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  • Reality of rest days—
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Most people with chronic illness are masters of pretending to be well. We know we are usually in situations either in public, with friends or family that require us to be “passing” as a normal healthy person. And so we smile, pretend to be full of energy and without pain. We don’t listen to our bodies in our own stubbornness or anxiety. But this is our reality—drowning in fatigue and needing to spend hours everyday resting.
We need to all be better at giving our bodies the care they deserve. Part of our journey as chronic illness warriors is to rest, acknowledge the fatigue and the pain and learn what our bodies need.
So, this is how it is sometimes. Taking a whole day to rest, try and combat the pain and just nourishing my body the best I can. Ultimately, your well-being should come first. Listen to what it needs, slow down and really do your best to give your body the tender care you deserve. Rest.💓
Happy belated ME Awareness Day💙💙💙
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#wheelchairlife #fibromyalgia #ehlersdanlosgrrrls #spoonielife #spooniestrong #spooniesisterhood #restday #ehlersdanlossyndrome #complexregionalpainsyndrome #chronicfatiguefighter #chronicfatiguesyndrome #myalgicencephalomyelitis #myunicornlife #chronicillness #chronicgirls
  • Reality of rest days—
    .
    Most people with chronic illness are masters of pretending to be well. We know we are usually in situations either in public, with friends or family that require us to be “passing” as a normal healthy person. And so we smile, pretend to be full of energy and without pain. We don’t listen to our bodies in our own stubbornness or anxiety. But this is our reality—drowning in fatigue and needing to spend hours everyday resting.
    We need to all be better at giving our bodies the care they deserve. Part of our journey as chronic illness warriors is to rest, acknowledge the fatigue and the pain and learn what our bodies need.
    So, this is how it is sometimes. Taking a whole day to rest, try and combat the pain and just nourishing my body the best I can. Ultimately, your well-being should come first. Listen to what it needs, slow down and really do your best to give your body the tender care you deserve. Rest.💓
    Happy belated ME Awareness Day💙💙💙
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    .
    .
    .
    .
    #wheelchairlife #fibromyalgia #ehlersdanlosgrrrls #spoonielife #spooniestrong #spooniesisterhood #restday #ehlersdanlossyndrome #complexregionalpainsyndrome #chronicfatiguefighter #chronicfatiguesyndrome #myalgicencephalomyelitis #myunicornlife #chronicillness #chronicgirls
  •  87  5  13 May, 2019
  • Just because I’m not diagnosed doesn’t mean I am less sick. Just because I don’t have the papers to say it’s true doesn’t mean I’m a liar. Just because I don’t get out of bed all day doesn’t make me lazy. ⁣
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I’ve had a lot of people come to me lately and ask why I’m pushing so hard when I’m not getting answers. What if I’m not sick? ⁣
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What ever happened to innocent until proven guilty? I am sick. I’m not making this up. My pain is real. I WOULDNT CHOOSE TO SPEND MY LIFE IN BED!!!
  • Just because I’m not diagnosed doesn’t mean I am less sick. Just because I don’t have the papers to say it’s true doesn’t mean I’m a liar. Just because I don’t get out of bed all day doesn’t make me lazy. ⁣

    I’ve had a lot of people come to me lately and ask why I’m pushing so hard when I’m not getting answers. What if I’m not sick? ⁣

    What ever happened to innocent until proven guilty? I am sick. I’m not making this up. My pain is real. I WOULDNT CHOOSE TO SPEND MY LIFE IN BED!!!
  •  101  12  17 April, 2019
  • My team are finally all linked in together. It’s taken a hard week of severe depression and mood swings but they’ve finally all connected. ⁣
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They all have different jobs in my care. I have Amy at headspace who helps me deal with Centrelink. She found out that there is a social worker at our local Centrelink but when I went in there they told me there wasn’t. ⁣
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I have Shelley at Pain Therapy who helps me navigate the tests I should be asking for, which doctors are the best in my town and she gives me coping strategies for pain. ⁣
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I have my naturopath who again helps me with testing and contributes more ideas to what could be happening. ⁣
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I have my amazing GP who never loses faith in me. She always notices the little things and although she’s not great with Centrelink that’s where everyone else comes in. ⁣
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I’m finally on my way to getting another Work  Capacity Assessment done. It’s been a good 8 months of fighting but I’m finally getting somewhere. ⁣
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I got to see my current Work Capacity Assessment. It says I have endometriosis which I’ve never been officially diagnosed with. It said I went into their office to do the assessment but I did mine over the phone due to their stuff up. The person who did the assessment signed it saying I was there in the office when I wasn’t. I told them I was suspected to have endometriosis. 😖🤦🏼‍♀️🤦🏼‍♀️⁣
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So happy my team is finally in the right place and all working together. What a relief. ⁣
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#thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls
  • My team are finally all linked in together. It’s taken a hard week of severe depression and mood swings but they’ve finally all connected. ⁣

    They all have different jobs in my care. I have Amy at headspace who helps me deal with Centrelink. She found out that there is a social worker at our local Centrelink but when I went in there they told me there wasn’t. ⁣

    I have Shelley at Pain Therapy who helps me navigate the tests I should be asking for, which doctors are the best in my town and she gives me coping strategies for pain. ⁣

    I have my naturopath who again helps me with testing and contributes more ideas to what could be happening. ⁣

    I have my amazing GP who never loses faith in me. She always notices the little things and although she’s not great with Centrelink that’s where everyone else comes in. ⁣

    I’m finally on my way to getting another Work Capacity Assessment done. It’s been a good 8 months of fighting but I’m finally getting somewhere. ⁣

    I got to see my current Work Capacity Assessment. It says I have endometriosis which I’ve never been officially diagnosed with. It said I went into their office to do the assessment but I did mine over the phone due to their stuff up. The person who did the assessment signed it saying I was there in the office when I wasn’t. I told them I was suspected to have endometriosis. 😖🤦🏼‍♀️🤦🏼‍♀️⁣

    So happy my team is finally in the right place and all working together. What a relief. ⁣









    #thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls
  •  139  6  13 April, 2019
  • Showing up is one of the hardest things about being chronically ill. Your illness is ruthless and it won’t stop for anything. ⁣⁣
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It can ruin everything in an instant. You could be on the way to something, at something or coming home from something when it hits and it’s like all the good vibes are gone, you have this voice in your head telling you if you don’t get home to bed you’re going to collapse. ⁣⁣
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You could have waiting 4 months for an appointment and of the of that appointment it’s bucketing down rain in 40°C heat and you just know attending that appointment is impossible now. You have to cancel. ⁣⁣
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It could be you sitting in the office of a specialist appointment and the pain hits. All you can think is 🚨 bed 🛌 bed 🛌 bed 🚨 ⁣⁣
You’re trying to talk to the doctor and all of a sudden it hits and you can’t think anymore its like someone knocked the auto pilot switch. ⁣⁣
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Showing up is hard. Getting dressed is hard. Wearing pants isn’t fun. Seat belts aren’t fun. You can’t sit down and you stand up. Every step is a shock wave of pain through your body. ⁣⁣
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It’s not that simple for us to ‘just come’ to an event. We can’t decide when the pain will end. We can’t just turn it off for a hot minute because you’ve decided last minute you actually do want to go do something fun. Like yeah if you want a limp body to hang out with HMU but if I have to wear a bra or pants I’m out. 👋🏼 ⁣⁣
⁣PS: This doesn’t mean we don’t want to be invited. Getting invites to stuff is like the highlight of our lives. ⁣
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⁣⁣ #thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness #spooniestruggles #showingupishard #spooniethoughts #spoonieouttings #spoonievibes
  • Showing up is one of the hardest things about being chronically ill. Your illness is ruthless and it won’t stop for anything. ⁣⁣
    ⁣⁣
    It can ruin everything in an instant. You could be on the way to something, at something or coming home from something when it hits and it’s like all the good vibes are gone, you have this voice in your head telling you if you don’t get home to bed you’re going to collapse. ⁣⁣
    ⁣⁣
    You could have waiting 4 months for an appointment and of the of that appointment it’s bucketing down rain in 40°C heat and you just know attending that appointment is impossible now. You have to cancel. ⁣⁣
    ⁣⁣
    It could be you sitting in the office of a specialist appointment and the pain hits. All you can think is 🚨 bed 🛌 bed 🛌 bed 🚨 ⁣⁣
    You’re trying to talk to the doctor and all of a sudden it hits and you can’t think anymore its like someone knocked the auto pilot switch. ⁣⁣
    ⁣⁣
    Showing up is hard. Getting dressed is hard. Wearing pants isn’t fun. Seat belts aren’t fun. You can’t sit down and you stand up. Every step is a shock wave of pain through your body. ⁣⁣
    ⁣⁣
    It’s not that simple for us to ‘just come’ to an event. We can’t decide when the pain will end. We can’t just turn it off for a hot minute because you’ve decided last minute you actually do want to go do something fun. Like yeah if you want a limp body to hang out with HMU but if I have to wear a bra or pants I’m out. 👋🏼 ⁣⁣
    ⁣PS: This doesn’t mean we don’t want to be invited. Getting invites to stuff is like the highlight of our lives. ⁣
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    ⁣⁣ #thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness #spooniestruggles #showingupishard #spooniethoughts #spoonieouttings #spoonievibes
  •  192  17  6 April, 2019
  • If only they could see my pain. ⁣
If only they didn’t make assumptions about me. ⁣
If only they had an open mind. ⁣
If only they didn’t make me feel bad for not attending. ⁣
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There’s so many what ifs and if onlys about being chronically ill. Your mind is always wondering what could be and if things were different. ⁣
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I feel like even this picture doesn’t sum up my pain. ⁣
You can’t see my rock hard bloat. ⁣
You can’t see the cramping, the pulling, the pushing of my insides. ⁣
You don’t see my vomit bucket or my bin full of soppy tissues. ⁣
You can’t see me constantly moving around trying to get comfortable. ⁣
You don’t see me getting up at 4 am cause I feel like I’m busting for a poo only to go and your bowels don’t move. ⁣
You don’t see me having to apply moisturiser to my stomach because it’s so stretched it’s itchy. ⁣
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I wish I could show all of these pains, maybe one day, I’ll work out how to. I no longer put on a brave face around my friends. If I’m in pain they’ll see it on my face. If I can’t express it on my face I’ll describe it to them. ⁣
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If they don’t know they don’t understand. We can’t expect our circle to understand if we just say we’re in ‘pain’. What kind of pain? What does it feel like? How does it make you feel? Where does it effect you? ⁣
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Being honest and open to my friends about my pains was hard, but once I did it, they understood more. The ones who didn’t? Well we don’t speak anymore. I don’t have time for people who want to make assumptions, be closed minded or made me feel guilty for missing their birthday. ✌🏼✌🏼⁣
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#thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness
#chronicillnessfriendship #painface #dailypain #friendssupport #pcosister #spooniesunited
  • If only they could see my pain. ⁣
    If only they didn’t make assumptions about me. ⁣
    If only they had an open mind. ⁣
    If only they didn’t make me feel bad for not attending. ⁣

    There’s so many what ifs and if onlys about being chronically ill. Your mind is always wondering what could be and if things were different. ⁣

    I feel like even this picture doesn’t sum up my pain. ⁣
    You can’t see my rock hard bloat. ⁣
    You can’t see the cramping, the pulling, the pushing of my insides. ⁣
    You don’t see my vomit bucket or my bin full of soppy tissues. ⁣
    You can’t see me constantly moving around trying to get comfortable. ⁣
    You don’t see me getting up at 4 am cause I feel like I’m busting for a poo only to go and your bowels don’t move. ⁣
    You don’t see me having to apply moisturiser to my stomach because it’s so stretched it’s itchy. ⁣

    I wish I could show all of these pains, maybe one day, I’ll work out how to. I no longer put on a brave face around my friends. If I’m in pain they’ll see it on my face. If I can’t express it on my face I’ll describe it to them. ⁣

    If they don’t know they don’t understand. We can’t expect our circle to understand if we just say we’re in ‘pain’. What kind of pain? What does it feel like? How does it make you feel? Where does it effect you? ⁣

    Being honest and open to my friends about my pains was hard, but once I did it, they understood more. The ones who didn’t? Well we don’t speak anymore. I don’t have time for people who want to make assumptions, be closed minded or made me feel guilty for missing their birthday. ✌🏼✌🏼⁣








    #thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #youdontlooksick #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness
    #chronicillnessfriendship #painface #dailypain #friendssupport #pcosister #spooniesunited
  •  244  15  6 April, 2019
  • How I feel when I’m menstruating/ovulating/waiting for my period that decides to be last every month. ⁣
It’s amost impossible to describe. It’s like there’s a poison in your body you just can’t control. Everything is sore and being touched anywhere brings on more pain. ⁣
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I feel like my uterus is on fire. I don’t know how a uterus can actually be so small when my entire life I thought it was much bigger! (Post about that coming soon) ⁣
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It feels like a stampede of elephants.. that are on fire. It feels like a porcupine... on fire. It’s like some one has taken pieces of the sun and put them in my body and they’re just floating around burning everything. ⁣
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I have acid reflux like a mf. I feel like I need to drink so much milk to soothe my body but of course milk also makes my stomach turn right now. I wish I could fight fire with fire. ⁣
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My chest feels like there’s barbed wire tightening around it. It’s sharp, pointy and makes me not want to breathe properly. It’s so hard to explain this extreme pain and all the effects in has on me. ⁣
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Side note: IF MY ILLNESSES ACTUALLY DID THIS TO MY BODY MAYBE SOMEONE WOULD WANT TO KNOW WHY 🤷🏼‍♀️👩🏻‍⚕️🕵🏼‍♀️⁣
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#thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #painpicture #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness #painillustrated
  • How I feel when I’m menstruating/ovulating/waiting for my period that decides to be last every month. ⁣
    It’s amost impossible to describe. It’s like there’s a poison in your body you just can’t control. Everything is sore and being touched anywhere brings on more pain. ⁣

    I feel like my uterus is on fire. I don’t know how a uterus can actually be so small when my entire life I thought it was much bigger! (Post about that coming soon) ⁣

    It feels like a stampede of elephants.. that are on fire. It feels like a porcupine... on fire. It’s like some one has taken pieces of the sun and put them in my body and they’re just floating around burning everything. ⁣

    I have acid reflux like a mf. I feel like I need to drink so much milk to soothe my body but of course milk also makes my stomach turn right now. I wish I could fight fire with fire. ⁣

    My chest feels like there’s barbed wire tightening around it. It’s sharp, pointy and makes me not want to breathe properly. It’s so hard to explain this extreme pain and all the effects in has on me. ⁣

    Side note: IF MY ILLNESSES ACTUALLY DID THIS TO MY BODY MAYBE SOMEONE WOULD WANT TO KNOW WHY 🤷🏼‍♀️👩🏻‍⚕️🕵🏼‍♀️⁣










    #thespooniesisterhood #chronicloveclub #chronicpainwarrior #pcosawareness #pelvicpain #painwarrior #sickgirlsclub #cystersunited #pcosaustralia #wherethetiredgirlsare #chronicfatiguesyndrome #painpicture #cfsawareness #vertigo #fightlikeagirl #spooniehealth #chronicgirls #girlswithchronicillness #painillustrated
  •  251  19  5 April, 2019

Top #chronicgirls Posts

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  • So, this happened. (No this isn't the w/c I recently went thru eval & paperwork for, it's a w/c that a sweet friend lent me awhile ago when I was having some trouble.) BUT, my w/c IS happening, and I wanted to go to @younkersstores & @target w/ my #SIL @april100680, and she and the #MSHusband were STRICT- they required it to be used so I wouldn't be too worn out for today 🇺🇸. And guess what? I LOVED IT. Holy cats it made my entire shopping experience 150% better. And more enjoyable. Usually when I have to shop I'm in horrid pain, have to stop frequently to rest my legs (and arm from leaning on my cane), and when I get home I sleep for 5+ hours to recover. This was a #GameChanger, and I wasn't embarresssed once. It made me ENJOY shopping with friends again, which is an unexplainable feeling. It feels like I'm getting my life back. {PS I am wearing shorts, but they are pretty small hence it looks like I'm pantless in public 😬.) #ChronicallyMeg #ChronicGirls #MSandMeg #MobilityImpairment #MSProblems #Erythromelalgia #Spasticity #WheelchairGirls #MSSymptoms #ChronicIlnness #ThisIsMS #IAmMS #MSInstaDiary
  • So, this happened. (No this isn't the w/c I recently went thru eval & paperwork for, it's a w/c that a sweet friend lent me awhile ago when I was having some trouble.) BUT, my w/c IS happening, and I wanted to go to @younkersstores & @target w/ my #SIL @april100680, and she and the #MSHusband were STRICT- they required it to be used so I wouldn't be too worn out for today 🇺🇸. And guess what? I LOVED IT. Holy cats it made my entire shopping experience 150% better. And more enjoyable. Usually when I have to shop I'm in horrid pain, have to stop frequently to rest my legs (and arm from leaning on my cane), and when I get home I sleep for 5+ hours to recover. This was a #GameChanger, and I wasn't embarresssed once. It made me ENJOY shopping with friends again, which is an unexplainable feeling. It feels like I'm getting my life back. {PS I am wearing shorts, but they are pretty small hence it looks like I'm pantless in public 😬.) #ChronicallyMeg #ChronicGirls #MSandMeg #MobilityImpairment #MSProblems #Erythromelalgia #Spasticity #WheelchairGirls #MSSymptoms #ChronicIlnness #ThisIsMS #IAmMS #MSInstaDiary
  •  243  20  4 July, 2017

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  • I saw this online and thought "OMG THIS IS MY LIFE!!!" I don't know about y'all but waking up from sleep is one of THE WORST PAINS I ever feel. How do I describe it? Let's see... in short I feel like I was run over by a 6 ton truck in my sleep. 🚛 My entire body is completely stiff (almost like a frozen bag of ice). My ankles are throbbing x10. Every bone in my body feels bruised from the inside out- such a DEEP hurt. 💀 My lower back is radiating pain (did I sleep wrong?) and my forearms are stiff as a board. My fingers don't even want to bend bc the joints are rigid. When my feet hit the floor and I stand, pain radiates through my body, shooting from the feet up. 🔪🔨Every joint feels swollen, every bone is exuding a deep deep ache. 🔴💥🔴 Sometimes I feel lightning bolts or stabbing sensations down my legs when I move. ⚡️Almost every morning SOMETHING is numb- sometimes it's the same place (my hips) other days it's a new place. I wake up like this Every. Single. Morning. ⚰️ When I wake up in the mornings, my floor is littered in pain management devices from my "sleep" - heating pads, ice packs, water bottles, compression sleeves, Be Kool fever strips... it's like a crime scene of futile pain relief attempts! I was told by the #MSSpecialist that none of this type of pain I am describing stems from #MS - however I have heard opinions all across the board on this from #Neurologists over the last decade with #MultipleSclerosis. (Many claim MS pain is strictly #Numbness and #Tingling - well let me tell ya that doesn't qualify as pain in my book. Uncomfortable? Yes. I think the docs need to swap places with me for an hour and they would change their mind.) I also have #EDS and #CRPS - both of those specialists have rejected that pain description as well. Long story short--- I HAVE NO IDEA what to blame it on! 🤷🏼‍♀️ #ChronicallyMeg #MSandMeg #SleepingWithMS #MSandSleep #MSPain #MSandPain #EDS #EDSPain #ChronicGirls #ChronicPain #MSSymptoms #PainRelief #LivingInPain #ThisIsMS #ThisIsChronicIllness #IAmMS #MSAwareness #MSAwarenessMonth
  • I saw this online and thought "OMG THIS IS MY LIFE!!!" I don't know about y'all but waking up from sleep is one of THE WORST PAINS I ever feel. How do I describe it? Let's see... in short I feel like I was run over by a 6 ton truck in my sleep. 🚛 My entire body is completely stiff (almost like a frozen bag of ice). My ankles are throbbing x10. Every bone in my body feels bruised from the inside out- such a DEEP hurt. 💀 My lower back is radiating pain (did I sleep wrong?) and my forearms are stiff as a board. My fingers don't even want to bend bc the joints are rigid. When my feet hit the floor and I stand, pain radiates through my body, shooting from the feet up. 🔪🔨Every joint feels swollen, every bone is exuding a deep deep ache. 🔴💥🔴 Sometimes I feel lightning bolts or stabbing sensations down my legs when I move. ⚡️Almost every morning SOMETHING is numb- sometimes it's the same place (my hips) other days it's a new place. I wake up like this Every. Single. Morning. ⚰️ When I wake up in the mornings, my floor is littered in pain management devices from my "sleep" - heating pads, ice packs, water bottles, compression sleeves, Be Kool fever strips... it's like a crime scene of futile pain relief attempts! I was told by the #MSSpecialist that none of this type of pain I am describing stems from #MS - however I have heard opinions all across the board on this from #Neurologists over the last decade with #MultipleSclerosis. (Many claim MS pain is strictly #Numbness and #Tingling - well let me tell ya that doesn't qualify as pain in my book. Uncomfortable? Yes. I think the docs need to swap places with me for an hour and they would change their mind.) I also have #EDS and #CRPS - both of those specialists have rejected that pain description as well. Long story short--- I HAVE NO IDEA what to blame it on! 🤷🏼‍♀️ #ChronicallyMeg #MSandMeg #SleepingWithMS #MSandSleep #MSPain #MSandPain #EDS #EDSPain #ChronicGirls #ChronicPain #MSSymptoms #PainRelief #LivingInPain #ThisIsMS #ThisIsChronicIllness #IAmMS #MSAwareness #MSAwarenessMonth
  •  218  40  21 March, 2017