amber rahim

Chronic illness: the parts we don't talk about

Category Archives: bartter syndrome


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What’s it like to get what you want?

Since I started writing this blog I have had great feedback from fellow sufferers and just fellows that I know.  There has been concerned curiosity and growing awareness of the reality of my life.

That was my intention and I am grateful.  So why am I finding excuses not to write?

“I’m tired today, I’ll write tomorrow” or “I have to do the laundry”.  Really? The laundry?

What I have come to realise is that I too am becoming aware of the reality of my life.   It’s not the hardest life on this earth but it is hard.

There is a lot of worry and there is so much to do that I get tired just thinking about it.

Yet how did I not know this?  How was I not aware?  I’m writing about it aren’t I?

I put it down to practicality, self protection and normalcy.

Practicality.  It’s my favourite mindset and perspective.  I just get on and do.  I plan, I act, I adjust the plan when it goes wrong.  I share the workload when I can and just get on with doing.

Self protection.  It hurts to think of my daughter being ill.  It hurts deep in my bones, all the way to the soft squidgy marrow.  I don’t like to stay with the hurt so I don’t.  Have I dealt with the hurt?  Yes.  I have had therapy. I’ve contemplated life, the universe and everything.  I know the answer is 42.  But that is the old hurt.  Every now and then there is new hurt.  Experienced by me as I am today, the person I am now, at 37.  Not the me of age 31, when all this started.

I have examined my faith in god and how can such a thing exist in the world.   The only answer I have to that is this: it just does.

I don’t feel guilt.  It’s a genetic illness inherited when both parents happen to be carriers and then only if the both sides pass on the mutated gene (25% chance of that, by the way).  It’s not my fault.

I don’t feel anger at god, at the world or at my husband for daring to carry the same defect as me.

I don’t dwell on how this could happen.  It is.

But there is nothing in this world that will make me feel ok with either of my children being in pain.  I’m not ok with it.  So I move away from it in self protection and for something more.  There is so much more in my life that I do not need to stay here.  It’s just a place to visit.

Normalcy.  This is normal for me.  Medicines, hospitals, constant monitoring for signs of an impending catastrophe.  This has been a dominant part of my life for 6 years so it is just “my life”.

Who thinks about the small details of their lives?

Well, a blog writer does.  So I guess you could say I have been hoist by my own petard.

(I just need to add that I love this phrase!  I have done ever since I first heard it as a child and now I finally get to use it.  Hmm, maybe I should have fallen in love with the phrase “richer than creosus”?)

Writing this post has brought me to this realisation: it’s not until we take a step back from our lives that we actually see what are lives are like.  You can’t see the wood for the trees.  So I invite you to join me and take a step back and look.

What do you see?

I see that my life may be hard, but it is also beautiful.  Deep down, I didn’t just want to share, I also wanted something for myself.   To see this:

Sometimes the beauty of my life is cold and bright like a crisp, sunny winters morning.

Sometimes that beauty is warm and comforting like a hot water bottle and a blanket.

And sometimes, that beauty is rough like a storm that buffets me around, battering at me, until finally it stops and in that calm there is satisfaction in knowing that I held on.  I am still here.  My life is beautiful.


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You know your illness is rare when…

1.  The doctor gives you medicine, hoping for the side effects.

There are no medicines designed for Bartters or Gitelmans Syndromes (B&G).  Every patient is on a mix of medicines known for certain side effects and we hope that you will “suffer” from them.  For example, diuretics can lead to increased potassium levels so most people have to be careful.  Us B&G folk?  That’s what we are hoping for!  We lose potassium like our kidneys are leaky buckets and we’ve got to plug the holes.

2.  Most specialists haven’t even heard of your condition

Sadly, many people with B&G are being treated by physicians who don’t really know that much about these syndromes.  Often you are the nephrologist’s first patient with this condition.  Yay! You get to be a guinneapig!

3.  You know everyone on the FB or Yahoo support groups by name

There just aren’t that many of you in the world.  Genetics Home Reference estimates it at about 1 per million people. How special is that?

http://ghr.nlm.nih.gov/condition/bartter-syndrome

4.  Prognosis is not known.

There is such limited information that they don’t really know what the future holds.  “If you follow your treatment, you will probably be ok”.  Um, hello?  Remember number 1?

Well, to be fair, who does know what the future holds for them?

Bartters Syndrome, the kidney disorder that my daughter has, is a strange illness and pretty young.  It is named after Dr Frederic Bartter who first described it in 1960.

There are some standard treatments but they don’t really know why they work – just that a lot of the times, they do.

We have had 6 very “interesting” years with the first 3 being a relatively experimental approach to finding a good treatment plan.  For the last 3 years her condition has been stabilising so now finally, at the age of 6, she is doing pretty well.

Now we are at the tough choice time.  Do we change anything in her treatment plan?

For the last 4 years we have been giving her potassium and sodium supplements on an hourly basis.  That’s right.  We give her medicine every hour, of every day.  (We are not martyrs to her illness, we use a medical pump at night).  It is tiring for us but we have developed an amazing ability to know when an hour has passed, without looking at a clock.  In my science class at school I couldn’t even estimate when one minute had elapsed.  Now I am a time master.

More importantly though, it interrupts her day.  Can you imagine someone coming up to you 12-14 times a day asking you to stand or sit still?  How she stays so patient with it I do not understand.

She is stable now, so we could change to say, medicine every 2 hours.  But I hesitate.

  1. Can I retrain my brain to this new schedule?  I might actually have to think about what I am doing!
  2. More importantly, what if this de-stabilises her?  Is the potential benefit of fewer interruptions to her day (and ours) greater than the potential risk to her health?

I just don’t know.  I think I’m going to enjoy this feeling of control a bit longer and leave things as they are.


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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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Taking empathy too far (sharing the pain, literally)

For years now I’ve been thirsty.

I have a dry mouth, I overheat easily and I get headaches.

My skin is dry and flaky.

I get more spots than I ever did as a teenager.

I am an expert in how to hydrate and know all the signs of dehydration.   That’s why I know that I have chronic but extremely mild dehydration.

I know I should drink more, it will make me feel better.

Yet I don’t.

It would be easy to say that I’m so busy looking after my daughter and keeping her hydrated that I don’t have time for myself.  In the first few months, that was probably true.  6 years later I can’t use that excuse.

Thinking about it now, I rationalise that it is helping me to build empathy.  The definition in the Oxford English dictionary is: “the ability understand and share the feelings of another”.  So is it helping me with this?  Well, yes.  I feel rubbish and so does she, so we are sharing.  Although her dehydration is severe while mine isn’t, I can better imagine what it is like for her.  So there is understanding.

Yet while I can understand more I do not understand everything.  How can I?  I’m not her.  I don’t know what this is like for her, through her eyes, her body.  I have never felt so dehydrated that someone saying the word “food” has made me vomit.

So what am I doing?  It makes me crabby.  My head hurts.  I become short tempered.

Why am I doing this to myself?  I have a suspicion that it is deliberate.

I have never actually consciously thought “how can I be hydrated when my baby suffers from chronic dehydration?”

Yet it is like I am punishing myself, denying myself, for being healthy.  It is hard to watch someone you love be in pain, be ill, with no end in sight to the suffering.  Sometimes it is the “chronic” part of the illness that is the worst.  When will it stop?  Never.

There is truth in this, I am deliberately denying myself.

It’s such a passive aggressive thing to do to myself and I am stunned.  I abhor passive aggression.  I would much rather have a heated debate, an argument, let things get messy, than be subjected to the stealth campaign of passive aggression.  If it isn’t out in the open, how can you deal with it?

So this is me bringing it out in the open.  “Hi, my name is Amber and I have been subtly sabotaging myself for the last 6 years”.

Admitting it to you, now, has given me a renewed sense of relief.  Phew.

How did I finally see it?  I have been working with my coach to create my version of a fulfilling life.  To find the courage to take a leap and choose my path, the path that is filled with things that make me feel good, that give me energy, make me happy.  It’s not a stunning path, nor is it amazing to anyone but me.  It is my path.

While walking on this path, I have been practicing opening my eyes and I am amazed at my discoveries.  The most recent one is what I am writing about today: my self sabotage.

I now drink at least one glass of water as soon as I wake up.  This small act alone helps shake off some of the grogginess of a disturbed night and takes some of the puffiness out of my eyes.  (It is the best beauty secret and it’s a secret because it’s practically free.  Rehydrate your skin?  Forget Olay.  Drink some water.  Oh and sometimes have something a little bit salty with it to help get the water into your blood where you need it).

I have days when I succeed and days when I don’t, but I am getting better at taking time to drink regularly, throughout the day.  The way my daughter does.

When I do this, the difference in me is noticeable.  I can focus, I feel less tired. I have energy to be more patient with my children.

Empathy is still important to me but I have finally realised that I do not need to be sick to have empathy for sickness.

And the guilt?  That is still there.  At least the self harming has gone.


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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.