‘Stop apologising’: What those of us living with chronic illness need to remember

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It’s time to talk about it.

I rolled out of bed one Sunday morning and made it as far as the hallway before my whole world started to swirl and I was falling. Logic tells you that once you reach the floor the falling should stop. Even though I knew I was lying on the floor, my stomach kept lurching. I frantically tried to grasp at something, anything to stop the sensation. It didn’t work.

And so began the last five years of my life living with Migraine Associated Vertigo – basically instead of getting the pounding headache we normally associate with migraines, you get – I get – vertigo. The problem is that lying in the dark, going to sleep and waking up the next morning doesn’t fix this type of migraine.

I spent months lying in bed 24/7 feeling like I was falling. Every sound, every movement, every switch of the light – made it worse. There was no alternative. I had to take serious medication and begin the ascent up to being able to stand millimetre by millimetre, month by month. And here’s the thing: as difficult as the physical experience is, beneath the surface there is a much bigger game unfolding. One nobody talks about. It’s your emotional free-fall and the ways you are trying to hold it all together inside.

Like millions of women living with chronic illness and invisible illness, I’ve had to navigate not only the physical condition, treatment, drugs and side effects, but also the really hard stuff. Like trying to manage my career, deflecting the unhelpful ‘helpful advice’, creating some badass boundaries in all my relationships. Plus the heartbreaking stuff like missing my best friend’s wedding.

So what do you do with all these feelings and circumstances? How do you find a way through?

Learning to live with chronic illness is a work in progress. Here are the most important lessons I’ve learned:

 

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The Power of Ritual

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On Monday, my beloved and I held a Soul Love Ritual where we consciously committed to go deeper with each other in our relationship and we symbolised this by the ‘traditional’ wearing of rings.  It was beautiful, raw, real and we both glowed as the new energy swirled in.

I want to share with you how we consciously closed out the old patterns, hurts and assumptions about each other before we moved into the new commitment. 

You can use the process we designed for anything you want to consciously release in your own life (including the whole of 2020 if you like:)

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The Story of Women and Power

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Sometimes the biggest issue I think I have is ‘managing’ everyone else’s feelings. Somehow I ended up with this life-long feeling I am not only responsible for how everyone around me feels, but also for ‘fixing’ it and getting them back to feeling happy. And let’s make no mistake about it, society and in turn plenty of people in my life encouraged this belief and pattern.

So how does this change??

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Artwork by Christian Schloe

The Power of Permission

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No matter how our lives look on the outside, what our career path is, whom we have intimacy with, where we live or what we do, we are all longing for healthy relationships. Firstly with ourselves, and then with others. And frankly, we want to cut the crap and get on with being happy. We’d also like to do all of this by dinner time if possible.

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Living from the Inside

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What is happening?

I can literally feel the world inhaling. Taking in a deep breath. Savouring the quiet.

When I feel this in my body, my body relaxes.

I can also feel our collective anxiety. Have I felt anxious? Yes. Have I thought “You have got to be f*cking kidding me?” Yep.

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Artwork by Christian Schloe

Moving on from Unrequited Love

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For over a decade I did all the things I could think of, to attract and be with a romantic match. I did the work on myself- loads of it, deep work. I went to workshops on sensuality, I took up Tantra, I meditated, I cleared out my old relationships, I owned what was mine and looked at, and I mean really looked at it.

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The Labour of Love

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It has taken me years to come to terms with one of the most obvious truths about intimate relationships: that there is labour in love.

We have all heard that you can’t change a person, and that loving someone is accepting them as they are. These ideals sound great in theory, but let’s face it, none of us actually practices this with others or even ourselves.

Perhaps like me, you added some fine print:

I accept you wholeheartedly, except when you do precisely the thing that annoys me the most, after I have very patiently explained a hundred times how you should do it differently”.

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