Pain

Since just before my MS diagnosis, I've been suffering from back pain.  Really, really bad back pain.  In fact, I don't recall ever feeling such pain before.  And it just won't go away.

The neurologist says it's MS.  He says most likely there's a lesion pressing or forming on my spine.  Even though my most recent MRI shows no lesions at all in my spine.

Lesions are what MS is all about.  Lesions forming on the brain or on the spine.

Of course there's no cure for MS, and so all treatment is aimed at stopping or slowing down the formation of new lesions.  My first MRI showed that I have a bunch of lesions in my brain and my second MRI (three months later) showed three new lesions.  That's bad, bad, bad.

But the pain is real.  And it's shit.  I hate it.  Yesterday I had a bad night.  Not much sleep.  Lots of pain.  I finally gave up and got out of bed to cry on Craig's shoulder.

It's shit.  I hate it.  MS sucks.  My life sucks.

And I found a study which indicates that parents who have suffered the sudden and unexpected loss of their children, are twice as likely to develop MS in the decade following their loss.  Guess what?  That's me.  Shit hey.

So because I'm (i) female, and (ii) spent my early childhood years growing up in northern Europe, and (iii) smoked as an adult, and (iv) had sudden and unexpected child losses, my chances of getting MS increased.  Who knew?

Life sucks.

Thank goodness my one great love never leaves me.  💖💖Craig 💖💖

Moments.

It's been a long time since I posted anything here.  But I'm finding the need to write again.

A week ago I was diagnosed with Multiple Sclerosis. 

I'm pretty devastated.  Every day I wake up and it's new in my mind.

Every day I think: why me?  I guess I should be used to thinking that.

What is it that causes shit to happen randomly to people?  Why is it that some people have more shit happen than others?  Why is it that some people walk their journey through life in some untouchable bubble, whilst others have nothing but bad luck?  I'd like to know.

My MS is pretty active.  I had my first MRI on 21 February and then my second on 21 May - three months apart.  The first MRI showed a whole bunch of lesions.  The second showed three new ones, and the old ones were still there.

We met with the neurologist who gave us the bad news.  The next day we met with a nurse consultant from the neurology team at the hospital who spoke to us about treatment options.  They are recommending an aggressive treatment.  We agreed.  I start next month.

So now I have to cross my fingers that the treatment works.  That the treatment will keep the lesions at bay, or, at least, slow them down. 

And, even though I've done this before, how the f*ck and I supposed to go through this again?  Where life changes in an instant?  That moment before the neurologist said "you have MS" and the moment after?  Like that moment before the sonographer said "there is no heartbeat" and the moment after?  That moment when you're peacefully sleeping and the next when you wake to find your child is dead?

These moments, they change our lives.

Not just my life, but also my husband's.

And yet other people, they just walk through life, in their bubble, with their living, healthy children, and complain about petty stuff.

These moments.

I nearly lost this blog today.

I'd tried to log on a few times, but couldn't, because I was getting the username, password or website address wrong.

It freaked me out a bit.  The idea that I would lose all that I had written.  The memories I wrote about.  The journey which is detailed on this blog.

Anyway, thank goodness I managed to get it sorted.  It's still here.  All those words.  All those memories.  That journey.

It's still here.


 

Sisters

I haven't been here for a while.  This blog has been silent.

I haven't had much to write, to share.

My life plods on.  Each day the same as the next.

:::

My sister and her husband and her three daughters are coming to this side of the world next month.  I'm looking forward to it.  But I'm also dreading it a bit.

My sister is happy with her life. Happy with her husband. Happy with her kids. Happy with everything really.  And I'm not.

My sister is a missionary. A fundamental christian. She believes her happiness and the happiness and health of her family, comes from god.  She believes that because she's a fundamental christian, because she believes in god, that god looks after them and gives them health and happiness.

I used to be a christian too.  But then my children died.  And I wondered where god was.

I don't know how my sister and her husband can believe in god, the god I used to believe in, the god who keeps people healthy and happy, when my three children are dead.

I don't know how my sister can believe in god, when her god performs miracles, when her god has a plan, when her god knows everything that happens, when her god is all powerful.  How can she believe?

Does she believe that my children are dead because somehow it's all part of god's plan?

I know she believes that my children are growing up in heaven.  I know because she's told me.  I hate it when she says so, because I know that is not the case.

Everything that she believes about god, which is everything that I used to believe, is false.

She believes that god hears prayers.  She believes that god answers prayers.  She believes that god ALWAYS hears and ALWAYS answers prayer.  She and her husband pray about everything, and wait for god's answer.

And yet when I prayed for Freyja, she died.  When I prayed for Kees, he died.  Hundreds, if not thousands, of people prayed for Kees, and yet he died.  I didn't pray for Jet, because I knew it was useless.

And my parents, and Craig's parents, who are all fundamental christians, they prayed for Freyja, for Kees, for Jet, and still they died.  God did not save my children.  The god to whom they prayed did nothing.  Although according to my parents and Craig's parents and my sister, god did hear, but his answer was just unclear to us.  Obviously the god who has planned every single thing in every single person's life, had already planned that my children would live and die as they did.  And prayer wasn't going to change that.

I stopped believing in god.  I know the day and time, down to the last minute, when I stopped believing in god.  It was when Craig and I held our son Kees in our arms and watched him die.  Watched him take his last breath.  Held him whilst his heart stopped beating.  I stopped believing then.

But my sister still believes.  She is still a missionary.  With a mission from god.  To tell as many people as possible about the power and love and kindness of god.  But I have seen none of that.  The god I believed in does not exist.

And this belief of hers, it gapes like a chasm between us.  She believes her happiness, her health, the health and happiness of her family, is due to god.  She honestly believes this.  And I used to believe it too.  Until my happiness was taken away.  Until my children were taken away.   And god did nothing to stop it.

:::

So there it is.

She will be in NL for 4 days.  She'll spend 2 days swanning around visiting all the relatives, who have jumped for joy at the news of her coming, and who are rushing to plan a "family-day" so that all who want can see her.  These are the same relatives who did nothing, said nothing, when my children died.  I will not be going with her to see the relatives.  I cannot pretend.  I cannot pretend about happiness which does not exist.  I cannot pretend I don't loathe the relatives who did nothing and said nothing.  I dislike hypocrisy intensely.

I'll have to walk on egg shells when she's here.

I'll have to put up with their prayers and "bless you's".

Maybe I'm not looking forward to it after all.

A bad mother.

I guess when other people think of us (if at all), they think of us with our three dead children, and that's it.  A couple, Craig & I, without children.

And much as I hate it, that is it.  The only children in our lives are dead.

Unlike other people who have had three children, we spend our time alone.  We don't complain about lack of sleep.  We don't plan child-friendly holidays.  We don't complain about naughty children.  We don't spend our money on clothes, shoes, etc.  We don't wait around for school holidays, and then complain our children are driving us mad.  No.  It's just us.

:::

FB is driving me mad again.

Nothing has changed.  It's still the same.  I just get more pissed some days than others about how parents of living children have nothing better to talk about than their children.  And they are so completely insensitive to others.  It is so amazing, that on a social network like FB, where the whole purpose is to connect with other people, it's so bloody obvious how selfish people are.

Someone recently put the following cartoon on FB, and I was horrified.  It was a baby-lost mum who posted it too.

I couldn't help myself.  In the comment section, I wrote "well, I must be a really, really bad mother than".  The BLM poster did not respond!  Unbelievably!!

And that's the crux of it really.

I've kept my FB page fairly de-cluttered of "pretend" friends.  Those people who I haven't heard from or seen for 20 years.

I want to be able to be myself on my FB page.  It is one of my primary social outlets.  I live on the other side of the world, in a country which is not (and never will be) my home.  All my old so-called friends have long deserted me.

I count on FB to give me contact with people who know what I've gone through, why I am the way I am.

But I've forgotten.  Or rather, my FB friends have forgotten.  They've forgotten what it's like to have only dead children - to the extent that that the cartoon above seems funny to them.  Ha.  Nearly all of them have living children now.  And the simple fact that their child/ren is/are alive means that they cannot know how we child-lost parents live our lives.  In fact, it is impossible for them to know, because the fact that they are parenting living children means that their paths have significantly differed from ours.

:::

I still want a living child.  Very simple fact.  Just because all my children died, doesn't mean that I have stopped wanting that.  Accepting that my 3 children are dead doesn't mean that I accept that I will never see a child of mine live longer than 7 weeks, go to school, read a book, ride a bike, and all the things that go with that.

Even though I'm 43 and 11 months old.  Even though my period seems to have disappeared and I have no idea where it's gone.

Craig wants us to have another child of our own.  A child with our genes.  A child which would face the same risks as our Freyja, Kees & Jet.  A child who might die for the same reasons our three did, whatever those reasons are.

Just because my children are all dead, doesn't mean I don't want another one.

Just because I know I can never have Freyja, Kees & Jet back, doesn't mean I don't want a fourth.

Life goes on.

We've been moving some stuff around in the apartment, changing our bedroom, and other such things.

We're trying to create more floor space, so that when we eventually put the apartment on the market, it will look "spacious".  Which is kind of funny given that our apartment is small!

Anyway.  As a result of our reorganisation, we've got lots of stuff left over!  Stuff which we really don't need.  So I've been selling it online or giving it away.

:::

One of the things we sold last week was a cupboard from I.KEA.  We had bought the cupboard just before Kees was born, so that I would be able to put all his clothes and things in it.

Given that Kees died when he was 7 weeks old, we didn't use it for him for long.

Then I stored handbags in it for a while.

But last week we decided we needed the floor-space more, so we sold it.

:::

A very nice lady came to collect it with her husband.  Her husband and Craig were busy taking it down our (three flights of) stairs, so the lady and I chatted a few minutes.

We were standing in our hallway, watching the blokes take the cupboard down the stairs.

As we stood there, she saw my photo gallery.  I have five A4-size photos of each of Kees and Jet on the wall in our hallway (Freyja's photo is in our bedroom).  She asked if I had children.  I told her we had three children but that our children were dead.

During this conversation we are walking down the stairs, following our husbands.

The whole conversation probably took about 2-3 minutes.

Just as we were coming to the bottom of the stairs, she said to me " ... but, life goes on".  And that was the end of our conversation.  They went outside, and we closed the door to go back up to our apartment.

:::

I've been thinking a lot about those words, "life goes on".  I disagree with the statement and the conclusion.

Because for most people it is both.  It is a statement of fact, ie. life does go on, unless we die.  But it is a conclusion as well, because no matter what happens, unless I die, life goes on.  People say it like somehow it's meant to console me.  That I should take comfort that even though my three children are dead, my life will go on.

But in actual fact, my life stopped.  My life stopped on 24 July 2006, in the early afternoon, when I was told that my daughter's heart had stopped beating.  That the precious child inside my womb was dead.  My life stopped.

I stopped being that happy newly-wed woman.  My career in Melbourne at a big law firm stopped.  My hopes for the future disintegrated.

My life came to a screeching halt, and proceed to smash into a thousand pieces over the next few days when I gave birth to my dead daughter and when Craig and I buried her.

:::

Craig and I worked hard to make some sense of our lives after Freyja's death.  We tried to put things back together again.  But it didn't work.

We took time to travel together, to spend time together, to mourn the loss of our daughter and our hopes for her and our lives together as a family.  We even moved from Australia to the Netherlands.  I got a new job.  We moved into my apartment in Amsterdam.

Then when we brought Kees home from the hospital, eighteen months after we lost Freyja, we thought finally our life can go on.  But it didn't last.

Again our lives stopped, on 21 March 2008, when Kees died in our arms for reasons unknown.  Again our hopes were shattered.

By this time both Craig and I were suffering from post traumatic stress disorder, which, together with our complicated grief, meant that our lives were virtually at a stand-still.

Again we took time to travel together, to grieve together.  To try and understand why such a terrible thing could happen again, to us and our beautiful son.

And of course, eighteen months later, on 1 September 2009, we held our son Jet, dead in our arms.  Another one.

Three dead children.

:::

Our lives stopped.  Again and again.  Our dreams died with our children.  Our hopes shattered.  Our lives lay in ruins around us, and there was not much we could do.

But people still say "life goes on", and all I can do is stare at them.  What can they be thinking to make such an inane comment?

My life stopped.  Three times my life stopped.  And each time, just when I thought it would go on, it stopped again.

:::

The life I lead now bears no resemblance whatsoever to the life I lived before my children died.  There is no resemblance at all.

I don't have a job.  I have no career.

I have no hopes or dreams.

I live in the moment, I have no plans for the future.

I have no joy.  I am always sad.

My thoughts are incoherent.  I am unable to concentrate for long.

Our friends are long gone.

I have very little sympathy for others.

I have no patience or tolerance.

If I got a photo of me then, in the Before, and put it next to me here, in the After, I doubt anyone would even recognise that I was the same person.

My life did not go on.  It stopped, again and again.

Before.  After.  Two completely different lives.

Bored

I am bored.

Totally and completely bored.

I get up in the morning, and I am bored.

I am bored for the whole day.

I go to bed at night, and I am bored.

I have nothing to do.

I have no purpose.

Sometimes I hang some laundry to dry, or fold some clean, dry laundry, but usually I can't even be bothered doing that. Usually Craig will hang the laundry. Usually the laundry piles up waiting for me to fold it and put it away.

Sometimes I cook. Because there's nothing else to do. But although I like to cook, I usually end up feeling guilty because cooking just means I'll eat more. And after losing all that weight last year, I'm putting it all back on.

Sometimes I polish my nails. That keeps me busy for half an hour or so. And then I can't do much for a couple of hours whilst the polish dries.

Sometimes we go for a walk. To the supermarket, or to the post office. To somewhere. For a short walk.

Occasionally we cycle to the car. To the garage. And go for a drive. Sometimes.

Once every 5-6 weeks we go to visit our shrink. And discuss the same old stuff. Babies still dead. Still angry. Still sad. Blah, blah, blah. Please give me more medication. Although I'm not at all convinced it does anything for me.

Sometimes we talk to people on the phone. Not very much, because there aren't many people who want to talk to us.

Usually I spend my days sitting on the sofa, with my laptop. I get bored with that too, because I only have a few websites I look at, and then nothing.

Or we watch dvd's. Endless dvd's. And really, after the first 100 or so, that's pretty boring too. It drives Craig crazy, that I get bored with the dvd's. That I stop focussing. It's boring.

I used to buy things. From online. Something to do. Something to receive in the post. But that gets expensive, and it was all stuff I didn't need. Shoes, handbags, nail polish, etc. And it means nothing. Now I have too many shoes. Too many handbags. Too many polishes. And I'm still bored.

So what do I do all day?? Nothing. Nada. Niks. I watch Craig playing his stupid game on the internet all day. And he does - all day, every day. And if I didn't interrupt him occasionally, he'd play it every waking moment. And when I do interrupt him, he gets pissed with me. In truth, I'm jealous. I wish I had an internet game that so completely obsessed me.

So, that's what we do all day, every day. Sit on the sofa and get fat. And I am bored.

:::

I never used to be like that.

I used to be busy.

I used to work.

I used to read books.

I USED TO GO OUT. WITH PEOPLE. OTHER PEOPLE. We never do that any more. We never go out. We never meet other people. There are no other people who want to meet us.

I used to work. I had a career. I was good at it. I was better than good at it. I was great at it. I don't work any more.

I used to love travelling. I travelled with friends and loved it. Now when Craig and I travel it's a chore more than anything. We plan our trips because otherwise we have nothing to plan. Otherwise we have nothing to "look forward to". But the reality is that we don't look forward to our trips. Most of the time we'd rather stay home. Most of the time we resent the effort required for these trips. We often come home earlier because we're unsettled and not enjoying ourselves.

I used to enjoy the sunny weather (when it was sunny). I used to go out and make the most of beautiful weather. Now I sit on the sofa and think that we should go out, but instead we just stay inside and draw the blinds, and put another dvd in the player.

I used to have lots of friends. Now I have none.

I used to trust my parents and my siblings. Now I don't.

I used to believe in the future. Now I don't.

I used to think the best was still to come. Now I know that the best has already been.

I used to care what I looked like. Now I don't.

I used to wear make-up. Every day. Now I never do.

I used to love buying clothes and shoes. Now I don't.

I used to get my hair done every six weeks. Now I don't.

I used to like my nieces and nephews. Now I don't.

I loathe it that my cats are alive, whilst my children are dead. I LOATHE IT.

:::

I'm totally bored. Completely and utterly. And I don't know what to do about it.

Sometimes I think I have an idea, but it doesn't work.

Sometimes I think we need to get out of the apartment more, and then we do, but it doesn't change things.

For a while, we subscribed to a monthly movie theatre pass, thinking it would get us out of the house, and it did for a while, but then it stopped working. And we were going to see stupid movies too. That's when we stopped, when we realised that the movies we saw were just stupid.

:::

Sometimes I surf the net and look at the blogs I used to read. But I can't read them any more. They just make me sad and angry. Because those people have moved on. Their lives have changed. They have living babies who give them joy. Even places like glow.in.the.woods aren't directed at people like me. I don't feel welcome there. They're directed at people who move on from their losses. And when I move on, my losses come with me. I don't have a living child to focus on. I don't have a living child to give me joy. I have no joy.

I feel like I have no place where I belong. And it's lonely, not having a place.

I exist. I eat. I sleep. I miss my old life. I miss the life I should have had. I hate my life. I miss my children. I stare at my laptop. I hate all my old "friends", who deserted me when the going got tough. I loathe my sisters for having children who live. I loathe my parents for doting on their grandchildren (and my sisters for being mothers to their grandchildren).

My existence is pointless. I have no purpose. I am completely useless.

I am bored.