amber rahim

Chronic illness: the parts we don't talk about

Category Archives: chronic illness


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Dutched up: Rocking the clogs expat style

Earlier this year I started hanging out with other bloggers on Facebook. It was great to be among other writers, hear their stories and be on this writing journey with them.

Then one day Olga asked if anyone else wanted to contribute a story about living in The Netherlands to their anthology. Never thinking that my story would be accepted, let alone published, I said yes.

So, after a great amount of work by Lynn and Olga in collecting our stories and editing, our book is finished. 27 bloggers contributed and I am one of them. I am so proud of us all for saying yes and making this happen. Thank you NL women bloggers.

I write about chronic illness so my story is related to the Dutch healthcare system. We have stories covering all parts of life as a foreigner here in Dutchland. It’s funny, it’s sweet. It’s all so true. If you have every lived here, know Dutch people or visited, there is something here for you. Please check it out.

Check it out on amazon.com here

for amazon.co.uk use this link

for itunes click here

book cover


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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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Worthiness

This is the thought that I am working on this week. If you are anything like me, you totally believe it of others but somehow when it comes to you… it’s no longer a conviction but something you would like to believe.

So believe with me. I am worthy.

Worthiness

 

 

 

 


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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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How I realised that “Because I said so” is a life skill

Back in May I wrote a story and shared it with about a dozen people at a Storytelling Night. It’s longer than my normal posts so I kept telling myself that this isn’t the place to share it. Well, I want to share it anyway. If you’ve got a few minutes, read on.

How I realized that “Because I said so” is a life skill

When I saw the post on Facebook about this event I loved it and my first thought was “I’m going to go! As a spectator”. A few seconds later this thought followed “go and read” and before I knew it, I was signing up on eventbrite. There was no reason or explanation. I have never done this before. Just a voice in my head saying: “do it”.

Then I saw the theme. Because I said so. I write about living with chronic illness. I write about self development and how you can get yourself unstuck. What’s that got to do with Because I said so?

I spent the next 2 weeks being completely blank. What story can I tell? And yes, the rules aren’t rigid or strict and I could write about whatever I wanted but….. there is something inside of me that always tries to do what I have been asked.

My default association with this phrase is that is negative. How many times have I yelled this at my kids?

Yes, I patiently explain the logic behind my instructions or involve my kids in the thinking process in how to come up with a conclusive course of action. I want them to be independent, self-sufficient. Leaders, at least of themselves.

Not sheep. Not blind followers of others. Because I want them to choose their lives. And a tiny, terrified part of me that has watched too many episodes of Criminal Minds and that doesn’t watch the news anymore because of all the terrible things that happen, wants them to fight like mad if anyone tries to grab them or do things to them.

I want fighters.

Ok, here’s a confession. I don’t always do that patiently. The explanation. Sometimes I’m having a bad day or they are behaving little brats and pushing all my buttons and the conversation is more like this:

“Put your nickers on.

Come on, move it! How many times do we have to have this conversation?

Stop prancing about and put your bloody nickers on! Now!”

I kind of understand the running around completely naked thing but putting your vest and t-shirt on, even your socks and yet your butt is still bare? What the hell is that?

I have often thought of this tactic, because I said so, as being the last resort of a tired parent. Probably because I only use it when I am tired.

So while I was thinking about what on earth I was doing, signing up for this, I realized something. I had no reason, no explanation. I just listened to a voice in my head that said just do it.

That started me thinking: where else in my life do I do things, just because someone else has said so?

When I was a teenager my mum used to tell me to just get up and dressed by 8am on a Saturday, even if I was going to read in bed all day. Just get up and get dressed first. I never understood it (and fought it a lot) but I get it now. Sorry mum.

It happened at work too. Stopping that project half way through because someone at the top didn’t like it. There was always a lot of blah blah blah around it: “new direction”, “maximize synergies” etc but it always came down to someone new at the top saying no.

And at home. My husband telling me to eat. In my pregnancy with S, I was really sick. At 4 weeks, the vomiting started and didn’t really stop until about a week before she was born.

Within the first trimester I was admitted into hospital 4 times due to dehydration and lack of nutrition. And a kidney stone. I was extremely nauseous and on bed rest. I didn’t feel hunger and didn’t want to eat so I didn’t. So my husband made me snacks and I ate them when he told me to. If he left the food with me, then more often than not, I would stop eating after a couple of bites. So he started staying and I ate. Because he said so.

Then one day he looked at me and told me he was taking me to the hospital. Okay I said. We didn’t have an appointment but he said he was worried so we went.

You see I was vomiting so much that I was on antiemetics. There is one that is safe to use during pregnancy. However a possible side effect is depression and I had sunk so deeply, so quickly. I knew that if I didn’t eat more I could die and I didn’t care. My apathy was complete and I had no desire to change anything. I wasn’t eating, it was dangerous and it was ok.

When he looked at me he saw that in my eyes and he didn’t like it. He told me to put my shoes on and I followed.

They admitted me. I talked to a shrink. I chose to stop taking the medicine and within a couple of days the fog had lifted. The world, which had become hazy, had sharp edges again.

I was still extremely nauseous, but I was ok.

For me there is a power in these words “because I said so”. In that moment, it was the power of protection: you are hurting yourself and I am telling you to stop. No debate. No time wasting. Just stop.

There is also the power of liberation. Take the birth of S. The doctor told me when to push and not push. I was induced and it took quickly. Within an hour I was having contractions less than a minute apart and I was puffing like Thomas the tank engine on speed, trying so hard not to push. I didn’t have time to think and I didn’t know what to do. My first, F, was born via cesarean so I hadn’t done this before.

So I did as I was told: “don’t push, don’t push, don’t push. Ok push”.

I didn’t need to figure it out or make decisions. I could let go of all responsibility and just focus on doing puffing and pushing. What a relief.

I have changed my view on “because I said so” and I have found these 3 things to be true:

ONE

There are times in your life when you just have to listen to someone else. We do not always get to choose: like all those projects that got cancelled. We need to accept and with acceptance, frustration disappears. This is important for the happiness of our children. It’s a skill that they need to learn.

TWO

It is liberation and an act of kindness. How many of you been stumped by this deeply philosophical question: what should we have for dinner today? Some nights, it kills me.

“What? I need to decide everything? Just tell me what you want and I will make it.”

Sometimes we need to be free of the responsibility of making decisions and just have someone else do it.

So it is an act of kindness to my children when I tell them:

“We’re eating spaghetti for dinner today. No discussion”. Or “Time for bed”.

THREE

It is the last resort of a tired parent. Maybe there are times that I need to start the conversation that way.

Because I said so is a life skill.


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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