The world often sucks but God is forever good

Today was just one of those days; you know the days I'm talking about: the ones where you think you really shouldn't have got out of bed.

The day starts off with expectation.. not the expectation of anything special, but the expectation of something to make life with your chronic illness just a little easier. You're not asking for a handout, but acknowledgement of the fact that you are trying to &  constantly accomplishing things far beyond your reach... You wait...but nothing comes.... You fight anyway, because you are determined to finish. You fight because you are determined to see your dreams come to life, even with the fifty sumo wrestlers sitting on your head & pain in every fibre of your being.. You fight. And you win. You look around but the world hasn't even stopped to notice.. Nobody seems to care.

On to the next dream.. You wait...You expect.. Once again, nothing happens..You fight, You win.... and on it goes... One by one, the weight of those sumo wrestlers & the pain grows.. until it's too much, until it shoves you to the ground and pummels you bit by bit. You try.. You wait.. You expect.. Nothing happens.. You have no fight left.

Today was one of those days. I was promised extra writing time on an exam. Five minutes before the exam started, they denied it to me. I looked across the room and my heart broke. There were others there - those with broken legs and all.. Of course, they deserved to be there, but so did I. Is not my pain counted as even comparable with a broken leg? Surely, it is ten times ten worse...There was nothing I could do. The pain and fatigue had been so high that I couldn't study much and sitting in the exam, I knew if something did not change, I was most definitely going to fail.. In fact, there was little point in sitting the exam at all. All that was left to do was cry.

Instead, I lifted my eyes to the One who can help & said if you want, please take away a little of this fatigue and pain to pass this exam. If not, I will surely fail. Just a little, please. What did God do? A million times more than that... Where everyone else had let me down, I kid you not, I barely had to wait a minute before he lifted almost 50% of the fatigue for a full half of the exam period. He helped me think; He helped me ignore unimaginable pain levels; He said there by my side, each minute. There were so many questions I hadn't even studied for because my brain fog stopped me from understanding anything but God's bigger than that.. How could tax law stand against its maker and mine, God! If you have fibromyalgia, I know you understand just how I was feeling and the impact of what God did for me. As I walked away, after it was over, my eyes welled up with tears of thankfulness (& pain as it grew each minute)...God said: When everyone fails in the 20% they promise you, I'll do for you 100% more than you can possibly imagine, expect or ask for. 

Truly, I know I said it once before this week already, but - If God is for us, who can stand against us? What can stand against us? Nothing! Not fibro! Not even unfair discrimination / lack of support.. Nothing! 

The world often sucks..... but God is forever good.

Fibro Myth #5: You don't look sick, so you must be feeling better

Just because you can't necessarily see our illness on our faces at first glance does not mean that we are not sick. Our illness may be invisible to you, but we are not. And our suffering certainly is not.

If you are chronically ill and have been so for a year or more, chances are you've heard atleast five people - doctors, friends, colleagues or family - say that you don't look sick. They might say something like, "I can tell by looking at you today that you are well". You've probably felt the sting of comments such as those.. Let me tell you it hurts.

Really, could you imagine saying that to someone who's just been diagnosed with cancer or a tumour? Or to someone who's torn a ligament in their leg? Definitely no!

The only way to stop or prevent these hurtful comments is to spread awareness. We need to tell our friends and family that those comments are hurtful. We need to share about how fibromyalgia works and how we can be in imaginable pain, while still not looking it.

A friend of mine wrote the following, which you might find helpful to share with friends/family:

• You can't see that it is taking every ounce of physical and mental energy to keep it together as my pain levels are overwhelmingly high. You WILL see me concentrating hard, sweating and getting exhausted quickly. 
• You can't see that I am battling migraines. You WILL see me take a sick day, reach for my medications constantly or massage my temples to ease the pain. 
• You can't see me getting lightheaded or dizzy whilst walking on stairs or taking steps. You WILL see me not walking in a straight line, touching my head and looking disorientated. 
• You can't see the pain, bloating and uncomfortableness from my irritable bowel issues. You WILL see me eating less, not enjoying eating and using the toilet often. 
• You can't see that I am in agony/ crisis pain levels. You WILL see me grimace as I carry my laptop, walk slowly and wish for the end of the day to come sooner. 
• You can't see my fatigue. You WILL see me drinking cups of tea, lots of water, taking breaks and holding my head.
• You can't see that I am panicking because the light and noise in the room is giving me sensory overload leading to a migraine. You WILL see me close my eyes, doing a mental calming exercise and not being attentive to everything that is going on around me. 
• You can't see my feelings of isolation or loneliness. You WILL notice that you don't hang out with me as much. 

May 12th has been designated as Fibromyalgia/CFS/ME & Other Invisible Illnesses Awareness Day, in honour of the famous nurse, Florence Nightingale. She was born May 12th 1820. What is not often known, is that she had a long term, debiliating illness, Brucellosis aka Crimean fever, brought on from contaminated wheat or milk, which caused chronic muscular pain. She knew intimately what living with chronic pain was like. Please get along side this day and share with those around you, every chance you get, about life with chronic illness.

For those who may have made these comments to people with chronic illness, let me let you in on a truth: Spend a day with your chronically ill friend & I guarantee you will be shocked at how much pain they have to deal with, amazed that you never saw it before, and bewildered by how your friend manages to do all that he/she does with this kind of daily pain.

Fibro Myth #4: I know the feeling, I get tired too!

Ever heard your family or friends or colleagues scoff when you tell them you're exhausted? Do they say, "yea, me too"? Do you feel like you're a dead man/woman walking?

Source

Unfortunately, for most people, having fibromyalgia also means battling extreme chronic fatigue symptoms. Chronic pain and fatigue often occur together - as many as three in four people with chronic, widespread musculoskeletal pain report having fatigue; and as many as 94 percent of people with chronic fatigue syndromes report muscle pain.

Being fatigued is different from just being tired. According to Dr Karin Olson, a University of Alberta professor (Faculty of Nursing), individuals who are tired still have a fair bit of energy, so although they may feel forgetful, and impatient, and experience gradual heaviness or weakness in muscles following work, this is often alleviated by rest. Fatigue, on the other hand, is characterized by difficulty concentrating, anxiety, a gradual decrease in stamina, difficulty sleeping, increased sensitivity to light and the limiting of social activities once viewed as important. Individuals with exhaustion report frank confusion that resemble delirium, emotional numbness, sudden loss of energy, difficulty both in staying awake and in sleeping and complete social withdrawal.

Unlike tiredness, long-term use of caffeine and other stimulants are generally avoided or minimised by people experiencing fatigue and exhaustion, as these substances "fool" the body into thinking it has more energy available than it really does.

So as helpful as your friends and family are trying to be with their comments, the fatigue/exhaustion suffered by chronically ill is actually not the same as tiredness. We, too, struggle with tiredness, when we are  extremely busy etc but we struggle with fatigue too, which is by far more sinister than the tiredness.

Support National Pain Week!

To those of you struggling with chronic pain, who know others who do or who just plain believe that chronic pain needs to be addressed by the government, please consider supporting National Pain Week 2012.


Here's some practical things you can do to help:

1. Sign the online petition to the Senate to request them to address and take action on the issue of chronic pain in Australia.

2. Print out a copy of the written petition to the House of Representatives and sign it. Get your colleagues, friends, church members, family etc to sign it. Send it via post to Chronic Pain Australia.

3. If you struggle with chronic pain yourself, then please register on the National Pain Week page and add your face to the 10,000 faces of pain campaign. Show the government that we are not small numbers and that this issue deserves attention.

4. If you do have the energy, make an appointment to see your local MP. Tell him/her about the issue of chronic pain, the pain you feel, its impact on your life and work etc. We need to let the government know that is not a passive issue raised by a few but one that deserves attention as it involves the daily pain of many in our country.

5. Inform Chronic Pain Australia of which MP you've met with and when you discussed chronic pain with them so that they know how many local MPs have heard.

Click here to find out more details about the above.

Even if you can't do all these steps, please do as many as you can. Together, we can make a difference!
Together, we can be heard!

Our God is for us!

"I, even I, am he who comforts you.
Who are you that you fear mortal men,
the sons of men, who are but grass,
that you forget the Lord your Maker,
who stretched out the heavens
and laid the foundations of the earth,
that you live in constant terror everyday
because of the wrath of the oppressor,
who is bent on destruction?
For where is the wrath of the oppressor?
The cowering prisoners will soon be set free;
they will not die in their dungeon,
nor will they lack bread.
For I am the Lord, your God
who churns up the sea so that its waves roar -
The Lord Almighty is his name.
I have put my words in your mouth
and covered you with the shadow of my hand.
I who set the heavens in place,
who laid the foundations of the earth,
and who say to Zion, 'You are my people.'"
Isaiah 51:11-16

This passage is encouraging the people of God, who are struggling under foreign rule, who are crying out for God to send their Messiah, that God is sovereign. There is no need to fear their foreign rulers or the persecution they face, because they are God's people and the Lord, himself, has them covered & protected by the shadow of His hand. It predicts that wonderful, amazing day in the future, when we will spend eternity with God, when we will be set free from our rebellious bodies and be free to be God's people.

For us, as chronically ill, it has an additional meaning too - Because not only can we long for the day when God will take us to heaven to live with Him, but we can also long for Him in the everyday. He is powerful, more powerful that the disease that oppresses us, that causes us to live in constant terror of pain, being isolated and lonely or being unable to rest. He promises us that we will be set free, according to His promises and in the meantime, we can be sure that we will not be consumed and die in the dungeon of our illness and our daily needs (bread) will be provided for. He will give us words to speak, when we cannot find strength to speak ourselves and we are forever, protected and carried in the shadow of His hand. We are His people, because Jesus restored us to God by dying in our place on the cross.

This is the God that Paul speaks of, when he says, "If God is for us, who can be against us?" (Romans 8:31b). God is for you and he is with you today, no matter where you are at, be it a high, happy place or a dreary dungeon, dreaming of death; He is with you today and always.

Fibro Myth #3: If you just exercised more, you'd feel better

Fibromyalgia is NOT caused by lack of exercise.

In this world, there are many things that can result from not exercising - obesity, increased risk of heart disease etc. But, fibromyalgia is not one of them. You, your friend or your family member did not develop fibromyalgia by forgetting or neglecting to exercise.

If you've been closely watching a fibromyalgia sufferer's life, chances are you've noticed a marked decrease in the exercise they do, possibly even to nil. What you are seeing is symptomatic, not causative; ie. Your friend slowly loses the ability to exercise as it is becomes more and more painful to do so, because they have fibromyalgia, not the other way around. Your friend might be able to continue gentle exercising such as gentle forms of yoga, water relaxation exercises or short walks when they have sufficient energy to do so. Unfortunately, vigorous forms of exercise such as swimming, marathon running, hiking etc are no longer advisable as they trigger significant amounts of pain.

Personally, prior to fibromyalgia, I used to love to walk and run. Most people find running on a treadmill to be boring and repetitive, but I used to love it. I begged my dad for years to get a treadmill for our house. But over the years, I slowly lost the ability to run on it. I used to enjoy nature walks and hikes, but once again, I had to cease them due to my increased levels of pain. I've had plenty of doctors along the way, who've thought that by getting me back to exercise, I'd get better. In fact, for two years, this is what my physiotherapists tried to make me do. And I didn't know any better at the time so I tried with all my might. The only effect I ever saw was the pain shoot from my arms to my legs, causing me to be unable to walk or stand because of unimaginable pain levels in my legs.

So friends, exercising more is not the cure to fibromyalgia & in a large proportion of cases, trying to exercise at pre-illness levels will actually cause significant harm and increased pain levels.

Fibro Myth #2: You're so lucky that you don't work / work part-time

Contrary to popular belief, Fibromyalgia sufferers are not lazy people who are looking for an easy way out.

None of us long to work part-time or to not work at all. In fact, if you speak to most sufferers, they long for the days when they used to be able to work full-time.

We have little choice except to work reduced hours or not at all because of the impact that fibromyalgia has on our lives. At the end of 2010, I lost my ability to walk/stand without pain. I started work in March 2011, eager to start my new career. By the middle of July 2011, I was exhausted. I gradually stopped sleeping. I needed to spend my whole weekend recovering from extreme pain levels. I had to be medicated constantly, even if all the medications did was take some of the edge away from the pain. By the time I was diagnosed in August 2011, I was nearing my wits end. I knew that if I didn't get a break soon, I was going to drop dead.

Thankfully, my work was willing to allow me to take three months off and return to work this year on a part-time basis. Working 3 days a week is still challenging. My two days off are spent corresponding with doctors and trying various things to reduce the pain and to be able to rest. By working three days a week instead of five, I actually have a weekend, not just two 'drop dead and sleep' days.

Day after day I am inundated with people telling me how I can't complain that I am tired or how I am "living the life" by not working full-time. I have colleagues question me about what I actually do on my days off and why I am not partying or shopping on those days. If you're a fibro sufferer, chances are you've been hurt by comments like these before. Let me be frank, I choose to work part-time because I am not ready to lose my career over health yet. I choose to work part-time because I can still achieve and do something, even if it is minimal compared to my full pre-illness capabilities. I choose to work part-time because I have to earn something. I choose to work part-time because at the moment, there is no chance of me getting the support I need from Centrelink to be unemployed. I choose to work part-time over full-time because I need it to survive.

Dear carers & friends of fibro sufferers, please be aware of the pain caused by comments such as these. Your friends with fibro are not lazy! They are doing what they need to survive. In an ideal world, we would be allowed to rest & our illness would have the respect it deserves. We would able to work the hours that our bodies can handle. But this isn't an ideal world, we are just doing the best we can to survive. That does not make us lazy; that makes us fighters!

Have a little Compassion....

This Sunday is Compassion Sunday! Compassion is an international Christian child development and child advocacy ministry committed to working in partnership with local churches around the world to foster the spiritual, economic, social, physical and emotional development of children living in extreme poverty in over 26 developing countries.

I have been a committed Compassion sponsor for over 6 years now.

I sponsor two kids, Love & Sumaillah, whom I love dearly. I also sponsor Compassion's child survival program in Pitipana, Sri Lanka and a few other Compassion projects. 

Personally, I think there's few other things as rewarding as sponsoring a child. Children are our future, and we often forget how lucky we are to be born in a Western world, to well-off families. We have never had to worry about what to eat, apart from being burdened by first world problems, such as decided whether to by McDonald's or KFC. We have never had to worry about having a roof over our heads. We've never walked miles and miles to get water. We have so much, that we take for granted as our birthrights; so many things that our brothers and sisters in other parts of the world have to fight neck and tooth for. 

So what should our response be? To be thankful and grateful to God? Absolutely, it is from His hand that we have all that we have. But that is merely the first step. The next is to be generous with what we have. The early church in Acts modelled what generosity among Christians should look like - In Acts 4:32-27, we learn these two lessons about generosity: 

1. No one claimed that any of his possessions were his own. 

This is what our attitude towards money should be like. It is not our own, but given to us by God. Therefore, we should choose to honour Him in how we spend it. Now, this is not to say that we should give it all away. Saving is good, providing for your family is good too. In other parts of the Bible, Paul tells us that we should look out for widows and needy in our families so that they do not become a burden for the church. But, I believe this passage is telling us we need to be generous, to be willing to hold money in looser hands and to be willing to give to the needy - Why? Because Jesus gave up everything for us, including his rights as God, to die for us. What a generous God we have! 

2. They shared what they had and there were no needy persons among them. 

They saw each other for what they were - family; fellow brothers and sisters in God's family. Paul saw the command to look after those in your family to mean all in our spiritual family too! Yet we know that this is not how it is in the world. In reality, according to United Nations, if 10% of the world's richest people gave away 10% of their income, we'd have eradicated absolute poverty already! We ask & ask & ask God to provide for us, not realising and willing to realise that He has already given us the resources we need. So let's be generous with what we have. If we can't do it now with what we have, we will not be able to do it when we've accumulated more savings. 

So I encourage, you friends, to be generous today. Consider what you give to those who are needy and to God's work around the world. Give, as freely as He has given to you. We could all use just a little more compassion in our days..