11 tips for talking to children about your illness.

(source)

To talk to your kids about your illness, or to not talk to your kids about your illness? This is the question that faces every parent living with chronic illness. Do you tell them? If you do, what do you tell them? Is it better to shield them? Is it better to ply them with chocolate and give them a new Xbox game and pretend this question never came up? Or alternately, ply yourself with chocolate and hide in your bedroom watching repeats of The Walking Dead on your laptop, and pretending that the question never came up?

The reality is that for the most part your kids, no matter how old, already know something isn't right. And in all likelihood they will be creating all sorts of scary scenarios in their head. Kids will fill in the blanks if you don't. And often the filler they create is negative. It's one of those times a kids imagination and creativity can be quite unhelpful. Just because you aren't discussing your illness, doesn't mean they aren't still thinking and worrying about what is going on.

My kids were young when I first became ill. My youngest was 8 and my eldest 11. It was a hard and scary time. I had no idea what was wrong initially. Dealing with the stress of the unknown and my own over-active imagination was consuming most of my waking moments. I thought I was doing a good job of protecting them from my worries and my failing health. What I didn't realise is that kids are always watching and are way more in tune to what is happening around them, than we ever give them credit. Saying "mum's just a bit unwell", and generally minimising things, really wasn't working. But in my own distress, I was simply oblivious to that fact.

Problem was, that whilst I was doing this, my kids had convinced themselves I was dying. Worst of all they didn't want to share their fears with me for fear of stressing me out. Instead, they were quietly worrying themselves sick that I would soon be dead.

When they finally told me, it ripped my heart out. Here was I, thinking that I had protected them from what was going on. But instead they had born a huge burden alone for a long time. If I have ever truly felt like the world's worst mum, it was in that instant. From that moment on I decided to talk openly with my kids about my health. Well okay, that moment may have been preceded by much in the way of tears and gut-wrenching guilt, but once that passed I decided that I wouldn't hide things from my kids again.

Now admittedly, there are aspect of this illness that you can't hide. Passing out for example is pretty hard to cover up. But there is a huge difference between your children being witness to the event and actually discussing what happens and why. If not dealt with, the uncertainty and the unknown feed fear. When it comes down to it, it really is true that knowledge is power.

So what are my main tips?

1.  Be prepared: Working out how to explain your illness and what it means, before the discussion occurs will help greatly. For a complex disorder like Dysautonomia it can be hard to explain at the best of times. If stumped, ask fellow patients how they explain their disorder. There is bound to be an explanation you can use for your situation.

2.  Tailor the information to the age and maturity of your child: The information a child needs, and can process, at 8 is very different to 15 (as my youngest is now). But whatever their age, or level of maturity, there are ways to talk to them. Early on we basically told my kids that I had a heart problem, but the doctors were trying to work out how to make me better. Over the years this has evolved as they have matured. Now at 15 and 18, they want more detail. They know about the autonomic system and the problems I face. They know about my meds and the types of doctors I see and why. We are now open about the whole situation. But it is a process. It is easy to discuss these things now as we have been discussing them in some form or another for 7 years. Each conversation building on the previous ones.

3.  Answer the questions they ask: don't overwhelm them with details unless they ask for them. Take it step by step. Some kids only want simple answers. Others are a sucker for detail. You don't need to overwhelm them with bucket loads of technical information, unless they ask. It can be a weird mindset as a parent, but you have to step back and let them lead the conversation.

4.  Be honest: My two asked me to promise to tell them if something serious was happening. My first reaction as a mum was to protect them. But in agreeing, I gave them a sense of reassurance. They no longer had to lay awake at night worrying if I was hiding bad news from them. If we weren't discussing it, it clearly wasn't an issue.

5.  Conversations can happen anywhere: if there are big issues to discuss, a specific family meeting can be great. But I've have found that most conversations begin when you least expect them. Questions are asked whilst you're making tea, whilst driving, at the checkout, waiting for a movie to start, late at night (mine are big on this, and many discussions have happened at 11pm or later). The important thing is to take the opportunity you are given whenever it happens, and go with it. The timing may be weird or inconvenient, but it is the time your child is finally comfortable and ready to discuss difficult issues. You simply have to go with the flow.

6.  Empower them with solutions: teach your kids what to do if something happens eg what to do if you pass out. This can be a scary time, but if kids know what to do it can alleviate much of the stress for them. Teach them them how to dial 000, 911,999 or whatever the emergency number in your country. Give them a contact person they can trust to ring in an emergency or if they are scared. Simply knowing to bring you water, or a salty snack when you are starting to fade gives them a sense of control.

7.  Include them in the process: Sit down and work out a plan with them. Eg if mum is on the floor and she wont wake up ring 000. If mum wakes up, bring her water, salty snacks, a blanket, keep the dogs off her (a necessity in our house).

8.  Empower them with knowledge: When an illness is chronic there are symptoms which are simply part of your day-to-day. My kids are pretty attuned to what is normal for me now. They know the cues for when I need to sit or lie down and it is all handled with minimal fuss. If I'm cooking tea and getting pale or starting to sway, they grab me a chair and a drink straight away. It's normal. It also means that they can detect when something more serious is going on (eg when I collapsed  last week). When every day is punctuated with symptoms that can be scary and confronting (something I really notice when we have visitors who aren't used to my health issues) knowing what is white noise and what is time for action relieves a lot of tension.

9.  Lead by example: learning how to deal with your own stress and choosing how to live your life, part of which is illness, is vital. Kids learn by example, and as parents we are still the main influence on their lives. If we are consumed by illness and not managing our stress they will also be consumed by our illness and stressed. As mother's we are often taught to put ourselves last. But the reality is that in taking care of ourselves, we are in turn taking care of them. If our kids see us managing in healthy ways they will learn these skills simply by being with us.

10.  Utilise support services for kids: If you are worried that your child isn't telling you what they are feeling or you don't feel confident to discuss these issues there are services available. In Australia, Kids Helpline 1800 55 1800, is a fantastic free telephone and web counselling service for children. Similar services exist in most Western countries. You can provide your children with information about these services and let them ring at need. Family counselling can also be valuable if you want some professional direction and support as to how to discuss these issues. Letting your child's school know about the situation can also be useful. For example, they can provide counselling if needed, or simply alert you to changes in your child's behaviour. We met with our children's teachers and let them know what was going on. Whilst no major issues arose, the teachers appreciated being told and it definitely gave me some peace of mind.

11.  Kids are resilient: This is the final, and in many ways, the most important point. We often underestimate how resilient our kids are. But the one thing I have learnt over the last 7 years is that kids can show an incredible amount of strength and empathy. They surprise me everyday. If they feel loved and supported it is possible to make it through. We can't always protect them from the stressors of life, but we can provide them with the tools to manage them as best as possible.

We have had many ups and downs over the last few years. I wont say that at times it hasn't been stressful or tough. They still worry. I still make mistakes. And things go pear-shaped at times. But overall we are maintaining a reasonable balance in difficult circumstances. Being open with our children has been confronting and hard at times. But that's not unlike many of the issues we have to discuss with our kids as parents. But we can do it. And our children will be the better for it.

Cheers

Michelle :)

Okay I couldn't think of a song about talking I liked, but I do like Talking Heads and my kids love this song and it's parody Psycho Chicken.

Vlogging live from Crazytown

In a moment of insanity I thought that a vlog would be easier to do than a blog post. Rambling at a camera surely has to be easier than trying to combine thinking and typing, right?

Note to self: don't listen to yourself when the dumb is strong. Also avoid playing with sharp objects, hide all hair scissors and don't go near the stove. And for the love of God don't go to the vet and see the cute pictures of the kittens that need a new home. They are like soft furry crack and you come damn close to falling off the wagon.

Anyhoo. Here's the rambling, slurring result of about 6 billion takes. Enjoy.



Alternatively I give you Kate Miller-Heidke's fabulous Facebook Song (does contain swearing)


Cheers
Michelle :)

And yet another shameless plug for votes.
 

Kiddy ER visits, do not a jolly season make.

Well another fun night in an ER. What would the festive season be without sitting next to a guy who's chopped his finger off, an old guy with urinary retention, and an old lady who kept telling the ward she needed to wee at every opportunity. 

Wasn't me for a change. Mind you I could have quite easily requested my own trolley and IV. Actually after this past few weeks a medically induced coma for a couple of weeks wouldn't go astray. I'm pretty sure even Mr Grumpy would go one. I wonder if you can get some sort of couples spa coma package? 

No, this time it was my youngest. 

Watching your 13-year-old child sobbing with excruciating chest pain is not fun. Trying to stop the panic you're feeling, from showing on your face, is damn hard. But you're Mum, and according to the brochure, that's what mum's do. So you suck it back down. Put on your calm face. Tell jokes, and rub foreheads. You exude calm and peace till the cows come home, and then some.

Arghhhhhhhhhhh.......

So off to the ER we went. Singing our own special Christmas tunes of, "you'll be fine", "almost there", "the doctors will sort you out", "try to keep breathing". Whilst simultaneously, the tune, of "Fuck, fuck, fuck, fuck, fuck" played over an over in my mind.

Big shout out to the lovely and friendly ER staff. Makes a big difference in the whole proceedings. After all the waiting and the panicking, it turns out that it is pleurisy (an inflammation between the lining of the lungs and the ribs). Wasn't my first hypothesis, or second, or even 28th. Who get's pleurisy these days? Apparently "more people than you think" according to our Dr Carl. Poor kid. It's not like he hasn't had enough of a rough trot healthwise over the past year. But given the options we'll take pleurisy, and we'll like it.

It was educational for him though. especially listening through the flimsy curtain to the nurse explaining catheterisation to the old guy in the next bed. 'Lidocaine', 'lubricant' and 'penis' are now indelibly inked into his shocked kiddy brain. The look on his face was priceless and it definitely took his mind off his own troubles. Luckily, we made it out of there before old 'Stan' had the actually procedure. 

His main concern was that he was going to miss out on fishing today. Because that's what 13-year-old boys are concerned about. Health shmelth. Don't get between a boy and his fishing rod. He wasn't too happy when the good Dr Carl ruled it out. So now to stealthily find a fishing place locally, that we can take him to when the inflammation settles.

So after 4hrs of tests, worry and a few hundred new grey hairs, we got to drag our exhausted family home. I don't think my pillow has ever looked so good.

Today he's lying on the couch with a heat pad, reindeer antlers, nachos, and his ipod. I'll take that as a good sign. To see him so calm now, it makes last night seem like a bad dream. 

Damn, this motherhood gig is exhausting. 

Finger's crossed there'll be no more ER or doctor visits between now and Christmas, because frankly I'm over it. All of it. Time for a break please.

A totally exhausted and probably incoherent Mum.

Because I wasn't already feeling like a shit mother.

"Well at least you know who to blame", said the arsehole GP to my youngest after going through our (read my) genetic history. Because, apparently I passed on my shit genes on purpose. Because I knew that my faulty DNA was going to cause my children a life of pain. Because I'm a sadistic cow like that. Me and Joan Crawford, best buds in the Mummy Dearest club.

You know what's worse than watching your child in pain and being unable to make that pain go away? Knowing that you're the cause. It doesn't matter one iota that I never chose to pass my crap onto my kids. It doesn't matter that I had no clue about what was going on at the genetic level in my body when either of my kids were conceived. None of that matters.

I've known for a while now that I've passed my health issues onto my kids. I deal with it every day. I lay awake most nights beating myself up about it. Every time I see that little grimace of pain on one of their faces I grab out the mental whip for a good dose of self-flagellation. I sure as hell don't need some bastard with a stethoscope and the bedside manner of Charles Manson to rub salt in the wound.

Sitting, listening to a doctor or physio list off what is wrong with your child's body. Hearing words like "interesting", "special", "surgery", "I've never seen.....", is like being sucker punched again and again and again. Handfuls of referrals to specialists and for scans. A punch in the gut. Prescriptions for pain meds no little body should ever need. Another mental strip for my back.

All of this coming a day after him telling the school nurse not to ring me. Because he didn't want me to be stressed about trying to get to school as I'm unable to drive that far thanks to my own broken body.  Two sublaxed patellae at school and being wheeled to the bus in the school wheelchair, and he doesn't want to stress me. Needing to be carried by his brother up the stairs at home because he can't weight bare  and he's worried about me. Nothing can make that better. Nothing can assuage the guilt.

He shouldn't have to worry about anyone but himself. He should be able to know I'll always be there. I'll always come to get him. That I would slay the dragon and crawl over broken glass, to be with him. Not subjugate his own needs for mine.

And all I want to do is take away his pain. To give him back a childhood without pain and heartache.

But I can't.

So I put on the mask.

And I stuff down the guilt for later. When I can gorge upon it in the privacy of 3am.

I make hot chocolates in pirate mugs. And sit on the couch with him to watch re-runs of Myth Busters. I gather ice packs and crush up pain meds and mix them with honey to make them more bearable. I gather the pillows and make crap jokes. I hug him and tell him that I love him. That we'll get there. And, that it'll be okay.

And I hope that he believes me.

And maybe one day I'll believe it myself.

A Word From Our Sponsor XV

With my heath in the proverbial toilet, posting has been a little slack of late.  I do apologise, but simply standing, especially when combined with the tricky act of breathing, has been challenging the last few weeks.

In.  Out. Stay upright.  In. Out.  Stop swaying.  In. Out.  Grab wall.  In.  In. In. Oh shit........

Fun times.

It appears that Bob was feeling a little ignored and he decided to throw a tantrum to get my attention.  It's worked.  All that screaming, foot stamping and dish throwing has been a little hard to ignore.  If only I could lose myself in a tasty bottle of mummies little helper, but alas that is off the cards at the moment.  I am already doing a fair impression of a slurring, staggering drunk, one little sip and I'll be on my ear, or singing Ke$ha songs.

I've been trying to catch up on some of that pesky blog administrative stuff that I always put off.  I've finally gotten around to writing an About page and added a Contact page.  Please let me know what you think.  If it makes sense.  If I look like a loon.  Or have created a grammar and spelling abomination that would make a unicorn cry.

Still working on updating my Dysautonomia Blogs list so if anyone has a blog about Dysautonomia and wants me to add it in please leave your link in the comments. 

In honour of Mother's Day I have re-edited an old post I did for 12 More Pages back in 2009, on combining motherhood and chronic illness.  It's easy to feel guilty as a mum for all the things we can't do for our children but it's time we gave ourselves a break and realise what's important.

Hope you all have a fantastic Mother's day.

Cheers
Michelle :)

I've been singing this a lot lately.  I'm thinking it would make a good Dear John song for Bob.

Basement Jaxx feat Lisa Kekaula, Good Luck, (2003)

Basement Jaxx - Good Luck on MUZU.

Processing

To  post, or not to post?  That is the question.  It's hard some days to decide what to write about.  How much of yourself do you share?  Are there topics that simply shouldn't be put out there?  I need a Blogging for Dummies, that sets out neatly, the okay and not okay topics.  Not that I'd probably read it.  It would just end up sitting on the table collecting dust and coffee cup stains.  Or end up as another brick in my fall back plan for fame, ie to get onto Hoarders.

I'm pretty much of the school that says sharing stories makes them more bearable.  Blogging as therapy.  I think it works, and it's way cheaper than the regular types.  So often we hide what we think is shameful, or too personal.  I know for myself at times, pushing the 'publish post' button, feels like I'm standing naked in the middle of the crowded room.  Exposing yourself can be a strange melange of pee your pants terrifying and exhilarating.  It can be freeing, as you find others who have shared your experiences and support that comes form unexpected quarters.  And finally those mountains can be seen for the molehills they truly are.  So I'm going to take that plunge once more and hope that if nothing else, it helps me sort through and organise my personal maelstrom of thoughts and emotions.

We all have fears.  Over the last few years I've had new ones crop up.  Ones I never thought I'd have to confront.  I don't usually voice them as, illogically, it feels that to give them voice you give them power and that increases the chance they will become manifest.  Stupid I know.  My practical science background laughs derisively at my foolish illogical side.  But the reality is that voiced or unvoiced they sometimes come true.   Sometimes life is simply completely out of your control and you have to find a way to deal with what comes your way.

As my own health issues have progressed over the past few years a new fear has crept into my mind.  Although Bob is not currently thought of as a genetic disorder, except in very specific forms, it can run in families, as can some of my other health issues, and there is an increased risk of yet other cluster illnesses.  I have spent many a sleepless night worried that some part of my defective genes will be passed onto my children. 

As a mother you have an instinctive drive to protect your children from harm.  Every tear, every disappointment, every hurt, rips out your heart.  Knowing that you may be the cause of that hurt, is more painful than words can describe, and there is no salve.  And that is the path I am now treading.  Over the past year my youngest has been on the doctor roundabout as his young body has started to have problems.  Over the past year I have come to the realization that my broken genes have been passed down to those I hold dearest.

I've had a little pit of fear stewing in my belly.  Every time he has felt nauseous.  Every time he has run to the loo.  Every time he looked pale.  Every time I have seen him limping along.  I have seen a little still from my own teenage movie.  And it has scared me.

Even without a doctors diagnosis I've known for some time that he has developed the same gastric issues I had as a teenager.  The same food intolerances, which are now confirmed by recent tests.  Similarly, I've know that his poor little joints are like my own.  I know the pain he is feeling only to well.  Yet despite all the evidence I have held onto a little glimmer of hope that I was wrong.  That it was indeed "all in my head".  But it was not to be.   And I know that what he (and to a lesser extent my eldest) is experiencing is due to my own faulty DNA.  And the guilt is overwhelming.

I've been good at stuffing those pesky emotions down.  But sitting in the phsyio's office listening to words like "sublaxation" and "bad collagen" has hit me harder than I ever thought possible.  I was totally unprepared.  Those words said out loud about my child, were like a clarion bell.  It was real.  More real than I have allowed myself to believe and it's like I'm now standing under a never ending waterfall of guilt.

I know it's not truly my fault.  As my best friend pointed out (and I am so glad I have her voice of sanity in this matter) it's not like I decided to pass this onto my children.  But it doesn't stop the feelings of guilt, rational or not.  In my good moments I know the truth, but in those other times........ 

A mother's job is to protect her children, and this feels like I have failed on the highest level. I know only too well what it's like to be a teenager with health issues.  What it means physically, socially, and emotionally.  And I think in many ways it makes it better, and conversely, far far worse.  It's a challenge to keep perspective and stop my own baggage from interfering with what I need to do now.  To not transfer my own emotional memories onto his little shoulders.

Last night I strapped his ankles in a vain attempt to keep them in place for his cricket training, knowing full well that it was more placebo than panacea.  I spent the drive back home bawling my eyes out as grief and guilt took turns at beating the crap out of me.

I am in that horrible acute phase, where the the roar of my emotions is deafening.  I have argued irrationally with Mr Grumpy, as my own insecurities and baggage have taken control.  I  have yelled at the dogs and screamed abuse at the washing machine for not washing quickly enough.  Even the discovery of the empty coffee container feels like a deliberate personal attack.  It's my irrational side in all it's glory. 

I want to punch something.  To yell and scream.  Or grab a bottle of tequila and hide under the covers until I can view the world through the same beer goggles that transform the world to hilarity and beauty.  But I'm a mum, and mums don't have that luxury.  We have to hold our shit together.  Stuff down our fears, put on our calm faces and tell them it's going to be alright, even when it's not, even when that little voice inside is screaming in our ear.

There is a creeping fear that this may be indicating the arrival of Bob in his life, but I can't face that just yet.  I'm going to put that one in a box, tie it up in chains, and bury it deep down.  I'm not ready to tread that path.  Though I know that if the time comes, I will.  But until that time I shall say a prayer to every deity known to man that he will not have to take that journey, that I can spare him from at least that burden. 

I know that logically, at the least, I can now find him the help he needs.  I can give him the gift of believing him when he says he is in pain.  I can support him in the multitude of ways that I didn't have as a child, when these disorders were not recognized and the title of hypochondriac was readily bestowed by the medical profession and family alike.  I know the power of a diagnosis.  I am glad that it gives us a starting point from which to tackle these issues.  But none of that changes the fact that I cannot give him the gift of good health.

My own health issues mean nothing in the face of those of my child.  I want to have the magic wand I had when he was little.  Where I could make the monsters disappear with my miraculous mummy super powers.  Where I could kiss his bumps and scratches better.  Where he knew without doubt that I would keep him safe and protect him from the harms of the world. I want to wrap him up in joy and peace, and let him live in a pain-free world. 

So I will take a breath.  I will dry my tears and patch my heart.  I will put on my practical hat.  I will book the appointments.  I will take the steps.  I will don my armor and fight for him.  I will help him find the path to acceptance of his physical limitations.  I will help him discover that his true gifts are not the ability to kick a ball, but lie within his spirit and generous heart.  I will do all in my power to heal and soothe.

And I will try to find that place where I can be okay with all of this.  But at this stage I am still processing.

Michelle