It’s been just over six weeks since I started taking Plaquenil and Lyrica…once again. On the merry-go-round, 27 months in. And yes, I’m still on the testosterone replacement.
I’ve spoken about my rollercoaster. The emotion. The frustration. The desperation.
I’ve spoken about the hope and excitement. Could this be part of the puzzle?
And I remind myself daily….this too shall pass.
I’ve tried to incorporate 10mins of meditation daily, with a great app built by an Aussie, so that’s got to be a good start, eh?
If you struggle to meditate, like I do, try 1 Giant Mind. It’s the only guided meditation that works for me, I feel like I’ve struck gold.
I’ve also been listening to podcasts from Sean Croxton at Underground Wellness, a holistic and functional filter of what’s making us sick and what we can do to make ourselves better.
I’ve started experimenting with the autoimmune protocol by Dr Sarah Ballantyne and have been tending to my coconut milk kefir. I’ve been watching it ferment, patiently…which is ironic, because patience has never been my forte.
For me it’s another opportunity to experiment, to challenge and to watch my body react.
And let me tell you kefir has made bathroom visits a delight!
And in the strive for continuous improvement, like every keen Type-A person, I even sought a second opinion from another medical guru.
After 30 minutes of consultation with some of the most random questions I’ve ever received from any medical professional, Professor D, concludes with, “I’d like to help you, you seem like a nice lady.”
And I knew instantly what he meant. Because had I come to him 27 months earlier I would have been classed as “not such a nice lady.”
I was angry. Angry at the world, and at my body, at my former employer…someone had failed, and someone had to work it out…pronto!
But time is a beautiful leveller and I assured him I wasn’t expecting a miracle diagnosis or cure, I just wanted to check whether someone had missed something, somewhere or was this it, do I just need to learn to deal with the pain and fatigue. Is this simply, mind over matter?
“When you walked in the door, I instantly thought – Addison’s disease.”
And then he explained why. The excess levels of prednisone I was on at different points to stop the inflammation. The endometriosis that had been sitting there undetected, possible for years, wrecking havoc with my hormonal system. For some reason, my HPA axis was indeed fried.
“I want you back in a month with all your medical reports and blood results, any by the way here’s a few more.”
Clearly the man enjoys his bed time reading.
So I walked away with a wry grin, but not because there was a possibility of another piece of the puzzle falling into place, but
because I had learnt to accept.
To accept that what could have been, should have been.
And to accept that this is where I need to be.
Hanging upside down with no control stick.
Knowing I can’t guarantee the plans I make – my body evaluates this daily, and even hourly.
But the flip side is that I’m in a more peaceful state.
In a less critical mode.
In a more forgiving space.
I have learnt that it isn’t necessary to forgive and forget, but to simply accept.
Wow in a nutshell, well written and just those words gave me a little peace to accept a little more. I have not much idea and feel like I am flying solo with my thoughts. Frustration and no calmness obviously make this disease worse. The mind over matter statement you made – I ask myself that daily. Oh and often say “this to shall pass” However I am not sure how to move forward yet, as you mentioned not sure what way the control stick should be pushed. I feel Neutral at this stage with the lack of understanding and at early stages of diagnosis. Everyone else seems to know (family) Medical professionals are all learning with me. So to get an accurate understanding seems a way off yet. It doesn’t feel real……. that is my main thought. Thankyou for your words. I will try some more meditation and discover the journey of acceptance. Cheers xx
Cindy,
I hear you loud & clear. Diagnosis should bring relief but in fact appears to do the opposite. I battled against it. Tried multiple modalities & medications, but ultimately the only thing that brought me some peace was to quieten my mind. So if anything, I’ve learnt that whilst the battle is on high-alert and happening at the cellular level, it’s the battle in our heads that we first need to master…the rest (surprisingly) does follow.
You will be able to live & even thrive with an auto-immune disease. We just need to accept that our expected trajectory is just a little different to how we had planned for it, and that’s ok.
Wishing you strength and bucket loads of patience.
And don’t hesitate to reach out when it’s all a bit too much.
xx