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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.

run_away

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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Why 13 hour TV marathons are ok in my house

As much as I agree that television and electronic gadget time should be limited, I find myself turning to that magic box, TV, on a regular basis.  You could say it saved my sanity on more than one occasion.

Take this weekend.  I let F do a 780 minute TV marathon on Sunday.

Why would I do such a thing? Well, have you ever read the “spoon theory“? Christine Miserandino explains the limitations that people with various chronic illnesses live with. It’s really good so if you haven’t read it yet click the link.

It was King’s Day in the Netherlands this weekend and on Friday all schools held the “King’s Games”. It’s a fantastic initiative to celebrate with sport. F loved it. She was really active all day at school and came home wanting to play outside until it was dark. On Saturday she was starting to wilt but was full of enthusiasm for picnics, playing and chinese roasted chicken (who doesn’t love this?) and although it was King’s Day we kept the activities light. But not light enough. It was difficult for us to have to rein in her fun and we didn’t do a very good job of it. Maybe she would be ok. How would we know what her boundaries were if we didn’t let her test them?

This is where the spoon theory comes in. She had used up all her spoons. In F’s case, her spoons are potassium (K) and sodium chloride (NaCl). Unlike the rest of us, her kidney’s don’t hold on to the K and NaCl so when she is active, she depletes the stores in her body, making her weak and nauseous.

She awoke at 3:30am on Sunday, unable to sleep and starting to vomit in a “normal for her when she is coming down with something or has overdone it” way. Despite holding her on my lap and being with her for an hour she couldn’t go back to sleep. I couldn’t stay awake without getting cranky so I told her she could play in bed but that I needed to go to sleep. Wise that she is, she let me go.

The TV marathon started at 8am and was only interrupted by bouts of vomiting and going to the loo.  The magic box did it’s work of distracting and entertaining and by the afternoon she perked up enough to nibble on crisps and raisins.

By 9pm, after hanging out on my bed for awhile (me reading, her still watching telly) I told her to close her eyes and go to sleep. My booked finished, I moved her to her own bed.

Yes there are better ways to distract and entertain even really sick kids but TV works for F.  Big plus: it is easy for me. Yes, yes, yes, I am a mum and I chose “easy” over “best for my child”.

I accept that I have double standards (I would never let S do this) but it came down to this: I was tired and I wanted something that would work.  So I make these choices that in isolation don’t look good. Ok, even in the big picture this one doesn’t look good (13 hours!). But it fulfilled a need – of F to rest, be entertained and be distracted from the nausea and for me to have an easy day. I guess I had used up my spoons too.


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What’s different about chronic illness? No.2: Disturbance

On Tuesday evenings a nurse comes to our house to look after F so that J and I can go out. We mostly go together and sometimes we each go our own way with friends. You know, try to have a social life.

This Tuesday I came home to find her on her chair in her room, wrapped up in her quilt. Eyes closed. Disturbed. Her bed was wet and so the bedding was being changed.

I stepped into the room to help out and the only thing she said was “can I go back to bed?”

Every night around this time we get her out of bed to take her to the bathroom. Due to Bartters Syndrome she pees so much that, even with super absorbent night pants, we can’t keep her clothes or bed dry without this nightly trip out of bed (and sometimes not even then).

I often wonder what it is like for her, to never be able to sleep through the night undisturbed. Never.

I think I got a bit of an answer when I saw her there on the chair, eyes closed.

We delight in the beauty of the


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The downside of bringing up independent kids

I have written before about bringing up kids who are independent, make their own decisions, are self sufficient. It’s a good thing. Yet sometimes it’s not.

As other MoBs (mothers of bartterskids) know, we are also teaching our children how to manage their illness. This can involve life or death decisions.

We know that one day we need to let go and let them make their own choices. They need to strike out on their own, solve their own problems and not involve us in the process. We hope that when that time comes, we have done enough that they know how to make good choices for themselves.

Yet humans do not always make good choices. It is always at the back of my mind that one day F will stop taking her meds. This terrifies me and the for the sake of keeping her well, alive even, I could violate her right to choose and force it on her. But that only works short term and legal independence comes at the age of 18 and what do I do then? Or what happens when I am gone? I want her to look after herself so that means she has to do it. So I need to let her make her own decisions.

So what if she does something stupid and ends up in hospital? What if she hurts herself?

I do not know what I will do but it is inevitable that both my children will make choices I don’t agree with, do things that I think (and know) will hurt them.

This dilemma that we face drives me nuts – we want them to be independent but we want them to do what we say!

What do we do?

Whether your child is ill and doesn’t take their medicine or is in trouble and doesn’t accept the help that is offered; or you think their friends are bad for them or you just want their jeans to actually cover their butts (both girls and boys), this is what I have realised:

These lives are not ours. We are only guardians. Only they are the kings and queens of their lives. And a King or Queen is an absolute ruler.

So I hope that by preparing them for independence and, when they are almost ready, letting go, that they will rule their kingdom wisely. And if they don’t, give me the compassion to forgive myself for letting them choose.

My second hope is this: that when they have tried it on their own, made mistakes, given us grey hair (ok, in my case, more grey hair) let’s pray that it doesn’t take too long for them to realise that it’s ok to seek advice, that they don’t have to do it all alone. All rulers need an advisor. Let’s pray that our act of letting go makes it easy for them to turn to us when they need us.

So I’m going to keep doing those little things to prepare both my girls; get them to tidy up their own toys, let F administer her own meds, let S brush her own teeth. Then as they get bigger, let them do bigger things.

I hope that when the time comes, I can let them go (without giving them a long list of instructions of what not to do).

Dedicated to my parents who brought me up to be smart and gave me the freedom to make my own choices. Some have been brilliant and some have been spectacularly stupid.  Thanks for praising the good and being there during the bad.


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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.