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Chronic illness: the parts we don't talk about


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The blessings of tragedy

Last night I had an opportunity to get to know some fabulous women a little better.

As we each took turns sharing something about ourselves it struck me that there was something we had in common: a pivotal moment of hardship. Something happened that made us re-evaluate our lives.

The result? We became women who choose what we want in our lives.

Consciously choosing to spend our time on things that give us energy.

And possibly more importantly, choosing what we don’t want.

Someone expressed what I secretly hope to achieve with my new business: “I only work with people that I want to work with”. How amazing is that? Thank you for your inspiration, this is what I want to be able to say.

As for the rest of my life, I have been working towards this too.  My life is not filled with lots of people, but the ones who are in it are important to me, that love me and I love them.

The precious time that I have, I want to use for them (and it is precious. About 25% of my waking hours are spent on being a carer).

So the blessing of my tragedy of chronic illness is that I know that time is precious. I don’t waste it. (much)

Now, look back to my 20s I wonder what I was doing with my time and I realise that a I was doing a lot of “filling it”. How tragic.

So now, like the ladies I met last night, I am consciously choosing, fitting the important things in first. And trying not to fill all the gaps in the jar with sand – but trying to leave empty spaces where the air can get in and I can breathe.

for-web-Big-Things-First

thanks Christi for the image

 

p.s while I was looking for images I came across this. Just love it.

buy the damn shoes

 


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It’s all about you

I have to confess, I have been freaking out about my final exam (to become a certified professional coach). I had a fantastic idea to prepare by coaching my own coach. Wow, I was so intimidated that I almost became petrified. This is what was going on in my head: “How dare you think that you can coach this wonderful, amazing woman who has been a fundamental support in everything you have done in the last year?”

I wanted the experience to be amazing for her, I wanted to give her what she has given me. Piling on all these expectations I created such stress for myself that it was almost impossible to speak. While all this was going on in my head, she was fine. She was a great client; open, daring, ready.

It was the best thing I could have done. I learnt what happens when you let your saboteur rule your life; it paralyses you and make you miss what is right in front of you.

She told me:

“It’s not about you or your exam. It’s about the client. Coaching is always about the client”.

You see our examiners are real people with real topics. They sign up for coaching, not just to assess our abilities.

These words helped me to shift my focus from a desire to prove what I know, the skills that I have learnt, into a relaxed state of curiosity about them.

Who is this person and what do they really want?

What do they believe? Is that belief holding them back?

What do they feel? What are they not allowing themselves to feel?

I enjoyed my exam. I met two amazing people and I got curious about them. From that curiosity I slipped into the coaching, like I was gliding through the air, floating. I used the skills I had been taught and some shifts occurred, some kind of transformation.

Now it was only 15 mins of coaching for each client and I will never get to follow up with them. I will never know what happened next. But my intuition tells me something significant happened for them. Now it is up to them to do something with it.

I have to wait a couple of weeks to find out if I passed my exam and I am ok with that. I am still be on this happy cloud of completion; I got here and I did it. The overwhelming feeling I have is satisfaction.

Satisfaction for good coaching.

Satisfaction that I did it. I studied, practised and I did the exam.

Satisfaction that I put aside my saboteur, that voice of doubt and criticism and didn’t try too hard. I trusted myself and my training and danced in the moment.

In this contented state I have been wondering how this event in my life is connected to the bigger picture and to all of you out there who struggle daily with chronic illness, parenting, life. All of you who, at the end of every day, can say “I did it, I lived today.” Deep in my heart is the realisation that this is what we all do: we have ambitions and challenges and we work towards a goal. Sometimes that goal is like the one above, to be competent at my job and really know what I am doing. Sometimes that goal is to get through the day without shouting at my kids. Sometimes the goal can just be to get dressed (my crazy loon friend, you know I’m talking about you again don’t you?). These challenges, pressures, make us stronger, make us who we are.

I found this on Facebook (thanks Ute from expatsincebirth) and it describes how I feel about you guys.

DiamondDedicated to Yasmine, you have always been precious.  The heat is on and we can see you transforming before our eyes.

 


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What’s different about chronic illness, No. 3: Becoming an Olympian of “Accept What You Cannot Change”

I have noticed that lately I have been avoiding writing about what it’s like to live with chronic illness.

At first it was because it was confronting and a bit scary to write it down. It was like it had become REAL all of a sudden, instead of just thoughts. Thoughts, that were like whispers of smoke, that you can send away with a wave of your hand, became solid, hard, here to stay.

Then I told myself “but life with chronic illness is not just about the illness. There is more to our lives”. This is true and I will continue to write about the whole life, not just that one part.

But there was something underneath that.

I had started thinking “who is going to keep reading this?” It’s depressing. It was getting me down. Surely I’m bringing everyone else down too.

Many aspects of life with chronic illness do get you down, wear you out.

Here’s an example.

F has a feeding tube, a Mic-Key button. There is a permanent hole in her stomach, an open wound that can’t close because of this silicone tube that is stuck through it. She needs it but her body knows there is a hole and wants to close it. There is a constant battle.

When she moves, it moves and sometimes it rubs, like the other day when she was playing in the sand with friends and sand got under her t-shirt and into the hole. What can I do? This is The Netherlands! Its almost 90% sand here! (ok, don’t fact check me on that but there is a lot of sand everywhere, you can’t avoid it).

Sometimes gastric acid leaks out and that burns.

Sometimes it just hurts, for no discernible reason.

For the first few years it leaked a lot, which hurt and made the hole bigger, which lead to more leaking, which made it hurt more … you can see where this is going. There was not a lot we could do and no matter what we did, it still hurt.

The frustration is indescribable. Your child is in pain and there is nothing you can do. Even after all this time it makes my heart sink like a stone into my stomach when F says “ow, my mic-key hurts”.

The sinking heart is not about her pain, it is about mine. Inside a voice is screaming to the world “what the hell am I supposed to do?”

I can’t do anything so I don’t really want to hear about it. I try to comfort her, to acknowledge her pain. I take care of it and relieve some of the discomfort but it doesn’t really help.

I think we all have a capacity to cope with the fact that there are horrible things in this world that we cannot change. When chronic illness is involved, there are so many things in life, from the teeny tiny to the big, that we get really good at acceptance. But there is so much opportunity to express this virtue that we use up our reserves of “Accept What You Cannot Change” and we become maxed out.

So one of the ways I try to manage is to hide away from the world news. I even get cross with J when he tells me about some new stupid rule the government are trying to introduce that will make the lives of the vulnerable worse. I get cross and ask him not to tell me. My “Accept What You Cannot Change” reserves are used up and that leaves only “Do Something About It”. And this is where it sucks. I don’t have the energy or the time to take action and “Do something About It” either.

That just leaves frustration.

So I don’t watch the news. I don’t talk about the state of the world or get involved in politics (housemates from Uni, you will not believe this is me). This works for me most of the time, helps keep things manageable.

I feel like I should say that I am working on increasing that capacity – finding patience or something. I will write about that soon, but not today.

I used to think we had the mic-key pain under control now  but I don’t know if that is actually true or if F has just stopped telling us. Today she said that it hurts everyday. Maybe she feels it too – that I’m maxed out and that there is nothing we can do – so she doesn’t say anything until it’s really bad, like that sand the other day. That just makes me cry.

accept what cannot change quote blue

Stoma / g tube care tip: About a year ago we starting using bamboo g tube pads. They are really soft, absorbent and reduce/prevent granulation at the site. We get ours from Patchwork Peddler. The redness, irritation, infection and pain has really reduced since using these. I am not affiliated with this company nor do I gain in anyway from promoting them. The pads are just really good and have drastically reduced the pain. F used to cry at some point every day from the pain at her g-tube. Now she doesn’t.

 

 

 


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On the Brink

Some people say that life is like a roller coaster. Mine is, or rather, what happens inside of me is like a roller coaster. One week content and satisfied and the next, not. As I journey through my life, trying to bring up confident children, trying to create a new career for myself as a coach or just manage to get through the day, I slip and slide between the two.

This week as been a “not” week so here I am On the Brink.

 

Standing on the edge of a very tall cliff.

Strapped to a glider.

Not knowing what I am doing, no one has taught me how.

Yet I am supposed to jump, leap, leave the safety of earth beneath my feet.

And my job is to NOT smash to the ground and crumble.

Stay in the air and get to my destination.

Navigate. Set a course. Live up to expectations.

I am scared to jump yet I have vertigo and standing on this edge is physically painful.

Nausea. Dizziness. Spinning.

It is unbearable to stay here and I must move.

The destination is too far away, I can barely see it.

What can I see? Right in front of me.

Focus on my feet.

Put my fancy shoes on.

Take the first step.

That is enough for today.

Tomorrow will bring another cliff.

 

fancy shoes

 


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The upside of bringing up independent kids

In March I wrote a post about the downside of bringing up independent kids and it was prompted by the fear of letting go and what ifs.

Last week’s post was about my “little leader of her own life”, F, who took charge and went off on a school trip for 2 nights. She’s 6 and a half and she packed her own bags and off she went to Elsloo. There wasn’t any of the faffing about that I sometimes do when I am nervous (do I have everything? what else should I take just in case…?) just methodical and fast.

So this is why independence is so important:

Hard truth: we will not always be there for them so they will have to get on with it at some point in their lives. Surely it is better to prepare them, bit by bit, rather than throw them in at the deep end when they are 18?

More positively: she had an amazing time! She loved it, was happy and felt confident. This is what I want for all my children.

In my work as a coach I see people who are courageously stepping up to live their lives they way they want to.  In this journey, a metaphor I hold in my mind is that in these moments of choice, we are standing on a cliff edge, looking out to where we want to be on the other side of the canyon.  It’s risky, stepping off that cliff and a great quote I heard once is this:

You can't cross a canyon in two leaps

(Photo from francis-moran.com)

Little F was resolute, calm and practical. She prepared and leapt, without hesitation, knowing that she was going to get to the other side. She now wants to move the Elsloo.

 

Update on last week:

We received this card from F last Thursday and I love it because it is full of her character:

F card from Elsloo 1

  • Fairness – everyone is included and named on the card
  • Love of patterns and order – alternating the colours of the letters
  • Love of variety – not all names follow the same pattern
  • Use what you have (my favourite) – the foam letters for her name: they didn’t have all the letters she needed so she made them herself using whatever foam letters were available
  • Accuracy!: below you can see she corrected the card when she got home:

photo

She didn’t miss us so with an exclamation “Oh no, that’s not right!” she crossed out the words “Ik mis je” (I miss you). I burst out laughing.  Sometimes this need for such precision drives me nuts but this time, it was wonderful.

She had a fantastic time and that makes me incredibly happy. She will be ok.


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Writer’s block or silenced in awe?

I’ve been struggling with writers block. I have a lot of thoughts going around in my head yet when I come to write… nothing.

So although I never intend to share photos on this blog, these photos are just saying more than I can. I think they are vague enough that you cannot actually see her face as she is now, and that is important to me.

Despite her sometimes paralysing fear of new situations, F has gone off on a 3 day trip with school.  There will not be any phone calls home and she is ok with that.

She came home from school yesterday and packed her own bag.  Using the “things to bring” list from school, she adapted it for her needs (2 pjs are just not enough so she took 4).

She mumbled that they will probably try and wash her hair and that will be a problem (that’s for a post still be written)

This morning she told us that she was going to miss us and we hugged.  She even gave me a kiss (she hates kisses).

Then she wheeled her suitcase out to the bus and off she went.

I’m in awe. So proud and just can’t get my head around this to even think about all the things I want to say. She’s 6 and a half.

png-4


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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.