If I’m Honest: Life with Chronic Fatigue

10903852_715629095224197_3531180708596492937_o.jpg

“How are you?”

This phrase has to be one of the most common in the English language. These three little words automatically slip out in everyday conversation, with the reflexive response being “I’m good!”. A large percentage of the time though, that response isn’t accurate. If you were to ask me this question today, my honest answer would be this: “I am tired.” If you knew that I was a university student, that may not seem like an odd response. You would assume I had stayed up late the night before studying (or partying). You might advise me to go to bed earlier, to drink coffee, to eat better, to exercise more. Only, what if none of these things would make a difference to my level of tiredness? What if I told you I have been chronically tired for 8+ years?

I have had Chronic Fatigue Syndrome (also known as Myalgic Encephalomyelitis) since I was fourteen years old. It developed with little warning. I went from being a healthy, highly active, exercise-loving high-achiever (i.e. major nerd) to overnight being unable to get out of bed. One day I was performing in a gymnastics competition; the next day, I awoke to pain in every part of my body and an overwhelming, all-consuming fatigue that left me completely bedridden for 6 months. I recovered somewhat for a period of time but then relapsed. I was unable to walk or stand up for more than a few minutes without collapsing, and so for a time had to be pushed around in a wheelchair. My body could no longer tolerate foods I had been eating my whole life. At times, my brain was so foggy I couldn’t read, or speak in complete sentences. I couldn’t breathe properly to play my flute, and could only sit upright to play piano for very short bursts. My head ached 24/7 and bright lights and sounds made me cry in pain. Developing CFS radically transformed the direction of my life and my everyday functioning. A lot of this part of my life is a blur.

CFS is a complex syndrome – there are a myriad of symptoms, which vary in intensity and impact. The fatigue itself is impossible to describe – it is not simply tiredness; it is an overwhelming heaviness, a feeling of utter exhaustion to the very core of your being. It feels suffocating and it is inescapable. Unlike normal tiredness, sleep is not the solution. For the CFS sufferer, sleep does not reduce fatigue – you wake up tired, every day. Not sleeping of course makes it worse, and ironically overexertion (being ‘overtired’) often leads to insomnia. The fatigue is accompanied by chronic pain and inflammation in the joints and muscles. Everything hurts, all the time. Physical exertion (inc. walking and standing for long periods of time) leads to abnormally high levels of exhaustion that is not improved by rest and can last for hours (or days). The immune system has been compromised and thus people with CFS do not have the defense system to fight off common viruses – so you get sick, a lot! It is not just physiological – fatigue affects your ability to concentrate, think and process things. (There are numerous other symptoms, see links below.)

Though it affects approx. 2% of the population, CFS is still largely a mystery. There is no known cause, no medication for the treatment of it and no cure. The duration and severity of CFS varies between sufferers and can fluctuate dramatically over periods of time. Despite seeing every type of medical professional under the sun, to this day we have not been able to pinpoint why I developed CFS, or why it has persisted for so long. Over the past few years, my capacity has slowly increased, and while I still experience fatigue and pain on a daily basis and it fluctuates in severity, with each year I continue to improve. It has been a long journey, but I am finally studying at university – a reality that still surprises me every day when I reflect on where I’ve come from. While I am only able to study part time, it is still HUGE to be able to manage the travel and study. I have a job, though have had to take this semester off to allow my body to readjust. I can drive short distances. I am involved in ministry in my church. I’ve gone from not being able to walk down the street to sometimes being able to go for short runs, when my health is good. CFS is unpredictable, and there are seasons where my capacity is diminished, but I am thankful for every day of my life and for the incredible healing God has worked in my body.

One of the frustrating realities of living with a chronic illness like CFS is how hard it is for those who haven’t experienced it (or lived with a friend/family member who suffers from it) to understand. It is an ‘invisible illness’ – from the outside, I look perfectly healthy. The statement “looks can be deceiving” is so very true of a CFS sufferer. Only those who know me very well can tell the difference between me on a ‘good’ day and me on a ‘bad’ day (apparently it shows in my eyes). My limbs aren’t broken, my speech isn’t impaired, there’s no rash or scar to indicate that I am unwell. When I am at my very worst, I am in bed – so the true reality of my illness is not seen. I don’t like to admit that I am weak, and I usually try to hide how I am really feeling. Chronic fatigue is highly misunderstood – you can’t just “push through it”, you just have to manage it. I do everything in my power to embrace the limited energy and strength I do have so that I can live as ‘normal’ a life as possible. Going out, studying at uni, exercising – these all come with a cost, but I try to experience every moment fully, to not take for granted the capacity God has given me to enjoy the life He has blessed me with.

While I am not where I thought I would be at 22, I can truly say that I am thankful for the life I have lived and for all that I have experienced. In the midst of suffering, I have learnt to trust in God’s sovereignty over my life. He has humbled me and shown me that in my weakness, His grace is sufficient. On the days when the pain and fatigue are overwhelming, I can rejoice in the knowledge that I have been brought from death to life through the love of Christ who suffered and died in order to bring me to salvation. Nothing can separate me from God’s love, and that truth sustains me every day. I know that  I stand before Him, forgiven and justified, and any suffering I experience in this life is far outweighed by the glory of eternal life in His presence. I look forward to a day when pain and suffering will be no more; but while it is a reality in this life, I still have reason to rejoice and praise Him, every day.

So, my honest answer to the question, “how are you”?:

I am tired. And I am in pain. But I am here and God is good.

_________________________________

Some helpful links to more information about CFS:

Making connections, changing lives for people with ME/CFS and associated conditions

6 things Chronic Fatigue patients are TIRED of hearing

Center for Disease Control: Chronic Fatigue Syndrome

Better Health: Myalgic encephalomyelitis (ME)/Chronic fatigue syndrome (CFS)

 

 

Advertisements

My best friend is my phone: rethinking social media

My best friend is my phone. Or atleast, it would appear that way, considering how often it is attached to my hand. On a daily basis, I pay more attention to my phone than I do to the actual people in my life. When I am bored, I pick up my phone. When I am anxious, I pick up my phone. When I am lonely, I pick up my phone. When I am tired, I pick up my phone. Even when I am surrounded by people, or have important things to do, I often finding myself picking up my phone. This is not just descriptive of me; almost everyone I know is permanently attached to an electronic device at all times of the day.

In recent times I’ve realised how greatly my communication skills have depleted. I no longer call friends where I once would have; instead, I send them a message, and hope that they will receive it. Instead of taking the time to meet with a person, face to face, and actually have a conversation, I find myself instead sending long, essay length messages detailing my thoughts, emotions and activities. I do this, despite knowing that I am the type of person who needs proper communication. I am a ‘quality time’ person; if I am not able to give and receive love through spending time with and talking to people, then I suffer emotionally. Too often I have important conversations with people via messenger, where words are misunderstood and intentions are not properly conveyed. I’ve seen relationships break down because healthy communication was not established.

This obsession with technological communication goes far deeper though, than poor communication. I feel the need to update all my friends when I am doing something…anything…out of the ordinary, instead of just enjoying the moment. A friend, who I hadn’t seen for months, once said to me, “I don’t need to ask you what you’ve been doing because I’ve seen all your pictures”. This both shocked and saddened me. When did it come to the point where we don’t need to talk about our lives because our instagram and facebook feeds tell everyone for us? Another friend told me today that when she comes home from a trip, she doesn’t feel like she can tell her housemates about it because “we’ve already had that conversation virtually.” Yet behind every picture of a sunset or roadtrip or mountainscape is a story that cannot be conveyed in megapixels. If sharing our lives through social media is stopping us from actually sharing our lives, why do we use it?

What deeply concerns me though, is the reasons behind why we use social media. Most people would say that they use social media to be connected to each other. Yet, are we really connected to each other? Does liking a person’s photo of their Bali holiday really count as connecting with them? Do any of us really feel connected to the faces that pop up on messenger? While social media may act as a means to deepen healthy, face to face communication, if it is the only type of communication we have, and what we rely on to be “connected” to our friends, is it really healthy?

The questions that I’ve raised in writing this blog post are ones that I know many of my friends are also asking. I deeply fear that my relationships have become ingenuine. I want to have deep, meaningful friendship with people who are willing to talk, to meet up, to see beyond the glossy photos I share on social media and ask me about my life, and vice versa. I want to invest in real relationships, in supporting and encouraging and walking alongside my friends through words and interaction, not characters on a screen. I fear that I use social media to communicate because I am afraid of real interaction. I can depict my life as perfect through Instagram and Facebook, yet in reality I daily struggle with fatigue, depression and sin. I want to be real.

I also want to break away from the constant stream of data that has invaded my life. A friend, who is currently on a ‘social media fast”, told me today that she has never been more productive in her use of time since she began her fast. She has more time to write, to read, to see people, and most importantly, to pray and spend time with God. She described it as a season of “restoring intimacy”. I’ve realised that I need to break the addiction I have to picking up my phone, and restore intimacy with my friends, family, with God, and with myself. I need to re-learn how to be alone, to embrace silence and rest, to use the gifts that God has given me – in writing, music, art – instead of being fixated with a screen.

I’m challenging myself to spend the next 30 days rethinking how I use social media. First step: deleting facebook, messenger and instagram off my phone. I will still use them, but I want to do so in a more healthy, God-glorifying way. I also am challenging myself to foster healthy communication with my friends, starting by calling one friend each day for the next 30 days. Hopefully, by the end of this time, I will be able to say that my relationships with people, and with my phone, have improved. I challenge you, if you are feeling the way I am, to do the same.

Chronic Fatigue and the Sufficiency of God’s Grace

storms (1 of 1)-9 Today marks seven years since the day I awoke to the pain that would develop into chronic fatigue syndrome. At 19,  just over 5 years of CFS, I shared this testimony:

Five years ago, in June, just after I turned 14, I was diagnosed with Glandular Fever. I was bedridden for 6 months, and then recovered (but not fully). But then just over a year later (which had been a year of heartache, pain, and terrible loss, but also so much blessing and grace) I got really sick again, even worse this time, and was diagnosed with Chronic Fatigue. It has now been five years since the original diagnosis, and I’m still recovering. These years have been the toughest, most painful, frustrating, heartbreaking years of my life. And yet, they have also been the most wonderful. I have lost so much, but I have gained so much more than I ever thought was possible. 

Through the midst of suffering, I have come to understand, in a way that I know would not be possible if it weren’t for what I’ve been through, what faith really is. It’s easy to trust in God when everything is going wonderfully in life; but when your whole life falls apart and everything you found worth in is stripped away, that is when your faith is really tested. And in this moment, in the midst of the blazing furnace, is where faith is refined, and God’s grace shines brightest.

“In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials. These have come so that your faith – of greater worth than gold, which perishes even though refined by fire – may be proved genuine and may result in praise, glory and honour when Jesus Christ is revealed.” (1 Peter 1:6-7)

I have days when I am still very weak (physically), where the fatigue is so strong that it hurts just to open my eyes. There are days when the pain in my body is so intense that I cannot bear to move. Today is one of those days. But these days are also the days where God is most present – when His strength fills me, lifts me; His grace overcomes my weakness. He says to me, “My grace is sufficient for you, for my power is made perfect in weakness.” And though I am weak, I am made strong.

Two years later, these words remain true. I am no longer enslaved by the fatigue that plagued my body for most of my adolescent life, but I do still feel tiredness beyond the norm. The days where I am unable to function at a basic human level are very rare, but pain is still an ever present reality in my body. God has healed me in incredible ways – physically, emotionally, spiritually – and I am able to do things I never thought would be possible. I look back on my years of sickness and praise God for the ways He worked in me and through me for His glory. His grace truly is sufficient.

Fearless

fearless“Courage is not the absence of fear, but rather the judgement that something is more important than fear.” – Meg Cabot

Today my best friend gave me a necklace for my 21st birthday; a golden chain with an old, worn key as the pendant. Engraved into the key is the word FEARLESS. She expressed to me that ‘fearless’ is a word that describes me – the way that I approach life, the way that I endure through suffering, the way that I love those around me and the way that I seek God. This present could not have been given to me at a more important time; of all the words I need spoken into my life right now, ‘fearless’ is the one I need most.

I do not feel fearless. Lately I have been feeling confused and overwhelmed by what has been, what is and what will be. I have felt lost and spiritually low. I have felt emotionally (and physically) exhausted. Not that I reveal any of these things to the world; only those closest to me see my brokenness. Too often I allow anxiety to consume my being, cutting me off from the people and my God who I love most. Fearless is the last word I would use to describe myself.

Reflecting on fearlessness with another dear friend this afternoon, I have realised that being fearless is not being unafraid. Being fearless is persevering in spite of and through ever-present fear. Being fearless is trusting that God is at work for His glory in every circumstance in a world that proclaims the exact opposite. Being fearless is waking up each day and surrendering each moment to God, asking Him to act through us and in us according to His will.

In the midst of change, broken relationships, sickness, spiritual warfare, financial uncertainty and the innumerable issues we face in life, it is easy to lose sight of the God in whom we trust. Being fearless is not a matter of conquering fear, but surrendering our fears to our God who is greater than our fears. Being fearless is trusting in His sovereignty and goodness, in His enduring love, no matter how deeply anxiety is gnawing at our souls. Being fearless is having confidence that God’s purposes are greater than our own, finding strength in this knowledge, and persevering through disappointment and despondency.

This morning, in a deeply fatigued, emotionally low state, I typed “fear” into my phone’s bible search tool, seeking a verse that would point me to the God of all comfort. I found this:

‘Is not your fear of God your confidence, and the integrity of your ways your hope?’ – Job 4:6

Though I don’t like to read verses out of context, this was a great encouragement. I am not fearless because I am not afraid of anything – I am afraid of many things. Fear is an important emotion to experience; our bodies and minds respond to dangerous and uncertain situations with fear. I am fearless because I place my confidence in Christ, who sacrificed His life to deliver me from bondage to sin. I find courage and strength in what He has done, what He is doing and what He will do. My ability to endure through the trials of life comes from Him alone; it is His strength at work in me. I am able to love fearlessly because He first loved me – and paid the price for my sin in love.

I experience anxiety daily, and am often consumed by it. Yet God is greater than my anxiety, and in Him I do not have to be a slave to fear. In Christ I have been set free, and though fear still overwhelms, He gives me the strength to hold on to the truth of His love and grace. In Him, fear has no power over my life. In Him, I am able to endure through fear and uncertainty. In Him, I am fearless.


 

Photo captured with a Canon Eos 600D.

Key necklace designed by The Giving Keys.

Evolution and Creation

In the midst of essay writing on the impact of Charles Darwin’s writings on the Church, I escaped to one of my favourite places in the world. It is impossible to stand looking out over this valley and think that there couldn’t be a Creator. Evolution is an observable phenomenon in the natural world; it is a controversial subject and is one that many people use to reject God. Yet, the more I read about evolutionary theory, the more I am inspired to respond with awe at the immensity and intricacy of creation and the processes by which it is ruled.

Darwin himself never claimed there is no God, though ultimately he rejected the faith of his youth. Many historians argue that to his death Darwin held a theistic view of Creation (that God ultimately created the world). Regardless of whether you believe that humanity (and all of creation) is descendant from a single organism, or believe creation is a result of a random coincidence and man’s life is meaningless, or whether you believe that God created the world, with order and purpose, and proclaimed His creation to be good (see Gen 1), the beauty of creation is impossible to ignore.

I will never cease to be in awe of my God, who I know breathed life into being, who spoke and the universe was created. I can only respond with praise when I behold sights like this: storms (1 of 1)-29

“Of old You laid the foundation of the earth, and the heavens are the work of Your hands. They will perish, but You will remain; they will all wear out like a garment. You will change them like a robe, and they will pass away, but You are the same, and Your years have no end.” (Ps. 24:25-27)

storms (1 of 1)-30

“The earth is the Lord’s and the fullness thereof, the world and those who dwell therein, for He has founded it upon the seas and established it upon the rivers…” (Ps. 24:1-2)

storms (1 of 1)-40

“Give thanks to the Lord of lords, for His steadfast love endures forever; to Him who alone does great wonders… to Him who by understanding made the heavens… to Him who spread out the earth above the waters…” (Ps. 136).


All photos captured with a Canon Eos 600D.

Location: Burragorang Valley, NSW.

Easter: Christ or Chocolate?

What does Easter mean to you? In a world where Easter represents a long weekend and the eating of exorbitant amounts of chocolate, it can be hard to focus on the truth: that an innocent man lovingly and willingly took the sin of the world upon His own shoulders and died upon a Roman cross for the salvation of all. I am ashamed to admit that I have let many Easters pass me by without truly giving any deep thought to Jesus at all.

It is hard to comprehend what He went through that Friday. I feel like I will never be able to truly grasp the depth of pain and suffering Jesus willingly endured to bring me to salvation. The pain He felt was real – emotional, physical, mental and spiritual. He endured the full emotional pain of having foreknowledge of what He was to face, betrayal by His closest friends, the hatred of crowds who had once praised Him. As the soldiers whipped Him, tortured Him, crowned Him with thorns, drove nails into His hands and feet and hung Him on the cross, He willingly took the pain. He suffered the mental anguish of being called a liar, a fraud, a blasphemer, a sinner; yet patiently and silently endured it all. Most incredibly, Jesus willingly experienced the horror of separation from the Father as He hung on the cross and yielded His Spirit, taking the sins of the world upon Himself.

Yet it is not only understanding the pain Jesus went through to save undeserving sinners like you and me that is important. What we need to understand also is why? Why would Jesus choose to die for us, when we have wilfully rejected Him? Why would God want to reconcile us to Himself when we, as Paul writes in his letter to the Romans, “all have sinned and fallen short of the glory of God.” (Rom 3:23) The answer to that question is life-altering. God chose to show us grace when we deserved wrath, to freely give us life where we deserved death, to die in our place and pay the penalty of our sins, because He loves us! He lovingly made us in His image, lovingly allowed us the freedom to choose to follow Him or to reject Him, lovingly provided a means of reconciliation – Christ himself – so that He could live in relationship with us. He took away our guilt, our shame and chose to forgive us of our sins – no longer counting them against us; He has declared us innocent and free!

Why does our world celebrate a fictional, chocolate-delivering bunny instead of Jesus? For the same reason that we, friends, once saw chocolate as more important than Christ, and maybe in some ways still do. To acknowledge Christ means to acknowledge one’s own sin; to comprehend His love means to understand our own depravity. The world does not want to know Christ because it does not want to change! Even now, despite knowing Christ and knowing His love, I sometimes choose the pleasure of sin over Him. I choose the chocolate over the blood of Christ. Ironically, chocolate is not good for my body*, despite how great it tastes, just as sin is not good for my soul. Yet ultimately, sin only leads to destruction. “The wages of sin is death, but the gift of God is eternal life in Christ Jesus our Lord.” (Romans 6:23) Take a moment to let that sink in, friends. We deserve DEATH, but God has chosen to freely give us LIFE – in and through Christ. This is the true meaning of Easter. This is what we should be celebrating: freedom from sin and guilt, and the joy and hope of eternal life that has been granted us through the death of an innocent man on a cross 2000 years ago.

So what does this Easter mean to me? I don’t want this Easter to pass me by in ignorance, apathy or indifference. I want the truth of His love for me to change my heart. to transform my life. Friends, I encourage you to do the same. Acknowledge your unconfessed sin, and accept His forgiveness. Recognise that God desires to be in an intimate relationship with you, to make you more like Him. Rejoice in the freedom and hope we now have in Him! Celebrate Christ, not chocolate. 

World Down Syndrome Day

Today is World Down Syndrome Day, and I want to take a moment to say how blessed I am to have such a loving, compassionate, wonderful sister. She has grown up to be a strong, independent and enthusiastic young woman. She has achieved so much (in Gymnastics and at school) and has a rewarding job where she is valued as a hardworking employee. She cares for people and has a kind, generous soul. She is intelligent and has an incredible imagination. She loves to design and write stories. She is creative and adventurous. I could write an essay length post on how proud I am of her.

Life with Down Syndrome is not easy. There is a lot of stigma surrounding this disability, particularly the idea that people with Down Syndrome aren’t capable of looking after themselves and living independent lives. My sister is highly aware of the way that people see her – she can tell when a person looks at her and sees only her disability. She works hard at her job, but the government are unwilling to provide funding for her to work more than two days a week. She feels loneliness and sadness acutely. My parents have worked hard to provide her with education and training so that she can have a normal life.

It was hard growing up, seeing the way kids would bully her and say things like “why does she look funny?” (to which I would usually respond, “why do YOU look funny?” That gained me a lot of popularity in the playground. :P) It was hard to have adults place on me the expectation and responsibility that I would look after her – not realising that a seven year old shouldn’t be expected to care for their ten year old sister! I always worried who would take care of her if anything ever happened to our parents. My friends assumed that we had a different relationship than normal siblings – not realising that we would fight over silly things and seek favouritism in our parents and not want to do things together just like normal brothers and sisters do. As she became a teenager and then a young woman, I felt guilty that I was going to parties that she wasn’t invited to, and felt the weight of injustice that people – even those who had known her for years – didn’t count her as a person.

Yet, despite all this, I wouldn’t change a thing. I love my sister for who she is, and am so thankful for the blessing it has been to grow up with her. She is my favourite person in the world. She has taught me what it means to love; to not discriminate or show prejudice toward others. She has cared for me during my chronic illness and shown patience and kindness in the face of my pain. I could not have asked for a better sister and praise God everyday for creating her.

IMG_6158 IMG_6180-2 IMG_6168 IMG_6183 IMG_6162

For more information on World Down Syndrome Day, check out the official website:

https://www.worlddownsyndromeday.org/wdsd-2015

There is a lot of stigma attached to Down Syndrome (such as their lack of quality of life that many see as a reason to promote abortion), and I think these two articles do a good job of expressing the value and quality of life of people with Down Syndrome without discounting the hard aspects facing families with a disabled child:

http://www.desiringgod.org/articles/the-happiest-people-in-the-world

http://themighty.com/2014/11/10-things-siblings-of-individuals-with-down-syndrome-wish-you-knew/

For more information on Down Syndrome, check out these links:

http://www.downsyndrome.org.au

http://keepingupwithds.blogspot.com.au

http://www.downsyndromensw.org.au

http://www.ndss.org


All images captured with a Canon EOS 600D.