Oh hey! Well, this all feels a little strange in a very lovely way indeed. I feel like it’s been forever and a day since I used to do just sit down and write on things I was deeply passionate about outside of my current job or studies, back when I was a very discontent and lost music student. And fast forward quite some years later, and life has blessed me with some time and space to be able to come back to this warm, comforting, familiar space. So, welcome to my new little home online, very simply, Georgiexoxo. With the start of this, today is special for a variety of reasons. Firstly, I’m a birthday girl, and secondly, I’m here, of course, writing this! That alone feels like such a
Well to today at least, I’m the birthday girl! This time last year my dearest friends arranged a surprise birthday for me in Paris and I can definitely say that this year is much quieter and nowhere near as glamorous! But that’s also okay because I truly feel like my birthday peaked last year (I mean, Paris, is this not the dream of all dreams?!) so it’s actually quite nice to just be still for a moment after such a very turbulent year. So let’s just get stuck into that….(you might want to grab a cuppa this is a long one….!)…..
A huge part of the reason I’ve been away from anything outside of Beauxoxo is that life has thrown some challenging and uncertain times of late, culminating in being diagnosed with Scleroderma earlier this year.
Scleroderma, (the name of the condition comes from the Greek, ‘sclero’ for hard, and ‘derma’ for skin) is a rare, chronic disease of the immune system, blood vessels and connective tissue and affects 2.5 million people worldwide.
There are a few variations of Scleroderma and I have limited systemic sclerosis meaning that the excess of collagen causes scarring and stops the affected parts of the body such as the heart, oesophagus, blood vessels, kidneys, lungs, blood pressure and digestive system from functioning normally (for more information please view and support the work of the wonderful SRUK).
One of the reasons I wanted to post about this so openly is because I know there’s a lot of people out there like me who have battled with a ‘clusters of symptoms’ with no support or light at the end of the tunnel. I’ve battled for 10 years with things that I thought were all completely unrelated (I
Like every undiagnosed, chronically ill person reading this knows only too well (and it breaks my heart there are so many of us) this period of time left undiagnosed is painful not just physically, but also emotionally unbearable. In a nutshell that’s really where my head and heart has been over the years. Tormented. Confused. Bewildered. Lost. Alone. Because when you’re chronically ill and undiagnosed, you enter the unsettling world of ‘the waiting game’ and this has chipped away at everything I am. You have to fight relentlessly and it truly feels being in an actual ‘game’ attempting to fit the pieces of the jigsaw together yourself (incidentally, this resulted in me finally receiving help). But in this ‘game’ it feels like there are no winners as you start a never-ending cycle of different doctors, oh so many opinions, endless misdiagnoses. Oh, and you guessed it: waiting, waiting, waiting.
I’ve been back and forth between so many doctors over the years and more times than I can remember leaving in tears begging to be helped. Each time you try to gather further strength to continue battling it all. And you go back and forth yet again to discuss everything you’re experiencing in just a few minutes of their precious time. Sat nervously in so many waiting rooms clutching the notes of everything you want to say like it’s a job interview. Just hoping and praying that this will be the appointment that counts. But it never did. You’re fobbed off with ‘you have a demanding job get some sleep’, ‘that’s quite common for girls of your age’ and so the awful sweeping judgements continue (does anyone want to start a bingo of them all?!). So instead, I had to rely on and fall into the arms of my simply incredible family and friends for support even though they’re not exactly sure what’s going on. Because I hadn’t a clue either.
I started to feel like I didn’t know who I was anymore, as my body was transforming beyond my control and I didn’t know how to help or stop it getting worse. This meant the loss of quite a number of relationships for the first time in my life that shattered my belief in the human spirit, that coincided with a similar shift in my career and acknowledging what I was now able to do on a daily basis. During this isolating, heartbreaking time you have to learn to accept yourself, your condition, for whatever it could be, and you have to learn to love yourself extra hard to survive.
Over the years the choices and compromises have felt so unfair and without reprise. But looking to the future, (she says as she refuels the biggest mug of green tea to fuel this post), whilst having this, and other conditions, may be an extra challenge in life, I can say now that it has also provided me with a perspective on life that I would not have had otherwise.
Very simply for me personally, that has been a heightened experience of pure and simple appreciation. And, I’m thankful at least, to say that now I’m finally coming to a place where I can appreciate the gifts that I am now cultivating as a result of my situation. Not the condition, my goodness no, to accept that modern medicine cannot restore you is a constant grieving process, but what is, and what has happened to me is ultimately part of my story. I know it’s totally okay to grieve this on a daily basis. but at the same
New Online Home
This now leads me nicely to how I’m using these gifts to move forward and finding new meaning for both myself personally and in life. So firstly, I’m here because more than ever I’m not taking anything for granted anymore. Time feels more precious than ever and rather than the ‘someday’ I want today to be the day I post and do things where possible that I love if it’s on my mind (you wouldn’t believe the number of things I’ve seen and thought ‘I’d love to blog about that’!). As corny and cliche as it sounds, I’m one million
So whilst this isn’t a happily-ever-after story I figure it’s pretty human to wish we could do more and have more no matter what our circumstances, right?! I’ve felt deep sadness and pure elation for life all at once and the two are ever changing depending on how my body feels that day. But this period of struggle has also been a catalyst for an abundance of growth. It naturally freed me of things that no longer served a purpose and allowed me to dig deeper into understanding who I am, what I really want in this life and to reestablish limits and boundaries where they were so desperately needed. And I think coming back here with this headspace will ultimately help me make content that truly feeds my soul and that will show.
I’m aware I’ve written a complete novel so let’s round this up with a huge thank you. To you reading this right now or even if you just made it to the first paragraph. I’m beyond humbled by your time, generosity and support. Thank you so much, from the bottom of my heart. And it’s your constant love and support that I will turn into strength so that I can create all the impossible things. Here’s a little quote that seems rather fitting to end on by the goddess that is Marie Forleo:
“….no matter what might be happening in our lives remember that we always get to chose how we’ll think about it. We have the power to believe that something else is possible and have faith that things can and will change”
Now, there’s nothing I can do to change my situation, I live with something that there is no cure for and I’m sorry marketing world but not even all the kombucha and detox drinks in the world can’t solve this one, but, if this is the life I’ve got, and if I have to live it like this, then so be it. I’ll look for those little moments of happiness each and every single day where I can find it. Those little moments of precious stardust whimsy. And I thank you so, so much again for being here with me
With all my love and heartfelt appreciation,
PS: Finally (pinky promise) I just want to say a huge thank you to Amanda from Hello Designs for this stunning template, to Elaine for helping me drudge up my old blog domain and salvage what I had thought would be lost into an internet black hole forever and for all your guidance, kindness, and support. And truly finally to Anjalee for these photos from my hometown in Bournemouth where I reluctantly had to be a model due to unforeseen circumstances, but who made me feel the most at ease in front of a lens as you understood how much I don’t enjoy that! I’m so grateful to you too for your patience and sweetness throughout it all.
So proud of you and so glad you have this new home.
My dearest darling Bee, thank you so, so much for everything and thank you for being here. I’m so happy to have this little home I really am <3 xoxo
So glad you’re writing again! It was how I discovered your gorgeous creations in the first place. And one thing I’ve been taught about chronic illnesses is that it’s not them that define you, but it’s them that show you who you are. Looking forward to reading about your magical adventures!
Oh darling Ria I cannot thank you enough for remembering my blog. And to know you found me through their originally makes me so teary eyed- just so wonderful and means the world! Your generosity reflects just how much of a beautiful kind soul you are. I cannot wait to share my adventures with you all. With much love xoxo