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    I Have Always Been A Storm

    Mash up of Stevie Nicks and James Norbury references today, as I’m currently caught up in a medical storm of sorts. I went to the doctor yesterday for a pressure test to confirm I have chilblains, which he confirmed, but not before giving me a long mansplanation about how in his opinion I’m actually mentally ill. My husband and I both felt whiplashed by this conversation, considering I went in to get my feet examined which fell by the wayside at lightning speed to become a grilling about how I should accept that I have Illness Anxiety which is causing me to be fatigued—not my #MyalgicEncephalomyelitis

    I’ve spoken with an ME charity who gave some advice, but they also said that though my doctor is medically obliged to abide by the World Health Organization’s categorisation of MECFS as a neurological disorder, this doesn’t stop some doctors from wrongfully categorising it as a mental illness.

    It is frustrating having to spend what energy I do have on trying to self advocate for treatment, then having to spend my nights reading up about the DSM criteria for Somatic, Illness Anxiety, and Conversion Disorders. I asked the doctor how I could prove that I’m not mentally ill and his answer was “with difficulty because (people like me) have a hard time accepting that they aren’t physically ill.”

    The greatest insult in this statement is that he dismissed all my private lab tests as being pseudoscience, but when I challenged him to produce scientific evidence to confirm his Illness Anxiety diagnosis, he basically used a Fallacy Argument to prop up his hot take.

    In my ordinary life, I would consider this farce, but as doctors are gatekeepers—I am being denied access to medical care based on someone’s whim. One which seems to have made it’s way into my medical history so that wherever I go within the NHS, this black cloud will inevitably follow.

    Like us #ChronicIllness sufferers don’t have enough to deal with already, but as Stevie sang “Never have I been a blue calm sea, I have always been a storm.”

    #MyCondition #ChronicFatigue #MightyTogether #MightyMusic #MightyBookClub

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    Dear Impudence / My Chronic Illness

    I love many songs from the Beatles White Album, but discovered to my horror yesterday that I’d never actually listened to all of tracks. I heard this Lennon penned song, Dear Prudence, for the first time and it struck a chord. The chord turned into inspiration for altered lyrics, to serve as the poetic voice to describe the battle with Chronic Illness. Hands up if you agree?

    Dear Impudence
    Won’t you let me out to play?
    Dear Impudence
    Make me whole again each day
    To enjoy the sun up, the sky blue
    It would be beautiful, to be anew
    Dear Impudence
    Won't you let me out to play?
    Dear Impudence
    See me, don’t advert your eyes
    Dear Impudence
    Let me bath in sunny skies
    The wind low, the birds that sing
    I want to be part of everything
    Dear Impudence
    Why won’t you open up your eyes?

    Look around
    Dear Impudence
    Bless me with your smile
    Dear Impudence
    My unerring petulant child
    Let the clouds form a daisy chain
    So l can smile again
    Dear Impudence
    Won’t you let me smile?
    Dear Impudence
    Won’t you let me out to play?
    Dear Impudence
    I want to greet the brand new day
    See the sun up, the sky blue
    It would be beautiful, to be anew
    Dear Impudence
    Free me, so I can go out to play.

    Original Lyrics: The Beatles
    Image: Public Domain

    #MightyMusic #Music #MyCondition #MightyPoets #DistractMe #ChronicPain #ChronicIllness

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    If you had to describe yourself using one song, what song would you choose and why?

    You ever listen to a song that reminds you of yourself, gives you goosebumps, or reminds you of a time in your life? Maybe the song has a specific vibe or energy that makes you feel heard and understood?

    🎶 For me that song is "Unstoppable" by Sia. I played this song nonstop when I started prioritizing self-care and therapy 🌟.

    What about you? 👀
    What is your song? 🎧

    #MightyMinute #CheckInWithMe #MightyMusic #ChronicPain #ChronicIllness #Disability #RareDisease #MentalHealth

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    Goals Over Resolutions

    At this time of year, it’s inevitable to hear, or read, about someone making well intentioned resolutions for the new year. But good intentions are nothing without action, in which case they become regrets enshrined in shame for extra macabre measure.

    We all of us, are suckers for punishment to some degree.

    Personally, I don’t care for the idea of carrying regrets around with me. I like my baggage light, and if I could—I’d carry none at all. Still working on that last part, but isn’t that part of what it’s about? Though I’ve never been one to make New Year’s resolutions, and I’m not about to break with this nonetradition now. But, apart from my health, there are some things I know I could be doing better in terms of carving out the meaning I want from my life, and I know I’m the only one who can make that happen.

    That has been the blessing in this year of worsening health—it has deepened my understanding of how just how little most people care outside of themselves, so no more wasting precious energy on things that do not enrich my life.

    As Nina Simone sang: It's a new dawn, It’s a new day, It's a new life for me…
    And I'm feeling good.

    #MightyMoment #MightyMusic #MyCondition #goals #MightyPets #MyalgicEncephalomyelitis

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    What have been your favorite books, articles, songs, podcasts, TV shows, movies, and games of 2022?

    It’s time for our best-of-the-year lists! Today we’re reflecting on the media that brought us joy, made us feel all the feelings, or things we just straight-up loved.

    Here’s what some Mighty staffers have been digging this year:

    📚 Books: The Bullet That Missed, Lessons in Chemistry, Spells for Lost Things, The Dead Romantics

    📰 Articles: The Crane Wife (The Paris Review, this came out in 2019, but CJ Hauser’s book of essays came out this year), themighty.com/topic/chronic-illness/ordering-tests-horses-zebras (The Mighty), themighty.com/topic/migraine/chronic-migraine-pain-socialize-family (The Mighty), My boyfriend, a writer, broke up with me because I’m a writer (The Guardian)

    🎶 Songs: Sad Clown (Panic! At The Disco), Wake Me Up (Foals), Intermission Song (A Strange Loop OBC), CUFF IT (Beyoncé), Just Like You (NF)

    🎙️ Podcasts: Self Center, Red Web, Wait Wait… Don’t Tell Me!, Not Another D&D Podcast, Wonderful!

    📺 TV Shows: House of the Dragon, Andor, What We Do in the Shadows, Magpie Murders, Devil In Ohio, Wednesday

    🎬 Movies: Doctor Strange in the Multiverse of Madness, Everything Everywhere All at Once, The Menu

    🎮 Games: The Case of the Golden Idol, Nintendo Switch Sports

    What’s at the top of your list?

    #52SmallThings #MightyMusic #CheckInWithMe #Selfcare #MentalHealth #Disability #ChronicIllness #ChronicPain #RareDisease #Anxiety #Depression

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    The Long and Winding Road *TW*

    As someone with a chronic illness, and after having sat vigil for several nights by my father’s bedside keeping him company so that he would not be alone when he died, these lyrics by Waylon Jennings has always carried some significance for me:

    “If you see me getting smaller, I'm leaving, don't be grieving, just gotta get away from here. If you see me getting smaller, don't worry, I'm in no hurry, I've got the right to disappear.”

    Today was both surreal and a challenge.

    While catching up with a friend, in chatting about my illness and the lack of progress or any meaningful medical support, I casually mentioned that I have allocated in my mind a bit of a timer. In that if from some years from now if things do not improve and my quality of life decreases any further, I will consider my options and my own right to disappear.

    She did not take this well and came at me from every angle to dissuade me from even considering this path. It was a difficult conversation to have but in some way I’m grateful for it, in that my conviction on the subject is undeterred. In Waylon’s words, I feel I have the right to disappear. And as Nina Simone famously sang “if I die and my soul be lost, Nobody’s fault but mine.”

    I’m borrowing a lot of other people’s words today but in the words of Forrest Gump; “And that’s all I have to say about that.”

    No sooner had I finished this phone call, I got a call from my doctor and found out from him that when the hospital reached out to him to ask for information about my medical history, they were trying to get him to agree that I suffered from a psychosomatic disorder. Never mind that I was in fact suffering from chronic hyperthyroidism, and the very first thing I found when I googled ‘inverted T-waves’ was that it is most often associated with thyroid conditions—instead of getting an endocrinologist to review my case, the first thing they reached for is that I must be crazy.

    As much as I continue to fight for answers and advocate for myself, I do not have endless resources at my disposal. So while I continue to hope for and try my best, I do not think it is unreasonable to consider the worst case scenario given how many doctors I saw while in hospital, all of whom failed to consider or identify that my cardiac symptoms were thyroid related despite me suggesting this on numerous occasions.

    This whole day has provoked some soul searching and I find these words from The Castaway by William Cowper echoing in my mind:

    “No voice divine the storm allay'd,
    No light propitious shone;
    When, snatch'd from all effectual aid,
    We perish'd, each alone”.

    Of other people’s opinions on my health journey and to circle back to the Paul McCartney penned song from the title of this post—and a serendipitous nod to name of this group—I’ll end this post with these borrowed words that I think rather effectively summarise what it is to live with an invisible illness; “Many times I've been alone, And many times I've cried, Anyway, you'll never know, The many ways I've tried”.

    #Grief #GriefQuotes #MightyPoets #MightyMusic #Thoughts #medicalgaslighting #Gaslighting #MyCondition #MyalgicEncephalomyelitis #ChronicFatigue #InvisibleIllness

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    Poll

    77% ●
    Hands down my top 5 songs 🙌.
    23% ●
    Every song once please 🎧🎼
    121 votes
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    What song is your personal anthem?

    Most of us have songs that make us say “this is my jam,” or “I could’ve written this.” We like to call these songs our personal anthems. Here are the tracks that a few Mighty staffers say embody who they are:

    “‘I Am What I Am’ from La Cage aux Folles (what the movie “The Birdcage” is based on)! I actually wrote about it in my college admissions essay and it used to be a go-to audition song. It’s an unapologetic and vulnerable expression of confidence and finding a sense of self-worth. It’s such a “I’m here, I’m queer, take it or leave it” anthem. I saw the show as a teenager after a stint in a psych hospital, so this song is especially meaningful to me. It’s also super fun to belt in the shower.”

    “‘Lighthouse’ by The Hush Sound. It’s a beautiful song, but has such somber overtones. It’s one I turn to when trying to find hope in the darkness - whether that’s my own internal mental health or the weight of the outside world.”

    “‘Brave’ by Sara Barielles. There is a lyric in the song that reads: ‘Maybe there’s a way out of the cage that you live, maybe one of these days you’ll let the light in. Show me how big your brave is.’ I listen to it on repeat on the days when I know I just need that extra reminder to keep going.”

    What’s yours?

    #MightyMinute #DistractMe #MightyMusic #MentalHealth

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    Scampy McScampFace’s Scamp Life

    Confidence is the preference for Scampy McScampface, a habitual voyeur of what is known as—Scamp Life!

    After Scamp has been rudely awakened he gets some exercise (in the country). At around 2pm, upon their return, Scamp and Little Brofur have their treats. Then, with full bellies they have their naps. So far, so good, cause I like to nap around then too. It gives me an enermous sense of well-being, know what I mean?

    However…

    A certain Scamp decides anywhere between 2-3pm onwards that he is feeling more awake; ergo it must dinner time—which unfortunately for him; is 4pm sharp. Thus begins “The Dance of The Scampy McScampface”… only far less sugar plum fairy like, and a bit more hippo 🦛

    Scamp starts off his dance in first position; which is to vigorously wag his tail at me while making engaging huffy noises. Second position involves rubbing himself up against my legs that go hand-in-hand with snorts and borks; ad libbed at his descretion. My job is to be a Tender participant in this elaborate jouer à joue which is the Duke’s ritualist way of conveying “I am awake; therefore I eat” (incidentally he is also a big fan of the pork life 😋)

    It all culminates in a pas de burrées of sorts with him launching himself into my lap, then looking up at me with his Scampy McScampFace full hope, of which I managed to catch a non Blur-ry picture today.

    I’m also pleased to confirm that Scampy McScampFace ate his dinner so he’s far less of a Beetlebum… for the next few hours at least 😆

    #Dogs #MightyPets #DistractMe #Laugh #funny #Fun #LifelimitingIllness #ChasingLife #TheDisabledLife #WhatWeLoveMostAboutLife #scamplife #MightyMusic #Music #Blur #Sleep #SleepDisorders #Insomnia

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