thisismetrying

Join the Conversation on
57 people
0 stories
6 posts
  • Explore Our Newsletters
  • What's New in
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post
    See full photo

    I Complete Me

    Embracing my thyroid hair loss hat look 🤓. Thankful that it’s winter, and a special shout out to my Alopecia and cancer hair loss sisters. You do not have to be brave for me, or inspire me. I just want to say I see you and acknowledge how vulnerable hair loss makes us in a society which places extreme value in all of us with chronic illnesses being “whole again.”

    For me, courage is saying I may never be whole again—and that’s okay 🖤

    #ThriverThursday #AlopeciaAreata #PostchemotherapyAlopecia #Cancer #HairLoss #HypothyroidismUnderactiveThyroidDisease #ChronicIllness #MyCondition #ChronicFatigue #ChronicBeauty #Fibromyalgia #Spoonie #thisismetrying #iamwhole #wholeself

    1 reaction 10 comments
    Post
    See full photo

    My New Idea Of A Good Time

    Did you know that Otis Redding missed the 27 Club by just one year? Janis Joplin openly admitted to being inspired by him (and countless others I’m sure!). Janis supposedly changed her singing style after they sang together at Monterrey Festival. Yes, I am a bit of a hippy slash music trivia nerd 🤓

    Anyway I love this song and cannot help but think of it when I see this picture. This was my first post hospital outing about a week ago. Who knew simply sitting on a bench, just sipping a cup of tea, could feel like such a luxury… pure bliss after 8 weeks of confinement.

    Original lyrics by Otis Redding

    Altered to be fall / autumn appropriate 🍂

    Sittin' in the mornin' sun

    I'll be sittin' when the afternoon comes

    Watching the leaves roll by

    Then I watch 'em blow away again, yeah

    I'm sittin' on the slats of the bench

    Watchin' the time roll away, ooh

    I'm just sittin' on this wooden bench

    Soakin’ up time

    Left my home with my dogs and partner

    Headed for the Cotswold border

    'Cause I've had nothin' lately to live for

    It look like nothin's gonna come my way

    So I'm just gon' sit on the slats of this bench

    Watchin' the leaves roll away, ooh

    I'm sittin' watchin autumn’s alter, wastin' time

    Look like nothin's gonna change

    Everything still remains the same

    Ten doctors couldn’t tell me what to do

    So I guess I'll remain the same, yes

    Sittin' here restin' my tired bones

    And this loneliness won't leave me alone,

    Two thousand medical miles, I’ve roamed

    Just to make this perch my home

    Now I'm just gon' sit, on this wooden bench

    Watchin' the leaves roll on by, ooh yeah

    Sittin' on the slats of the bench

    Enjoyin’ time

    #Music #musicislife #MusicIsSavingMyLife #Poetry #poetrytherapy #Nature #MentalHealth #Depression #Disability #Hypothyroidism #mycotoxins #newnormal #MyCondition #Trying #thisismetrying

    13 comments
    Post
    See full photo

    Socks Are The New Manolos

    Sex and the City’s Carrie Bradshaw may have spent much of her time running around New York City in her Choos and Manolo Blahniks, but she also wisely once said “Maybe the best any of us can do is not to quit, play the hand we’ve been given, and accessorize the outfit we got.”

    Taking these words of wisdom and applying them to my limited spoonie life: I’ve found that the best accessory to pyjamas and lounge wear, is socks.

    I have fun socks. Socks with cats and dogs on the toes with which serve as playful, friendly greetings to front door visitors. Cutesy socks, put the doorstep world at ease.

    Then there are my colour block socks that look just as good on their own or peaking out of a pair of high tops. Colour block socks need no explanation. They announce to the world with the same brazen hutzpah as Samantha Jones, “Hello. My name is fabulous.”

    I have sparkly socks too. To misquote Charlotte York—before she became a Goldenblatt—these socks say “I’m not dead. Let’s Disco!” Unfortunately these aren’t the most practical of socks, so I wheel these out only on special occasions such as Christmas and New Year’s Eve.

    Occasions that call for a little extra sock game.

    I have no idea how to wash them so I’m going to step into the confessional box and pretend you can’t see me when I say this: I simply rinse them in cold water and air dry them for a few days, before nestling them in my sock drawer next to a bar of soap in the hope that the fresh soapy anti-miasma will do it’s thing.

    As an aside: I’m happy to discover that there is an actual song called “You’re Dead. Let’s Disco!” which I am adding to my funeral playlist, because 1) I’m a control freak, 2) when you’ve been sick for over a decade, you tend to think about these things, and 3) I don’t trust my other half to get it right… some things never change, like my cynical Miranda Hobbes personality.

    But back to socks. I also own the gold standard, the Manolos of the sock world if you will; the pure cashmere sock.

    You know the kind. They adorn the feet of influencers lounging around their houses looking effortlessly chic clutching large glasses of red wine while daring to wear white jeans, while cute young offspring wander around wearing matching outfits. And there’s just enough mismatching design elements that you just know they and their interior decorators put many design hours into making it look like this too was effortlessly thrown together so that everything—chicly of course—oozes with just the right amount of enthusiasm “Look. I’m not that different from you. If you buy these things tagged in my post that have been gifted to me, you too can look as effortlessly cool and chic as I do.” Basically what former socialite Laney Berlin from the baby shower episode would be doing if she was on Instagram.

    Alas, like the mythic Mary Jane Manolos that Carrie found in the Vogue closet that were a size too small, I too discovered that washable cashmere socks are an urban sock myth. After ever so gently coaxing them into a lingerie wash bag—and putting them on a cold wash as instructed—they still emerged a size smaller, covered in a pox of pilled wool.

    The irony was not lost on me: my costly cashmere socks as with all my other expensive endeavours to improve my health—like supplements, infrared sauna blankets, treatments, and that one time I built a four cornered shrine dedicated to Manon, willing him to take my ailments and inner scars, had failed miserably. Okay, I may have made up the Manon part, but the rest is all true.

    Sadomasochistic that I am, I still have some cashmere socks lined up in my sock drawer like little ladies in waiting in anticipation of the day a spoonie royal like Lady Gaga, Sia, or Venus Williams should decide to pay me a visit, I will be suitably prepared.

    For as Carrie Bradshaw never said, but might have if she were chronically ill, “When your life is at a standstill your sock game benefits.”

    #SpoonieFashion #Spoonie #chronicallyill #Fashion #GravesDisease #Fibromyalgia #sjogrens #ChronicFatigue #ChronicFatigueSyndrome #bedbound #thisismetrying

    4 comments
    Post
    See full photo

    On Being Ill

    My first post comes to you from across my rumbled bed linen after I laid down my current read to capture a moment of fractured light that appeared above my resting space, slash cell. There is, an ugly joy or ‘jolie laide’ to borrow from the French idiom, in finding a body of work that so accurately describes what it is to be chronically ill. And better yet, the ability to dip in and out randomly is a gift to the energy impaired, as opposed to the commitment that a novel inevitably demands.

    If you haven’t yet read Virginia Woolf’s seminal essay ‘On Being Ill’ I highly recommend this collection of essays that includes Audre Lorde’s ‘Introduction From The Cancer Journals’, contributions from poet laureate Lieke Marsman, and artist and filmmaker Jameisha Prescod, to name but a few.

    To know anything about Virginia’s struggles with her health and mental health; is to know that anything she may write about Being Ill, is to anticipate that Virginia is unafraid to explore all four temperaments of personality. Each drop of ink with which she sanguinely scribes, drips with a choleric disenchantment that illness has been cast aside in literature in favour of supposed greater topics like love. Yet with phlegmatic authority and beautifully florid prose, she argues the case that many of us will inevitably in some form or other, spend a great deal of our lives acquainted with illness, and it’s altering effect on the human experience.

    Virginia then offers a melancholic answer to the question of why there are no great volumes dedicated to the state of being sick: that illness is something uniquely individual, so few writers attempt to dedicate entire novels to try describe it’s profound meaning. For Illness is that unrelenting villain whose pathos is best summarised by Virginia’s singular, and all encompassing, line “the world has changed its shape”.

    Dutch poet laureate Lieke Marsman says of her battle with cancer, “I need the illusion that I can influence my illness and recovery process, and so I tell myself that this is a fight. Is this unfair to those who did not survive the battle with cancer? No. What is unfair for those who died of cancer is the fact that there are others who have never been sick and yet feel they have the right to tell cancer patients how to talk about their own illness.” Quite.

    Not content in her victory, Lieke then sets the battleground ablaze with a phrase that confirms in one line, why the pen is mightier than any sword, and why we, the chronically ill, are indeed The Mighty. “The hardest fighting happens in the wars where there are no winners.”

    Jameisha Prescod has me at the title of her essay dedicated to her battle to get her lupus diagnosed “Believing Your Pain As Radical Self-Care.” It is a notion so obvious once stated. Believing in ourselves, our bodies, our aches, our pains, and our disabilities, IS a radical act of self-care. Jameisha writes of her diagnosis journey in a way that perfectly summarises and mirrors that of all who suffer from some form of chronic illness, that does not fit into a neat little check box on a standard diagnostic form.

    “My eventual diagnosis was anything but collaborative. There’s a reason why it feels like you’re sitting in the head-master’s office when you’re waiting for your appointment. You desperately try to remember all of your symptoms and the dates on which they appeared. You attempt to speak clearly and quickly before your five minutes are up. You try your best to communicate well, but not too well in fear that you will look too healthy, but you also want to be honest so that they don’t accuse you of malingering. You try to be the perfect student or patient—or both. But it doesn’t matter. If you’re unlucky enough to have a doctor who is unaware of how bizarre and confusing the human body and, by extension, chronic illnesses can be, then you simply won’t be believed.”

    On Being Ill

    Hetmoet Publishers

    #virginiawoolf #onbeingill #ChronicIllness #ChronicDepression #Cancer #ChronicPain #Lupus #thisismetrying #thisisustrying #bedbound

    Post
    See full photo

    On Being Ill

    If you haven’t yet read Virginia Woolf’s seminal essay ‘On Being Ill’ I highly recommend this collection of essays that includes Audre Lorde’s ‘Introduction From The Cancer Journals’, contributions from poet laureate Lieke Marsman, and artist and filmmaker Jameisha Prescod, to name but a few.

    To know anything about Virginia’s struggles with her health and mental health; is to know that anything she may write about Being Ill, is to anticipate that Virginia is unafraid to explore all four temperaments of personality. Each drop of ink with which she sanguinely scribes, drips with a choleric disenchantment that illness has been cast aside in literature in favour of supposed greater topics like love. Yet with phlegmatic authority and beautifully florid prose, she argues the case that many of us will inevitably in some form or other, spend a great deal of our lives acquainted with illness, and it’s altering effect on the human experience.

    Virginia then suggests a melancholic answer to the question of why there are no great volumes dedicated to the state of being sick: that illness is something uniquely individual, so few writers attempt to dedicate entire novels to attempt to describe it’s profound meaning. For Illness is that unrelenting villain whose pathos is best summarised by Virginia’s singular, and all encompassing, line “the world has changed its shape”.

    Dutch poet laureate Lieke Marsman says of her battle with cancer, “I need the illusion that I can influence my illness and recovery process, and so I tell myself that this is a fight. Is this unfair to those who did not survive the battle with cancer? No. What is unfair for those who died of cancer is the fact that there are others who have never been sick and yet feel they have the right to tell cancer patients how to talk about their own illness.” Quite.

    Not content in victory, she then sets the battleground ablaze with a phrase that confirms in one line, why the pen is mightier than any sword, and why we, the chronically ill, are indeed The Mighty. “The hardest fighting happens in the wars where there are no winners.”

    Jameisha Prescod has me at the title of her essay dedicated to her battle to get her lupus diagnosed “Believing Your Pain As Radical Self-Care.” It is a notion so obvious once stated. Believing in ourselves, our bodies, our aches, our pains, and our disabilities, IS a radical act of self-care. Jameisha writes of her diagnosis journey in a way that perfectly summarises and mirrors that of all who suffer from some form of chronic illness, that does not fit into a neat little check box on a standard diagnostic form.

    “My eventual diagnosis was anything but collaborative. There’s a reason why it feels like you’re sitting in the head-master’s office when you’re waiting for your appointment. You desperately try to remember all of your symptoms and the dates on which they appeared. You attempt to speak clearly and quickly before your five minutes are up. You try your best to communicate well, but not too well in fear that you will look too healthy, but you also want to be honest so that they don’t accuse you of malingering. You try to be the perfect student or patient—or both. But it doesn’t matter. If you’re unlucky enough to have a doctor who is unaware of how bizarre and confusing the human body and, by extension, chronic illnesses can be, then you simply won’t be believed.”

    On Being Ill

    Hetmoet Publishers

    #virginiawoolf  #onbeingill #ChronicIllness  #ChronicDepression #Cancer #ChronicPain #Lupus #thisismetrying

    2 comments
    Post
    See full photo

    World, I Want To Get Better

    It’s been raining most of the weekend in England. After a week spent in hospital, and 7 weeks from my first A&E trip for ‘concerning’ heart waves, my view is currently limited to my bedroom window. My “Room Without A View” as I’ve been calling it.

    Rain actually makes me feel better mentally. I feel comforted when the world outside matches the bleakness of my insides. Where “muggles” dream of beach escapes, I hold in my heart a Walden worthy longing to escape to countryside cottages with wood burning stoves, mismatched mugs and cutlery, surrounded by woodlands and heaths. Give me the tumult of the Brontë sisters as opposed to suffocating heat any day.

    All this preamble serves to bring me back to my original point; the rain. More specially I have had this song by the immensely talented Sia stuck in my head for days. The song is significant in it’s own right. But with a few tweaks, I think it is all the more meaningful to the chronically ill. I offer it up to you now in the hope that it helps to convey something of what our lived experience is like. And perhaps some of our shared fears about what life may not hold in stall for us all.

    I hope you enjoy it. I send with it gentle hugs, comforting light, and quaint little spoons ✨

    World, I want to be better

    I want my life to matter

    I am afraid I have no purpose here

    I watch the news on TV

    I am abandoned daily

    I am afraid you don’t see the real me

    And the rain it falls, rain it falls

    Drowning the seeds of love and hope, love and hope

    I don’t want to stay here, stuck in the weeds

    I feel alone in all this

    I’m not faking, I promise

    Bed bound, I can’t do anything

    I feel alone in all this

    I’m really trying, I promise

    I wish I had people standing together with me

    Maybe then I could do anything

    World, I want to be better

    I want my life to matter

    Without your help I have no purpose here

    Have you the courage to change?

    Change and see the real me

    Please don’t leave me here, stuck in the weeds

    Have the courage to change

    Change the way you see me, today.

    #ChronicIllness #Poetry #Sia #Doyouseemenow

    #Rain #bedbound #thisismetrying #Spoonies

    4 comments