3 places not to place your hope in during chronic illness (and one place you need to!)

In every day life, most of us depend on our health – for the future, for happiness, for security. When your health or the health of a loved one is ripped away because of chronic illness, it’s easy to be left despondent.

After that awful, sinking feeling of having the foundation of your life pulled out from underneath your feet, our natural response it often to quickly rebuild.

We hunt desperately for a new foundation, a new hope. But what will it be? Sometimes it’s easy to break our hope into little bits and place it in different baskets.

3 places not to place your hope in during chronic illness

ONE: Medical Intervention

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Why you should widen your perspective (and how)

“There are more things in heaven and earth… than are dreamt of in your philosophy.” – Hamlet

We live in a big world. It’s 40 thousand kilometres wide, with 7.5 billion people. There are 2 thousand types of jellyfish and 3 thousand varieties of pears.

How often do you stop to ponder the universe?

If you are a Watcher or a Caregiver, sometimes the world does not feel that big. Our hours and thoughts are occupied with one person. Our daily routines may not take us particularly ‘far afield’. Life, which in reality is BIG, can feel (and be!) very small.

Oh no, you may protest. I don’t live in a bubble! I watch TV. I listen to the radio. I get the news on my phone.

That’s good… but it’s not the same as genuinely experiencing the world first-hand, is it? Media such as TVs, newspapers etc. can give us a sense of the “busyness” of the world, or the “angst” of the world – but do they really help us understand the “bigness” of the universe?

I don’t have time, you may counter. “Experiencing the world” (whatever that means) is a luxury I can’t afford. That’s for other more fortunate people.

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How chronic illness changes your perspective of home (and what to do about it)

Home is where your heart is. Your home is your castle. Home away from home. Home sweet home…. the sayings go on.

We assume home is a safe haven, a place of refuge and rest. Yet when chronic illness is involved, even our understanding of ‘home’ gets complicated.

“Is home a place of rest for you, if your Mum is ill all the time and you never know how she’ll be?”

A long time ago, somebody asked me this question. I was indignant. As a teenager, my thoughts ran like this: Are you suggesting that I come from an unhappy home? Firstly, it’s none of your business, and secondly I have a good family and a good home –

The truth is, I did (and do) come from a “happy home”. Yet the question made such an impact on me that I remember it all these years later, because it was something I’d never thought of before:

How does chronic illness in the family affect the definition of ‘home’?

Or, to be more personal: how does your family member’s struggle with chronic illness affect your home life?

Continue reading “How chronic illness changes your perspective of home (and what to do about it)”

Why you should attend your loved one’s doctor’s appointment (and how to be prepared)

A while ago someone I know was diagnosed with a chronic illness. After the initial diagnosis, she had to make an appointment to see yet another doctor. Before this appointment, I was chatting with her daughter and realised something rather abruptly: there is an art to accompanying someone to the doctor.

I’ve been to many doctors’ appointments in my life, both for myself and others. I’m neither proud nor ashamed of this, but I AM used to them.

And perhaps, not everyone is.

As a Watcher, a doctor’s appointment raises several questions: If it’s not for us, should we go? Is it important that we be there? What is our role? Are there reasons we shouldn’t attend?

Every situation is different and so is every person. I don’t think there are right or wrong answers, but I also think we can be a valuable asset at a doctor’s or specialist’s appointment. Here’s why:

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How to write a Get Well Soon card (to someone with a chronic illness)

Get Well Soon cards are great for broken legs and pneumonia – but do you do when someone won’t ‘Get Well’ (soon or otherwise)?

If you’ve ever browsed a two-dollar shop (as we call them in Australia), you’ll know there are many types of cards you can purchase.

Happy Birthday; Congratulations on your baby/engagement/anniversary; My Sympathy; and Get Well Soon cards. This last category can be somewhat disconcerting in the context of a chronic illness.

Of course, the easy solution is to buy your card without those words printed on the front.

But the problem goes deeper than that – what do you write in a card for someone who’s not going to get better? Should you send a card at all? How often? What’s the point?

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I have a chronic illness: Is God calling me to sacrifice my health?

Dear Emily,

I have a chronic illness, and I’ve recently been challenged about what it looks like for me to serve, specifically in mission (whether domestic or overseas).

Today’s post is my thoughts in regards to a series of questions I was asked by Wendy.

Q1. Why does it seem noble to sacrifice personal comfort to serve God in a third world country, but not to sacrifice your energy (as someone who has chronic fatigue) to serve in my own country?

Firstly, I think you’re right when you say there’s a difference between giving up your health security in a general sense (moving to a 3rd world country) and specifically sacrificing it, knowing exactly what the consequences will be.

Both scenarios involve potential daily suffering, but they are different, and I think it’s very important to acknowledge that at the very beginning.

Continue reading “I have a chronic illness: Is God calling me to sacrifice my health?”

You cannot do it all (but what if you want to?)

When I think of ambition, I see someone fighting tooth and nail to get to the top of their career ladder
… and to be honest, that’s not me.

When I think of ambition, I imagine an athlete, struggling to stay ahead of their peers, striving for Olympic gold
… and to be honest, that’s not me.

 

When I think of ambition, I picture a work-a-holic father, shutting out his family and surviving on toast and beans in his desire for success
… and to be honest, that’s not me.

 

And yet, I’ve come to realise over the years that ambition can take different forms. Or perhaps what I am about to describe is not ambition exactly – and yet ambition is the best word I’ve found so far to describe it.

 

Ambition says, “I can do it all”.

What makes Ambition wrong?
What makes Ambition right?
Am I being called to give Ambition up? Am I okay with that?
 

And how can our ambition get in the way of our love for others and our calling to Watch?

Today this post is hosted over at my personal blog.
Read more about my thoughts and personal struggles with Ambition here. 
 

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I’m also on Facebook, Pinterest & Twitter! Meet me there for more interesting reads, resources and community.

 

LTCI 4: Why Illness is not everything

I recently went to a conference where I met a lot of new people.
Which (necessarily) led to lot of introductions – and because this was a writing conference, it also led to a lot of answering the question: what do you write?

Which in turn led to explaining about this blog, and after that, about my Loved Ones – namely, my mum and my sister. After the first five times I got my ‘blurb’ down pat:

“I write a blog about loving people with chronic illnesses, as my Mum has multiple diseases including pernicious anaemia and type 1 diabetes (with all its associated problems) and my sister had a brain tumour and now her body does not produce any hormones.”

It was a ‘neat’ answer, but after offering it a couple more times I found myself growing increasingly uncomfortable. I found it difficult to repeat, to the point where I had to practically force myself to say it and felt like I was rushing to get it over and done with.
Why?

Continue reading “LTCI 4: Why Illness is not everything”

“I’m fine, don’t worry about me!”(Watchers, we are not Saints)

“I’m okay.”
“I’ve got this.”
“Honestly, it’s fine, I promise.”
Sometimes it’s easy to forget that we are only a Watcher, and instead begin to think that we are (or should be) a “saint”.
This is what it looks like:

Watchers, we are not saints

Do you…

  • …. feel guilty all the time. I’m not a good Watcher. Not even passable. Why can’t I do anything right?
  • … gloss over your hardships and sacrifices. Oh I don’t do much, not at all. Yes I spent all day driving my loved one to appointments in the rain, but that doesn’t matter. It was nothing!
  • … never share your problems. I’m going fine. One’s got to do what they’ve got to do! Other people have it worse, after all.

Continue reading ““I’m fine, don’t worry about me!”(Watchers, we are not Saints)”

My Daughter has Chronic Fatigue (Helen’s Story)

“The journey is slow, and it consists of tiny steps.” May this interview be an encouragement that there are others out there too, struggling to love and seeking to give, all the while figuring out what it looks like to do exactly that.

It’s time… for the first interview with another watcher!

The blog series Another Watcher’s Story is a compilation of interviews with other people just like us who are in a relationship with someone suffering from a chronic illness: mental or physical. They may or may not be in an ‘official’ caregiving role, but they have a unique tale to tell.

The purpose of this blog is to remind us that we are not alone.

So without further ado, let me introduce Helen, the mother of a daughter who suffers from Chronic Fatigue Syndrome.
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