amber rahim

Chronic illness: the parts we don't talk about


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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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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 Art of Lego

The thing about chronic illness is that it never stops. At times it can feel like those drops of water that carve through rock. Sometimes it creates a stillness in me and words disappear. Silence. Kind of what I have wanted from my kids today (who doesn’t?).

I am also in the mood for some art this week so that’s what this post is about.  Cool art. I saw that there is an Expo starting in Amsterdam tomorrow, The Art of the Brick which is an exhibition of over 70 sculptures made from Lego.

While this is nothing compared to the amazing works of art my kids and I create together (with F usually designing and me usually being the “finder” of all those cool weird shaped but tiny pieces), there are some in the exhibition that are passable.

(And I bet the artist Nathan Sawaya didn’t need finder to dig through all the different colours and sizes for just the right piece. I bet he had them all delivered and sorted exactly how he wanted them. Yes, there is definitely an envious tone to this bit of my post. Lego hurts. When you are digging through that box and especially when stepped on).

Having googled and seen images I now have a dilemma.

A. Go the the expo with my kids and

  1. hope S doesn’t break off a piece so she can play
  2. give F grand ideas about what we can make when we get home

 

B. Stay at home and miss out.

What to do?

In the meantime, here are some that represent the kinds of creations I imagine my efforts produce (and may explain why I actually get upset when the kids break them apart after 3 days. Master pieces ruined!)

We actually had a real one of these in my parents’ shop:

lego till

This is what I think F will want to make:

lego figures

Some art that I just love. How did they do this with those little bricks?

Lego Scream

lego waves

lego girl with earring

 

 

 

 

 

 


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my burn out story

When I burnt out I was traveling at 100 mph being batman; saving my business world from the bad guys and crooks who appeared disguised as project managers and stakeholders; and in my private life, fighting off the evil villain of my daughter’s chronic illness.  I was working harder and harder and doing it with a smile and sometimes a snarl.

Finally, a message came through.  My body finally broke through the wall I had put up in my mind to avoid the truth.  My body is a dirty fighter and hit me hard  with aches and pains and finally, took my mind.  I was tired, cranky and short tempered.  I was forgetful, I couldn’t even remember how to spell forgetful.  I couldn’t sleep.  I was exhausted, worn out.

I had an epiphany. ” I need to stop, take a break before I break”.  I thought I was so smart and that I had realized in time.  Ha! Could I have been more wrong?

So I parked my bat mobile, got ready for a 4 week timeout and …… just stopped.  Everything just shut down.  I could barely function.  I had used up all my reserves and was empty.

It took a long time to start back up again, 1 step forward, 1 step back, a step sideways etc.  I started making progress, recovering, to function.  However I realized that there were some things that I couldn’t do anymore and I feared I was broken.  I felt broken.

You see, I thought that people are like elastic bands; when you stretch them too much, they break and they stay broken.

With my burn out, these are the “elastic bands” that broke:

– multitasking.  It took all my concentration to make a cup of tea.  I couldn’t have a chat with you at the same time.

– being able to take on the intensive 24 hour care of a critically ill baby with just my husband and I to split the shifts over.  (Of course I had been trying to do this perfectly).  A lot more work fell on my husband’s shoulders (sorry dear) because I wasn’t able to do my part.

– Being a superhero. Batman was gone, suit back in the cupboard.  I just didn’t care to fight the bad guys anymore

– Being helpful: saying yes, I’ll fix that / take care of it, you can count on me.  Gone.  I just wanted to tell people to, well, insert your own swear word here.

I really thought I had lost a lot but something strange happened during this mega timeout. I started to see things in a new light.  Those things I mentioned just now?  This is what I like to call them now:

– ” tolerating being overworked”

– ” being taken advantage of”

And

-“not asking for help”

Now that I see these “elastic bands” for what they really are; negative, destructive behaviours.  I am glad they are broken.

Who actually wants to be a superhero, working non stop, taking care of everything? (Never mind having to wear your underpants over your tights).

Who wants to do it all alone?

It was with relief that I realized that people are not like elastic bands, we are organic.  We grow, adapt, learn new things.

New things have taken the place of the things I lost.  These are my new things:

The ability to

– say no.  Or “not now” and fit it into a time when I can do it without adding stress.

– recognize if I am becoming overloaded and getting cranky

take action if that happens and get myself back to feeling good: look after myself

And these two are my favourite:

– letting go

– asking for help

Whatever I am doing, it doesn’t have to be perfect.

I can let someone else do it.  I still think there are a lot of things that I can do better than anyone else – I’m not humble, I admit it!.   But if it means that I can take a break, get other tasks done, just breathe, then it’s worth letting someone else do an average job.  I can live with imperfection if I can just breathe.

So did burn out leave me broken?

Actually, it set me free.  Those restrictive bands have burnt away, leaving me covered in a fertile ash where things can grow. I have grown, improved, become a better me.

I can get more done than ever before because I delegate and share the load.  I accept and ask for help.  I focus on what is important and I’m mindful and do one thing at a time (well, ok, I’m not living a zen life but I do it a lot more!).

I feel happy again, I laugh and I experience joy.  I dream and I expect to make some of those dreams come true.

So people, remember this: we are creative, we are resourceful and we are whole.


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What’s different about chronic illness? No.1: Sickness scale

It’s coming up to Christmas and I am taking 2 weeks off from everything.  My next post will be in January so with heartfelt gratitude I thank you for reading my blog and sharing this with me.

I invite you read my first blog https://amberrahim.com/2013/08/28/finding-my-daughter-behind-the-illness/ and with that spirit, enjoy the beauty of those in your life.  See them for who they are and cherish them.

Enjoy these last 2 weeks of the year and wishing you good health.

Sickness Scale.

My mother once gave me some advice for when your child is ill.  “Sometimes you just need to sit up all night with your children and hold them”.

I have found it to be true.  Sometimes your children are so ill that it comforts you both to do this: your child finally sleeps in your warm embrace and as a parent you are soothed by being able to give comfort.

But how long can you keep this up? One day, two?  Maybe even a week, if you take turns with your partner.  But what if they are sick for weeks, months and you just don’t know how long it will be before they are better?  You want to keep on holding them for as long as they need but when chronic illness is involved, your children are really ill, really often.  Their need for comfort is high and our desire to provide it is strong.

So you try to keep it up, you get tired and eventually a shift starts to happen.  They need to be more sick before you stay up all night.  It gets easier to go back to bed.

Your assessment scale for illness adjusts.

In the beginning they need to be on a 7-8 on the sickness scale to warrant an all nighter.  With a chronically ill child you will do the same.  Sickness level is 7-8?  Ok, stay up all night with them.  It’s the definition of that 7-8 on the sickness scale that changes, not the number.

If they normally throw up about 4 times a day, you notice when they do it 6 times a day and start to get worried at 8.  When they stop playing you know it’s really bad and maybe it’s time to go to the hospital.

(side note: yes, kids can throw up regularly and still carry on playing and having fun. My little champ has been doing it for years.  Well you can’t spend your entire childhood not playing!  Seriously though, I do not know how she does it.)

Your whole view of the world changes.  What’s normal?  What’s worth worrying about?  What’s serious?

From the outside we can seem callous.  “What, your daughter has just been sick and you don’t ask her how she is and give her a hug?”.  No, but I do teach her how to keep it out of her hair and off her clothes and shoes.   This is normal for her.  Do you pick up your toddler every time she stumbles? Or is that just normal?

When people don’t understand, and it is really easy of them to misunderstand, it can isolate you.  I don’t blame them.  When it comes to illness, there is little common ground between you.  With parents who also have a child with a chronic illness or people who themselves are ill, it is different.  It’s why we get on so well, even when we live on other sides of the world.  We share something that many of those around us don’t even know about.  We have a different sickness scale.

So next time you wonder “don’t they care?” or hear me say “she’s doing well”, remember: yes we do care and she is doing well, for her.

Our world is just a little bit different and you need to understand the context: our normal is not the same as your normal.  Take time to see us, really see.  You will see someone who says they are ok but is in pain.  That’s because they are ALWAYS in pain like this.  So yes, they are ok, but they are still in pain.

Take time to understand and let us in.  We want to connect with you.  We want to be understood.  We want to be seen.

So my mother is right.   Yes, I have just admitted that to the world, will I ever hear the end of it? (actually, I am proud to do so).  Sometimes you just need to sit up all night with your children and hold them.


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You know your illness is rare when…

1.  The doctor gives you medicine, hoping for the side effects.

There are no medicines designed for Bartters or Gitelmans Syndromes (B&G).  Every patient is on a mix of medicines known for certain side effects and we hope that you will “suffer” from them.  For example, diuretics can lead to increased potassium levels so most people have to be careful.  Us B&G folk?  That’s what we are hoping for!  We lose potassium like our kidneys are leaky buckets and we’ve got to plug the holes.

2.  Most specialists haven’t even heard of your condition

Sadly, many people with B&G are being treated by physicians who don’t really know that much about these syndromes.  Often you are the nephrologist’s first patient with this condition.  Yay! You get to be a guinneapig!

3.  You know everyone on the FB or Yahoo support groups by name

There just aren’t that many of you in the world.  Genetics Home Reference estimates it at about 1 per million people. How special is that?

http://ghr.nlm.nih.gov/condition/bartter-syndrome

4.  Prognosis is not known.

There is such limited information that they don’t really know what the future holds.  “If you follow your treatment, you will probably be ok”.  Um, hello?  Remember number 1?

Well, to be fair, who does know what the future holds for them?

Bartters Syndrome, the kidney disorder that my daughter has, is a strange illness and pretty young.  It is named after Dr Frederic Bartter who first described it in 1960.

There are some standard treatments but they don’t really know why they work – just that a lot of the times, they do.

We have had 6 very “interesting” years with the first 3 being a relatively experimental approach to finding a good treatment plan.  For the last 3 years her condition has been stabilising so now finally, at the age of 6, she is doing pretty well.

Now we are at the tough choice time.  Do we change anything in her treatment plan?

For the last 4 years we have been giving her potassium and sodium supplements on an hourly basis.  That’s right.  We give her medicine every hour, of every day.  (We are not martyrs to her illness, we use a medical pump at night).  It is tiring for us but we have developed an amazing ability to know when an hour has passed, without looking at a clock.  In my science class at school I couldn’t even estimate when one minute had elapsed.  Now I am a time master.

More importantly though, it interrupts her day.  Can you imagine someone coming up to you 12-14 times a day asking you to stand or sit still?  How she stays so patient with it I do not understand.

She is stable now, so we could change to say, medicine every 2 hours.  But I hesitate.

  1. Can I retrain my brain to this new schedule?  I might actually have to think about what I am doing!
  2. More importantly, what if this de-stabilises her?  Is the potential benefit of fewer interruptions to her day (and ours) greater than the potential risk to her health?

I just don’t know.  I think I’m going to enjoy this feeling of control a bit longer and leave things as they are.


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Ignorance is bliss: so what happens to the bliss once you “know”?

For a while now I have been contemplating the question

“is it possible to experience pure joy once the ignorance of childhood has gone?”

I’m thinking of the phrase “ignorance is bliss” when I pose this question.  We all lose our ignorance as we get older but there is something about chronic illness that brings a lot of knowledge: knowledge of pain and suffering and icky stuff.  Not so conducive to blissful feelings.

I have a draft on this topic and it starts with this:

“when I look at my daughters and their amazing capacity for joy I see a pleasure that comes easily.  A pleasure in a new discovery like what happens when you blow up a balloon and let it go.  In daring to jump and succeeding, or failing and landing on their butts, giggling.  I see and I wonder how they do it.

How do they surrender to the moment completely so that in that moment they are joy?”

I came across this postcard on Facebook the other day (thank you PowerPlug! (Motivational Quotes) ) and I think the answer lies in the first sentence of this quote:

be happy for no reason

They don’t need a reason.  They are just happy, most of the time.

Don’t get me wrong, it’s not all roses.  The thorns are there too.  The tragedy of denial “don’t eat the snail, take it out of your mouth!!!” is an equally vivid, full blown experience.  It is also a wonder and and awesome sight to behold.  the rage followed quickly by the sorrow.  Then, in a blink of an eye, it is gone.  (Yes 3 exclamation marks are necessary; she wasn’t trying to chew it, she was sucking on it.  Excuse me while I heave again).

As adults we have had many experiences, good and bad.  We tend to tone down the joy and try to mute the sorrow.  We have gained knowledge and developed our consciousness.  We have learnt how to choose what we want to study at school, where we want to live, what haircut and clothes etc and these are all fine.  But are they enough?  Do these choices give us a fulfilling life?  Do they make us happy?  I say no, no they do not.

Instead of the usual choices let’s do something different.  Let’s choose how we feel.

Yes I still need to figure out what happens to bliss once you get “knowledge” but today I am choosing to be happy.  For no reason.