amber rahim

Chronic illness: the parts we don't talk about

Category Archives: care giver burn out


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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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Why 13 hour TV marathons are ok in my house

As much as I agree that television and electronic gadget time should be limited, I find myself turning to that magic box, TV, on a regular basis.  You could say it saved my sanity on more than one occasion.

Take this weekend.  I let F do a 780 minute TV marathon on Sunday.

Why would I do such a thing? Well, have you ever read the “spoon theory“? Christine Miserandino explains the limitations that people with various chronic illnesses live with. It’s really good so if you haven’t read it yet click the link.

It was King’s Day in the Netherlands this weekend and on Friday all schools held the “King’s Games”. It’s a fantastic initiative to celebrate with sport. F loved it. She was really active all day at school and came home wanting to play outside until it was dark. On Saturday she was starting to wilt but was full of enthusiasm for picnics, playing and chinese roasted chicken (who doesn’t love this?) and although it was King’s Day we kept the activities light. But not light enough. It was difficult for us to have to rein in her fun and we didn’t do a very good job of it. Maybe she would be ok. How would we know what her boundaries were if we didn’t let her test them?

This is where the spoon theory comes in. She had used up all her spoons. In F’s case, her spoons are potassium (K) and sodium chloride (NaCl). Unlike the rest of us, her kidney’s don’t hold on to the K and NaCl so when she is active, she depletes the stores in her body, making her weak and nauseous.

She awoke at 3:30am on Sunday, unable to sleep and starting to vomit in a “normal for her when she is coming down with something or has overdone it” way. Despite holding her on my lap and being with her for an hour she couldn’t go back to sleep. I couldn’t stay awake without getting cranky so I told her she could play in bed but that I needed to go to sleep. Wise that she is, she let me go.

The TV marathon started at 8am and was only interrupted by bouts of vomiting and going to the loo.  The magic box did it’s work of distracting and entertaining and by the afternoon she perked up enough to nibble on crisps and raisins.

By 9pm, after hanging out on my bed for awhile (me reading, her still watching telly) I told her to close her eyes and go to sleep. My booked finished, I moved her to her own bed.

Yes there are better ways to distract and entertain even really sick kids but TV works for F.  Big plus: it is easy for me. Yes, yes, yes, I am a mum and I chose “easy” over “best for my child”.

I accept that I have double standards (I would never let S do this) but it came down to this: I was tired and I wanted something that would work.  So I make these choices that in isolation don’t look good. Ok, even in the big picture this one doesn’t look good (13 hours!). But it fulfilled a need – of F to rest, be entertained and be distracted from the nausea and for me to have an easy day. I guess I had used up my spoons too.


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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the


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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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The downside of bringing up independent kids

I have written before about bringing up kids who are independent, make their own decisions, are self sufficient. It’s a good thing. Yet sometimes it’s not.

As other MoBs (mothers of bartterskids) know, we are also teaching our children how to manage their illness. This can involve life or death decisions.

We know that one day we need to let go and let them make their own choices. They need to strike out on their own, solve their own problems and not involve us in the process. We hope that when that time comes, we have done enough that they know how to make good choices for themselves.

Yet humans do not always make good choices. It is always at the back of my mind that one day F will stop taking her meds. This terrifies me and the for the sake of keeping her well, alive even, I could violate her right to choose and force it on her. But that only works short term and legal independence comes at the age of 18 and what do I do then? Or what happens when I am gone? I want her to look after herself so that means she has to do it. So I need to let her make her own decisions.

So what if she does something stupid and ends up in hospital? What if she hurts herself?

I do not know what I will do but it is inevitable that both my children will make choices I don’t agree with, do things that I think (and know) will hurt them.

This dilemma that we face drives me nuts – we want them to be independent but we want them to do what we say!

What do we do?

Whether your child is ill and doesn’t take their medicine or is in trouble and doesn’t accept the help that is offered; or you think their friends are bad for them or you just want their jeans to actually cover their butts (both girls and boys), this is what I have realised:

These lives are not ours. We are only guardians. Only they are the kings and queens of their lives. And a King or Queen is an absolute ruler.

So I hope that by preparing them for independence and, when they are almost ready, letting go, that they will rule their kingdom wisely. And if they don’t, give me the compassion to forgive myself for letting them choose.

My second hope is this: that when they have tried it on their own, made mistakes, given us grey hair (ok, in my case, more grey hair) let’s pray that it doesn’t take too long for them to realise that it’s ok to seek advice, that they don’t have to do it all alone. All rulers need an advisor. Let’s pray that our act of letting go makes it easy for them to turn to us when they need us.

So I’m going to keep doing those little things to prepare both my girls; get them to tidy up their own toys, let F administer her own meds, let S brush her own teeth. Then as they get bigger, let them do bigger things.

I hope that when the time comes, I can let them go (without giving them a long list of instructions of what not to do).

Dedicated to my parents who brought me up to be smart and gave me the freedom to make my own choices. Some have been brilliant and some have been spectacularly stupid.  Thanks for praising the good and being there during the bad.


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My own Oscars thank you speech

I would like to thank

In Oct 2012 I started my journey of changing my life so that I could do the work I want: supporting others to discover and develop their intrinsic strengths and to live a lighter life, unburdened. A major milestone in this journey has just been reached with my submission yesterday of my written exam for my certification as a Professional Co-Active Coach. I would like to take a moment to thank the people who made it possible.

To F.

From before you were born and they unceremoniously pushed your feet back in and told you “you’re not coming out that way” (ok, maybe that was only unpleasant for me), with your cesarean birth 10 weeks early you have learned that new experiences are painful. You almost dehydrated to death and they spent the first 24 hours poking you with needles, trying to get IVs into your teeny tiny veins and pumping 3 times your body weight in fluids into you to keep you alive.

Even every gentle touch on your preemie skin was unbearable because it wasn’t ready for touch yet (so they asked me not to stroke your cheek). Every day brought more needles, more medical procedures.

Cuddly toys were intriguing but you were punished for your curiosity because touching them would make you shudder, sometimes even vomit.

So many experiences were unpleasant or painful. Yet you still try. You are cautious yet you amaze me with your ability to actually try new things and you blow me away when you jump in with enthusiasm and belief that this new thing could be good.

To S.

No matter how many times you fall you get back up and go again, smiling, full of energy and determination.  Everyone around you can already do these things but that does not dishearten you, that they are better than you. You want to be good too so you keep practising until you get it right, growing each day in your ability to adapt your plans when they don’t work and try a new way to reach your goal. Such determination.

I thank you both for showing me the way:

Dare to try something new, even if experience has taught you that new things aren’t always good.

Keep trying until you succeed.

Above all, do it with grace and laughter. Enjoy it.

To J.

You always believed in me and never faltered in your faith that I could do this. You took up some of my burdens, without me even asking, without fuss, so that I could focus. You listened to my frequent self doubts without rolling your eyes in frustration or disdain (ok, sometimes you did that but only after I had tested your patience to the max).

You put aside your own goals to support mine, yet still managed to find time to actually pursue your goals.  How you managed to do all that I will never know but I thank you for it.

To my clients and fellow certification colleagues

You gave me your trust and let me practice and hone my craft on you. You showed me what is possible when you step into your life with fierce courage.

You have all shown me what happens when you give yourself permission to be yourself, to pursue what you really want and when you realize the strengths that you already have:

ANYTHING IS POSSIBLE