Hi, I’m Carly…
And this is my online home I welcome you into. Much like entering any friend’s home I hope that you feel the energy and the warmth of a good host, and that you align with my decor and style. I hope you look forward to visiting me regularly, where we can mindfully curl up on the sofa, with a cup of peppermint tea as we chat, giggle, share, love and inspire one another.
And much like any home, there will always be changes to make as time evolves – as I myself evolve. For nothing is static here and I have watched this space shift and shape a lot over the past few years. For now though, there is a growing sense of clarity emerging – within my bones, within my work, within myself; and I credit my writing for this profound insight and emerging confidence.
And yet, ironically the uncertainly, especially within my health situation is simultaneously as present as ever. More so infact. And thus what I have come to fully realise is that – dark can and does co-exist with light – all of the time. And that it is okay to acknowledge both within our circumstances.
I admit that when I initially began blogging I held back from sharing so much about my health situation. I felt scared to share it incase it began to define me in your eyes (because it is certainly not who I am.) Incase too it triggered old feelings of shame, and incase I faced harsh judgement once again around this illness. Because looking back I see how the attitudes I encountered in the early days were nothing short of traumatic. And therefore I felt like I had to let you gradually get to know me before I could fully open up. Yet, after a while I felt uncomfortable with the elephant in the room – so to speak – and gradually my writing simply had to to align with the new way I was beginning to live my life.
Acceptance in real life gradually transforming into acceptance on the page.
And only now do I feel truly authentic and proud.
I can be mindful and grateful at the same time as being scared and unwell.
I have let go and shook off all the stigma as I finally step completely into my own worthiness.
And you know what, in doing so, I have attracted so many aligned and beautiful friendship.
Thus this is the path I try my best to mindfully navigate, desperately hoping of course that it does get easier, because I have to tell you that there is a basic requirement and level of health one does absolutely need to be at to even function within the world. Mostly I have never been at this basic level, and certainly currently I am far from it.
I willingly implement ALL the tools I have learnt over the past decades in order to help me stay afloat, however, in the spirit of full transparency I do have to express how much I need medical/physiological help – and always have – to unravel these complex conditions. (Labels often mean little in reality but for the sake of ease, I am mainly dealing with ME, CFS, Autoimmune Disease, Lyme, Adrenal insufficiency, Immune dysfunction, Parvo Virus, POTS + Hyper-Mobility + Mild Lupus.)
Because, let get real, life with a severe chronic long term illness (I am currently at year 22) is hugely devastating and impacting. When illness consumes every single second of your day, when it limits life quality so dramatically and consistently without reprieve (and many people under-estimate how much it really does in my case), when dreams have remained just that, when normal life trajectories have not occurred, when the symptoms and exhaustion are beyond heavy and dangerous even, and mostly when the medical professional have nothing to offer, and when you have no idea if/when things will ever change – then it is actually beyond belief.
This is reality as it stands.
I will also acknowledge how everyone’s journey (and recovery) is so individual, and how too how the length of time combined with severity and age changes everything. It just does – in ways one may not even begin to consider, for 5 years in is so very different to 25 years in – even just in terms of how fragile the body systems will have become, and therefore how precarious any treatment becomes. But also practically and emotionally because so many of us have never encountered the basic freedom or independence of being an adult, nor the chance to create a life and a family. Yet, we are perhaps the ones with the most faith despite it all – because this is the positive choice we make and the mindset we adhere to.
And that my friends is the whole truth.
Thank you for being gentle and allowing me to share such vulnerability.
More and more I find myself allowing my emotions to be witnessed, felt and released. I am learning (or trying) to flow again, even though I continually feel stuck. And actually the commitment is sometimes enough in itself – it becomes a blueprint to guide me home each time I stumble.
As is often the way within dire situations, I find myself firmly treading a soul journey alongside a health one. Both have helped me grow in ways I never imagined. Both make me strong and both make me weak.
This soul journey is bound to have a lot more to teach me, and I must remain open to the mist which swirls.
My intention is to simply share my own story, as I navigate onwards, regardless of results and circumstance. To open up conversations and attract like-minded others to join me, as together we remember who we are at a soul level, and as we honour our strength + determination, discover our passions and creativity, and hopefully regain our health and rebuild our lives.
My vision is that perhaps I inspire others to write and share too. Or at least realise it is possible.
Truthfully though, I actually cannot believe that this is where I am.
That this is how it is.
And yet, this is where I am.
This is how it is.
Acceptance and surrender mingled in with determination and faith.
A balance impossible to ever get completely right when the body is quite so sick.
And all I can do is try, and remember who I really am underneath. I can feel it all, and then anchor back – as my mantra – to light + beauty + gratitude + love + truth – when possible.
Because quite simply I don’t know a better way?
And as I explore deeper, I unintentionally and organically find myself becoming the researcher, the healer and the person others turn to – which is interesting…and an honour.
I want to take a moment to share how I am grateful for so much, because there have indeed been so many genuine blessings arising directly from this journey; but quite simply I am ready to be well and participate.
For now I continue blindly, step by baby step, as I can, when I can, rolling with the waves in a storm which has not yet come close to passing.
I sit by my beautiful beach and breathe in the serenity…
Hope – my constant companion.
Blessings – my foundation.
Writing – my soul work.
“You only see me at my best” is perhaps the truest statement ever.
Take a pause. And re-read that.
Because whenever we meet you will never realise that I haven’t perhaps been out of the house for a month. You won’t necessarily see beneath my chatter, and why would you? For a brief moment I want to be the real and normal version of ‘me’ after all. Yet, thankfully, through this blog (and my work) I have created a place to show the hidden side – and somehow that balances the frustration in a way for me.
It is a sweet outlet and I could not recommend it more.
Finally I feel that am finding my place in this online world – even if it’s not at all how I dreamt it would all evolve…
Initially I held back for far too long because I was waiting to share from a place of recovery. But, that isn’t yet my story. And so I share what is. Now.
(You can read more about my blogging story HERE and HERE)
I feel like I am providing something which was perhaps lacking? And maybe this is ALL my purpose.
Certainly I honour this privilege because there are not many blogs/writers out there which represent this unique situation. Millions of us have become a collective and invisible group and there are so many suffering who are so brave at heart and strong in mind, yet unacknowledged and under-represented. I write for myself, and I write for these people, and so too for anyone else I may attract along the way. You are all welcome.
I desire for us ALL to rise collectively. I welcome sisterhood,tribe and celebrating one another. For this is the energy I want to reside within in our wonderful world. An consciousness of expansion and giving and love. And I do believe that we can begin to create the shift we wish to see. We can call it in even in little ways. I know that I have begun to.
I needed to write more than anything.
A passion and purpose is being realised. And yes, I am extremely grateful.
I go forward with constant inspiration and ideas in my heart.
They tell me I am a dreamer. I know I am not the only one.
And likely there will always be frustrations too – in every way and in pretty much every occasion I am sure. That is okay.
The journey continues with every single breath…
I hope to encourage others to be fully themselves, and to be be fully in their own present moment.
Let’s look for the rainbow even as we feel the rain.
There is no one set path on this journey and I believe that you weave in and out of methods and modalities at various points, and that you follow the crumbs of your own intuition, as you open up your heart.
I now consider self-love/care the best approach alongside any medical treatment my body needs. I meditate. I practice yoga. I breathe in Mother Nature. Food is my medicine. And organic and mindful living my solid foundation.
I very much remain a work in progress.
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I’ve previously written much more about how my health story unfolded HERE. And How I have had the flu for 22 years!
(And there are more specifics on my Fundraising page.)
But I will leave you will a peek below…
To cut a long story short I came down with the flu overnight at age 16 and was transformed from a completely fit and healthy girl into someone for whom sickness took over. About 5 years into the illness (after finishing Uni) I crashed completely and became bed-bound and very poorly, needing full time care, and I could not be left alone. Suffice to say that at this point I broke down in every single way a person can. It was all too shocking and severe.
Since then I have either been in a predominately housebound stage, or a worse bed-bound stage. With brief semi-reprieves during parts of some days. On the one hand I have forgotten health completely, and yet on the other I remember it fully…
“I was thrown into the all consuming chaos on New Year’s Eve 1995 to be exact, just a few months after we had relocated 200 miles to Kent. A year of massive change climaxing into something far greater than anyone could ever anticipate.
And not in a good way.
My friend Emma had come down to stay with me and we celebrated at a pub with a group of people we barely knew, feeling the (heightened) self-consciousness of being teenagers wildly out of our comfort zones. To be honest whilst we were determined we would be ‘out’ as the dongs chimed Midnight, the dressing up and giggles getting ready together were a millions times more fun, and secretly we were both relieved to get back home as soon as we could – our reputations intact at least.
I remember the night so clearly. A sense of unease and apprehension mingled with excitement. Wanting to fit in and build up my social life in this new place. I wore a short black dress with a shiny silver T-shirt. My Denim jacket in no way sufficient for the freezing cold 20 minute walk we took.
In hindsight I’ve often wondered if something so simple as switching that jacket for a cozy fleece parka could have saved me? If I had never caught the flu that night would I have never developed a Chronic Disease?
Crazy harrowing thoughts?
……Besides I already felt slightly overdressed amongst these new alien people brazenly wearing their Mum’s bright red shift dresses and high heels. At least Emma and I had tights on!…”. Click HERE to continue the story
Please do pop back here often. The content is updated as regularly as I can manage, but often it is easier to send a little Soul Note to my tribe over email. Sign up is below.
At present I am in the process of self-publishing my first book ‘i see in words’ which is a dream come true. You can get a peek of the manuscript and read more poems HERE.
Thanks so much for being here with me.