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Chronic illness: the parts we don't talk about


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What’s different about chronic illness No. 4: the risks are high

I write about both the good and the bad that comes with living with chronic illness. Today is unfortunately about the bad.

On Monday we found out that a boy in F’s class at school, whose initial is I, died last week. His illness had taken over and there was nothing more they could do. His parents and the teachers knew it was only a matter of time until it took him. And it took him last week.

F cried and remembered J, another boy from her school who died last year. When she got home she told us she felt wobbly inside thinking about them, thinking that she didn’t want this to happen to her.

I wish I could tell her that it won’t but as I write, the daughter of a friend, who has the same illness as F, is losing kidney function by the week and is almost in stage 4 kidney failure.

Did you know that you can’t tell if your kidneys are failing, unless you test for it? Well, that is until it gets really critical.

This is why we need check ups so often. This is why we need to take her to the hospital if she gets stomach flu and vomits for more than a day.

This risk is always there.

It’s as far away as the sun, and closer than her shadow, all at the same time.

That’s what is different about chronic illness.

 

In memory of I, a sweet soul. Prayers and all our love and compassion to you and your family.

 


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Rare Disease Awareness Day 2014


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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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3 important lessons for happiness in 2014

Happy New Year everyone!  A sincere and heartfelt wish for good health to you all.

I did not expect to write a “new years” themed post but life is full of surprises.

It wasn’t a good start to the year.  By last Thursday (only the 2nd day of the year) it had already become too much for me.

Normally I don’t like to stay up until midnight on New Year’s Eve.  I’m tired most of the time anyway and it just takes me too long to recover these days.  Plus, there’s something about having to stay up that I rebel against.

I stayed up this year as we were with family (it was a lovely evening) but by Thursday morning I was still recovering.  My daughter woke up around 9am feeling ill.  With terrible stomach pains, she was crying and throwing up.  As I tried to comfort her my mind ran through all the things it could be:

  • Stomach bug
  • Bleeding ulcers
  • All that Piri Piri sauce she ate yesterday
  • Bleeding ulcers!
  • Gastritis …. and bleeding ulcers!!!

I have a bit of a paranoia about bleeding ulcers.  You see, she is on a combination of meds that can cause ulcers.  She has already had severe gastritis because of her meds (age 6 months) and she is on an NSAID that is only for short term use (read weeks) because it causes ulcers and she has been on it for 6 years.  Yikes!

It’s a calculated and managed risk.  It saved her life in the early months, kept her out of hospital in the first couple of years and allows her to have a good quality of life now.

However, it is a ticking bomb that may or may not go off.  If she gets an ulcer she won’t be able to take this or any other NSAID for the rest of her life.  Muscle pain and need Ibuprofen?  No can do.  Quality of life?  Seriously affected.

So while all this is going on in my crazy, tired head, and I am trying to comfort her, my poor little girl is crying and asking for Dad (who was temporarily unavailable).

Brimming with frustration and impatience I just wanted to tell her to “stop it, just be quiet”.  (Well, I wanted to shout it actually and there were quite a few exclamations marks in my head too).

I took a breath, explained that her dad would be back in 2 minutes and that I needed to go to the toilet.  Then I left the room.

I stayed in the bathroom for a long time, much longer than necessary.  I put myself in timeout.  Her dad was brilliant with her; kind, patient, loving.  Just what she needed. I am so grateful to him because last Thursday I just couldn’t do it.

So these are my 3 important lessons for happiness in 2014

  1. It’s good to share the load.
  2. It’s better to walk away than say something you would regret
  3. Accept that Mummy time is never at a civilised time of the day (like 9am on a Thursday).  Kids want their mums at stupid o’clock times like 4am on Friday morning.  That’s when they want you to sit with them and hold their hand.  So I did.


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Parents, you are good

In the interests of privacy, some of the information is going to be vague.  Hopefully the message will be clear.

The reason I started writing this blog is because it is hard enough being a parent but then throw in a long term or servere illness and then it gets crazy hard.

for example, in my first 2 years as a parent, my priorities were:

  1. keep her alive
  2. keep her out of hospital
  3. don’t turn her into a scaredy cat while trying to do 1 and 2 (who wants to live a life of fear, especially inherited fear from your mum who is freaking out?)

There was not a lot of “parenting” going on, and it certainly wasn’t my focus.  Maybe that is being too harsh on myself.  I just wasn’t thinking about parenting at all.

Was I a bad parent?  No.  I did what I needed to do for the sake of my child.

Recently we found out that someone in my family has a serious illness and now they are in a coma.  We don’t know what the future holds for them and none of us knew that there was anything wrong.

The parents are wonderful parents.  They have other children with illnesses.  Their lives were already crazy hard and now it just got harder.

There is so much I want to say to them and this reminds me of why I started this blog.

As a parent, when looking after a child or children with chronic illness, it’s tough.

Most of the time you are a carer more than a parent.  There are so many other things to take care of, arrange, take into account that it’s a miracle if you just have a normal conversation with your kids.  Just a normal “how are you?” as chit chat and not as a request for a status report on the illness.

So what I want to say to all parents is this:

You are a good parent.

No matter what you have forgotten, no matter what you missed, you are good.

No matter what your kids do, you are good.

No one could be a better parent to your kids than you.  You are perfect for them, just as they are perfect for you.

By being human, by being imperfect, you allow them to be human, to be imperfect.  You are enough, just as you are.  They are enough, just as they are.

Being able to accept yourself as you are is the most important gift that you will ever give them.  By giving it first to yourself, you give it to them with all of your heart and they will receive it.

So be kind to yourself, so that your children will be kind to themselves.

If you want others to be happy, practice compassion. If you want to be happy, practice compassion.  Dalai Lama
Read more at http://www.brainyquote.com/quotes/quotes/d/dalailama105551.html#3SRqyiGjlwfczRIz.99