amber rahim

Chronic illness: the parts we don't talk about


Maybe I don’t get to keep this life

So just recently, I made my friend, who just finished her chemo for great cancer, cry.

And for good measure, I made myself cry too.

You see, we are working on a project together about compassion and hugs. Given our respective painful pasts with illness, we think there is too little in the world and we want there to be more.

She couldn’t see how others would relate to her so I told her what I saw (and yes, the tears are coming again).

She had a life, with her family and friends and then cancer came along, threatening it all. Because cancer can kill. We don’t really say that anymore but it’s true.

Death, that constant companion to us all but who we ignore like that really smelly fart in an elevator (we all know it’s there, it’s unpleasant but we all pretend it doesn’t exist).

A cancer diagnosis brings death back into the picture and we realise

Maybe I don’t get to keep this life that I have.

As much as it brings tears to my eyes to type this, and all of a sudden my nose is really snotty, I need to say this

we don’t know what we are going to have tomorrow. And we can’t do anything about the past. We can only change now. So whether you are doing the laundry, paying bills, or are on holiday

Enjoy it!

Find something you like in the activity you are doing, no matter how small, and focus on that. Grow it and enjoy it.

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39 words for 39 years

Once a year I make a deliberate effort to create something that is more poetry than prose. Why? To challenge myself to do something different. And because I can.

My aim? To mark my birthday by saying something about myself in exactly the number of words that represent my age. Unlike last years creation, the title is not included in the word count this year.

 39 words for 39 years

Post baby body, the changes, the scars,

finally accepted.

Self consciousness dissolving along with my youth,


Committed to my family yet choosing for myself,

guilt free.

Clarity of the soul blossoms though I become fuzzy around the edges


I think this picture sums up my approach to life right now.



Make the ordinary come alive

I know, comparing yourself or your life to others is the first step on the road to dissatisfaction and frustration yet sometimes I do compare. Or notice the differences.

Perhaps I am just fooling myself, but “noticing the differences” feels better, more innocent, even a touch scientific. There’s a clinical detachment with “noticing”.

Ok, I’m getting distracted. What have I been noticing?

It’s the school holidays and as usual we don’t have a lot planned. While there is an underlying spirit of freedom, going with the flow, living spontaneously, there is a seed of doubt: are we just too tired to put some effort into it? It’s hard enough figuring out what we are going to have for dinner let alone plan exciting adventures that all the kids will love.

Try to find something that a 13 year old boy, a 6 year old girl and a 2 year old toddler will all like and can do at the same place. And that doesn’t cost a fortune. (Leave tips in the comments)

But when you have swings, climbing frame and a football… Everyone is happy. So although there are so many amazing things we could be doing while on holiday, most of the time we are playing in the garden.

While I was noticing how our activities are always super simple and wondering if I was shortchanging my kids, a dear friend of mine sent me this (and saved me):


I don’t know who wrote this but I like it. I love it. It is at the heart of me and everything I believe about life. Sometimes I forget but when you appreciate and value what you already have, life is extraordinary.


Dusting off my soul

I have been all over the place this week: great heights and deep lows. I have been inspired and moved to write some good blogs yet it’s wednesday evening and I can’t bring myself to publish any of those posts.

I got introduced to the artist Piet Mondrian this week. Firstly by a wonderful friend Lana,( whose passion, to develop children as learners so that they can face anything life throws at them, is inspiring. Secondly by my brother in law Andy, who keeps his sanity with grace even though he lives with 4 of my female relatives (his wife and kids, my sister and nieces for those of you had a “say, what?!” moment there).

There is just something about art that lifts us out of the compactness of our lives and into a bigger space. A space where we can just be. We can appreciate or criticise. We can absorb or reflect. Most importantly for me, it takes us out of ourselves.

We often often forget about art, especially when the responsibilities of parenting and care-giving pile up on us, leaving us with little time to stand still. So I want to share some art here that I looked at today and invite you to stand still. No comment from me, just the artist and the pictures. I hope it brings you something. Share your thoughts in the comments. Or not. Take a moment out of yourself, maybe go and look at some more art.

“The purpose of art is washing the dust of daily life off our souls” Pablo Picasso.

Piet Mondrian: Broadway Boogie Woogie


Piet Mondrian: The Gray Tree


Salvador Dali: Swans reflecting elefants


Fayeq Oweis: No!


Pablo Picasso: Violin and Candlestick


Last thing to say:  dear William, I am glad you are home.


What can you do when you can’t put the glass down?

I read this story below and felt such a great connection to it that I created a page on my blog for it, called “inspire me”.

Author, Unknown:

A young lady confidently walked around the room while leading and explaining stress management to an audience; with a raised glass of water. Everyone knew that she was going to ask the ultimate question, “Half empty or half full?” But she fooled them all… “How heavy is this glass of water?” she inquired with a smile.

Answers called out ranged from 8 oz. to 20 oz.

She replied, “The absolute weight doesn’t matter. It depends on how long I hold it. If I hold it for a minute, that’s not a problem. If I hold it for an hour, I’ll have an ache in my right arm. If I hold it for a day, you’ll have to call an ambulance. In each case, it’s the same weight, but the longer I hold it, the heavier it becomes.” She continued, “And that’s the way it is with stress. If we carry our burdens all the time, sooner or later, as the burden becomes increasingly heavy, we won’t be able to carry on.”

“As with the glass of water, you have to put it down for a while and rest before holding it again. When we’re refreshed, we can carry on with the burden – holding stress longer and better each time practiced.

So, as early in the evening as you can, put all your burdens down. Don’t carry them through the evening and into the night… Pick them up tomorrow.

Whatever burdens you’re carrying now, let them down for a moment. Relax, pick them up later after you’ve rested. Life is short. Enjoy it and the now ‘supposed’ stress that you’ve conquered!”

When looking after someone with a chronic illness or someone with intensive care needs it can seem like you can’t put the glass down, no matter how much you want to.

I was like that for me.  These are thoughts I had all the time:

“If I don’t get up every 3 hours at night to administer the medicine, who else will?”

“She’s my baby so it’s my job to do everything”.

I have been struggling with the advice of the story – which I think is brilliant – and the reality of stuff needing to be done: regularly, intensively and without end.

This is the conclusion I have come to: this story works for us too.

So maybe you can’t put the glass down.  Your arm is aching and the glass is slipping through your fingers but you just can’t put the glass down because someone needs that glass to be held.  So what do you do?

Maybe someone can hold the glass for you, just for a little while.  No?  Ok, I challenge that and I will explain later.

For now I will accept your that your answer is “No”.

This story still works.

If you really can’t let someone hold the glass for you, even briefly, then at least let someone help you to hold the glass.

Someone can help you hold up your arm.  Let them do that while you hold up the glass.

Let them bring you a chair so that you can be comfortable while holding the glass.

Let them guide you to somewhere where you can lean your arm on something and give your muscles a rest.

Someone can help you hold your fingers around that glass to stop it falling out of your tired, cramped fingers.  Maybe they can tape your fingers to the glass, and then keep an eye on them to make sure your blood circulation is still ok.  And feed you.  I mean, your hands are taped to a glass!  How can you feed yourself?

Here’s something important to realise and I didn’t.  I didn’t realise it until my daughter was admitted to hospital just because I was  exhausted and this was the only way to arrange emergency respite care.  My  daughter’s nephrologist who saw me that day said “are you ok?  You don’t look ok.  Let us help you”.  You see, it was an emergency.  I was so exhausted that I just wanted to lay my baby down on her bed and then leave.  Ok, ready for real honesty?  I wanted to throw her on the bed and leave.  To get away from it all.  To find a nice dark place and curl up and stay there.  Forever.  I’m crying just thinking about how weary and exhausted I was.

Maybe you just read that and thought “what kind of mother is she?”  Well, I will tell you what kind of mother I am.  I am a mother that didn’t do that.  I felt like it and I had thoughts induced by sleep deprivation and severe stress of being responsible for keeping my baby alive.

Maybe you read that and there was recognition.  I know I’m not alone in this, that you have these kinds of thoughts too.  That’s why I started this blog.  To talk about the things we don’t normally talk about.  I know I am not the only one who has had that thought and I want to tell you that it is ok.

Feelings and thoughts are just that, feelings and thoughts.  It is ok to have unpleasant thoughts.  They are a sign that something is not ok.  You are telling yourself: you need a break, you need some help.

Thoughts are also not actions.  My actions were: showing that I needed help and then accepting it.  My baby was taken care of and I took care of myself.  I slept.  I went to visit her the next day and I held her and sang to her and didn’t do any of my normal carer activities.  I was just her mum and it was amazing.  Then I went home again and slept some more.  After a couple of days, I took her home again.

I have never had that thought again.

So this is what I realised: you cannot do it all by yourself.  it’s ok to ask for and accept help.

Let someone cook dinner for you, do your washing, get your shopping.  When your friends come to visit, let them make the tea and coffee, and tell them to bring the biscuits too.

People around you want to help.  Let them.  Give them something specific to do and you will both feel better.

Ok, back to my question: can someone else hold the glass for a little while?  YES, yes and again yes.

You do not have to do it alone.  Someone else can hold the glass for you.  You are not a bad parent (or daughter, son or partner) if you don’t do it all yourself.  In a hospital, care home or hospice they don’t do it all themselves.  Each carer works their shift and then they go away and take a break.  For hours.  Can you imagine that?  A break for hours!

If the hospital, doctor, social worker, whoever, if someone offers you respite care or assistance at home: take it.  Check it out, be comfortable with the care offered, get in their face and tell them how to do it if you have to (we certainly did) and then let them take the burden off your shoulders for a bit.  Then breathe.  Deeply and freely and recharge yourself.

If they make a mistake, then educate them.  Tell them “no, not like that, like this”.  Work with them so that they know what to do and how to do it.  Then use the respite care or assistance again.  Then breathe again.

If no one has offered you respite care, go and look for it.  It is out there.  Ask the doctor, specialist, social services at the hospital.  Join a support group and ask them.

Not only is it ok but it is the right thing to do.

It may take some effort to find help but you deserve it.  Your child, parent or whoever you are looking after deserves it too.

Don’t wait until the glass slips or for the emergency hospital admission. Take that step and ask for help now.