beyond me.  I think a combo of a fast metabolism and natural predisposition to anxiety, the way I walk normally (I walk so fast I practically run) and having a little ADHD boy meant I was running around far more than I thought.  When you a single mom without much money you are forced to do plenty free fun stuff with your kid.  Much of this involves physical activity like swimming and hiking and playing ball or simply running after him.  He was hectic when he was little, hard to relate to now having morphed into a teen sloth.

Fortunately my road bike accident was nothing stupid I did unlike my mountain bike accidents.  I made sure I had 4 people in the group.  We left at 8.30 to avoid the hectic traffic.  One of us had a phone.  I asked the guy cycling with me to check my left gears which he did while we were cycling next to each other and I don't know if he pulled the break or what he did or if we simply got stuck together but I was falling and my feet were clipped in and I could not avoid it.  Something on the bike jammed in my leg.  The good thing is I managed to pull myself and my bike out of then road and the timing meant no one drove over me which is always a bonus.  I think its a God thing.  I had been super anxious before the cycle.  I even wrote something on a friends FB page.  While cycling I stayed anxious and my friend still asked why I looked so down.  I just prayed and said nothing can really protect me except you Jesus so please keep me safe.  I know for many of you, me having the bike accident means He didn't keep me safe but for me I believe my anxiety was a premonition of far worse and the urgent need to pray is the reason I am not sitting on my beach chair in heaven admiring the view while typing this on my laptop.  Do you ever get that awful feeling of worry that randomly pops up?  I do.  Sometimes Gary is on his way home or one of the kids is doing something and I get that dread feeling and that is when I pray for God's protection.  I believe if we look back at a movie of our lives we will see how many times He stepped in and kept us safe. 

Its crazy how I now notice what I am eating all the time.  Before it wasn't an issue as whatever I ate was simply fuel to be burned up at the next training session.  Now a combo of bored, PMS and miserable AND stuck at home means I eat more rubbish.  I will never live like this given a choice.  I also know now overweight people will ALWAYS be overweight if they do not exercise.  You can Noaks and banting all you like and never ever sniff a single carb but you will not be slim forever and you will not be healthy and physically strong.  You will just be deprived and food obsessed. 

The moral of this rather boring, sad post is get out there and move your body.  Find something that you like to do.  Start off slow, walk your dog.  Find a yoga class, cycle a block with your kids.  Swim a few lengths in the pool.  I know what I do is extreme and after Jan next year I plan to be more 'normal' in my exercise but I do know exercising and endorphins are essential for optimal physical and mental health.  Once recovered I will never ever have a time in my life when I do absolutely nothing regardless of my age.  The privilege of being able to be mobile and move our bodies is not to be taken for granted and wasted.  17 days to go!

Wednesday, July 2, 2014

To my Daniel on his 18th Birthday. EIGHTEEN?!

The world considers you an adult today. Eighteen years old, you can vote, drive, go to prison, buy property and be a legal guardian to your sisters.  This is totally crazy for me because how on earth could 18 years have flashed by this fast??   Happy birthday Daniel.  You might be an adult in the eyes of this world but you are my boy and I will always stay your mom who worries about you, nags a little, protects you, looks out for you, stays proud of you and just absolutely loves you with everything I have.

The moment of your birth is so clear.  I have told you this before (Getting old, repeating myself!) but the moment you were born I knew that God existed.  I was not what you would call a Christian back then but I just knew without a shadow of a doubt that God really did exist and created you.  I felt so entrusted with you.   Like He was personally handing you over telling me you were mine to raise but you did not belong to me, you belong to Him.   In the early terrifying days of being this young mother I would look at my face in the
mirror and I could see I was forever changed.  Love had come like a massive wave and crashed into me and when I emerged I was not the same person.  I couldn’t believe I was capable of love like that. I cannot wait till you hold your own baby and we make eye contact for that brief intense moment and you get it.
Remember what I am telling you now. Only then will you understand how much I love you.  And don’t make it too soon please!  And not too long either.  Anytime from age 25 will do thank you!! 

We have had so much fun getting you to this point in your life.  I know you are not thrilled with the big nose and skinny legs I have handed you but you have my travel bug and sense of humour too.   Being able to laugh at stuff, it’s important.  Life is still going to throw you many curve balls and I wish I could save you from some of the storms but that isn’t how it works. Know you can always come home and have a place that is safe and dry.  Speaking of home I am so glad you are not moving out yet.  I know I have to let you
go and I have done this bit by bit over the past 5 years but I am not quite ready to have you no longer being around to irritate me and eat all my food and leave your smelly washing lying around.  

For years and years I have been telling people how successful you will be one day.  I am not bragging or being biased but I just know.  I also know way back when there was an old Loebenberg grandpa who prayed blessing and favour over his descendants and this includes you.  You have a path to travel before you get there with lots of hard graft.  Stay humble and learn all you can from those around you.  Do what you do with excellence and passion.   Don’t forget you have to buy me that beach house one day.  Your success will come with responsibility and I am glad you are generous because God will expect you to pay it forward.   
I know you don’t do warm and fuzzy and this is probably the longest thing you have read in forever so I will try and wrap this up.  I am glad your arsehole teenage years are mostly over.  Thanks for not being a
complete brat.  I know half the time you got caught up in the peer pressure of needing to act rebellious or
argumentative because that was the done thing in the arsehole years but I never quite believed you.  I appreciate this new you.  Respectful and more considerate and taking ownership of your studies and your life.   

Daniel please, please be very careful.  Drive carefully, never ever get into your car pissed or anyone else’s car.   Be safe in Thailand and enjoy your adventure.  You are at the brink of your grown up life with endless possibilities and it is so exciting.  Work hard, love hard, laugh hard, be respectful, stay humble, be safe, stay true to who you are and have a blast in this 18th year of your life.  I am so proud to be your mom and enjoy you so much.   LOVE you!!!

Sunday, June 29, 2014

To my Sofie on her tenth birthday

TEN?  You can’t possibly be 10?  That is 2 whole hands!  That was a lot of sleeps to finally get to this one precious day of your happy birthday.  I am so very sorry it wasn't as fun today as you wanted and that tomorrow we have to cancel the ten pin bowling but I PROMISE I will make it up to you and we will go later in the holidays.
Sofieliscious you were one of the biggest and best surprises of my life.  Spending 9 whole months so convinced you were a boy.  Doing your room up in blue dinosaurs and spending that entire time making the blue bear quilt as we all waited for you to arrive.  And then you did and the first thing I did was raise you up and we were so shocked.  GIRL?!   It’s a little girl?  Rebeka has a sister?  Where is Zack?  Who is this little quiet content brand new person with her large wise eyes? 

When we sent everyone the text to say Sofia Josephine had arrived at 3.9kg everyone was most confused.  I was delighted.  I SO wanted another girl and I really wanted Becks to have a sister.  Daddy and I were crazy about you from minute one and we stay crazy about you still.  If I had to think of a recipe that showed who you were I would say a fillet steak with chocolate chilli sauce.  You really do get something like that and it’s this fascinating blend of different ingredients that somehow all work and are unique and delicious.  Unique means only one exists.  There is only one Sofia Josephine Novitzkas.   You are so brave and I know your tummy gets sore because you find things scary or they worry you or make you feel yucky.  You do them anyway, you take a deep breath and you dive off that block and swim, swim, swim.  Or you get up on the stage all alone and sing in a voice that makes everyone in the room absolutely silent.   God has given you many talents and you are a lucky girl.  We stay grateful to Him every day for your healthy strong body and your beautiful singing voice.  For your super flexible body unlike the rest of us stick figures.  

I know school hasn’t been easy for you and you get stressed.  I also know some of the girls can be so ugly.  Don’t be ugly back.  I know it is very, very hard and it is natural to be mean back but you will see that some people are just ugly inside.  Even Mom and Mimi and Aunty Tertia and Aunty Nina have to deal with mean people.   I always think something in their heart must be broken to make them so unkind.  People get jealous or insecure.  Insecure means they feel like they are not good enough and they don’t like the fact you might be better than them at some stuff so they try and make you feel horrible about yourself.  And remember not to be nasty to others or think you are better because you have a gift they don’t.   God made us all different; it is what makes life interesting.    Even dogs have different personalities! 

Well done on your school report!  I told you it would be fine and you did better than fine.  I am so proud of you because I know it was hard and you were tired from Annie shows.  When I watched you on stage I just wanted to cry.  My little girl, my Sofie, Blicksie, Fifi girl singing and dancing like that.  Well done my amazing actress.  None of us can do what you do in this family and we are all beyond proud of you.  Sofia I cannot tell you how much I love you because words are not big enough for the feeling in my chest.  I know you get this because your chest is also bursting with love for us too.  You leave me breathless.   I am your biggest fan and your cheerleader and I will support you in whatever you want to do in your life.  We don’t know what that is yet but I know you are someone.  Even now when we walk through the mall and you are all dressed up you turn heads.  You have swag my Sofieliscious and I am excited to see where life takes you.  Happy Birthday my gorgeous!

Thursday, June 26, 2014

Why I can't do macrame just yet.

My Dad was asking me why I push myself so hard and my mom called me today saying I do too much and she is concerned about me.   I must admit at the moment my anxiety is a little like a veld fire on a hot and windy day, out of control and sucking all the air from the atmosphere to fuel it, hot and wild.
Ideally I should be the person who stays home most days enjoying my alone time, reading a little.  Taking time to cook dinner, grocery shop, walk my dog Lucy and just be.  I should do gentle exercise like yoga and hang with other mothers on coffee dates.  It would help my anxiety and subsequently help my mouth which obviously reacts to stress and fatigue.  

Somehow I just can’t.  I have had a shit past 5 plus years which was beyond my control and I have also had far too many friends and siblings of friends die way before their time.   They are gone.  Gone.  They have no more choice with what to do with their life, they have no life.  How can this be?  I still can’t wrap my head around it and the latest one was a tough one as my friend Bee was convinced she was not going to die.  We pretended along with her.  We had this joke where she decided her name would not be Bee Peggy (peg as in die) so I called her Bee Zoe.  Zoe means life.  I even have her name saved on my phone as Bee Zoe.  Part of why I live my life hard is because we just don’t know how much time we have on earth.  I don’t want regrets.  We also don’t know how we will age and when I am an old lady, I can THEN walk my dog and do yoga and cook dinners and meet girlfriends.  I will have the time and I won’t have the strength and energy I have now. 

I love having goals that scare the crap out of me.  Part of me is drawn to that veld fire adding fuel like this 21km I am running on Sat.  I am really nervous for it.  It would be incredibly easy not to pitch up but I want that…I have frikkin’ done it feeling.  I have just done something for the very first time at age 43 that was hard and needed bravery and hard work and determination.  I know it’s not Comrades or 2 Oceans but for me, it’s huge.   It has taken me 16 months to get from I hate running I can’t run 5 meters and never will, to, I am about to do my first half marathon.  Do you get me? Entering for  70.3 Ironman makes me want to puke it’s so scary.  What the hell am I thinking?  Training for the Olympic distance Tri was hard enough.  This time more than double the distance for each discipline.  We start in August and I have enjoyed not training since April 26th.  Not being so exhausted.   Odd thing is I still run 3 timed a week, swim twice and do one spin class but that is considered not training compared to what is up ahead for me.  Yoh yoh yoh!!!

The studying is really not good for my Dystonia and I have added some new tricks to tongue spasms and palate spasms.  Lots of blowing into my sleeve or arm, face scrunching, jaw clenching.  I think the latest meds kicked me up a notch on the Dystonia scale.  I have to be so careful not to let it consume my life, my spirit and my joy.   For anyone who has a chronic debilitating conditioning they will understand how you fight.  You refuse to succumb.  Training so hard, studying so hard, I am in control.  Me.  I can stop at any time.   When it’s pissing with rain and the wind is howling and we are on a training run its hard but I can just stop whenever I want to.  My Dystonia, I have no control.  I am a puppet jerked 24/7 with no respite.

So that is why I train so hard, push and push some more.  To honour my friends who died too soon.  To have the rush of achieving goals I never thought I could.  To keep my head above water when my Dystonia wants to claim my life by dragging me under where it’s dark and murky.   I understand it’s not sustainable and I have to balance it out and keep perspective and I do, I will and I am.  My new schedule (Typed up today till Nov colour coded = Agatha calmed down) has a day off written in for 2 of the months until my next exams.  I am also only working 2 of the 5 days during school holidays and no weekend so I have 3 weeks of chill time.  I will read, go for long bike rides, bake, hang with my kids and chill.  I really will and then August  its training time with lots of exciting heart racey triathlons and half marathons before the biggie next Jan.  After 70.3 Triathlon next year I am pretty sure I will not do another.  If I want to finish my degree by the end of 2016 I have to do 8 modules next year and the full 10 in 2016.  You don’t believe me do you?  Really, just this one big bucket list triathlon and then I will be a sensible 43 year old normal person with my midlife crises over.  Promise.