Make it, Bake it, Fake it: joy

Finding joy on the eve of my third diagnoversary

May 12, 2016

Restore and sustain me, Lord.
This Friday marks my Three Year Diagnoversary.

Three years since I left my GP's office, clutching an info sheet about this mysterious disease. The prognosis on that paper listed as 2-10 years. A disease I had only ever heard about being this random tiredness disease that had people falling asleep all over the place. Going into that appointment, I had thought it was what I had, well, according to Dr Google and chatting with those around me...nothing else I could find made the symptoms add up. Yet, it was still a shock, it was followed by a time of ignoring and denial (which even now still rears its head), and a lot of tears (which still make there way in!), and there was peace in finally having an answer.

This week is also May 12th...international awareness day for a host of chronic and debilitating diseases including Chronic Fatigue Syndrome and Fibromyalgia. (It is also International Nurses Day...so a shout out to all those awesome nurses who don't get enough pay, sick leave or recognition of the awesome work that they do!).

So I thought it a suitable time to reflect a little... a little about what I have learnt...and what I am still to learn.

The past 3 years (and the torturous 9 months leading up to diagnosis) have been long...yet fast as well. I have been challenged beyond comprehension. I have felt my world that I had built around me crumble down. I have been in pain I could never have imagined...day in and day out. I have cried more than ever. Yet, I have found joy in places I didn't know it could be found. I guess I had never looked there before...so many things must have been clouding my vision.

I have learnt so much about the chronic illness community...about countless, countless individuals struggling along silently. Lacking support, lacking understanding, isolated, lonely, misrepresented, broken, and invisible. It is only when you delve in that you can see these people. Men and women struck down in the prime of their life with diseases that have ravaged the lives they once knew. United in the struggle. United in the pain. An invisible community lurking (not in any sinister way!) within our community. A sub world. Yet, a world full of hope. A world full of individuals not defined by their illnesses, but seeking joy in the little things. Celebrating the small and large milestones together.

I have learnt so much about this disease. A disease where they really still don't know what caused it, they have no idea how to cure it, and have only come across a handful of strategies to manage it. A disease with little to no research funding. Yet, is quite widespread. A disease that is grossly misunderstood by the public, health professionals, government agencies and even the doctors treating it. There is little support available, and what supports are in place for others suffering from illnesses or disabilities don't match the specific disabling conditions of this disease. I have been privileged to be able to share what I have learnt with so many around me. I am thankful for those who have been educated alongside with me and have come along on this journey.

I have learnt that I can be a voice within and for this community. And for that I am thankful...and excited for whatever doors continue to be thrown open in front of me. I came into this period of life not a writer...still scarred from my high school English experiences...yet, God has paved the way for me to be able to share this life. That is a blessing and a joy.

I have learnt so much about me. About the priorities I had in my life. About where I placed my identity. It is only when your identity in your health, or your wealth, or your career, or your social life come crashing down around you that you realise how much you idolised each of these...and found your identity in each of these, above God. It has been a humbling experience. I have learnt to depend on others, to give up the control that I hold so dearly, and allow others to care for me. Independent old me still struggles with this, but I am learning to let go and let others in. I am learning how to trust God in ALL and for ALL seasons of my life.

I have learnt so much about others. I have learnt what it means to be a true friend. I have learnt how to care for others around me who are struggling and in pain. I have learnt how to bless others in ways I would never had thought of. There have been tears...but also many laughs and so many quality moments. All because those around me have cared for and blessed me abundantly.

I have learnt so much about God. He is consistent. He is comfort. He is hope. He is an anchor in this storm. He is my rock. I don't need to come to him with my actions, or my successes. He takes me as I am. He created me. He holds me. All my imperfections are washed away. He takes joy in me, who I am, all of me.

I have learnt so much about joy. And continue to do so. Joy can be hard to find. Yet, I have learnt that it exists independent of my circumstances. This verse... Psalm 51:12 "Restore to me the joy of your salvation and grant me a willing spirit, to sustain me." spoke to me this week. Three years of this disease is a long time. I don't know if it will be three more days or thirty three more years ahead of me doing life with Chronic Fatigue Syndrome. So, my prayer for this week, is that the Lord will continue to help me find the joy. Even when it seems clouded by life and pain. And that He will be my sustenance on this journey, no matter what is ahead.

I'm praying that it may be a "Joyful Diagnoversary to me!".

And there will be cake...as all important milestones require!

Chronic fatigue

What is the deal with pain?

February 25, 2016

I have been pondering the concept of pain lately...my body keeps throwing these curve balls at me...and some days the pain has been off the chart. Completely random...like how can your scalp hurt so much that you cannot find a comfortable way to wear your hair? Or your gums ache like they have been flossed by wire when you haven't flossed your teeth in days (don't tell my dentist that one!)?

Yet, as I contemplate this...I am drawn back time and time again to the 'why'. And time and time again I am reminded of my faith. It's hard to explain...yet when you are lying there in pain, and you cant cope any longer with how your body is reacting, deep down inside you are reminded of hope. A hope that transcends anything physical of this world. That reaches way beyond the here and now. Beyond the excrutiation. Beyond the life on hold. Beyond the high potency pain killers that are not even making a dent. I honestly don't know how I could be doing this journey without hope.

So, out of that hope came these rather poetic ramblings of pain and my faith. Had no intention to pull out a bit more poetry so soon...it just happened!