amber rahim

Chronic illness: the parts we don't talk about


Tragedy separates, talking connects

When I started this blog I had intended to write about living with my daughter’s and my own chronic illnesses but something happened recently that is so enormously sad that I have been flitting between desperate, immense sorrow and numbness.  It’s been 6 weeks and I have moved out of that now to a more dull place, where feelings are not so sharp.

When I got the news I pulled back from life, sank into myself.  I was with my children all day but I could barely acknowledge their existence.  It hurt to look at them so I didn’t.

Now I can look at my children again and it is with a bitter sweetness that I count my blessings.

Although it is still too raw for me to share in my blog I find I cannot stop thinking about the impact of tragedy, so I will write about mine.  Time does heal and this healing in me makes writing this post possible.

In tragedy, in losing one person, it hurts so much that it is easy to lose the people around you too.

Our daughter almost died at birth and fought for her life for 5 weeks.  For the next two years a cold would lead to a trip to the hospital and random life threatening fevers plagued our winters.  We did not lose her but there is a lot of grief from this incredibly bumpy ride of “will she, wont she (die)?” and tragedy exists.

We each deal with our grief in our own way, often alone, and the distance between us grows.

Before you know it, years have gone by and you look at your husband and think “who are you?”

You see that they have the same look in their eyes.  Two strangers who have shared so much, but not together.

Each walking their path alone, side by side, only looking inwards, never at each other because it hurts too much.

How do you find your way to each other again?

For us we followed the usual routine: spend some time together.  We went out to dinner.  We went for walks through Amsterdam, exploring new neighbourhoods and chatting.  We had a nice time, we rested and it helped us get energy to face the next day with a smile but it didn’t really bring us closer together.

The real connecting happened when we talked about our experiences of our tragedy.

For example, my husband’s experience of the birth was very different to mine (apart from the obvious “he was not giving birth” one).

He was standing up watching a bunch of people cut me open.

I was lying on the table calmly, not feeling anything.

Oh yes, important detail: it was a cesarean, not just random butchery.

I had a wonderful view of the ceiling lights and was sheltered from the horror movie blood and guts (or should I say blood and uterus) by a green curtain.  They don’t let you see your own cesarean and I’m really glad! It’s definitely not something I ever want to see.

So he told me what it was like for him to watch his wife and child in danger, not knowing what was going to happen.

We told each other our thoughts, hopes and fears.  Each different, each equally real.

Something lit up between us.  It’s like there is a thread holding us together which had become very fine and barely visible, fragile.

As we shared, the thread grew thicker, stronger.  It started to glow as if sunshine and warmth were pulsing through it.  I felt a warmth, connection, love that I had not felt for a long time.

Through sharing our tragedy with each other, through putting our experiences into words for the purpose of explaining to the other:

“this is what is was like for me”.

We connected again.  No longer shift workers but friends, partners, husband and wife.


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


Husband and wife or shift workers?

A friend of mine noticed what I guess you could call a freudian slip.  She noticed that in my “about me” page I listed that I am a mother, daughter, sister etc but not wife or partner. (Don’t bother looking now, I have already updated it)

It was not consciously done (and I’m sure Freud would have a field day with that) but it did remind me of something else that happened when I became a carer.

You see, both my husband and I became carers all of a sudden.  We have no medical training but all of a sudden we needed to use needles, figure out how to use a feeding tube without drowning our little baby by accidentally accessing her lungs instead of her stomach, do a physical exam to assess how dehydrated our daughter was etc.  We were thrust into the roles of carer and nurse dividing up the days tasks between us.

In the beginning I was at home so I had the day shift.  My husband would come home from work and I would hand over, which would go something like this:

“Here, you take her.  She’s had her 4 o’clock potassium and needs her next sodium dose at 6 o’clock”.  I’m going to the loo then I’m going to get dinner ready”.

I might even have said, “Hi, how was your day?”  Far too often I was frazzled, covered in vomit and in desperate need of 5 minutes to myself and just said “your turn”.

I would go to bed early and get up for the 3 am rounds.  John would do the midnight and 6 am rounds.  We would both get a bit of sleep.

We were like shift workers, doing our bit then handing over the work load to our colleague.

This doesn’t leave a lot of room for a relationship.  You just don’t have the time or the energy.

It’s not surprising that so many relationships break down in these circumstances.  You need to feed and look after a relationship.  Spend time on it, put some energy into it.  When your every waking moment is consumed with worry, care and a million things that actually do have to be done otherwise someone will become (more) ill, then it is hard to look after your relationships too.

I was barely putting energy into showering.  I really didn’t care what I looked like and dressed in baggy puke stained clothes most of the time (there was a lot of vomiting going on).  Did I take an interest in what he was doing?  Erm, no.

My focus was: how long can we keep her out of hospital this time? and why did we buy a sofa with a fabric cover?  I need wipe clean surfaces – on everything.  I’m never going to get that vomit out.

Let me also clarify – did it matter what I looked like?  Not to my husband, but it is more a reflection of my state of mind.  I didn’t care about a lot of things, I was preoccupied.  I didn’t notice me and I didn’t notice him.

We were barely parents, let alone partners in life.

This has changed.  It has taken a lot of work and I am thankful that my husband is so stubborn that even when I told him to get lost, he didn’t.  It pissed me off no end at the time but I am grateful that he stayed.  I calmed down, we agreed we needed to do something about it.  That was not what we wanted but we needed to make changes.  We needed to remember why we got together in the first place.  We need to reconnect as people who loved each other, who had made this beautiful girl together and who were terrified of losing her.

Stress really tests a relationship.  Sometimes it is too much.   For those of you for whom this has happened, I share your sadness.  It hurts.

Sometimes we hang on, clutching desperately, until we start to get closer together again.

So I don’t know what it means, that I didn’t add that I am a wife or partner.  Maybe writing that first post just took me into the past where I didn’t feel like a wife anymore.  Maybe it’s a sign to myself that it’s getting busy again and that I miss my husband.

Whatever it is, thank you dear friend for mentioning it.  I think I’ll go and make a date with John.

Important note: this post is published with the full knowledge and consent of my husband.  It’s kind of like the EU – if I mention him, he gets veto rights on the blog.


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.


Stupid insurance company, now I need to do press ups for my fingers

It’s 9pm and it’s medicine time again and another opportunity for me to practice patience and letting go of anger.

You see, the 9pm medicine is a tablet.  It comes in tablets of 5mg and I need to give a dose of 2.5mg.  Now, the tablet has a groove down the middle so that you can break it in half and voila!  Correct dose.

We used to get these great tablets that you could just snap in half.  They are only 5mm long but just a small amount of pressure and there you go, two equally sized parts.

Recently our health insurance company changed the list of approved meds and have moved us to a generic.  Nothing wrong with generics but I can’t break this tablet in half.  It is also 5mm but has been set in concrete and no matter what I do, I can’t break it in half.  I need to do press ups for my fingers to get them stronger!  I will conquer this tablet!

Breathe.  Sigh.

So I cut it with a knife.  All you tablet takers out there know what happens right?  Yep.  One large bit.  One small bit. Lots of dust.

So again I pick up the knife to shave down the large bit to the right size and then I throw away the dust and the small bit.

Insurance company take note: this is your cost cutting in practice.  I now use twice as many tablets as before.

Well done.

While I’m at it, Pharmaceutical companies also note: if you say a tablet can be broken in half, then actually make sure that it can be done by normal hands.  Don’t just rely on the freakishly strong fingers of people like my husband.  Test it with normal people.  If you’re making medicine, you are in it for the good of the people right?  Why do only consumer goods companies focus on the end user experience?

Ironically, it’s a tablet meant to reduce blood pressure.