amber rahim

Chronic illness: the parts we don't talk about

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The importance of being

People always seem to want to hear the words “I’m ok”, regardless of the situation.

There is a social convention that if someone asks you how you are, you should reply “I’m ok”.  It’s an obligation.  Certainly when you are ill all the time, people get tired of hearing about it so you almost never answer honestly, not even to yourself.  Yet when I heard that my nephew was in a coma, it was different.  I told them “I’m not ok”.  I cried.  I didn’t sob but I couldn’t stop the tears in and I didn’t try to.  Yet I got the question again and at some point I felt that social obligation to say “Yes”.  It was then that I realised that this always happens.

There is some need in me to reassure you that I am alright and there is some need in you to hear it.

I do the same thing.  I ask my daughter and I want to hear her say she is ok, even when it is clear that she is having a bad day.  She has been puking her guts our for hours and I still ask her.  Even when she is in hospital (again) and it took them 40 minutes to get the IV into her (again).  I ask and I want to hear that she is ok.

But what if she isn’t?  Does that change reality?  Will that change what I will do?  No.  I will still give her a hug.  I will still give her comfort no matter what she says because deep down I know that she is not alright.  She is fed up of being sick, she has an IV in her foot and potassium burning through her veins.  It hurts and she just wants to go home.  

It’s at times like these, when we are really suffering, that this social convention moves beyond politeness and becomes a downright lie.

Looking back at some of those moments in my life, this is what I really wanted to say:

“My daughter is in intensive care.  I’m terrified that she will die and I am trying to just breathe.”

“I’ve just been diagnosed with an incurable illness and I am frustrated and annoyed.  Seriously, when will it stop?”

So a few weeks ago I said what I felt, I didn’t lie.  “No, I’m not ok.  My nephew is so ill and we don’t know if he will recover.”  It was a relief to say how I really felt yet after someone asked me for the third time I caved and said “yes, I’m ok”.

But I’m not.  I’m grieving.  I’m sad.  It’s not contagious, so why is it so important for you to hear that I am ok?  Why do you insist, through your gentle concern, that I give you a positive answer?

Let me acknowledge how I feel.

Let me show my sorrow about my nephew, that I don’t know what to do and that I am in tears just thinking about it.

Let me show my frustration because my daughter said “I want to go home” every 15 minutes for 2 days (seriously, day and night) and I couldn’t do anything to help her and I thought my chest would be crushed under the weight of it.

Let me honour these feelings because they are real.  They have as much value as when I say that I feel great, when life is good.

I’m not ok and that is ok.  Don’t ask me to say otherwise.  Accept it.  You do not have to make me feel better.  I release you from any obligation you may feel to cheer me up, to tell me it will be alright.  It might not be and even if it is in the end, right now it isn’t.  Let me feel.

This is not complaining, This is not whining, or wallowing or self pity.  It’s an expression of how I am, right now.

So I say to you “Let me BE.”

I say to myself “let your daughter be.”

For those of you with family and friends affected by Typhoon Haiyan, please take a moment for yourself, acknowledge what you feel and let it strengthen you.  Just be.


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.


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.


What can you do when you can’t put the glass down?

I read this story below and felt such a great connection to it that I created a page on my blog for it, called “inspire me”.

Author, Unknown:

A young lady confidently walked around the room while leading and explaining stress management to an audience; with a raised glass of water. Everyone knew that she was going to ask the ultimate question, “Half empty or half full?” But she fooled them all… “How heavy is this glass of water?” she inquired with a smile.

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, that’s not a problem. If I hold it for an hour, I’ll have an ache in my right arm. If I hold it for a day, you’ll have to call an ambulance. In each case, it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued, “And that’s the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced.

So, as early in the evening as you can, put all your burdens down. Don’t carry them through the evening and into the night… Pick them up tomorrow.

Whatever burdens you’re carrying now, let them down for a moment. Relax, pick them up later after you’ve rested. Life is short. Enjoy it and the now ‘supposed’ stress that you’ve conquered!”

When looking after someone with a chronic illness or someone with intensive care needs it can seem like you can’t put the glass down, no matter how much you want to.

I was like that for me.  These are thoughts I had all the time:

“If I don’t get up every 3 hours at night to administer the medicine, who else will?”

“She’s my baby so it’s my job to do everything”.

I have been struggling with the advice of the story – which I think is brilliant – and the reality of stuff needing to be done: regularly, intensively and without end.

This is the conclusion I have come to: this story works for us too.

So maybe you can’t put the glass down.  Your arm is aching and the glass is slipping through your fingers but you just can’t put the glass down because someone needs that glass to be held.  So what do you do?

Maybe someone can hold the glass for you, just for a little while.  No?  Ok, I challenge that and I will explain later.

For now I will accept your that your answer is “No”.

This story still works.

If you really can’t let someone hold the glass for you, even briefly, then at least let someone help you to hold the glass.

Someone can help you hold up your arm.  Let them do that while you hold up the glass.

Let them bring you a chair so that you can be comfortable while holding the glass.

Let them guide you to somewhere where you can lean your arm on something and give your muscles a rest.

Someone can help you hold your fingers around that glass to stop it falling out of your tired, cramped fingers.  Maybe they can tape your fingers to the glass, and then keep an eye on them to make sure your blood circulation is still ok.  And feed you.  I mean, your hands are taped to a glass!  How can you feed yourself?

Here’s something important to realise and I didn’t.  I didn’t realise it until my daughter was admitted to hospital just because I was  exhausted and this was the only way to arrange emergency respite care.  My  daughter’s nephrologist who saw me that day said “are you ok?  You don’t look ok.  Let us help you”.  You see, it was an emergency.  I was so exhausted that I just wanted to lay my baby down on her bed and then leave.  Ok, ready for real honesty?  I wanted to throw her on the bed and leave.  To get away from it all.  To find a nice dark place and curl up and stay there.  Forever.  I’m crying just thinking about how weary and exhausted I was.

Maybe you just read that and thought “what kind of mother is she?”  Well, I will tell you what kind of mother I am.  I am a mother that didn’t do that.  I felt like it and I had thoughts induced by sleep deprivation and severe stress of being responsible for keeping my baby alive.

Maybe you read that and there was recognition.  I know I’m not alone in this, that you have these kinds of thoughts too.  That’s why I started this blog.  To talk about the things we don’t normally talk about.  I know I am not the only one who has had that thought and I want to tell you that it is ok.

Feelings and thoughts are just that, feelings and thoughts.  It is ok to have unpleasant thoughts.  They are a sign that something is not ok.  You are telling yourself: you need a break, you need some help.

Thoughts are also not actions.  My actions were: showing that I needed help and then accepting it.  My baby was taken care of and I took care of myself.  I slept.  I went to visit her the next day and I held her and sang to her and didn’t do any of my normal carer activities.  I was just her mum and it was amazing.  Then I went home again and slept some more.  After a couple of days, I took her home again.

I have never had that thought again.

So this is what I realised: you cannot do it all by yourself.  it’s ok to ask for and accept help.

Let someone cook dinner for you, do your washing, get your shopping.  When your friends come to visit, let them make the tea and coffee, and tell them to bring the biscuits too.

People around you want to help.  Let them.  Give them something specific to do and you will both feel better.

Ok, back to my question: can someone else hold the glass for a little while?  YES, yes and again yes.

You do not have to do it alone.  Someone else can hold the glass for you.  You are not a bad parent (or daughter, son or partner) if you don’t do it all yourself.  In a hospital, care home or hospice they don’t do it all themselves.  Each carer works their shift and then they go away and take a break.  For hours.  Can you imagine that?  A break for hours!

If the hospital, doctor, social worker, whoever, if someone offers you respite care or assistance at home: take it.  Check it out, be comfortable with the care offered, get in their face and tell them how to do it if you have to (we certainly did) and then let them take the burden off your shoulders for a bit.  Then breathe.  Deeply and freely and recharge yourself.

If they make a mistake, then educate them.  Tell them “no, not like that, like this”.  Work with them so that they know what to do and how to do it.  Then use the respite care or assistance again.  Then breathe again.

If no one has offered you respite care, go and look for it.  It is out there.  Ask the doctor, specialist, social services at the hospital.  Join a support group and ask them.

Not only is it ok but it is the right thing to do.

It may take some effort to find help but you deserve it.  Your child, parent or whoever you are looking after deserves it too.

Don’t wait until the glass slips or for the emergency hospital admission. Take that step and ask for help now.


Stupid insurance company, now I need to do press ups for my fingers

It’s 9pm and it’s medicine time again and another opportunity for me to practice patience and letting go of anger.

You see, the 9pm medicine is a tablet.  It comes in tablets of 5mg and I need to give a dose of 2.5mg.  Now, the tablet has a groove down the middle so that you can break it in half and voila!  Correct dose.

We used to get these great tablets that you could just snap in half.  They are only 5mm long but just a small amount of pressure and there you go, two equally sized parts.

Recently our health insurance company changed the list of approved meds and have moved us to a generic.  Nothing wrong with generics but I can’t break this tablet in half.  It is also 5mm but has been set in concrete and no matter what I do, I can’t break it in half.  I need to do press ups for my fingers to get them stronger!  I will conquer this tablet!

Breathe.  Sigh.

So I cut it with a knife.  All you tablet takers out there know what happens right?  Yep.  One large bit.  One small bit. Lots of dust.

So again I pick up the knife to shave down the large bit to the right size and then I throw away the dust and the small bit.

Insurance company take note: this is your cost cutting in practice.  I now use twice as many tablets as before.

Well done.

While I’m at it, Pharmaceutical companies also note: if you say a tablet can be broken in half, then actually make sure that it can be done by normal hands.  Don’t just rely on the freakishly strong fingers of people like my husband.  Test it with normal people.  If you’re making medicine, you are in it for the good of the people right?  Why do only consumer goods companies focus on the end user experience?

Ironically, it’s a tablet meant to reduce blood pressure.


One of those days

It’s actually my older daughter that has the chronic illness yet when my younger daughter gets sick I am filled with so much emotion, sometimes I am overcome.

My little toddler got a stomach bug and vomited all over herself in bed.  Quietly.  I didn’t hear a thing and she never cried or called out to me.  When I brought my eldest to bed I smelled it and saw her.  Lying silently, calmly, in bed, covered in smelly puke.  Her calmness was that really wrong kind of calm that means that your baby is really sick and is scared and … I don’t have words.  But if you are reading this blog, you probably know what I mean.

My heart broke.

All sorts of thoughts ran through my head.  How did I not know this had happened?  How sick is she?  What’s wrong with her?  A heat infused me, filling me up, pressure building …. and with practiced ease I capped it, put my feelings aside and gently spoke to her.  Told her I was going to clean her up and quickly grabbed new clothes, a towel, nappy and got the bath ready to wash her in.

When it comes to a vomit covered child, I know what I’m doing. Once you have picked them up, they don’t want you to put them down (and you don’t want to put them down either) and once you’ve picked them up, it’s really hard to grab clean clothes, towels, get the bath ready.

So why do I know what I’m doing?  Experience.

You see, my eldest has vomited almost every day of her life.  Nowadays it might only be once a day but it wasn’t always this good for her.

She has Bartters Syndrome, a genetic disorder of the kidneys that causes chronic and severe dehydration, with a risk of death in babies if not managed properly.  (check out this website for info about this illness:

One of the side effects is vomiting and at its worst, she was vomiting 20 times a day.  Not just spit up, but projectile vomiting going across the room with the speed of a tennis champion’s first serve.  The mess didn’t bother me as I got very good at mess prevention: seeing the subtle signs of imminent puking and then grabbing the nearest cup, glass or container with one hand and turning her just enough so that the angle of projection would be just right…. and I could catch the vomit mid air.

What bothered me was finding my eldest daughter covered in puke in bed.  At night I had to sleep.  I couldn’t keep watch all night yet the littlest cough could trigger a bout of vomiting.  No matter how fast I jumped out of bed and sprinted to her, I didn’t always get there in time.  Most of the time I didn’t even wake up until I was by her bed and I would think “what am I doing here?”

Then I would look down and see this tiny tiny baby blinking away the puke from her eyes or holding them tightly shut if there was too much.  She looked surprised.  Still.  Almost holding her breath as if she was thinking “what happened?  I was sleeping and now this?”

So I would wipe her face, get everything I needed and start the careful process of washing and changing – all the while watchful for signs of more vomiting.  You know sod’s law right?  Guess how many times I had to start all over again before I had even finished getting her cleaned up.  Don’t know?  Well I don’t know either, I’ve lost count.

Why did I even start this story?  Oh yes, I’m having one of those days.

One of those days when the reality of my daughter’s life with a chronic illness weighs me down.  When I see with full clarity the vulnerability of both of my children, of all children.  It’s so real that I can almost touch it.

It’s one of those days when I acknowledge that this is my life too: to watch the suffering of another and I can’t fix it.  This in turn creates frustration and sorrow in me and I am overwhelmed by my own suffering.

It’s one of those days that I go through all this and finally remember this:

I may not be able to fix it, but I can offer comfort.  I can be with them, be present and loving.  I can look them in the eyes, touch their hand, be with them.

I can acknowledge their reality and honour them for living it.


Inspired by my daughters and published in honour of William.


Finding my daughter: the child behind the illness

In taking care of a child with a chronic illness something, seemingly insubstantial, is lost.

The worry

Will she be ok? Will she live a normal life?  Will she be happy?  Will she live?

The worry is clear, solid, like a monolith pressing on your heart.  It is substantial.

The work

Preparing and administering medicine, waking up multiple times at night not because they wake up, but because you need to give medicine, clean up vomit.  The extra washing from a baby that projectile vomits 12 times a day.

The work is heavy, the weight of it builds up and presses you down.  It is solid.

The learning

So how do you insert a nasal gastric tube into the stomach and not the lungs?  How do you get a pill into a baby using a syringe because you need to give it via a feeding tube?
Turning into a nurse and thinking “I never thought I would need to know how to do this” and secretly loving the fact that you know how to handle a syringe.

This you know.
These are real.
They take up time, freedom and energy.  This is a very real loss and you know it.

What caught me by surprise and was the greatest tragedy of my life, was looking at my 2 year old daughter and seeing a person for the first time.  There had been glimpses, moments, along the way where we connected as mother and daughter but it wasn’t until her condition was stable that I could relax and I actually saw her, a person.
Her life was less precarious, the stress was less, the work less intense, she was having good days, feeling good, laughing.  I had time to breathe and breathe deeply; to look and see this is my daughter, my baby.
Looking at her face light up with joy, the mischievous look in her eye, the brilliance of her spirit I wonder: how often have I not noticed?  How often was I too busy with the syringe, trying to keep vomit out of her hair or had turned away once the task was done?  How often have I looked at her and seen only the illness, not her?

This loss often goes unnoticed, and therefore seems insubstantial.  This is the greatest loss.  Losing the one you love when they are right there, with you, wanting to be seen.

I do see my daughter.  I can separate the attention I give her illness and the attention I give her.  She feels it too, although she never mentions it.  I can see it in her eyes.

However, I know that if I don’t do something that gives me energy, if I don’t recharge, have fun, laugh, cry, have time to myself; then I lose her.  I stop seeing.
The illness is always there and is demanding.  It screams for attention and gets it.  Uses up my energy until I am weary.
She doesn’t scream.

So I have learnt to look after myself.  I find a way to have fun, cry, let off steam.  Let someone else care for her, even if they won’t do it as well as I would.  I need it.  I take it.

Then I can see. 

So who is she?
Funny, smart, quick, shy, too hard on herself, cunning, determined, scared.  She is beauty, in all aspects.
She is a person.