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Chronic illness: the parts we don't talk about

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What’s different about chronic illness? No.1: Sickness scale

It’s coming up to Christmas and I am taking 2 weeks off from everything.  My next post will be in January so with heartfelt gratitude I thank you for reading my blog and sharing this with me.

I invite you read my first blog and with that spirit, enjoy the beauty of those in your life.  See them for who they are and cherish them.

Enjoy these last 2 weeks of the year and wishing you good health.

Sickness Scale.

My mother once gave me some advice for when your child is ill.  “Sometimes you just need to sit up all night with your children and hold them”.

I have found it to be true.  Sometimes your children are so ill that it comforts you both to do this: your child finally sleeps in your warm embrace and as a parent you are soothed by being able to give comfort.

But how long can you keep this up? One day, two?  Maybe even a week, if you take turns with your partner.  But what if they are sick for weeks, months and you just don’t know how long it will be before they are better?  You want to keep on holding them for as long as they need but when chronic illness is involved, your children are really ill, really often.  Their need for comfort is high and our desire to provide it is strong.

So you try to keep it up, you get tired and eventually a shift starts to happen.  They need to be more sick before you stay up all night.  It gets easier to go back to bed.

Your assessment scale for illness adjusts.

In the beginning they need to be on a 7-8 on the sickness scale to warrant an all nighter.  With a chronically ill child you will do the same.  Sickness level is 7-8?  Ok, stay up all night with them.  It’s the definition of that 7-8 on the sickness scale that changes, not the number.

If they normally throw up about 4 times a day, you notice when they do it 6 times a day and start to get worried at 8.  When they stop playing you know it’s really bad and maybe it’s time to go to the hospital.

(side note: yes, kids can throw up regularly and still carry on playing and having fun. My little champ has been doing it for years.  Well you can’t spend your entire childhood not playing!  Seriously though, I do not know how she does it.)

Your whole view of the world changes.  What’s normal?  What’s worth worrying about?  What’s serious?

From the outside we can seem callous.  “What, your daughter has just been sick and you don’t ask her how she is and give her a hug?”.  No, but I do teach her how to keep it out of her hair and off her clothes and shoes.   This is normal for her.  Do you pick up your toddler every time she stumbles? Or is that just normal?

When people don’t understand, and it is really easy of them to misunderstand, it can isolate you.  I don’t blame them.  When it comes to illness, there is little common ground between you.  With parents who also have a child with a chronic illness or people who themselves are ill, it is different.  It’s why we get on so well, even when we live on other sides of the world.  We share something that many of those around us don’t even know about.  We have a different sickness scale.

So next time you wonder “don’t they care?” or hear me say “she’s doing well”, remember: yes we do care and she is doing well, for her.

Our world is just a little bit different and you need to understand the context: our normal is not the same as your normal.  Take time to see us, really see.  You will see someone who says they are ok but is in pain.  That’s because they are ALWAYS in pain like this.  So yes, they are ok, but they are still in pain.

Take time to understand and let us in.  We want to connect with you.  We want to be understood.  We want to be seen.

So my mother is right.   Yes, I have just admitted that to the world, will I ever hear the end of it? (actually, I am proud to do so).  Sometimes you just need to sit up all night with your children and hold them.

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What’s it like to get what you want?

Since I started writing this blog I have had great feedback from fellow sufferers and just fellows that I know.  There has been concerned curiosity and growing awareness of the reality of my life.

That was my intention and I am grateful.  So why am I finding excuses not to write?

“I’m tired today, I’ll write tomorrow” or “I have to do the laundry”.  Really? The laundry?

What I have come to realise is that I too am becoming aware of the reality of my life.   It’s not the hardest life on this earth but it is hard.

There is a lot of worry and there is so much to do that I get tired just thinking about it.

Yet how did I not know this?  How was I not aware?  I’m writing about it aren’t I?

I put it down to practicality, self protection and normalcy.

Practicality.  It’s my favourite mindset and perspective.  I just get on and do.  I plan, I act, I adjust the plan when it goes wrong.  I share the workload when I can and just get on with doing.

Self protection.  It hurts to think of my daughter being ill.  It hurts deep in my bones, all the way to the soft squidgy marrow.  I don’t like to stay with the hurt so I don’t.  Have I dealt with the hurt?  Yes.  I have had therapy. I’ve contemplated life, the universe and everything.  I know the answer is 42.  But that is the old hurt.  Every now and then there is new hurt.  Experienced by me as I am today, the person I am now, at 37.  Not the me of age 31, when all this started.

I have examined my faith in god and how can such a thing exist in the world.   The only answer I have to that is this: it just does.

I don’t feel guilt.  It’s a genetic illness inherited when both parents happen to be carriers and then only if the both sides pass on the mutated gene (25% chance of that, by the way).  It’s not my fault.

I don’t feel anger at god, at the world or at my husband for daring to carry the same defect as me.

I don’t dwell on how this could happen.  It is.

But there is nothing in this world that will make me feel ok with either of my children being in pain.  I’m not ok with it.  So I move away from it in self protection and for something more.  There is so much more in my life that I do not need to stay here.  It’s just a place to visit.

Normalcy.  This is normal for me.  Medicines, hospitals, constant monitoring for signs of an impending catastrophe.  This has been a dominant part of my life for 6 years so it is just “my life”.

Who thinks about the small details of their lives?

Well, a blog writer does.  So I guess you could say I have been hoist by my own petard.

(I just need to add that I love this phrase!  I have done ever since I first heard it as a child and now I finally get to use it.  Hmm, maybe I should have fallen in love with the phrase “richer than creosus”?)

Writing this post has brought me to this realisation: it’s not until we take a step back from our lives that we actually see what are lives are like.  You can’t see the wood for the trees.  So I invite you to join me and take a step back and look.

What do you see?

I see that my life may be hard, but it is also beautiful.  Deep down, I didn’t just want to share, I also wanted something for myself.   To see this:

Sometimes the beauty of my life is cold and bright like a crisp, sunny winters morning.

Sometimes that beauty is warm and comforting like a hot water bottle and a blanket.

And sometimes, that beauty is rough like a storm that buffets me around, battering at me, until finally it stops and in that calm there is satisfaction in knowing that I held on.  I am still here.  My life is beautiful.


You know your illness is rare when…

1.  The doctor gives you medicine, hoping for the side effects.

There are no medicines designed for Bartters or Gitelmans Syndromes (B&G).  Every patient is on a mix of medicines known for certain side effects and we hope that you will “suffer” from them.  For example, diuretics can lead to increased potassium levels so most people have to be careful.  Us B&G folk?  That’s what we are hoping for!  We lose potassium like our kidneys are leaky buckets and we’ve got to plug the holes.

2.  Most specialists haven’t even heard of your condition

Sadly, many people with B&G are being treated by physicians who don’t really know that much about these syndromes.  Often you are the nephrologist’s first patient with this condition.  Yay! You get to be a guinneapig!

3.  You know everyone on the FB or Yahoo support groups by name

There just aren’t that many of you in the world.  Genetics Home Reference estimates it at about 1 per million people. How special is that?

4.  Prognosis is not known.

There is such limited information that they don’t really know what the future holds.  “If you follow your treatment, you will probably be ok”.  Um, hello?  Remember number 1?

Well, to be fair, who does know what the future holds for them?

Bartters Syndrome, the kidney disorder that my daughter has, is a strange illness and pretty young.  It is named after Dr Frederic Bartter who first described it in 1960.

There are some standard treatments but they don’t really know why they work – just that a lot of the times, they do.

We have had 6 very “interesting” years with the first 3 being a relatively experimental approach to finding a good treatment plan.  For the last 3 years her condition has been stabilising so now finally, at the age of 6, she is doing pretty well.

Now we are at the tough choice time.  Do we change anything in her treatment plan?

For the last 4 years we have been giving her potassium and sodium supplements on an hourly basis.  That’s right.  We give her medicine every hour, of every day.  (We are not martyrs to her illness, we use a medical pump at night).  It is tiring for us but we have developed an amazing ability to know when an hour has passed, without looking at a clock.  In my science class at school I couldn’t even estimate when one minute had elapsed.  Now I am a time master.

More importantly though, it interrupts her day.  Can you imagine someone coming up to you 12-14 times a day asking you to stand or sit still?  How she stays so patient with it I do not understand.

She is stable now, so we could change to say, medicine every 2 hours.  But I hesitate.

  1. Can I retrain my brain to this new schedule?  I might actually have to think about what I am doing!
  2. More importantly, what if this de-stabilises her?  Is the potential benefit of fewer interruptions to her day (and ours) greater than the potential risk to her health?

I just don’t know.  I think I’m going to enjoy this feeling of control a bit longer and leave things as they are.