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Chronic illness: the parts we don't talk about


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“I’m going to runaway!”

Sometimes I let circumstances get the better of me. It happened this week. The details contributing to my mini meltdown are not relevant – could anything justify me exclaiming “that’s it, Im running away!”?

This post is about about what happened next.

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The other day I was feeling pretty lost, tired and steadily being driven nuts by F’s constant interfering in everything I was doing (J, the irony is not lost on me. Taste of my own medicine? Absolutley).

I snapped. I told her I was going to run away. She replied “go on then” (small side note, I am incredibly proud of her response to me).

So that was the start of our role reversal and then this happened…

“If you stop being cross and say sorry then I want you to stay” said F.

…and the role reversal was complete.

My little F, not yet 7, is more mature than I am.

I don’t know what got into me (but there is a definite yearning for some peace, as in, alone time) yet I am grateful that F is so wise, compassionate and willing to stand up to her mum and call me on my silly behaviour.

My conclusion? Our children are better than us.

Yet I don’t feel better than my parents. What’s that about? Am I just at that stage in life where I am stuck in the middle, looking at the greatness that surrounds me? Feeling inadequate, hoping that I am not doing too much damage. Holding on to the idea that “what doesn’t break you, makes you stronger”. (be grateful kids, you’re going to be superheros when you grow up!)

Then we had the most wonderful conversation. We heard each other, we made agreements. We hugged.

Maybe F realises that I am only human. Actually, I think she always knew and loves me anyway. It is I who keeps forgetting my own humanity. Now to start loving myself anyway.

 


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Rare Disease Awareness Day 2014


rdd-logo

28th Feb 2014 was the 7th Rare Disease Day.  I only found out about it this year so although a lot of work has been done (over 1000 events in 70 countries have been held) there is still work to be done.  So this is my first contribution.  Go and have a look at what they have to say (but first finish reading my post ;0).

What is a rare disease?  I wrote about my definition in a previous post and the people at Rare Disease Day have a more scientific definition but when you get to their common problems bit you’ll see the similarities.  Nobody knows much about them.

In addition to the obvious impact of this lack of knowledge there is an underlying problem that we don’t really look at: empathy or rather, the lack of.

Let’s start with my lack of empathy. A few years ago whenever I heard someone talk about their child having a cold or being sick there was a part of me that muttered “oh puh-lease!  That’s nothing.  You have no idea how lucky you are”.

I couldn’t listen to their stories, I didn’t understand what that was like: to see your child healthy one moment and then suddenly change and become sick.  My baby was sick all the time.  I couldn’t relate. I had no empathy for them.

It took a little patience on my part (and isolating myself from other people and feeling pretty alone, to be honest) for me to realise that we do have something in common: being a parent of a child who is sick.

Every parent worries. It’s never nice when your kids are sick.  I don’t mean just the cleaning up the puke and poop. Seeing your child in pain, with a fever, knowing that you have done all you can and you still can’t take away their pain. These are the really crappy moments.

So, although I don’t know what your life is like when your child is healthy and ok most of the time, I do know what it is like to see my child suffer so I offer you my empathy, parent to parent.

In honour of Rare Disease Day I ask you to offer your empathy to all those people who have a rare disease.  You may not know what their disease is or what impact it has on their lives or even how much harder life is for them. But you do know what it is like to get sick or look after a sick child. You can relate, you can empathise.

Let them know that.

p.s. it’s not sympathy we are looking for, just some understanding.


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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.


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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.