amber rahim

Chronic illness: the parts we don't talk about

Category Archives: Mental health


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What’s it like to get what you want?

Since I started writing this blog I have had great feedback from fellow sufferers and just fellows that I know.  There has been concerned curiosity and growing awareness of the reality of my life.

That was my intention and I am grateful.  So why am I finding excuses not to write?

“I’m tired today, I’ll write tomorrow” or “I have to do the laundry”.  Really? The laundry?

What I have come to realise is that I too am becoming aware of the reality of my life.   It’s not the hardest life on this earth but it is hard.

There is a lot of worry and there is so much to do that I get tired just thinking about it.

Yet how did I not know this?  How was I not aware?  I’m writing about it aren’t I?

I put it down to practicality, self protection and normalcy.

Practicality.  It’s my favourite mindset and perspective.  I just get on and do.  I plan, I act, I adjust the plan when it goes wrong.  I share the workload when I can and just get on with doing.

Self protection.  It hurts to think of my daughter being ill.  It hurts deep in my bones, all the way to the soft squidgy marrow.  I don’t like to stay with the hurt so I don’t.  Have I dealt with the hurt?  Yes.  I have had therapy. I’ve contemplated life, the universe and everything.  I know the answer is 42.  But that is the old hurt.  Every now and then there is new hurt.  Experienced by me as I am today, the person I am now, at 37.  Not the me of age 31, when all this started.

I have examined my faith in god and how can such a thing exist in the world.   The only answer I have to that is this: it just does.

I don’t feel guilt.  It’s a genetic illness inherited when both parents happen to be carriers and then only if the both sides pass on the mutated gene (25% chance of that, by the way).  It’s not my fault.

I don’t feel anger at god, at the world or at my husband for daring to carry the same defect as me.

I don’t dwell on how this could happen.  It is.

But there is nothing in this world that will make me feel ok with either of my children being in pain.  I’m not ok with it.  So I move away from it in self protection and for something more.  There is so much more in my life that I do not need to stay here.  It’s just a place to visit.

Normalcy.  This is normal for me.  Medicines, hospitals, constant monitoring for signs of an impending catastrophe.  This has been a dominant part of my life for 6 years so it is just “my life”.

Who thinks about the small details of their lives?

Well, a blog writer does.  So I guess you could say I have been hoist by my own petard.

(I just need to add that I love this phrase!  I have done ever since I first heard it as a child and now I finally get to use it.  Hmm, maybe I should have fallen in love with the phrase “richer than creosus”?)

Writing this post has brought me to this realisation: it’s not until we take a step back from our lives that we actually see what are lives are like.  You can’t see the wood for the trees.  So I invite you to join me and take a step back and look.

What do you see?

I see that my life may be hard, but it is also beautiful.  Deep down, I didn’t just want to share, I also wanted something for myself.   To see this:

Sometimes the beauty of my life is cold and bright like a crisp, sunny winters morning.

Sometimes that beauty is warm and comforting like a hot water bottle and a blanket.

And sometimes, that beauty is rough like a storm that buffets me around, battering at me, until finally it stops and in that calm there is satisfaction in knowing that I held on.  I am still here.  My life is beautiful.


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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.


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The other side of being

I am writing a book and I am stuck.  I want to write about the good, the experiences that keep me going.  Yet every time I sit down to write about these, my mind goes blank.

It is so easy to write about the hard stuff, the painful moments.

I know there have been good moments, achievements big and small, moments that make it all worthwhile and still, it’s like I am frozen.  Unable to even remember them, let alone describe them.  I pick up my pen and nothing.  It is like someone presses pause on my remote control and I haven’t seen this film before so I don’t know what comes next.

So I have been looking for inspiration, a way to unlock those good memories.  I told myself “don’t force it, allow yourself to wander along memory lane and it will come”.  Time has been passing.

Then yesterday my daughter asked me “zullen we een wandeling maken?”  Shall we go for a walk?

It was 6:45pm and she goes to bed at 7:30pm.  It’s a school night and I should have said no but I didn’t.

We put on our coats, grabbed a torch and went outside.

It was drizzly and we talked about the weather.  She thought gloves and a balaclava would be handy considering how cold it was.

She was happy that she had a hood on her coat to pull up and keep her warm and was concerned that I didn’t.

She held my hand to make me feel safe in the dark.

holding-hands-mother-and-child2

I’m still struggling to find words to describe this good feeling but it was good.  Maybe it was the absence of worry.  Maybe it was the simplicity.  Maybe it was the “being”.  We didn’t “do” much, just went around the block.  It wasn’t an adventure and it wouldn’t be on any child’s christmas list but we did it together.  We were.

We walked, we talked, we held hands.  We came home with the satisfaction of a job well done, with a feeling that all was right with the world.  And it was.

I’m not going to try and write about it anymore.  I just want to enjoy it.  Maybe if I let myself just feel for long enough, the words will come.


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The importance of being

People always seem to want to hear the words “I’m ok”, regardless of the situation.

There is a social convention that if someone asks you how you are, you should reply “I’m ok”.  It’s an obligation.  Certainly when you are ill all the time, people get tired of hearing about it so you almost never answer honestly, not even to yourself.  Yet when I heard that my nephew was in a coma, it was different.  I told them “I’m not ok”.  I cried.  I didn’t sob but I couldn’t stop the tears in and I didn’t try to.  Yet I got the question again and at some point I felt that social obligation to say “Yes”.  It was then that I realised that this always happens.

There is some need in me to reassure you that I am alright and there is some need in you to hear it.

I do the same thing.  I ask my daughter and I want to hear her say she is ok, even when it is clear that she is having a bad day.  She has been puking her guts our for hours and I still ask her.  Even when she is in hospital (again) and it took them 40 minutes to get the IV into her (again).  I ask and I want to hear that she is ok.

But what if she isn’t?  Does that change reality?  Will that change what I will do?  No.  I will still give her a hug.  I will still give her comfort no matter what she says because deep down I know that she is not alright.  She is fed up of being sick, she has an IV in her foot and potassium burning through her veins.  It hurts and she just wants to go home.  

It’s at times like these, when we are really suffering, that this social convention moves beyond politeness and becomes a downright lie.

Looking back at some of those moments in my life, this is what I really wanted to say:

“My daughter is in intensive care.  I’m terrified that she will die and I am trying to just breathe.”

“I’ve just been diagnosed with an incurable illness and I am frustrated and annoyed.  Seriously, when will it stop?”

So a few weeks ago I said what I felt, I didn’t lie.  “No, I’m not ok.  My nephew is so ill and we don’t know if he will recover.”  It was a relief to say how I really felt yet after someone asked me for the third time I caved and said “yes, I’m ok”.

But I’m not.  I’m grieving.  I’m sad.  It’s not contagious, so why is it so important for you to hear that I am ok?  Why do you insist, through your gentle concern, that I give you a positive answer?

Let me acknowledge how I feel.

Let me show my sorrow about my nephew, that I don’t know what to do and that I am in tears just thinking about it.

Let me show my frustration because my daughter said “I want to go home” every 15 minutes for 2 days (seriously, day and night) and I couldn’t do anything to help her and I thought my chest would be crushed under the weight of it.

Let me honour these feelings because they are real.  They have as much value as when I say that I feel great, when life is good.

I’m not ok and that is ok.  Don’t ask me to say otherwise.  Accept it.  You do not have to make me feel better.  I release you from any obligation you may feel to cheer me up, to tell me it will be alright.  It might not be and even if it is in the end, right now it isn’t.  Let me feel.

This is not complaining, This is not whining, or wallowing or self pity.  It’s an expression of how I am, right now.

So I say to you “Let me BE.”

I say to myself “let your daughter be.”

For those of you with family and friends affected by Typhoon Haiyan, please take a moment for yourself, acknowledge what you feel and let it strengthen you.  Just be.


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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.


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Parents, you are good

In the interests of privacy, some of the information is going to be vague.  Hopefully the message will be clear.

The reason I started writing this blog is because it is hard enough being a parent but then throw in a long term or servere illness and then it gets crazy hard.

for example, in my first 2 years as a parent, my priorities were:

  1. keep her alive
  2. keep her out of hospital
  3. don’t turn her into a scaredy cat while trying to do 1 and 2 (who wants to live a life of fear, especially inherited fear from your mum who is freaking out?)

There was not a lot of “parenting” going on, and it certainly wasn’t my focus.  Maybe that is being too harsh on myself.  I just wasn’t thinking about parenting at all.

Was I a bad parent?  No.  I did what I needed to do for the sake of my child.

Recently we found out that someone in my family has a serious illness and now they are in a coma.  We don’t know what the future holds for them and none of us knew that there was anything wrong.

The parents are wonderful parents.  They have other children with illnesses.  Their lives were already crazy hard and now it just got harder.

There is so much I want to say to them and this reminds me of why I started this blog.

As a parent, when looking after a child or children with chronic illness, it’s tough.

Most of the time you are a carer more than a parent.  There are so many other things to take care of, arrange, take into account that it’s a miracle if you just have a normal conversation with your kids.  Just a normal “how are you?” as chit chat and not as a request for a status report on the illness.

So what I want to say to all parents is this:

You are a good parent.

No matter what you have forgotten, no matter what you missed, you are good.

No matter what your kids do, you are good.

No one could be a better parent to your kids than you.  You are perfect for them, just as they are perfect for you.

By being human, by being imperfect, you allow them to be human, to be imperfect.  You are enough, just as you are.  They are enough, just as they are.

Being able to accept yourself as you are is the most important gift that you will ever give them.  By giving it first to yourself, you give it to them with all of your heart and they will receive it.

So be kind to yourself, so that your children will be kind to themselves.

If you want others to be happy, practice compassion. If you want to be happy, practice compassion.  Dalai Lama
Read more at http://www.brainyquote.com/quotes/quotes/d/dalailama105551.html#3SRqyiGjlwfczRIz.99