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Chronic illness: the parts we don't talk about

Category Archives: Family


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What’s different about chronic illness No.5: always sicker

Soemtimes it feels like the only reason we have school holidays is so that F can fit in her “get sick” time and not miss school.

Every holiday contains some days of sickness. Every one.

This December was no exception, except that it started with S. She got 5th disease, otherwise known as slapped cheek syndrome.

S was a bit itchy, achy, cried more easily but otherwise was actually kind of okay. I would describe her as being a bit off for a few days.

Then F got it. It just hid her harder. Because she is actually ill almost all the time, any other illness can really put her out of action.

She had to take to her bed, couldn’t keep on playing.

THEN she got impetigo on top. How cruddy is that? (pun intended).

My heart ached and I didn’t know what to say as she cried in bed, not understanding why S only got a bit of a rash but she, F, was sick in bed, with painful, itchy, sores all over her face.

You see, she knows. She sees the difference. She does always get sicker than her little sister. Than anyone else.

And she knows that it means that she has to miss out on fun, playing and parties. Not her brother, Not her sister. Only she misses out.

My heart still aches and I still don’t know what to say to that.

Do you?

holding-hands-mother-and-child2

p.s. she didn’t scratch her impetigo sores, not once. She had them all over her lip and chin, really like a beard. And she didn’t scratch them once. She is my hero.

 


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Come on in, my old friend Self Doubt. Come on in.

Inspired by a session with my coach on how we can shift out of (negative) emotional fields. We all have these thoughts of self doubt, that we are doing it wrong. But we don’t need to stay there. We can invite the feeling in, get to know it and then send it on its way.

Come on in, my old friend Self Doubt. Come on in.

You’ve been knocking on my door for so long. Whispering, and in turn shouting, through the letter box.

No matter how tightly I hold my hands against my ears or how loud I set the telly, I can still hear you.

So come on in. Have a seat. Get warm. Have some tea. Take two biscuits, not just one. Yes we are in the Netherlands but we are flouting the rules anyway by being together like this. Take the whole tin.

So what is that you want to tell me? What must I know?

Yes, I am a terrible mother.

Yes, I am emotionally scarring my children and they will never recover.

Yes, I am not doing all the things I set out to do.

Self Doubt, you keep telling me this as if I don’t know. What is your urgency? Are you trying to keep me away from joy? Are you trying to keep me small, afraid and guilt-ridden?

Well, it’s been working my friend.

But now that I have invited you in I can see you clearly.

You are small and frail. Brittle. Be careful with that tea, it may melt you, turn you into a puddle of ash.

Yes, now that I have invited you in I can see that you are small, not me. You are guilt-ridden, afraid, urgent. Not me.

You look tired. All this banging on doors and shouting through the letter box has tired you out. The anxiety is wasting you away. So let me send you to a wonderful place. A place in the sun, where you can relax. You do not need to speak for there is no one to hear you there.

Go. With my blessing and good wishes, go my old friend Self Doubt. It is time for us to part ways. We do not belong together.

I belong with Self Believe for I am interesting. I am quirky. I am dance.

I am a good mother.

shared.-5


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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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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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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.