Image: Michelle sits on an object covered by a purple tones throw. She is in between sections of aquaponics and surrounded by greenery and a red chook house in the background. She is holding a glass of wine and wearing a pale pink crocheted dress, patterned brown stockings and brown t-bars.]
My parents recently sent me a package of photos and newspaper cut-outs, memories of days past. In amongst it all was a newsletter from my old workplace. Myself and a colleague were photographed as part of a feature on our particular hospital in the network. About an hour after that photo was taken I was in ED for the first time. I scan the image unable to find signs of what was about to begin. I look a bit pasty, but other than what appears to be my dedication to a 70s beige-on-brown aesthetic, there is nothing of note. Thirteen years ago this month everything changed and it appears that it happened in an uneventful workaday period of life. Beige. Illness popped up in a world of beige and burst it asunder.
I couldn’t tell you the precise date. I know roughly but it’s been lost over time. The date doesn’t matter. I used to think it did but it doesn’t. It doesn’t add to my story and it holds no value. I remember the feeling though. I remember that. And it is this aspect both on that day and over the intervening years that have moulded me and my life. It is that which has peppered this blog for the past 10 years.
There’s something quite apt that my body has delayed my recognition and celebration of 10 years of blogging. In truth, it’s interrupted much of life, not just celebrations of milestones. Life is catch up at present but that is much of life with long term chronic illness. 10 years came and went last month and only now can I even begin to process what that means. And even that interpretation is coloured by the struggle of the past few months.
I’ve looked back at my early writing and find myself in a familiar and also foreign world. So much of life with a chronic illness is rinse and repeat. The diagnostic processes, frustrations with the medical system, the hope-try-disappointment cycle of finding a collection of meds and other treatments all still the norm. The tangle with what I now know is internalised ableism. The up and down. It’s all still here. It’s all still reflected in the one support group of which I am still part. One support group. That is a change. Early on that desperation for answers, for connection, for someone else to say that what I was experiencing was real, all of it was so incredibly pressing. I collected support groups like I once collected shoes. I still collect the shoes, but my need for multiple groups is long past. I’ve transitioned to a life where illness is still ever-present and requires a large amount of management, but such immersion in that world no longer serves me. If I find a reserve of energy, I throw it into things that bring me joy. I have given my hearts blood to advocacy and awareness for years on end. That became a burden that was exhausting me. Now I need the balance of other things. And it is that which I have sought for the last few years. It is that which is reflected in the drop off in blog posts.
Illness is isolating. Even when you find others with the same disorder, or have a good support system, the actual living part is still yours and yours alone. Working out how to navigate that space is tough. It’s still tough. Every time I’ve thought I had it, it slipped through my fingers. Sifting through the overwhelming amount of “how to be ill” information out there to find the parts that work for you takes time. It’s the putting together of a recipe, one that evolves over the years. It’s the realisation that there were skills I already possessed that just needed a tweak to be useful in this new world I inhabited. It’s the understanding that the perfect sick person doesn’t exist. That the permanently positive is corrosive. And we don’t have to drink the Kool-Aid.
Illness hasn’t gone away. I am still ill. More ill in some respects, better in others. I am writing from bed today as it’s one of those days in the long list of those days. Those days have dominated the last 13 years. There have been days where the incapacity is lessened but it’s never fully gone. Chronic means it never goes away. It is shit or less shit. During those less shit days I actively seek out life. I push harder than a rational mind would agree with, but it has meant that there have been moments I never would have thought possible in the early days. It hurts, even in those moments of glory, but the hurt is easier when it occurs in the context of joy.
I am more ruthless now in how I spend my energy. When I’m in a flare that ruthlessness takes on a sharpness of focus that erases the rest of the world. But even in the day to day minutia, I choose the necessary, then the heart’s food, and after that, if there’s anything left, I may or may not reach out to the world. And every day it takes on a different form. Dependent on numerous factors some of which I am not even cognisant of as they now fall into the realm of instinct. It’s taken time to prioritise my needs. Not that I don’t still feel guilt and live with self-recriminations. But there are more and more times where energy reserves are enough to post a chicken photo on Instagram, because chicken love should be shared, but the ability to check back, read or respond to comments is beyond me. And that’s okay. I can reach out and dip my toe into the word before retreating time and again if that is what I need. If that’s all I can manage. If that is it, that’s okay. For me. For you. For all of us.
I wrote years back about how life becomes okayish after a while.
“Those first days and months are hard and scary and lonely. But you'll make it through. You think you won’t. You'll want to throw in the towel and scream "No more!", but you'll make it out the other side. And you'll do it again and again. I can't predict how your symptoms will pan out over time. We are all very individual. Some will get better, some will have symptoms that wax and wane, some will have a chronic but stable process and some, like myself, will progress. Your body may still be broken, but your ability to deal with it will get better. You will find your stride. You will find the things and people in your life that matter and make you happy. You'll be able to breathe, even when it's bad. It won’t be easy but you'll find that your ability to cope and your acceptance will grow. Your spirit will heal and you'll find direction you never imagined. You are filled with possibilities and, if you give yourself permission, you'll find them. Being ill can give you the freedom to explore yourself in ways you never thought possible. Life with Dysautonomia or any chronic illness, is a life changed, but sometimes that change is a wonderful thing…. Just know, it gets better. Not in the Disneyesque sense of shooting stars and rainbow farting unicorns. But in the real-world sense where you're battered and bruised but you're stronger than you thought and more at ease with your life. It takes time, and there will be tears and disappointment and setbacks. But one day you'll turn around and realise that somehow you made it through, and no matter what your body is or isn't doing, you're okay.”
I read back over that piece and realise even as I was more centred in my new life, I still had further to go, I still do. There are parts I would change. My reliance on double spaces at the end of a sentence that reflect my age, and the idea that my body was broken.
Broken doesn’t work for me these days. I’m a person, not a car. Parts don’t work as advertised but broken has a whole other connotation.
Broken feels unassailable. It suggests a correct way of being and I was not that.
With our bodies and sense of self so intertwined it suggests that I am broken.
Me the person. And that doesn’t serve me.
Broken, when that is to be the rest of my life, is a place I don’t want to inhabit. It comes down to survival. Survival in my heart, in who I am, in the kind of life I want. Broken doesn’t serve me. Broken is a burden. A burden I can’t be bothered carrying these days, not if I have any love for myself. Not thinking of myself in terms of a broken body isn’t a blissful delusion. I am lying here with a puke bag and wincing in the pain burning in my legs which well and truly belies the delusion. But at some point, I integrated it as part of who I am. A part of the whole, but certainly not the whole. I say that with the full admission that I don’t always get it right. That I don’t always feel it. But that I recognise my wholeness right here right now. And that wholeness is worthy of love and celebration.
There is no perfection in chronic illness. We all cock-up. Even those of us who have found a way to navigate this life still take wrong turns. I get frustrated, sad, scared, all of it. I cry and get angry. The weight of it all feels overwhelming at times. The level of exhaustion, physical and mental, that can develop is like nothing I ever knew existed before I became ill. But the things I now manage reasonably regularly seemed insurmountable in those early days. My line in the sand keeps on moving as I realise that even amongst it all I am far more capable than I could have ever imagined.
And through it all there is life. There is laughter and joy. There are friendships and love.
And an integration of it all where I feel more myself than I ever had in 46 years of life.
I’m not sure where this piece fits in the many narratives about illness, but it is my reality, 13 years on from that first ED trip. Ten years on from putting my words onto the blog and out for public consumption. Ten years of growth, missteps, fears and laughter out there for others to read and take from it what works from them. I look back at some of it and think I should go back and rephrase or rework some of it. There are times where my internalised ableism is a punch to the gut in light of where I sit today in recognition of those feelings. But I can’t re-write the past. I wouldn’t be where I am today if I hadn’t worked through all that shit and I know there are long term readers who have been there for the long haul working through it all with me. In the end those words allow me to trace the path to the me who is here on this day.
The support readers have given me over the past 10 years has helped to get me through some of the toughest times in my life and helped me celebrate the wins big and small. Many have become friends. Geographic borders and fickle bodies overcome by the digital world. I will be forever grateful for that. The tiny corner of the digital sphere that this blog started in is now a busy metropolis, and the explosion in voices fills my heart.
Broken, when that is to be the rest of my life, is a place I don’t want to inhabit. It comes down to survival. Survival in my heart, in who I am, in the kind of life I want. Broken doesn’t serve me. Broken is a burden. A burden I can’t be bothered carrying these days, not if I have any love for myself. Not thinking of myself in terms of a broken body isn’t a blissful delusion. I am lying here with a puke bag and wincing in the pain burning in my legs which well and truly belies the delusion. But at some point, I integrated it as part of who I am. A part of the whole, but certainly not the whole. I say that with the full admission that I don’t always get it right. That I don’t always feel it. But that I recognise my wholeness right here right now. And that wholeness is worthy of love and celebration.
There is no perfection in chronic illness. We all cock-up. Even those of us who have found a way to navigate this life still take wrong turns. I get frustrated, sad, scared, all of it. I cry and get angry. The weight of it all feels overwhelming at times. The level of exhaustion, physical and mental, that can develop is like nothing I ever knew existed before I became ill. But the things I now manage reasonably regularly seemed insurmountable in those early days. My line in the sand keeps on moving as I realise that even amongst it all I am far more capable than I could have ever imagined.
And through it all there is life. There is laughter and joy. There are friendships and love.
And an integration of it all where I feel more myself than I ever had in 46 years of life.
I’m not sure where this piece fits in the many narratives about illness, but it is my reality, 13 years on from that first ED trip. Ten years on from putting my words onto the blog and out for public consumption. Ten years of growth, missteps, fears and laughter out there for others to read and take from it what works from them. I look back at some of it and think I should go back and rephrase or rework some of it. There are times where my internalised ableism is a punch to the gut in light of where I sit today in recognition of those feelings. But I can’t re-write the past. I wouldn’t be where I am today if I hadn’t worked through all that shit and I know there are long term readers who have been there for the long haul working through it all with me. In the end those words allow me to trace the path to the me who is here on this day.
The support readers have given me over the past 10 years has helped to get me through some of the toughest times in my life and helped me celebrate the wins big and small. Many have become friends. Geographic borders and fickle bodies overcome by the digital world. I will be forever grateful for that. The tiny corner of the digital sphere that this blog started in is now a busy metropolis, and the explosion in voices fills my heart.
Thank you to all who’ve taken time out of your lives
to read and be part of this little community.
Michelle
I still feel a need to celebrate 10 years of blogging. I had wanted to do an over the top sparkly fashion shoot involving way too much fabric, glitter, red shoes and maybe chickens (Freyja is just too old and grumpy to participate these days) but I don’t have the necessary organisational energy at present which is a rather disappointing reality. But if anyone has any fabulous low energy ideas I’m open to suggestions.
There's a line in the song below "collect your scars and wear them well" that for me sums up life with chronic illness. And after over a decade of this I hope that's what I do.
Michelle
I still feel a need to celebrate 10 years of blogging. I had wanted to do an over the top sparkly fashion shoot involving way too much fabric, glitter, red shoes and maybe chickens (Freyja is just too old and grumpy to participate these days) but I don’t have the necessary organisational energy at present which is a rather disappointing reality. But if anyone has any fabulous low energy ideas I’m open to suggestions.
There's a line in the song below "collect your scars and wear them well" that for me sums up life with chronic illness. And after over a decade of this I hope that's what I do.
