amber rahim

Chronic illness: the parts we don't talk about

Tag Archives: Mental Health


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Who’s choosing anyway? Taking control of my life.

I actually wrote this last year but it feels relevant again. After this hectic last 6 months and completing my exam (for those who want to know, I passed!) I really feel like pootling for a bit.

%22You're on your own. And you know what

In the Netherlands there is a motorway that is 5 lanes wide, called the A2.    It was widened to release congestion and the speed is limited to max 100kph.

At non-peak travel times it is funny to see 3 lanes with traffic and hardly anyone is tempted to speed along in the 4th and 5th lanes.  I’m sure the traffic cameras and the speeding fines have something to do with it but I also think it is a part of human nature to follow rules and guidelines.

There is common sense in them.  Slowing down reduces congestion at hot spots.  It’s safer, you’ll get there around the same time anyway, etc.  I kept to the speed limit, I thought I was being a good citizen.

But actually, those aren’t the reasons I kept to the limit.  I kept to the limit because I liked it, it was comfortable and quite frankly, after the series of mega unfortunate incidents in my life in the last few years, I have a very great appreciation that it can happen to you.

I’ve seen death approaching and I don’t want to meet him again any time soon.

Hospitals aren’t much fun either and I have had plenty of opportunities to sample their delights on a regular basis so I don’t need a car accident to bring me there too.

So I mosey down the A2 highway and it feels good.  I’m glad they set that limit because actually I don’t want to go faster than that anyway and the government gave me permission to drive slowly.

On roads where the limit is 120kph I still only want to drive max 100 but somehow I feel pressure to go faster.

One day I was struck by how funny that is.  I am opinionated, decisive and really don’t like being told what to do.  Yet I feel like I should go faster than I want to, just because of a road sign.  That’s when I realised that the reason I like the A2 so much is that I am relying on someone else to give me permission to be how I want to be.  How ridiculous is that?

I could just give myself permission.  I do give myself permission.  Permission to cruise when I want to, to race when I want to, to stand still when I want to.

So the next time you see a slow poke cruising down the road, it might be me.  I’m not trying to get in your way or make you late.  I’m feeling good.

I’m choosing.


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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,(http://www.smarttinker.com) 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

Mondrian_Broadway_Boogie_Woogie

Piet Mondrian: The Gray Tree

Mondrian_gray_tree

Salvador Dali: Swans reflecting elefants

Swans_reflecting_elephants

Fayeq Oweis: No!

no2

Pablo Picasso: Violin and Candlestick

Violin_and_Candlestick

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


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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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Planting the seeds of confidence

This post is going to be a bit different.  It’s not about chronic illness and it’s not about struggle.  Something happened this week that made me happy and I want to share it.

In my first ever post I talked about my journey to finding my daughter, seeing the child behind the illness.  Ever since, I have been doing something more consciously and deliberately.

I have been acknowledging my daughter.  It’s kind of like a compliment but I don’t praise what she has done, I acknowledge who she is.  It goes something like this:

” You know, you are smart, you figure things out.”

“You are funny and cheeky”.

“You are intelligent”.

“Even when you are scared and nervous, you try new things”.

“You know what you want”.

When I first started doing this I was met with shyness, a shake of the head and often an embarrassed “stop! why are you saying this?”

It seemed too much for her and she got embarrassed.  I think this is something we all do when the attention is turned to us and who we are.  It’s so personal and we are not used to it.

As time went by she starting getting used to me doing this.  Then she started to ask me, shyly, to “do that thing, when you say stuff”.  She would smile, my heart would melt and I would oblige.  I was happy, she was happy.

I have been working a lot lately so this last Sunday when I was helping her get ready for the day I took the opportunity to acknowledge her.  It’s been a while.

I started talking and she started smiling.  Confidently.

The she spoke and blew me away.

“I know” she said.

We both grinned and hugged.

I thought “this is beautiful”.

So I have new definitions of beauty (to add to my collection).  Beauty is someone glowing with the confidence of knowing who they are.  Beauty is the connection created between two people when they share this knowing.

And I know that with a simple acknowledgement, by saying “you are …” you can help build self worth.

Yes of course she gets insecure or disappointed in herself but she also knows that she is smart, funny and brave.


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If the illness doesn’t get you, an arrogant doctor will (try)

I just want to preface this post with a statement: the majority of the doctors and health professionals I have met are good.  My daughter’s team are fantastic and are one of the main reasons I will never move away from Amsterdam (and maybe they don’t know this but they are not allowed to move house or change jobs either!)

This post is about that rare health care professional who leaves an impact, who just blows you away.  But not in a good way.  So here’s my story.

The first time that I ever felt defeated it was not because of the demands of the illness, it was because I was face to face with the most idiotic doctor that I have ever met.

At 14 months my daughter had her second operation; to place a PEG feeding tube.  A hole is cut through the  stomach to the outside and tube is inserted and held in place (by the plastic triangle you see in the picture).

PEG

The operation went well and a week later they removed the plaster that was placed underneath the white triangle (I only know what it is called in dutch, plaatje).  It all looked good, no infection so we went home.

At home I noticed that her clothes kept on getting wet.  At first I thought she had spilled something on herself but two clothes-changes later I realised that she was leaking.  It was like a magic trick: her clothes were dry, she drank from her bottle and abracadabra, her T-shirt was wet.  I did all the checks: triangle in place, not too loose; clamp was closed; no holes.  The PEG was ok but she was leaking directly from her stomach!  It is bad enough that her kidneys are leaky but now everything she drank just came straight out again in seconds!

Leaky bucket

How could we stop her dying from dehydration if nothing stayed in?  I know that this cartoon and these words don’t really go together but this illustrates what was happening (and I use humour to deal with almost everything).

I took her to hospital and she was admitted.  It was the weekend so we had to wait hours for the gastro specialist to come.  (A piece of advice – if you are going to get sick and go to the hospital, don’t do it at the weekend.  It’s like a ghost town).

Finally the gastro doctor came to see what this obviously crazy mother (me) was getting her knickers in a twist about.

I explained.  She looked at me like I was a moron and told me “they always leak a little bit in the beginning.  It’s normal.  The hole needs to close a bit and that takes a week or so”.

She wouldn’t listen to me; that is was a flood, not a drip.

She didn’t listen to my explanation about Bartters; that my daughters condition means life threatening dehydration and she can’t afford to “leak” for a week or so.

She patronised me some more and I cried.

She walked away.

I had no words.  I had been dismissed as if I was a panicky, neurotic mother who jumped at her own shadow.

We had survived 14 months of various calamities such as septicemia, frighteningly high fevers, gastritis, weeks in intensive care, non stop vomiting and I had stayed positive and pragmatic.  Now I felt helpless.  I knew that we were going to lose her.  Not because of the illness but because of arrogance and stupidity.

I was not going to let this happen!

I called the nurse and asked her to watch.  My daughter was sitting up and I gave her a drink.  The nurses eyes widened and her eyebrows shot up as my daughters clothes became drenched.  She looked at me with apology in her eyes and dashed off.

Investigations were done.  It turns out that they had cut the hole too big.  We came up with a plan: gauzes, regulate the rate of fluid with the feeding pump, only little sips for my thirsty baby.

It got resolved.  It often does.  But we need to be more than parents, more than carers.  We need to be crusaders, ready to withstand the lashes of disdain and condescension meted out by that special group of arrogant doctors who believe that just because we are parents, we know nothing.  It only takes one doctor like that to crush your spirit.

Most of the doctors at our hospital are great (please don’t ever develop your career and move on, stay here for us!) and my daughter was alright in the end.

But I will never forget the day when that doctor almost killed my baby because she was too arrogant to listen and too stupid to see.

So to all you good doctors and nurses out there I want to say thank you for listening.  We parents sometimes get in the way, ask a lot of questions, insist that you really do just check that again.  It’s our job.  Thank you for knowing that part of your job is to let us be heard.  We are a major part of the care team.


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Taking empathy too far (sharing the pain, literally)

For years now I’ve been thirsty.

I have a dry mouth, I overheat easily and I get headaches.

My skin is dry and flaky.

I get more spots than I ever did as a teenager.

I am an expert in how to hydrate and know all the signs of dehydration.   That’s why I know that I have chronic but extremely mild dehydration.

I know I should drink more, it will make me feel better.

Yet I don’t.

It would be easy to say that I’m so busy looking after my daughter and keeping her hydrated that I don’t have time for myself.  In the first few months, that was probably true.  6 years later I can’t use that excuse.

Thinking about it now, I rationalise that it is helping me to build empathy.  The definition in the Oxford English dictionary is: “the ability understand and share the feelings of another”.  So is it helping me with this?  Well, yes.  I feel rubbish and so does she, so we are sharing.  Although her dehydration is severe while mine isn’t, I can better imagine what it is like for her.  So there is understanding.

Yet while I can understand more I do not understand everything.  How can I?  I’m not her.  I don’t know what this is like for her, through her eyes, her body.  I have never felt so dehydrated that someone saying the word “food” has made me vomit.

So what am I doing?  It makes me crabby.  My head hurts.  I become short tempered.

Why am I doing this to myself?  I have a suspicion that it is deliberate.

I have never actually consciously thought “how can I be hydrated when my baby suffers from chronic dehydration?”

Yet it is like I am punishing myself, denying myself, for being healthy.  It is hard to watch someone you love be in pain, be ill, with no end in sight to the suffering.  Sometimes it is the “chronic” part of the illness that is the worst.  When will it stop?  Never.

There is truth in this, I am deliberately denying myself.

It’s such a passive aggressive thing to do to myself and I am stunned.  I abhor passive aggression.  I would much rather have a heated debate, an argument, let things get messy, than be subjected to the stealth campaign of passive aggression.  If it isn’t out in the open, how can you deal with it?

So this is me bringing it out in the open.  “Hi, my name is Amber and I have been subtly sabotaging myself for the last 6 years”.

Admitting it to you, now, has given me a renewed sense of relief.  Phew.

How did I finally see it?  I have been working with my coach to create my version of a fulfilling life.  To find the courage to take a leap and choose my path, the path that is filled with things that make me feel good, that give me energy, make me happy.  It’s not a stunning path, nor is it amazing to anyone but me.  It is my path.

While walking on this path, I have been practicing opening my eyes and I am amazed at my discoveries.  The most recent one is what I am writing about today: my self sabotage.

I now drink at least one glass of water as soon as I wake up.  This small act alone helps shake off some of the grogginess of a disturbed night and takes some of the puffiness out of my eyes.  (It is the best beauty secret and it’s a secret because it’s practically free.  Rehydrate your skin?  Forget Olay.  Drink some water.  Oh and sometimes have something a little bit salty with it to help get the water into your blood where you need it).

I have days when I succeed and days when I don’t, but I am getting better at taking time to drink regularly, throughout the day.  The way my daughter does.

When I do this, the difference in me is noticeable.  I can focus, I feel less tired. I have energy to be more patient with my children.

Empathy is still important to me but I have finally realised that I do not need to be sick to have empathy for sickness.

And the guilt?  That is still there.  At least the self harming has gone.