Blurb Verse

"And we rejoice in the hope of the glory of God. Not only so, but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character and character, hope. And hope does not disappoint us, because God has poured out his love into our hearts by the Holy Spirit, whom he has given us."
Romans 5:3-5
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Monday, April 30, 2012

15 days of intense blogging..



On April 14th, I decided to join the April Ultimate Blogging Challenge: For the remaining 15 days, I decided to write a new post everyday. It's been a rough road, with lots of fatigued pain-filled days, clouding my ability to write anything, but I'm pleased to report, today on day 30, I actually did it! More than that, I actually managed to do the full 30 posts (1 day for the month) for the month, even though I was only part of it for half that time. Yay!

Here's some of the most exciting posts of the month:

I've also discovered a few other fibro bloggers who I'd love to make a shout out to:
Special thanks to all who participated in April's Challenge and to Michelle Schaeffer for all her organisation and daily tips!

Hope you are all travelling well through this day, whether it be a good one or a not-so-good one.. And for all my fellow bloggers out there, it's been lovely reading through your posts. Thanks for checking out my blog and hope to see you at the next challenge!

My April-Lutions!

We're nearly four months into the year and the time has come to take those New Year's Resolutions off that dusty counter and reassess the progress made so far.

Here's mine:

1. Start doing yoga 
Yup, I have started doing yoga & been going semi-regularly for the past three months. I've even started practising at home when I haven't had the energy to go to my yoga class. 

2. Write one letter a month to my sponsor children
On this one, I must admit I have failed abysmally. Not one letter written yet. 

3. Write atleast one letter to each of my best friend's overseas
This one I've done. I must admit, there's something wonderfully exciting about receiving a long letter via post from a friend. It is definitely a more intimate form of communication than email or facebook. Plus, they last forever and can be saved in a special box! 

4. Start getting involved in church & serving
Towards the end of last year, due to a variety of circumstances including unimaginable agony from my health, I was forced to withdraw from serving. I'm pleased to report that I have started serving where I can. It's still a slow process and I'm learning that I cannot fail to honour my body and where it's at but I'm enjoying a nice balance of serving and being served in the meantime. 

5. Finish atleast one cross-stitch and one crochet project
I haven't yet done this one, but I'm pleased to report that my cross-stitch project is about 78% complete, so I'm definitely on track for finishing that one. My crochet, on the other hand, is at a total stand-still. I'm finding that to be a considerably painful activity for me these days so I might have to concede defeat in achieving that part of it. 

6. Spend some time with God each day, reading His word and praying. 
This one has always been a tough one for me. I'd be lying it I didn't say that this has been on my list for many years, especially more so since I'm been struggling with fibromyalgia. But I've modified this one a little to include the words, "proportionate to health levels for the day". I'm doing okay on this. I'm still not good at remembering to do this everyday but I'm definitely getting there. A good motivator is that I am growing in my understanding of God and getting to know Him better with each day, so I think that will keep me going for the rest of 2012. 

Wow, on balance, I'm not doing too bad. I've still got a lot of work to do in a few areas but I think I'm on track to achieving my resolutions in 2012. 

How about you? How are your New Year's resolutions looking? 

Fibro Myth #1: If you stopped being so stressed out, you'd feel better

So in the twelve days leading up to International Fibromyalgia Awareness Day on May 12th, I thought I'd share some helpful information about our illness and debunk some of the myths out there around the subject of chronic illness.

Fibro Myth #1: If you stopped being so stressed out, you'd feel better

Stress affects most people. And it is true that stress is extremely unhealthy. 
But, fibromyalgia and in fact, most other chronic illnesses are NOT caused by stress. 

In the past, doctors believed that fibromyalgia was a pyschological problem; an inability, in some people, to cope with life's circumstances. Then suddenly, ten or so years ago, doctors found out that that this initial hypothesis was wrong.

Fibromyalgia is actually caused by a change in the way a person's brain operates. The brain starts processing pain signals differently, perceiving consistently strong pain, where there is no muscular cause. Through brain mapping, doctors can actually see the difference between a normal person and a fibro patient, although such costly tests are not necessary to confirm diagnosis. As fibro patients, we have no more control over the way our brain works as a healthy person does. For example, can you force your brain to stop digesting your food after a meal - No! Your brain just does this.

But like most illnesses, chronic or otherwise, stress makes fibro worse. And as chronic illness sufferers, we are often naturally in a greater deal of a stress than other people. Add this to the stress of relationships with people who are not supportive of our health struggles, new symptoms, life circumstances (eg. loss of a loved one) & it's not so difficult to see why we feel overwhelmed. That is why we practice stress management techniques and relaxation therapies... Not because we are not good at dealing with stress, but because we have a whole lot more stress in consistent bursts to deal with.

The reality is, even if we were awesome at dealing with stress, we'd still be in pain, because we'd still have fibromyalgia.


Remembering to Grieve

One important thing to remember as a chronically ill sufferer is to remember to grieve & grieve often. Why, you ask? We need to grieve for the loss of health, the effect it takes on our relationships, the loss of friends, loves & family, the loss of serving & extra curricular involvement, the loss of work or study...& so much more..

When I first became ill, I used to push through. I thought that being a survivor meant, that I should long for better days & keep working harder. I thought that when dark days pushed me down, I should shove it & strive harder to reach the goal. I was wrong.

Acceptance is the goal, not Performance. But unlike most other goals in life, you might notice that even after you reach acceptance, you might fall back into denial. That is natural, and a normal part of what we go through. So don't beat yourself up when you fall back & definitely don't attempt to rush through the phases. Take each step as it comes & be content to sit wherever your station for the day is.

So, what are these steps, you ask:

1. Denial


Believe it or not, denial is always the first stage. You will start off at denial, no matter how much you try to deny it. At this station, the world feels hopeless & overwhelming. It's where you stop moving, because you don't know where to go. You might find yourself, pushing hard to retain all the activities of your old life, hoping to reach that brink point, where you wake up and find it's all been a dream.



2. Anger 
This station, involves screaming, bitterness, hurt and rage. It might end up being directed at friends, family, doctors, randoms and even God. It includes both the outrage that such injustice could occur as well as the effect of your ill health on your life.
Some people skip the anger stage, but it's substitute is often just as difficult, Blame. Blame convinces you that there must be something that you've done that has caused this pain. There must be some ulterior motive. Blame forces you to retreat and wander through all your past actions for the source of all of your pain.


3. Bargaining

Bargaining is  where you try anything & everything to return to normal. You try & make deals with God - I'll give more money if you take it away. I'll never sin again. I'll study harder. I won't watch TV. Please. Just take it away. 

If your step 2 has been blame, then bargaining is where we make rectifying actions, in hopes that we can somehow earn our way back from suffering.


4. Depression


This step is where you start to realise that things are not going to change. It's where you finally feel the full effect of your illness & how much it's going to or has already taken from your life. It's where you realise how all your dreams, friends, work etc have been plucked out of your hand. Everything has changed.
This is often the stage where we might explore the bigger questions, like why is there pain & suffering in the first place?
Depression is an extremely important part of your grief. It is impossible to skip this stage. You'll often find that people around you, might not be willing to hear your deepest, darkest thoughts. For instance, I've thought so many times about dying, willing to die, wanting to die and begging for death. No matter how dark your thoughts get in this depression, try not to feel guilty about it.
The most important thing in this step is to find a healthy way to express your grief. Most people find a creative outlet to do this - some paint, others knit. I write poems; Truthfully, I only really write poems when I'm in this stage. It's the best way for me to acknowledge those thoughts as real feelings, express them to God and get them out of my head. You need to find a way to do that for yourself. It doesn't need to be pretty. It doesn't even need to be shared with anyone.

5. Acceptance
This isn't being okay with your illness. Most people never really feel good about suffering. It is about accepting that this is how life is and is going to be for the present. It's accepting the impact of your health on your relationships. It's accepting that you cannot work anymore or can only do part-time. It's realising and letting go of the dreams that your old self held. It's allowing yourself to live with this reality.


Remember, on any given day, you could be in any one of these stages. As a chronically ill sufferer, particularly as one with a complicated, misunderstood illness, you'll find yourself regularly going through these cycles. Once you start to recognise which step you are in, you'll find that you beat yourself up less about the feelings that are only natural to have. Sometimes, you'll reach acceptance within a couple of days, sometimes it might take months or years. Don't forget - it's not a race; so feel free to pace yourself.

And remember, you are not alone. Even if every single one of the people in your life abandons you in your time of distress, your God will never abandon you. He'll walk with you through every one of these stages; that's His promise to you.

"Listen to me, O house of Jacob,
all who remain of the house of Israel,
you whom I have upheld since you were conceived,
and have carried since your birth.
Even to your old age and gray hairs,
I am he, I am he who will sustain you.
I have made you and I will carry you. 
I will sustain you and I will rescue you."    
Isaiah 46:3-4

Lord Today

Ever felt like you want to be someone else, just to remember what it was like to be fibro-free, just to be able to actually tick some things off your list of tasks for a change?

Here's something I wrote a couple of months ago on a day just like that.
Lord, today

Lord, today, could I be somebody else?
Could I leave all this hurt & struggle for behind me?
Lord, could I let go of all that keeps me down
And leave the shackles on the floor where they belong?

Lord, today, could I walk just like the others do?
Today, can I breathe without the tears come crashing down
& reminding me that I'm not free?
All alone to pick all the pieces up.

Lord, today, could I dance & sing praises out to you?
Could I read your Word and think it through?
Could I learn something about you and actually remember it
& be free of this foggy, misty prison cell?

Lord, today, could I spend it with all the ones I love?
Could I be part of the conversation fun?
Could I encourage & spur others on
Without my whole world come crashing down?

Lord, today, could others see the pain that I am in?
Could they love & comfort me just where I am?
Could they sit with me in the darkness
And just hold my hand?

Lord, today, could I serve you like I always could?
Could I go where your work is being done?
Could I share my faith without falling apart
'Coz my brain can't find words to describe who you are?

Lord, today, could my body behave as you made it to be?
Could my brain stop sending me into constant panic?
Could I eat without feeling nauseated
And regretting each bite in the past?

Lord, today, could you stop all the voices calling in my head
Telling me that I'm all alone & out of Your hand
Stripping me of any chance
Of joy or of peace?

Lord, today, could someone in the world know who I am
Who I'd be if in this prison I wasn't placed in to be
Would anyone be able to recognise me
If in heaven, we were to cross paths?

Lord, today, could you help me find a hobby or a task
That wouldn't hurt like I was eating glass
That I could do without tears or fears
And actually find enjoyment at last?

Lord, today, could you touch my eyes so that they are new?
Could you take this light sensitivity away with you?
Could I walk happily in the light once more
Without being punished & forced to be alone?

Lord, today, just for today, could I be somebody else?


(c) 2012

Saturday, April 28, 2012

How I Met God

Lately, one of my favourite shows has been "How I Met Your Mother". It's a story of a man, Ted, in the future, telling his kids the story of how he met their mother. Only, he starts all the way at the beginning, many years & many girlfriends prior to their mum. Because it's all part of the story...

Stories are important. Where we come from influences who we are & what we become.
So here's the story of how I met God: where I was when he found me, how he found me & life since.

 I grew up in a Christian home. My mum and dad were followers of God & took my sister and I to church. Every week, I'd hear the speaker say, 'To be right with God, don't steal', or 'don't hurt others' or 'don't lie'. I'd try really hard to stop doing it & be good, but no matter how hard I tried, within a few days, I always failed. I got really frustrated. I just couldn't do it. It was too hard.
I looked around me, but no one else seemed to have as much trouble as I did. So I did what any sane teenager would do - I pushed it to the far reaches of my mind & focused on other things - money, possessions, love, friendship.. But no matter what I tried, nothing could satisfy me. Some things gave me temporary happiness, but nothing was permanent. I couldn't shake this feeling that something was wrong. It just got harder and harder to ignore it.

When I was 15, I was living in Dubai, and my sister was in Melbourne. She was involved in a Christian group at her university and annoyingly, she used to send me links to all kinds of talks and websites. And I ignored most of them. Out of curiosity, one day, I opened one.. and this is what it said - 'Jesus didn't come and die for those who were perfect, who had it all together. Jesus came for the bad, for the sick and the broken - those who never had any chance of being good enough for themselves. He came to make them right with God.'

Wait a minute... that's me... Jesus came for me?

All along, what I needed the most was not to discover a secret way of being good - it was to accept Jesus and what he'd done for me by dying on the cross, in my place. The reason everyone around me were able o be good was because of Jesus, not the other way around.

It has been nearly eight years since I became a follower of Jesus & I still get a lot of things wrong. I'm definitely not perfect. But I know that because of Jesus, I am right with God. And now, I try to do things that please Him, not because I want to win brownie points, but because of His friendship with me.

What about you? Are you right with God?

Friday, April 27, 2012

Jesus help me...

I got this prayer from one of my best friends & I thought it was quite beautiful so I want to share it with you:

Jesus help me

In every need, let me come to you with humble trust,
Jesus help me!

In all my doubts, perplexities and temptations,
Jesus help me!

In hours of loneliness, weariness and trials,
Jesus help me!

In the failure of my plans and hopes,
In disappointments, troubles and sorrow,
Jesus help me!

When others fail me,
And your grace alone can assist me,
Jesus help me!

When my heart is cast down by failure,
At seeing no good come from my efforts,
Jesus help me!

When I feel impatient and my cross irritates me,
Jesus help me!

When I am ill,
And my head and hands cannot work,
And I am lonely,
Jesus help me!

Always, always, in spite of weakness, falls and shortcomings of every kind,
Jesus help me!
And never forsake me, Amen!

A Letter From Fibromyalgia...


One of my friends from my support group shared this letter with me: 
__________________________________________

Dear Miserable Human Being,
Hi, my name is Fibromyalgia, and I’m an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can’t see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.

Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.) Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. 

You didn’t ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma. Well, anyway, I’m here to stay! I hear you’re going to see a doctor who can get rid of me. I’m ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you’ll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You’ll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I’m a debilitating disease. Some of them will say things like “Oh, you’re just having a bad day”, or “Well, remember, you can’t expect to do the things you used to do 20 years ago,” not hearing that you said “20 DAYS ago”! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can’t remember what you were going to say next!

In closing, you’ve probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People with Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.

Remember, I’m stuck to you like Velcro – and I expect we’ll be together for the rest of your life.
(C) Angela Debono
_____________________________________________________________________________________

As I was reading it, I was struck greatly by how much my life & experience with pain resonate truly in these words. And yet, this letter has no place to end except without hope. For without God, there cannot be hope. 

As Christians, we know that the end is not depending on people who cannot or will not come through for you. The end is that God, himself, will come to you. He, himself, will make his home with you. He, himself, will be your strength, your joy and your eternal companion. 

And the Fibro-Monster (as we sometimes like to call it) does not have the final victory.. Though we may be together for the rest of our lives, we will not be together for all eternity. The Fibro Monster may think he has won, but the truth is that God has complete victory over him and his days are numbered and drawing very close to their end...

Wednesday, April 25, 2012

Enduring through tough emotions...

Do you ever feel alone in your suffering? Do you ever feel like your invisible? Like no one in the world seems to be able or willing to see your pain? Like no one is there to hold your hand through it all?

If you feel any of these things, let me encourage you first by saying, "You are not alone." What you are feeling is actually a very normal part of life, life as a Christian, and especially life as a chronically ill person. But what do you do about it? How do you stop the thoughts from becoming paranoia, from sapping every happiness out of you and leaving you high & dry?


1. Grieve & Give it to God
This is an important step. It sucks that you have to face your struggle alone. It feels unjust and unfair. You need to find a way to let those feelings out. Unspoken feelings are a powerful tool of the devil, to grow doubt, break apart relationships and to ultimately, steer us away from God. Grieving is a must and important process that must happen. The more you struggle, the more you should grieve. Part of why we hate feeling like this is because we were made for perfect relationships. We were not designed for this broken world. Injustice affects us so, partially because it's deplorable and causes us pain but mostly, because it reminds us that this world is not right; that things should be better; It makes our whole beings (body & spirit) crave for God's perfection - for the world that is to come.

Each one of us has a preferred way to grieve so I can't really tell you how to grieve. I write poems/songs to help express the brokenness I am feeling. Some people paint, some write, and others talk to the walls. No method is any better than the other. For other suggestions, click here.

The only sure-fire way to stop unspoken hurt from resulting in roots of bitterness is to talk about it with God. Let him deal with it. In 1 Peter 5:7, Peter tells us to cast all our cares on God because he cares for us. In Psalm 55:22, the psalmist encourages us to cast all our cares on the Lord and he will sustain us. Truly, the best way to survive and to survive well as a Christian through struggles is to cast on the Lord, knowing that He is big enough to hold & deal with whatever life has thrown our way.

2. Gently remind yourself of Jesus
When Jesus walked this earth, he experienced suffering like no other. He found himself isolated from his followers, his fans and his family. When he needed others the most, no one was there for Him. Read more about this here.

3. Remind yourself this is a step in the right direction towards being conformed to Christ's likeness
Remember some of Jesus' words before His death: "A servant is not greater than His master. If they persecuted me, they will persecute me also." When you feel ignored in your suffering, when no one listens to your pain, when you're overwhelmed with sorrow to the point of death, know that Jesus suffered as you did (& more) and you wear a badge of honour from your Saviour himself to show that you share in His sufferings. If the goal is to be more like Christ until we are carried on to completion, then this struggle is definitely one more step in the right direction. Read more here

I pray that you might survive today's storm & that it might be credited to your righteousness.  

Lest we forget...

Happy ANZAC day! If you're not in Australia or New Zealand, you're probably wondering what that means.  


ANZAC day marks the anniversary of the first major military action fought by Australian and New Zealand forces during the First World War. We commemorate and honour the memory of the 60,000 Australians who died in that war and those in wars since. We remember their valiant efforts in achieving for us the freedom we so wonderfully enjoy today. We wear red poppies in their honour. 



I love ANZAC day! What a great opportunity to spend a day being intentionally thankful. But it really got me thinking - how thankful am I really? Anyone can be thankful when things are good, provided that you remember to be thankful in the first place. But what about when things are rough, when life is taking you down an unexpected road, when it feels like it's all falling apart, are you able to be thankful then? 


Give thanks in all circumstances, for this is God's will for you in Christ Jesus (1 Thessalonians 5:18)

One of my early posts on this blog was about thankfulness (click here to see it). But I think it's helpful to be reminded of this time & again. Even if today is the single worst day you've ever faced in your entire life, there is still much to be thankful for. For instance - you survived today!! God saved you from the depth of hell because of Jesus' dying on a cross for you!! And no matter how hard today has been, God has not left your side, not even for a second! Trust me, once we stop long enough to think of three things that God has done for us that we can be thankful for, we are overwhelmed by the long list that comes to mind. Surely, if we started now & never stopped thanking God for all He's done till the end of time, we would still be nowhere near finished. 




I think today, I will use this day to not just be thankful to the soldiers but be thankful to God for the freedom he has bought for me in Christ, that I so wonderfully enjoy. I choose to be thankful for each blessing, for each difficult time that he has used to bring me closer to Him, for each tear of mine that he has collected in His hands and finally, for the fact that today, I am one more day closer to being brought to completion on the day Jesus returns & one more day closer to walking side-by-side forever with my God. And so are you! 


For more details on the history behind ANZAC Day, click here

Tuesday, April 24, 2012

If they did it to me, they'll do it to you...


"Dear friends, do not be surprised at the fiery ordeal that has come on you to test you, as though something strange were happening to you. But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed." 
1 Peter 4:12-13
Peter writes this letter to encourage Christians in Asia-Minor who are struggling under the weight of persecution. But it applies just as much to persecution as it does to any struggles we face as aliens and strangers of this world and children of God.

Peter tells them of three main things:
1. As Christians, you can expect to suffer.
That's it, you heard me right. If you are a Christian, you will suffer. Your suffering may be in different forms and in varying degrees but I can pretty much guarantee that if you live long enough as a Christian, your walk will include suffering. Why? Don't take my word for it. Remember some of Jesus' words before His death: "A servant is not greater than His master. If they persecuted me, they will persecute me also." And earlier on, “If the world hates you, keep in mind that it hated me first." The world hated Jesus. The world mocked him, tortured him and put him to death. As Christians in 2012, our world is not yet brought under Jesus' rule. Until the day that he returns, we can expect to suffer. This includes persecution and mocking all the way to diseases and sicknesses from the effect that sin has had on this world. 

2. Your suffering will test you
Has anyone ever seen that episode of Friends, where Rachel gives birth to Emma. As she waits in her share-room for her 10cm dilation, she finds every other woman that walks into her room going into labour before her. One such woman is an Asian woman (I forget what her name was). As Rachel is struggling through the pain of her contraction, this woman gets a contraction too. Only hers lasts about a second, causes her to frown a little and then bounce back to normal. As you can imagine, Rachel is furious. 

Sometimes, I think we are a little bit like the Asian woman. We're okay with suffering, as long as it doesn't hurt. Well friends, suffering that doesn't hurt, that doesn't test us & stretch us is no suffering at all. That's like talking about a vegetarian lion or a unisex human - it's just impossible. 
The good news is that while suffering will test us, God promises us two things:
  • He will never abandon us through it. In fact, he won't ever leave our side.
  • Our suffering will refine us, not destroy us, because nothing can separate us from our God.

3. When you suffer, you are sharing in Christ's sufferings. Thus, when he is rewarded you will share in his rewards. 
Since we are God's children & co-heirs with Christ and since He lives in us, when we suffer, we share in Christ's sufferings. We don't minimise them but we experience something of what Christ suffered & are able to show others something of what Christ suffered for them on the cross. But it doesn't end there, when Christ is rewarded, when all things come under his feet, when he resurrects all his people to live with him forever, we share in his glory too. We share in his reward of eternal life & we share in God's love for us through him. 

So, the next time things get hard, remind yourself of this:
1. Suffering is not unexpected. In fact, it is the norm
2. Suffering is going to hurt & test you
3. Your suffering is part of Christ's suffering. When you are in agony or feel ignored in your suffering, when no one listens to your pain, when you're overwhelmed with sorrow to the point of death, know that Jesus suffered as you did (& more) and you wear a badge of honour from your Saviour himself to show that you share in His sufferings. If the goal is to be more like Christ until we are carried on to completion, then today's struggle is definitely one more step in the right direction.

Sunday, April 22, 2012

Raise some awareness!

There are some really key things coming up in chronic illness saga that is our lives, so check them out!

1. International Fibromyalgia / ME / CFS Awareness Day - Saturday, 12th May
I read somewhere that this day was chosen as it is Florence Nightingale's birthday, who was believed to have these illnesses. I don't know if that's true, though.

Either way, get on board! Whether, you are a sufferer, carer or you know someone who has one of the above, wear purple to show your support. To take extra advantage of this day, here's some ideas:

  • Give a gentle hug to someone you know who has these illnesses or bake them a cake
  • Spend a day listening to them & doing what they can enjoy without too much pain
  • Write to your local MP to make them aware that one of the 3-6% of the population who struggles with these illnesses lives in their locality. 
  • Share this post & use your social media to let others know of this condition
  • Share this video made by a fibro sufferer in honour of the day:



2. National Pain Week

This week, organised by Chronic Pain Australia, is mainly centred around three events:
  • a one-day conference in Canberra on 25th July titled "The Culture of Pain". 
  • 10,000 faces of pain - showing real people struggling with chronic pain
  • An Art Competition to raise awareness for chronic illness     See more details here


This website also has access to research programs on chronic pain if you're interested to help with that.

3. Here's another really helpful video on Pain - by Chronic Pain Australia


Love always :)

Friday, April 20, 2012

I dream.......

Today, I want to share with you something quite personal. To give you a bit of background, I wrote this when I had just started back at work (part-time), my health was still really difficult & I was feeling totally overwhelmed by everyone's expectations of me to be fine just because I looked it & of course, their resulting disappointing looks when I couldn't run with them to catch the train or climb up the stairs instead of the escalator.
God encouraged me during this time, to remember that this world is not perfect. In fact, it is not even good. Like Paul says, we as Christians, along with all creation, are groaning with expectation for the new world, the new heavens and the new earth God has made for his people.

Hope this encourages you,as you groan with expectation for God's world, to keep hoping & to keep your hope in God.

I dream (c) 2012
I dream of a new world,
A place far better than this;
Somewhere with no pain.
I dream of an age with sun
That doesn't blind,
And light that doesn't burn
A morning that gives birth to life, not agony
A day that doesn't strip
A year's worth of life from each.

I dream of a time when people look at me
And see who I am, not just how I look;
A place that accepts just me
Not my lists of dones & yet-do's,
Where people stop looking enough to see
the tears in my heart,
And the broken pieces in my hand.

I dream of an age when the weak & poor are no more,
When man considers each other as brothers, not strangers
When love lasts and endures
And a reaching hand finds a lasting heart.

I dream of a world where war is behind us,
Where fear & hate are not our sole dictators,
Where pride can only be read of in books
And natural disasters are buried with the dinosaurs.

I dream of a place that speaks
And revels in pure joy;
One with smiles & laughter
Ear to ear.
I dream of passion & zeal
Directed at the true maker
Where faith is applauded instead of ridiculed
And hearts are bound to sleeves.

I dream of a world where thoughts are shared,
Over more than social media or blogs;
Where each listen more than speaks,
One where rights are not more costly than Armani
I dream of perfection, not in deed but heart.

You may think I'm silly
A fool clinging to worthless ideas.
My world doesn't exist yet
No matter how hard I try.
You can scoff
Say that I'll be alone forever
That may be true
But I can still dream
And one day my dreams will come true
That is a promise, from me to you.

Till then, I wish to sleep.
If only, just to dream.

"But hope that is seen is no hope at all. Who hopes for what they already have?" Romans 8:24b

Thursday, April 19, 2012

Lay off some of that pride juice!

Sorry, dear friends but I've been hit with a triple whammie of pain, fatigue and deadlines over the past week & I am only just surfacing back up, so here's something I wrote on Monday night, but never got a chance to post:

Today was a rough day & I was not expecting to be able to post anything tonight, but then as I got on the train home, God really reminded me of something important to share with you all. So here it goes:

I got on a train in the city & after only a couple of stations, a beautiful woman walked into the train. I remember, I only noticed her because her face reminded me of a colleague and friend of mine. She looked elegant & graceful. As she pulled her leg into the train, there was a thud, & before I knew it, she was on the floor, cursing and screaming.
A couple of kind gentleman helped her up to a seat while the train sped by completely obliviously to this woman's pain. (right now, you're probably thinking, what's so special about this story.. I promise, I have a point.. so read on...)

As the woman's pain eased, she started to explain what happened. She'd sprained her ankle & torn her ligament the month before. It had healed mostly but her doctor told her to be careful until it was 100% better. It still hurt her so she had been limping around for the month, & now that she'd sprained it again, she thought she'd probably torn it again. As my gaze turned to her feet, I finally noticed them - her high-heeled boots!

It really got me thinking, "What would possess someone with a torn ligament to walk around in heels? Surely that would be an acceptable excuse to wear thongs."

As I was dwelling on these thoughts, I felt the gentle nudge of God's Spirit remind me of this: Wasn't it, not too long ago, that you'd still wear heels, some days at work, parties and even walk around the city with them? Does it not seem reasonable for a person who's struggling to stand up to wear flats and not heels?

Now, I'm not advocating that we all chain ourselves to our beds because we are too ill to do anything. But the question we must ask ourselves is 'Why push so hard in the first place? What are we really working towards?' For you, it may not be your heels; It may not be the clothes you wear or your ability to help other people. Maybe it's choosing to push yourself to the point where your life looks no different to a healthy person, except that you can't sleep because of the pain you worked all day to ignore. Let me ask it again, 'What are you working towards? Is what your pursuing worth the agony that you put your body through to get there?'

Friends, both my fellow chronic sufferers as well as those that journey with us, let's work a little harder at taking care of ourselves. By pushing ourselves hard, we may reach our aimed prize, but what good is it to reach there only to drop dead and not be able to reap the benefit. Let's pace ourselves and let's keep our eyes fixed on what's really important & what will never fade away or cease; Let's keep our eyes focused on God.

I guess it's true what they say: pride definitely goes before a fall.

Sunday, April 15, 2012

How many spoons do you have today?

I found this really lovely diagram (see below) on a fellow fibro sufferer's twitter page to help you explain The Spoon Theory to your family and friends:
Here's how it goes: You hand over to your friend a limited number of spoons (eg. 20) and say, "There you go, You now have fibromyalgia/a chronic illness." 

(c) Chronic Hope
Explain that the difference between being chronically ill and healthy is that you have to make choices and consciously think about what things you can do, and what you can't, even though you want to. 


Most people start their days with unlimited energy and possibilities to do what ever they desire. By and large, they don't have to worry about the effects of their actions. But we start the day with a limited number of 'spoons'.


Ask your friend to count their spoons, because having a chronic illness means you need to plan your day; you need to know exactly how many 'spoons' you begin the day with. Then, list all the things your friend does in a day, from normal tasks, like brushing your teeth, to fun things like going out for dinner. 


Explain how each thing they do costs them a spoon. 
For eg) getting out a bed, when you are sore & exhausted because you didn't sleep last night costs you two spoons.  Brushing your teeth and taking a shower each costs you a spoon. Walking to the car costs you another. Catching the train at peak hour costs you two spoons. Having a meeting at work costs you a spoon while enjoying a lunch with three girlfriends might cost you three spoons. Catching the train back home, whilst standing during peak hour, costs you three spoons. Carrying your work laptop home might cost you one spoon. Making yourself some instant dinner might cost you one spoon. Dealing with your high pain levels for the whole day will probably cost you three spoons. Remembering to take your medication during the day will probably cost you another spoon.... and before you know it, you're empty. There's no spoons left. You haven't got a spoon to talk to your family, or one to get ready for bed or another to fall asleep. So you borrow three of tomorrow's spoons. Only now, you have only 17 spoons to get through tomorrow with. 


A couple of days, weeks, or years like this will quickly teach you that you just can't spend your spoons willy-nilly. You need to evaluate each day & think carefully on how you are going to spend your spoons. For instance, in the above case, you might have to cancel your lunch with three friends, so that you have enough spoons (ie. energy) to make it to bed that night. 
Believe it or not, even spending time with God or reading the bible or hugging someone takes spoons. 


For those of you currently struggling with chronic illness, I hope this is a helpful way for you to think about your day and how to survive through it. If you are someone seeking to support a chronic illness sufferer, I hope this has been a helpful glimpse into what's it like to live with chronic illness. 


One of the best parts of this theory, is that it is not just for fibromyalgia or for lupus (that was what it was originally written for). I think it's a helpful explanation for anyone struggling with chronic illness. 


So, how many spoons do you have today? 


For a more detailed explanation of the Spoon Theory, click here. Refer to my previous blog post (here) for other helpful links to explaining and learning about fibromyalgia. 

Saturday, April 14, 2012

Combating the Blues

I warn you: the following post is not full of encouraging happiness. For those of you who do not struggle with chronic illness & the resulting social isolation, it is extremely likely you will find this post offensive or somewhat un-Christian. But I know that my fellow chronic survivors out there can relate, because you’ve probably all felt this, probably more than once already….


Today is a day of blues.. & no I don’t mean, a day of melancholic music, but a day of increasing sadness.
This week funnily enough, even though it was a shorter week, has truly felt like at least a year of my life. And today once again, I find myself in much the same place I was when I started thinking about this blog:  alone, desperate to help others who feel this pain; desperate to help myself when I feel this pain.

Today, I watched the world around me go about their business; I watched them enjoy their weekend, while I sat in pain trying desperately to survive; to do at least one task on my to-do-list. You'd think I'd be used to this by now. Then again, you’d think that someone would have sat by my side or given me a hug, but no.
I felt somewhat like I had accidentally clicked the “Invisible” button on GChat & made the world unable to see me anymore. Today I sat alone.

Over this past week, I have been surrounded by constant reminders of my failings: from my family, colleagues & friends: about how my feelings & illness interrupt with their plans, about how my health just brings the party down & ruins the mood & today, I watched everyone I care about scurry away from me, because I wore that sad, pained expression on my face & did not have the strength to hide it.


“My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.” Matthew 26:39

God really got me thinking that Good Friday & Easter was not too long ago (even if it feels like a century has passed since). It was not too long ago that we remembered Jesus sitting in the Garden of Gethsemane, Jesus dying on a cross & rising again!

So today, I’m embracing the loneliness. I’m letting the tears run free.  I’m accepting that I’m sitting in the Garden of Gethsemane and though, I want my closest allies to stay awake & pray with me, there are nowhere to be seen when I truly need them. Today, all I have is God. Today, all I want is to be free of this, but what I ask for is “not my will, but yours Lord.” 

My Yummy Orange Almond Cake Recipe!


(c) 2012
Allergy Info: Gluten-Free; Includes Nuts & Fruits.
You Will Need:
480g Oranges (two navel oranges approximately)
220g Caster Sugar
1 teaspoon Baking Powder
6 large eggs
250g Almond Meal

Serves 10

Method:
Place whole unpeeled oranges in saucepan. Cover with water. Boil with the lid on for 30 minutes. Drain the liquid, fill with fresh water and boil for 1 hour. Trim the green ends, cut the oranges into quarters and check for pips. Place oranges into a food processor and pulverise them to a pulp. Leave to cool to room temperature.

Line a 22cm round springform cake tin with baking paper and grease the sides with non-stick spray. Preheat oven to 180 Celsius, or 160c if fan forced.

Beat eggs (split the eggs into yolks & whites. Beat whites separately until fluffy, then add yolks to give it a lighter, airier feel) and sugar with electric mixer on high speed until fluffy and pale, which should take about 5 minutes (stop before ribbons form). Beat in the baking powder.

Sift the almond meal to get rid of lumps. Fold in the almond meal and orange pulp.


Pour into tin and bake for 45-60 minutes, or until a skewer into the centre comes out clean. For me, at 30 minutes the top was getting nice and brown, so I covered it with aluminium foil to minimise burning. At 45 minutes, mine was shrinking away from the sides of the tin and passed the skewer test. Watch the baking time carefully. Other bakers have reported variable baking times, ranging from 45-60 minutes. Check by inserting a skewer into the cake & when it comes out clean, it's done!

Allow cake to cool upright in the pan. Do not attempt to turn out (otherwise your cake will fall apart).

When cool, dust the top with icing sugar if desired. Dust icing sugar on the top before serving, if not serving immediately after making it. If you dust it in advance, the cake will absorb the icing sugar.

Note: This cake tastes best fresh from the oven. If you are keeping it for a few days, place in an airtight container or put on a plate & wrap tightly with cling wrap to preseve moistness.
Cake Mistress' TIPS:
  • Use quality oranges. If they’re bitter, the cake will be bitter.
  • NO shortcuts on the boiling oranges step! Boiling reduces the bitterness of the orange pith and softens the rind. Failing to do so will result in a bitter chunky cake, which is nasty ‘yo.
  • Navel oranges don’t have pips, but other varieties do. Once boiled cut them open, check for pips and remove them!


*The above has been adapted from The Cake Mistress

Friday, April 13, 2012

Fibro-Whaaaat?

Do you ever feel like no one really understand what it's like to have fibromyalgia? Even if you find someone who's interested to hear you out, do you feel like you're fumbling with your words to find a way to help the other person understand?

Well, I definitely do not claim to be the expert on this one, but here's a few links & ideas to try out. Perhaps, this will give you somewhere to start from:

A Day in the Life of Us
The spoon theory is written for lupus, so a fellow fibro-sufferer came up with the straw theory, but I think both are somewhat useful to explain life with a chronic illness:
Spoon Theory (Lupus): Christine Miserandino's Spoon Theory
Straw Theory (Fibro): Jayde Dow's Straw Theory 

Helping You & Others Understand Fibro
Understanding Fibromyalgia - Common Ways to Explain Your Illness
What is Fibromyalgia - MediBrain
Helpful Technical Articles - Lewis Institute Library
Living with Fibromyalgia - Arthritis Victoria

Helpful Ways to Combat Your Illness
10 Things to Stop Yourself from Doing
Coping with Fibromyalgia - FMT News

Helpful Books to Read
This is a tough one & so far I've only found one book that's been helpful & unbiased.
Living with Fibromyalgia - Christine Craiggs-Hinton

Suggestions on Doctors in Melbourne
Dr Daniel Lewis
The Fibro Clinic, Monash Medical Centre, Clayton

Support Groups
Fibromyalgia Melbourne Facebook Support Group - this is one I'm a part of & am finding really supportive
Fibromyalgia Peer Support Groups - Arthritis Victoria

Unfortunately, there is a lot of mis-information about Fibro and other chronic illnesses out there so don't believe everything you read. I've had a look at the links above & they appear to be legit.

I hope this post has been helpful. I'll try to keep updating this post with any new links I find.
Feel free to message me or comment on this post, if you've found other links, books or information that's been helpful to you. I'll be more than happy to include them in this blog to help others out too!

I Choose You..

Do you remember former Australian Idol winner (2009), Stan Walker's popular song titled 'Choose You'? If you listen to Mix101.1FM, you've definitely heard of it. In fact, you've probably heard it atleast a couple of times this week.  It seems to be a popular choice on 'Love Song Dedications'. I absolutely love the words of this song. And they've been really poignant to me over the past couple of weeks as I've been reading Hosea 1-3 with a friend from church.

Hosea was a prophet that lived & prophesied around the same time that Isaiah did. To show His love for Israel, God told Hosea to marry Gomer, a promiscuous woman. She bore him three children, including one who was called "Not my loved one" and another who was called "Not my people". She left him to go after her lovers but God tells Hosea to go buy her back & ask her, once again, to be faithful to him.

In and through Hosea's relationship with his wife, God speaks about his relationship with His people - how we are God's chosen people, but we turn away from Him and pursue other things (money, pride, greed etc) to fulfil our own desires, how punishment is required to make us right with God, how he calls us to himself & buys us back and how once again we are called "loved" and "God's people". What a beautiful summary of the gospel and all that God has accomplished for us in Jesus!

Through this song and through reading Hosea, God has really made me stop and think about 'love' - how what we understand of God's love for us & our love for others around us pales in comparison to the way Hosea and ultimately, Jesus describes God's love for us. Perhaps this is the reason that Paul, later on in his letters, prays for God to help Christians grasp how high, wide and deep God's love for us is, through Jesus.

I don't know what kind of day you're having today. Maybe it's a good day & you're poised and ready for the excitement of the weekend ahead. Or maybe, you're having a day like me, where you feel pummelled and overwhelmed by what today has brought you.

Either way, know this: God chose you. He chooses you, even though it makes sense for him to stay mad, even though we never deserve it, he chooses to love you, each and every day. He sent His own Son, Jesus for you, to bring you back to Himself. And there is nothing, no powers, no sickness, no fear or suffering that could ever take away this great & amazing love that God has for you.

Fear not, for have I redeemed you, 
____________, you are mine.
When you pass through the waters, 
I will be with you,
And when you pass through the rivers, 
they will not sweep over you. 
When you walk through the fire, 
you will not be burned.
The flames will not set you ablaze. 
I am the Lord, your God, your Saviour
Since you're honoured & precious in my sight,
I gave Jesus in exchange for you, 
Don't be afraid for I am with you. 
Isaiah 43:1-5