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Chronic illness: the parts we don't talk about

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Life hack for Nausea

This life hack for nausea is not a list of things that will make nausea go away. If you have Bartters Syndrome, hyperemesis or have had chemo, you’ll probably feel nauseous whatever you do. This is a tip on how to still leave your house and relax, despite knowing that at some point you are going to hurl. It’s going to get a little gross but I know you can handle it.

Nausea can last a long time. F vomited everyday for 5 years. There was no way we were going to stay at home for 5 years and never go out. At the beginning we didn’t even know if there would ever be an end to it. We had to find a way to live normal lives, taking into account that our little girl was going to hurl at some point.

So we came up with this kit:

  • small bucket or container
  • Small bags. Sandwich bags are good, as are smelly nappy bags
  • dry tissues
  • wet wipes
  • Bottle of water

Vomiting is gross so the wet wipes are going to be handy to clean stuff up. Why both kinds of tissue? Because sometimes a cold wet wipe will make you heave and you’ll want something dry.

Why the bucket? The one thing worse than the smell of vomit is the feel of it inside a bag. So put the bag in the container and be sick in the container. This works really well for kids too; it’s much easier for them to hold and aim into than a paperbag. Once you or your kid is done, just tie up the bag. Bonus! The smell is contained until you can find a bin (really handy for when you are in the car).

What if you get caught out? You are actually feeling good for a change and you think you are past this highly effective exercise for ripped abs. Then something happens and nausea hits you. You don’t have your kit with you. What do you do?

We have taught F to look for a drain or some patch of grass. Your puke will disappear more quickly and be less visible. Never go for tarmac, paving or any other solid, hard surface. Why? One word: splashback.

So this is my advice based on years of experience. My little girl has bitchin abs from hurling and I have a gold medal in catching projectile vomit. We know what we are talking about.

Lana, this post is inspired by you. I hate that you need chemo but I’m glad that my weird bits of knowledge might be able to help you.



Control the fun

The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.



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.