amber rahim

Chronic illness: the parts we don't talk about


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Things we don’t talk about: PTSD and EMDR

So while on that cliff edge last week I remembered something: writing about the things we don’t normally talk about. I actually wrote this post awhile ago but somehow always skipped publishing it. It’s time now.

p.s. The shoes worked. Just thinking about them brings me back to that guiltless feeling and being on the brink is not so disorientating anymore.

PTSD, let’s talk

I don’t know where I am going with this.  I just read someone else’s blog and I got the urge to write about this.

As a woman in her 30’s, living in safe Holland, I was suprised to find out that I had PTSD.  Now what follows are not scientific or medical explanations, just the words that I have found to explain my experience.

I didn’t realise it for 3 years but looking back I can see that it was a time where I lived on adrenaline and with a constant sadness and fear that coloured everything in my life.

During my pregnancy, my daughter was diagnosed with a rare genetic kidney disorder that almost killed her in the first few weeks of life.

There were complications and basically I was keeping my legs crossed to delay the birth for as long as possible.  She was born at 30 weeks.

It was an emergency cesearean and once they had whipped her out they put her in an incubator and did a drive by so I could see her and then whisked her off.

I didn’t see her again for 24 hours.

I was pregnant one minute and then I wasn’t.  It was like she had died, which she almost did.

From the beginning I understood why I couldn’t see her, they had work to do.  They had to keep her heart beating, stop her dehydrating.  Hugs with mum had to wait.

After the first week I was able to see her everyday and then I had her at home so I knew, logically, that she was alive.

But something happened in the stress of that day.  I think it was too much for my mind and something got scrambled.

The normal process of filing got interupted – I mean, who has time to do the filing when all this is happening?

So my brain was unable to file the event and put it in the past

This is how I make sense of PTSD.

Things happen.  We experience them and then we file them into our memory storage.  We take them from ” this is happening” to “this happened”.

What happened to me was that the experience of my daughter dying stayed in the present, it never moved into the “this (didn’t) happen” category.

It stayed in the present so as a result I carried around the fear, sadness, adrenaline for 3 years.  No wonder I was on edge.

So where does EMDR fit in? This stands for Eye Movement Desensitization and Reprocessing.

image

Well, as a simple patient, this is what I understand from the doctor’s explanation.

EMDR helps move the experience from the “this is happening” stage to where they belong, the “this happened” stage.

By engaging both sides of the brain while re-living / talking through the experience, something happens and the brain is able to do the filing.  It’s like it says “what are you doing out here making a mess?  let’s get you put away”.

It works.  I don’t understand why following a light from left to right (or following a sound) has this effect but it does.  So thank you to whoever figured this out (wow you must have tried out some weird stuff to come up with this).

I didn’t know I had PTSD and it took a couple of months of therapy before even the therapist saw it.

So this is what I have learned:

you can hide it – even from yourself.

Getting treatment works.  It released me from the past so that I could go into the process of grief and dealing with it.

When something doesn’t feel quite right, pay attention.

I think I had a pretty mild case.  My heart goes out to those who have it, especially those who have suffered more than I have.

 


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Who’s choosing anyway? Taking control of my life.

I actually wrote this last year but it feels relevant again. After this hectic last 6 months and completing my exam (for those who want to know, I passed!) I really feel like pootling for a bit.

%22You're on your own. And you know what

In the Netherlands there is a motorway that is 5 lanes wide, called the A2.    It was widened to release congestion and the speed is limited to max 100kph.

At non-peak travel times it is funny to see 3 lanes with traffic and hardly anyone is tempted to speed along in the 4th and 5th lanes.  I’m sure the traffic cameras and the speeding fines have something to do with it but I also think it is a part of human nature to follow rules and guidelines.

There is common sense in them.  Slowing down reduces congestion at hot spots.  It’s safer, you’ll get there around the same time anyway, etc.  I kept to the speed limit, I thought I was being a good citizen.

But actually, those aren’t the reasons I kept to the limit.  I kept to the limit because I liked it, it was comfortable and quite frankly, after the series of mega unfortunate incidents in my life in the last few years, I have a very great appreciation that it can happen to you.

I’ve seen death approaching and I don’t want to meet him again any time soon.

Hospitals aren’t much fun either and I have had plenty of opportunities to sample their delights on a regular basis so I don’t need a car accident to bring me there too.

So I mosey down the A2 highway and it feels good.  I’m glad they set that limit because actually I don’t want to go faster than that anyway and the government gave me permission to drive slowly.

On roads where the limit is 120kph I still only want to drive max 100 but somehow I feel pressure to go faster.

One day I was struck by how funny that is.  I am opinionated, decisive and really don’t like being told what to do.  Yet I feel like I should go faster than I want to, just because of a road sign.  That’s when I realised that the reason I like the A2 so much is that I am relying on someone else to give me permission to be how I want to be.  How ridiculous is that?

I could just give myself permission.  I do give myself permission.  Permission to cruise when I want to, to race when I want to, to stand still when I want to.

So the next time you see a slow poke cruising down the road, it might be me.  I’m not trying to get in your way or make you late.  I’m feeling good.

I’m choosing.


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Dusting off my soul

I have been all over the place this week: great heights and deep lows. I have been inspired and moved to write some good blogs yet it’s wednesday evening and I can’t bring myself to publish any of those posts.

I got introduced to the artist Piet Mondrian this week. Firstly by a wonderful friend Lana,(http://www.smarttinker.com) whose passion, to develop children as learners so that they can face anything life throws at them, is inspiring. Secondly by my brother in law Andy, who keeps his sanity with grace even though he lives with 4 of my female relatives (his wife and kids, my sister and nieces for those of you had a “say, what?!” moment there).

There is just something about art that lifts us out of the compactness of our lives and into a bigger space. A space where we can just be. We can appreciate or criticise. We can absorb or reflect. Most importantly for me, it takes us out of ourselves.

We often often forget about art, especially when the responsibilities of parenting and care-giving pile up on us, leaving us with little time to stand still. So I want to share some art here that I looked at today and invite you to stand still. No comment from me, just the artist and the pictures. I hope it brings you something. Share your thoughts in the comments. Or not. Take a moment out of yourself, maybe go and look at some more art.

“The purpose of art is washing the dust of daily life off our souls” Pablo Picasso.

Piet Mondrian: Broadway Boogie Woogie

Mondrian_Broadway_Boogie_Woogie

Piet Mondrian: The Gray Tree

Mondrian_gray_tree

Salvador Dali: Swans reflecting elefants

Swans_reflecting_elephants

Fayeq Oweis: No!

no2

Pablo Picasso: Violin and Candlestick

Violin_and_Candlestick

Last thing to say:  dear William, I am glad you are home.


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my burn out story

When I burnt out I was traveling at 100 mph being batman; saving my business world from the bad guys and crooks who appeared disguised as project managers and stakeholders; and in my private life, fighting off the evil villain of my daughter’s chronic illness.  I was working harder and harder and doing it with a smile and sometimes a snarl.

Finally, a message came through.  My body finally broke through the wall I had put up in my mind to avoid the truth.  My body is a dirty fighter and hit me hard  with aches and pains and finally, took my mind.  I was tired, cranky and short tempered.  I was forgetful, I couldn’t even remember how to spell forgetful.  I couldn’t sleep.  I was exhausted, worn out.

I had an epiphany. ” I need to stop, take a break before I break”.  I thought I was so smart and that I had realized in time.  Ha! Could I have been more wrong?

So I parked my bat mobile, got ready for a 4 week timeout and …… just stopped.  Everything just shut down.  I could barely function.  I had used up all my reserves and was empty.

It took a long time to start back up again, 1 step forward, 1 step back, a step sideways etc.  I started making progress, recovering, to function.  However I realized that there were some things that I couldn’t do anymore and I feared I was broken.  I felt broken.

You see, I thought that people are like elastic bands; when you stretch them too much, they break and they stay broken.

With my burn out, these are the “elastic bands” that broke:

– multitasking.  It took all my concentration to make a cup of tea.  I couldn’t have a chat with you at the same time.

– being able to take on the intensive 24 hour care of a critically ill baby with just my husband and I to split the shifts over.  (Of course I had been trying to do this perfectly).  A lot more work fell on my husband’s shoulders (sorry dear) because I wasn’t able to do my part.

– Being a superhero. Batman was gone, suit back in the cupboard.  I just didn’t care to fight the bad guys anymore

– Being helpful: saying yes, I’ll fix that / take care of it, you can count on me.  Gone.  I just wanted to tell people to, well, insert your own swear word here.

I really thought I had lost a lot but something strange happened during this mega timeout. I started to see things in a new light.  Those things I mentioned just now?  This is what I like to call them now:

– ” tolerating being overworked”

– ” being taken advantage of”

And

-“not asking for help”

Now that I see these “elastic bands” for what they really are; negative, destructive behaviours.  I am glad they are broken.

Who actually wants to be a superhero, working non stop, taking care of everything? (Never mind having to wear your underpants over your tights).

Who wants to do it all alone?

It was with relief that I realized that people are not like elastic bands, we are organic.  We grow, adapt, learn new things.

New things have taken the place of the things I lost.  These are my new things:

The ability to

– say no.  Or “not now” and fit it into a time when I can do it without adding stress.

– recognize if I am becoming overloaded and getting cranky

take action if that happens and get myself back to feeling good: look after myself

And these two are my favourite:

– letting go

– asking for help

Whatever I am doing, it doesn’t have to be perfect.

I can let someone else do it.  I still think there are a lot of things that I can do better than anyone else – I’m not humble, I admit it!.   But if it means that I can take a break, get other tasks done, just breathe, then it’s worth letting someone else do an average job.  I can live with imperfection if I can just breathe.

So did burn out leave me broken?

Actually, it set me free.  Those restrictive bands have burnt away, leaving me covered in a fertile ash where things can grow. I have grown, improved, become a better me.

I can get more done than ever before because I delegate and share the load.  I accept and ask for help.  I focus on what is important and I’m mindful and do one thing at a time (well, ok, I’m not living a zen life but I do it a lot more!).

I feel happy again, I laugh and I experience joy.  I dream and I expect to make some of those dreams come true.

So people, remember this: we are creative, we are resourceful and we are whole.


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The other side of being

I am writing a book and I am stuck.  I want to write about the good, the experiences that keep me going.  Yet every time I sit down to write about these, my mind goes blank.

It is so easy to write about the hard stuff, the painful moments.

I know there have been good moments, achievements big and small, moments that make it all worthwhile and still, it’s like I am frozen.  Unable to even remember them, let alone describe them.  I pick up my pen and nothing.  It is like someone presses pause on my remote control and I haven’t seen this film before so I don’t know what comes next.

So I have been looking for inspiration, a way to unlock those good memories.  I told myself “don’t force it, allow yourself to wander along memory lane and it will come”.  Time has been passing.

Then yesterday my daughter asked me “zullen we een wandeling maken?”  Shall we go for a walk?

It was 6:45pm and she goes to bed at 7:30pm.  It’s a school night and I should have said no but I didn’t.

We put on our coats, grabbed a torch and went outside.

It was drizzly and we talked about the weather.  She thought gloves and a balaclava would be handy considering how cold it was.

She was happy that she had a hood on her coat to pull up and keep her warm and was concerned that I didn’t.

She held my hand to make me feel safe in the dark.

holding-hands-mother-and-child2

I’m still struggling to find words to describe this good feeling but it was good.  Maybe it was the absence of worry.  Maybe it was the simplicity.  Maybe it was the “being”.  We didn’t “do” much, just went around the block.  It wasn’t an adventure and it wouldn’t be on any child’s christmas list but we did it together.  We were.

We walked, we talked, we held hands.  We came home with the satisfaction of a job well done, with a feeling that all was right with the world.  And it was.

I’m not going to try and write about it anymore.  I just want to enjoy it.  Maybe if I let myself just feel for long enough, the words will come.


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Tragedy separates, talking connects

When I started this blog I had intended to write about living with my daughter’s and my own chronic illnesses but something happened recently that is so enormously sad that I have been flitting between desperate, immense sorrow and numbness.  It’s been 6 weeks and I have moved out of that now to a more dull place, where feelings are not so sharp.

When I got the news I pulled back from life, sank into myself.  I was with my children all day but I could barely acknowledge their existence.  It hurt to look at them so I didn’t.

Now I can look at my children again and it is with a bitter sweetness that I count my blessings.

Although it is still too raw for me to share in my blog I find I cannot stop thinking about the impact of tragedy, so I will write about mine.  Time does heal and this healing in me makes writing this post possible.

In tragedy, in losing one person, it hurts so much that it is easy to lose the people around you too.

Our daughter almost died at birth and fought for her life for 5 weeks.  For the next two years a cold would lead to a trip to the hospital and random life threatening fevers plagued our winters.  We did not lose her but there is a lot of grief from this incredibly bumpy ride of “will she, wont she (die)?” and tragedy exists.

We each deal with our grief in our own way, often alone, and the distance between us grows.

Before you know it, years have gone by and you look at your husband and think “who are you?”

You see that they have the same look in their eyes.  Two strangers who have shared so much, but not together.

Each walking their path alone, side by side, only looking inwards, never at each other because it hurts too much.

How do you find your way to each other again?

For us we followed the usual routine: spend some time together.  We went out to dinner.  We went for walks through Amsterdam, exploring new neighbourhoods and chatting.  We had a nice time, we rested and it helped us get energy to face the next day with a smile but it didn’t really bring us closer together.

The real connecting happened when we talked about our experiences of our tragedy.

For example, my husband’s experience of the birth was very different to mine (apart from the obvious “he was not giving birth” one).

He was standing up watching a bunch of people cut me open.

I was lying on the table calmly, not feeling anything.

Oh yes, important detail: it was a cesarean, not just random butchery.

I had a wonderful view of the ceiling lights and was sheltered from the horror movie blood and guts (or should I say blood and uterus) by a green curtain.  They don’t let you see your own cesarean and I’m really glad! It’s definitely not something I ever want to see.

So he told me what it was like for him to watch his wife and child in danger, not knowing what was going to happen.

We told each other our thoughts, hopes and fears.  Each different, each equally real.

Something lit up between us.  It’s like there is a thread holding us together which had become very fine and barely visible, fragile.

As we shared, the thread grew thicker, stronger.  It started to glow as if sunshine and warmth were pulsing through it.  I felt a warmth, connection, love that I had not felt for a long time.

Through sharing our tragedy with each other, through putting our experiences into words for the purpose of explaining to the other:

“this is what is was like for me”.

We connected again.  No longer shift workers but friends, partners, husband and wife.


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Husband and wife or shift workers?

A friend of mine noticed what I guess you could call a freudian slip.  She noticed that in my “about me” page I listed that I am a mother, daughter, sister etc but not wife or partner. (Don’t bother looking now, I have already updated it)

It was not consciously done (and I’m sure Freud would have a field day with that) but it did remind me of something else that happened when I became a carer.

You see, both my husband and I became carers all of a sudden.  We have no medical training but all of a sudden we needed to use needles, figure out how to use a feeding tube without drowning our little baby by accidentally accessing her lungs instead of her stomach, do a physical exam to assess how dehydrated our daughter was etc.  We were thrust into the roles of carer and nurse dividing up the days tasks between us.

In the beginning I was at home so I had the day shift.  My husband would come home from work and I would hand over, which would go something like this:

“Here, you take her.  She’s had her 4 o’clock potassium and needs her next sodium dose at 6 o’clock”.  I’m going to the loo then I’m going to get dinner ready”.

I might even have said, “Hi, how was your day?”  Far too often I was frazzled, covered in vomit and in desperate need of 5 minutes to myself and just said “your turn”.

I would go to bed early and get up for the 3 am rounds.  John would do the midnight and 6 am rounds.  We would both get a bit of sleep.

We were like shift workers, doing our bit then handing over the work load to our colleague.

This doesn’t leave a lot of room for a relationship.  You just don’t have the time or the energy.

It’s not surprising that so many relationships break down in these circumstances.  You need to feed and look after a relationship.  Spend time on it, put some energy into it.  When your every waking moment is consumed with worry, care and a million things that actually do have to be done otherwise someone will become (more) ill, then it is hard to look after your relationships too.

I was barely putting energy into showering.  I really didn’t care what I looked like and dressed in baggy puke stained clothes most of the time (there was a lot of vomiting going on).  Did I take an interest in what he was doing?  Erm, no.

My focus was: how long can we keep her out of hospital this time? and why did we buy a sofa with a fabric cover?  I need wipe clean surfaces – on everything.  I’m never going to get that vomit out.

Let me also clarify – did it matter what I looked like?  Not to my husband, but it is more a reflection of my state of mind.  I didn’t care about a lot of things, I was preoccupied.  I didn’t notice me and I didn’t notice him.

We were barely parents, let alone partners in life.

This has changed.  It has taken a lot of work and I am thankful that my husband is so stubborn that even when I told him to get lost, he didn’t.  It pissed me off no end at the time but I am grateful that he stayed.  I calmed down, we agreed we needed to do something about it.  That was not what we wanted but we needed to make changes.  We needed to remember why we got together in the first place.  We need to reconnect as people who loved each other, who had made this beautiful girl together and who were terrified of losing her.

Stress really tests a relationship.  Sometimes it is too much.   For those of you for whom this has happened, I share your sadness.  It hurts.

Sometimes we hang on, clutching desperately, until we start to get closer together again.

So I don’t know what it means, that I didn’t add that I am a wife or partner.  Maybe writing that first post just took me into the past where I didn’t feel like a wife anymore.  Maybe it’s a sign to myself that it’s getting busy again and that I miss my husband.

Whatever it is, thank you dear friend for mentioning it.  I think I’ll go and make a date with John.

Important note: this post is published with the full knowledge and consent of my husband.  It’s kind of like the EU – if I mention him, he gets veto rights on the blog.