amber rahim

Chronic illness: the parts we don't talk about


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How can pink donuts be my downfall?

I have written a lot about how I have dealt with never ending sickness extreme eating problems (i.e. nil by mouth for 5 years).

I think I have written about it with patience, become a little bit wiser through the process.

Well, today I do not feel even remotely wise or patient. Today sucks.

You see, little sisters copy big sisters. In everything. All those quirky eating/non eating habits that I was able to deal with in F, who has the illness and the multitude of reasons why she does that weird stuff, well, they just suck when S does them.

Take donuts. Until recently, F didn’t eat any kind of bread or bread stuff. Yet she was interested in the little sprinkles on pink sprinked donuts.  So what did she do? Pick off the sprinkles.

S loves bread. I mean really loves it (except crusts but hey, she’s a kid). How does she eat donuts? She picks of the sprinkles (and icing because she’s a sugar junky).

Now I don’t want to force either of my kids to eat junky donuts, I really don’t. But I want to shout “just eat the effing donut!”  Sometimes I feel trapped in this circle of weirdness with food and only one of them has the illness!

Can’t catch a break. You’d think it would be easier with the “healthy one”.

Sigh.image

Ok, whingeing session over.

 


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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.

 


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What’s different about chronic illness No. 4: the risks are high

I write about both the good and the bad that comes with living with chronic illness. Today is unfortunately about the bad.

On Monday we found out that a boy in F’s class at school, whose initial is I, died last week. His illness had taken over and there was nothing more they could do. His parents and the teachers knew it was only a matter of time until it took him. And it took him last week.

F cried and remembered J, another boy from her school who died last year. When she got home she told us she felt wobbly inside thinking about them, thinking that she didn’t want this to happen to her.

I wish I could tell her that it won’t but as I write, the daughter of a friend, who has the same illness as F, is losing kidney function by the week and is almost in stage 4 kidney failure.

Did you know that you can’t tell if your kidneys are failing, unless you test for it? Well, that is until it gets really critical.

This is why we need check ups so often. This is why we need to take her to the hospital if she gets stomach flu and vomits for more than a day.

This risk is always there.

It’s as far away as the sun, and closer than her shadow, all at the same time.

That’s what is different about chronic illness.

 

In memory of I, a sweet soul. Prayers and all our love and compassion to you and your family.

 


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5 tips for the caregiving husband. #heforshe

My sister and I were reminiscing the other day about things that happened in our childhood and as she talked I realised that I hadn’t thought about these events – big events – for years. I had never thought “what was that like for everyone else?” I started to see them a new light and it made me wonder what our history with Bartters and chronic illness was like for my husband, J.

The mystery of : what was wrong with our child? The emergency caesarean. All the hospital drama (our very own Greys, but without any of the hook ups). The years of intensive care and so many near misses.

I know what it was like for me.

But dear J, what was it like for you?

What is it like for a man when he finds out that his wife might lose her baby? His baby?

What’s it like to see the business end of a cesarean; cuts through seven layers of her body, edges pinned back while they put their hands in to pick up your little baby saying “grab the other leg”?

What’s it like to leave your wife on her own, barely able to walk to the hospital to visit F, because you need to go back to work? (just to clarify, I wasn’t walking all the way from home, that would be heartless! I was at the Ronald McDonald house next to the hospital).

I do not know what that is like, I can only imagine. I do know this: when you are sick or it is you that has had the baby, everyone knows what is wrong, they know they need to express sympathy of some kind. They do not expect you to come to work.

But the husband? They expect him to come in, be focussed, do their job. Carry on as normal.

Because while they understand the terrible situation you are in and have sympathy, there is still a job to be done.  They give you a day or two of leave and that is supposed to be enough. You might use some of your vacation days too but there is only so much extra leave that you can take before employers start to feel that they cannot rely on you.

So, husband with the wife who needs you and the child who is fighting for her life, what do you do?

You can’t do everything and someone is always going to be disappointed. Rock and a hard place, that’s where you are my friend.

Here are some suggestions, from a woman who has been on the other side, noticing what you have to deal with.

  1. Accept: you can’t do everything. And that’s ok.
  2. Breathe. Deeply. You get cranky and uptight when you do that shallow, upper chest only breathing. If your belly is expanding when you inhale, you are breathing well.
  3. Sleep: take naps. Lack of sleep really compromises your decision making abilities. It just messes up your thinking. I know you are trying to get those extra things done but just tell me you need to sleep and I will make sure you don’t get disturbed.
  4. Choose: don’t do it all. Let some things go. Choose what feels right for you. Make choices you can live with. We (the wives) may not always agree or understand your choices but you can escape us, at least for a while. You can’t escape yourself.
  5. Talk. Man, I don’t know how to stress this enough. Talk to your boss. Talk to us. And when talking to your wife: use simple language (especially at the beginning). We may look calm and rational on the outside but inside we are freaking out. We have no idea what we are doing and are scared. So don’t ask us to figure out what you mean, be obvious and clear. But don’t patronise us because then we will bite your head off. (Ah, there you go back to that rock and hard place)

 

Finally, why do I have the #HeForShe tag on this? Well, this post is also about feminism – the equality for both men and women. When we talk about babies and their illnesses, most of our thoughts go to the mothers and how they deal with it, what support they have. But what about the men? What support do they have? I hope this post highlights that we need to think about them too.

Breathe


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The Art of Lego: (re)visited

A while ago I wrote about the Art of the Brick exhibition. I couldn’t decide if we should go or not.

Well, we went.

It was really great. It’s amazing to see these great pieces of art and sculpture. My thoughts flitted between “oh, so that’s how you do it” (to recreate The Scream with lego) to “how will I ever be satisfied by my own creations ever again?”

S didn’t break any pieces but she did hug the lego man in the play area at the end. And started to build onto him (well, they put lego there to play with! it was hard to stop her).

F loved it. She listened to the audio tapes about the artwork for every piece. Well, she certainly used the device and entered the number for each piece, I don’t know how much of the recording she actually paid attention to.

Sometimes you just need to stop thinking and go and do what your heart desires.

photo-3S is at that age when she really wants to see the picture you have taken, and comes to look before I have even taken the picture. But trust me, it was really cute to see her hug this lego man.

 


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The blessings of tragedy

Last night I had an opportunity to get to know some fabulous women a little better.

As we each took turns sharing something about ourselves it struck me that there was something we had in common: a pivotal moment of hardship. Something happened that made us re-evaluate our lives.

The result? We became women who choose what we want in our lives.

Consciously choosing to spend our time on things that give us energy.

And possibly more importantly, choosing what we don’t want.

Someone expressed what I secretly hope to achieve with my new business: “I only work with people that I want to work with”. How amazing is that? Thank you for your inspiration, this is what I want to be able to say.

As for the rest of my life, I have been working towards this too.  My life is not filled with lots of people, but the ones who are in it are important to me, that love me and I love them.

The precious time that I have, I want to use for them (and it is precious. About 25% of my waking hours are spent on being a carer).

So the blessing of my tragedy of chronic illness is that I know that time is precious. I don’t waste it. (much)

Now, look back to my 20s I wonder what I was doing with my time and I realise that a I was doing a lot of “filling it”. How tragic.

So now, like the ladies I met last night, I am consciously choosing, fitting the important things in first. And trying not to fill all the gaps in the jar with sand – but trying to leave empty spaces where the air can get in and I can breathe.

for-web-Big-Things-First

thanks Christi for the image

 

p.s while I was looking for images I came across this. Just love it.

buy the damn shoes