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Chronic illness: the parts we don't talk about

Category Archives: parent


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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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Control the fun

The Netherlands won their match on Friday and F watched the game 3 times. Then Monday she rocked up to school in her Brazil football t-shirt (she does have two dutch t-shirts), full of national pride and raving about the footballer who could score goals while flying.

What can I say? Who know what goes on inside her head.

This is a story about this special, quirky girl.

Control the Fun

It’s a strange thing as a parent to watch your child playing and laughing and worrying that they are having too much fun.

Let me explain.

Have you ever laughed so hard that you felt sick and actually vomited? I haven’t but I have come close. But sometimes you see kids get overstimulated, can’t control it anymore and if they have eaten enough sweets and junk food, they barf.

Well imagine that you have a 3 year old who is just running about with her brother (no sweets, no junk food). They are both laughing so hard their faces are turning red. After just 2 minutes, she vomits. Her muscles contract so strongly that she empties out completely.

He doesn’t.

Laughing by itself depletes her potassium levels. Add on the vomiting and you get a major potassium loss. For the rest of us this is ok but for a Bartters’ kid who is teetering on the edge, it’s a fast slide down into the cycle of dehydration and nausea. This tipping out of her precarious hydration balance could keep her sick for a few weeks.

So as you watch, what do you do?

Do you stop her, calm her down? Or do you let her enjoy the moment?

Do you let her hurt herself in the pursuit of happiness and feeling good? In having fun with her brother?

Or do you keep her safe in a life without the heights of joy?

People with chronic illness face these kinds of decisions everyday. In the first few years, we faced this particular decision regularly.

It’s like the lady with the spoon theory says: there’s a limit and you need to make choices.

A dear friend of mine lives with severe chronic pain (gosh, this could be so many of my friends). It can be agony just to have a bed sheet against her skin. Yet she loves to dance. It gives her such an immense joy that she will endure agony and days of not being able to do anything, just to be able to dance like a lunatic at her own birthday party.

If you only see her in the days afterwards you might wonder “why do you do this to yourself? It isn’t worth it”.

But when you see her dancing; the joy on her face, the twinkle in her eye, you know that she is truly living the fullest expression of herself.

The price that she has to pay is just far greater than we have ever had to pay.

So back to the little 3 year old girl. What did you decide?

Did you keep her safe and out of hospital? Or did you let her live a little?

We tried a blend. Sometimes we would make her pause for a bit and then let her carry on but mostly we let her just live.

We learnt an important lesson: it is truly amazing what children can do, the responsible choices they can make, when you trust in them.

She quickly saw the consequences of laughing so hard and learnt to self manage. She knew her boundaries and we supported her. We put a small bucket nearby, let her know that if she needed to be sick then she should do it in the bucket. We had some cold water on standby (her favourite drink). We gently reminded her that pausing, catching your breath can help. She made responsible choices. Sometimes she misjudged but she lived, enjoyed and had fun.

She is amazing.

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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.

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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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38 words

I turn 38 this week yet for some reason I have already been thinking that I was 38 for a year now. I rarely feel my actual age (or even act it) and I like this fluid relationship I have with age. It allows me to avoid the “growing older” drama that society and the media tries so very hard to draw us into. I can find my own dramas all by myself so this is one area of my life where I don’t need any help.

So in honour of this occasion I thought I would try to write something about myself in 38 words. I think it only took me 38 seconds to do it so don’t get your hopes up. The point is, I achieved my goal: 38 words.

(for fellow pedants out there, the title is included in the word count and I count “that’s” as one word. What am I revealing about myself?)

My Life in Thirty Eight Words

Little feet, little toes

Bigger boobs and pointy nose.

That’s the way the outside goes.

Fertile soil for a brain,

Plant the seeds, let it rain.

That’s how I come alive again.

ok, you can’t google images for bigger boobs and planting seeds (well, you can but I wouldn’t) and I’m not very good at drawing so here is a Monet that caught my eye.

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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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The Healthy One

It’s a common occurrence that us parents take more photos of our first born than of all our other children combined.

It’s a combination of novelty, the undivided attention they can get and time (you don’t realise what little time you have in a day until you’ve got more than one kid).

I am no different than anyone else in this respect. My little S is growing up so fast and yet so little of her is captured in photographs or films.

We were going to the park the other day and she was running, her arms by her side and her hands flapping back and forth to help propel her forward. Enjoying her enjoyment I thought this would be great to have on film (then you could see just how cute her running style is) but I realised I didn’t have my phone. Yet another moment that will only be stored in my personal (and dodgy) memory bank, that only I can enjoy.

It reminded me of a clip I have of F as we walked to that same park. She pushed her toy buggy with a “sick” baby doll inside. She was the carer, taking this baby out for some fresh air.

I did have my phone with me that day and I have a great short film of it. In fact I have lots of short films of all the cute stuff she did.

Contemplating the difference in me regarding F and S, I have to acknowledge that in the early years with F it wasn’t just the novelty or time, in fact her care took more time than looking after 3 healthy kids. There was also a sense of urgency in me. An imperative to catch her on film because maybe soon that is all I would have left.

Phew, that was hard to say.

It was almost too painful to look upon her directly, without the filter of a camera in between.

I have always been dimly aware that I felt this way. It’s one of the reasons I crashed so hard when she finally started to be well for more than a few days at a time at the age of 3.

So little S I am truly sorry that I do not have more photos and films of you. Please know that I am not taking you for granted because you are healthy and expecting you to always be there. Because the future is not guaranteed and the angels could take you away just as easily.

You see, I am paying more attention to you. I am trying to focus on being with you now, joining in with you, no barriers. I have learnt something from you both about being a mum. When you look at me I want you do see me, not the camera.

I see you and you are great of spirit.

A clever clown who is sweet and kind.

A tough little lady who cries when she falls off the sofa and lands on her head (seriously, how can we stop this happening without tying you down?) Who then, with determination, goes back on that edge, carefully choosing a safe spot this time.

You are vocal about your displeasure (especially at the sofa for not being as wide as you imagined) and you shine brightly and shimmer with joy when you pat your tummy and say Yummy!

I have finally put photos of you up on the wall. It’s something that you have not noticed but has been a weight on my shoulders.

I do see you.

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