amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: Parent support


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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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Planting the seeds of confidence

This post is going to be a bit different.  It’s not about chronic illness and it’s not about struggle.  Something happened this week that made me happy and I want to share it.

In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness.  Ever since, I have been doing something more consciously and deliberately.

I have been acknowledging my daughter.  It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is.  It goes something like this:

” You know, you are smart, you figure things out.”

“You are funny and cheeky”.

“You are intelligent”.

“Even when you are scared and nervous, you try new things”.

“You know what you want”.

When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”

It seemed too much for her and she got embarrassed.  I think this is something we all do when the attention is turned to us and who we are.  It’s so personal and we are not used to it.

As time went by she starting getting used to me doing this.  Then she started to ask me, shyly, to “do that thing, when you say stuff”.  She would smile, my heart would melt and I would oblige.  I was happy, she was happy.

I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her.  It’s been a while.

I started talking and she started smiling.  Confidently.

The she spoke and blew me away.

“I know” she said.

We both grinned and hugged.

I thought “this is beautiful”.

So I have new definitions of beauty (to add to my collection).  Beauty is someone glowing with the confidence of knowing who they are.  Beauty is the connection created between two people when they share this knowing.

And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.

Yes of course she gets insecure or disappointed in herself but she also knows that she is smart, funny and brave.


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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.


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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.


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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: http://www.barttersite.org)

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.

Acknowledgements

Inspired by my daughters and published in honour of William.


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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.