Make it, Bake it, Fake it: May 2016

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!

Chocolate

When you are sick on top of sick

May 06, 2016

This past couple of weeks I have been sick. Not the usual 'I have a chronic illness' type of sick, but unwell on top of that unwell. You could say I had a case of 'normal' people sickness.

It starts with your body doing something strange that isn't on your typical list of symptoms. For me it was lower right sided abdominal pain, in a place, and with an intensity I had never experienced before. Your brain instantly starts weighing up whether you are imagining it, what could have caused it, whether it is an extension of another symptom, whether you ate the wrong thing the day before, whether you could have overdone it...

This mental battle continues...maybe it's not as bad as I think? Maybe it will disappear by itself? Dr Google provides no help...all his advice say it's a medical emergency, and you should go immediately to the hospital. But what if it is just my body?

A few hours later...

The pain continues. The pain is bad. Hmmm...maybe I should do something about this? This isn't quite normal, even for the stuffed up body of mine.

Being sick on top of sick is a challenge. Experiencing it this past few weeks, led me to some new observations I thought I'd share...

1. It might take everyone else around you awhile to get on board. You know your body, you know when something isn't right. When something is out of sorts. It might not be obvious to any medical recording devices...but you know when your temperature has spiked, even if it doesn't come up as anything. You have become an expert at reading your body. You doubt all the time whether you are sick enough...but you know when things are not right...and sometimes it is a challenge to get others around you to realise that something different or wrong might be going on with your body.

2. Nobody realises how big a deal it is for you to end up at the hospital...you are desperate.

You have had to be convinced by those around you, and by medical specialists to end up there. You spend the whole time questioning whether you are using up resources that could be put to use for others who are worse off than you, you question whether the pain is really that bad, and you forget that many people would end up in hospital for things you deal with on a daily basis. And with a strong dislike of doctors and medical professionals who just don't get it, you are freaked out you are going to have to prove how ill you are, or otherwise you feel like you are being written off.

3. Your pain is not taken seriously. You don't look like you are in pain as bad as you are rating it. But you are use to functioning with major pain. If you didn't function and get on with life in pain, life would not happen.

Medical Professional: "Rate your pain between 0-10."

You: "Currently an 8"

Medical Professional: "Really? That's high! Are you sure? You don't look in that much pain?"
(Not always verbalised...sometimes the look says it all!"

You: "I live with pain at a 5 most days. I have regularly taught kindergarten with a full blown migraine...I can do pain!"

Nurse: "We don't like to release people with pain higher than a 3."

You: "That would be nice, I haven't been below a 5 in years!"

4. You have better access to helpful drugs at home.

Hospital Nurse: "Let me give you something for that pain. How about some paracetamol or ibuprofen?"

Me: "Ummm...how about some chocolate? That might be more effective."

5. Often, you never get an answer. You will never find out, despite all best methods, all tests, all the poking, prodding, praying and Dr Googling. This sickness upon sickness will pass, without a clue to what caused it, what treatment actually helped it, or what it was at all!

And that is where I stand this week...still in pain, still without a diagnosis, one CT scan, two hospital visits, three doctor appointments, multiple blood, urine and ultrasounds later, and a plethora of medical opinions. We still don't know. The medical mystery that I am! And so, you wait, and trust, and work at being thankful that you have a God who carries you, has a plan for you, and knows you and your currently rather defunct body intimately. To whom you are not a medical mystery!!