Instagram Public Photos with #spoonielife

We can be so tough on ourselves when we can’t accomplish tasks that we used to be able to. every time i wasn’t able to accomplish something i became overwhelmed with sadness and frustration until i started to celebrate what i could accomplish rather then dwell on what i couldn’t. changing my mindset wasn’t easy, but it did help rid myself of thinking too much about my past rather then focusing on the present.

follow us @how.u.feeling for more post about living with a chronic or mental illness. our dms are always open. come introduce yourself to us and if you ever need to chat or vent we are always avail. you are not alone in your fight ❤️

comment 149 star 4,602 3 days ago

You can take your meds, eat healthy, exercise everyday, get good sleep and listen to every single piece of advice your doctor gives you and still be sick. there is no perfect formula for healing and that’s the most frustrating aspect of it.

follow us @how.u.feeling for more post about living with a chronic or mental illness. our dms are always open. come introduce yourself to us and if you ever need to chat or vent we are always avail. you are not alone in your fight ❤️

comment 115 star 4,747 4 days ago

No one should ever have their illness or symptoms questioned. it’s not in your head, you’re not crazy, your pain is very much real.

follow us @how.u.feeling for more posts about living with a chronic or mental illness. our dms are always open. come introduce yourself to us and if you ever need to chat or vent we are always avail. you are not alone in your fight ❤️

comment 147 star 4,621 5 days ago

I'm very guilty of this myself 🤫 but i think as a spoonie community we need to apologise to each other a lot less, especially for being quiet. if someone unfollows me because i don't post for a few days, i'm more than happy for that person to do so 👋.
we're mostly all here for the same reason - to reach out and offer/receive support from others in similar positions as us, so it seems a bit backwards to apologise for being quiet when we all know how hard it can be to keep up with the simplest tasks.
gentle reminders:
🌟 it's ok to delay replying to non-urgent messages 💌
🌟 it's ok to stay away from social media or phone use whenever you need or want to 🔋
🌟 it's ok to share as little or as much as you like, whenever you like ⌚
🌟 it's ok to be quiet 😌
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id: written text on a black background in a gold circle saying "you don't have to apologise for being quiet on social media."
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#thespooniesisterhood #wherethetiredgirlsare #mightytogether #therealme #myalgice #spooniesupport #spoonielife #spooniecommunity #spooniewarrior #fibromyalgia #fibrowarrior #spoonie #canyouseemenow #butyoudontlooksick #lymedontkillmyvibe #chronicillness #chroniclife #chronicpain #chronicpainlife #chronicpainwarrior #invisibledisability #invisibleillnessawareness #invisibledisabilityawareness #invisiblebattles #mentalhealthsupport #mentalillnessawareness #disabodyposi #chronsdisease #ibd #cprs

comment 23 star 486 4 days ago

Mornings can be tough — especially if you wake up in pain 😣
i am so sorry if you are already suffering and dreading/questioning how you’ll endure the day...
when living on the rollercoaster of chronic illness🎢 it’s an unknown whether or not your suffering will dip or rise 🤷‍♀️
although pain levels are uncertain, you *can* work to control your mindset and reaction to what’s happening to you 🤗
think of yourself as your own artist, shaping your responses to inputs you *don’t* have any control over to define reality in a more constructive way 👩‍🎨 by intentionally reacting to what’s happening to you, you can turn around a “bad” day and make it more bearable 🐻
my fav practices include offering myself compassion 🥰, listening to a fun audiobook 🎧 and enjoying some nourishing food or tea ☕️ ps don’t forget that this pain is not your fault!!! #selfcaretips #selfcompassion #selfkindness #painmanagement #copingskills #mindsetmatters #mindfulliving #selfhealing #seethegood #mondaymotivation
via @twentysevenlkld

comment 70 star 2,540 2 days ago

•managing a crash•

recently i’ve *really* been struggling; winter is not kind to my m.e.
last week i spent 4 days in a row out of bed, immediately after a 5 day migraine: 2 hospital appts, a trip to/from london, 1 graduation, being sat upright for hours on end…it left me feeling awful. i couldn’t be upright any more, i’ve been in bed ever since!
when my health deteriorates i cope by knowing i’m doing all i can to make myself more comfortable whilst riding out a crash.

@compressionsockshop recently sent me some compression socks to try so i’ve been wearing them whilst on bedrest & feeling their benefits!

i’m a fan of compression socks; they help ease brain fog, reduce bp drops & lower tachycardia from blood pooling in my legs.
wearing them this week enabled me to sit up a bit more in bed & i’ve also noticed my severe headache eased some, which seems magic to me, wear socks & reduce your headache? ok!

obviously, compression socks are just one of many things that can help reduce symptoms but they’re a relatively cheap & easy option to try. i find that when used alongside other non-pharmacological symptom management methods, i feel a bit better, which is all we ever want isn’t it?! chronic illness has ‘medicalised’ much of my life. for years i put off wearing compression socks because i only ever found medical looking ones in ‘skin’ colour & black, & i wanted fun ones to reflect my personality!

@compressionsockshop are a uk based company stocking high quality, soft & comfortable, patterned compression socks made by @supcare .
i’m so in love with the fun designs & instead of looking medical, they look like a nice pair of everyday socks that just so happen to help me feel better!

a lot of you ask me where you can get nice compression socks in the uk, so here you go!
you can buy the pair of @supcare compression socks that i’m wearing & many more amazing styles from @compressionsockshop .
follow the link in my bio to visit their site & check them out!
i also have a discount code for you: enter “misssaltbae” at the checkout for 10% off your purchase. we love a bargain!
happy shopping folks! 💕

comment 42 star 339 Yesterday

•i’m not lazy, i’m energy efficient•

having m.e and suffering from multiple other conditions has always left me utterly exhausted, experiencing chronic fatigue and running on very limited energy supplies.

back in the early days of being ill, before my parents understood things better, they called me idle for resting on the sofa and one day i retorted, “i’m not lazy, i’m energy efficient!” and from that day on, it became a family joke.
my parents now understand things much more but we still marvel at just how energy efficient i can be because it has been a necessary skill i’ve had to learn in order to ration my limited supplies.

i know that it can be so frustrating when people sometimes don’t understand what it’s like to have m.e or another condition which causes chronic fatigue and don’t realise just how little energy you have to participate in activities.

what people in the outside world might perceive as laziness is actually us utilising our energy in the most efficient way possible!

this sweater helps to make light of the situation but also let them know; you are not lazy, you’re energy efficient!

you can find it and many other spoonie appropriate designs on my online store, the link to which can be found in my bio or over at @miss.salt.baes.shop.

all tees and sweaters are made of organic cotton which is beautifully soft on sensitive spoonie skin and perfect to snuggle up in on those difficult days.
they’re also created in a sustainable and ethical manner because why do it any other way when you have the option to do it the right way, am i right?!✨

comment 20 star 466 2 weeks ago

What is the difference between tired & fatigued?! this is one of the biggest misconceptions i’ve experienced with my health issues - that we are ‘tired’ but this couldn’t be further from the truth so i wanted to explain the difference 🙏🏼💗⁣

i think everyone experiences the feeling of tiredness on regular occasions, the feeling of heavy eyes, needing to sleep so they can feel better it’s what people experience last thing at night before they drop off to sleep then they wake up feeling refreshed & able to get on with their day doing ‘normal’ things like getting dressed, going to work, socialising, exercising, having kids etc ⁣

those who are living with fatigue are actually experiencing mitochondrial dysfunction - mitochondria are the parts of our cells which produce energy & they stop working properly usually due to infections / toxicity / nutritional deficiencies or a combo of all 3. our body is physically not producing enough energy to function properly so we are left debilitated & unable to carry out ‘normal’ day to day activities like healthy people can. no amount of sleep will make the fatigue go away 👎🏼😢⁣

when someone lives with fatigue it severely impacts their quality of life whereas someone who is tired can live normally but feels tired. does this make sense? this is a super simple explanation! if you want to learn more about fatigue / cfs / me i recommend reading dr myhills books - she is one of the top me / cfs & mitochondrial function specialists in the uk. her books are the first thing i read when my health deteriorated & i saw her speak recently at a conference she was amazing! her recommendations have helped me a lot 🙏🏼 has anyone else read her books or follow her protocols? 💗 ps. this is the main reason i need to use a wheelchair at times to get about so no i’m not tired bc tired people don’t need a wheelchair to get about 😅😂🙈

comment 96 star 448 3 days ago

💛 chronically fabulous digital portrait project 💛so as a disabled artist i love creating art for my fellow chronic illness warriors and supporting their journey. through this amazing community instagram i have met so many amazing and brave warriors 💪🏽 💛 i know how tough finances can be as someone who is disabled (my sole income is my art) so so i decided to do portraits dedicated to you and your story for just $25. (usd) let’s support each other 🖼❤️ dm to book 💕 ➡️ check out my last posts to see fellow chronic illness warriors who’ve shared their story already ✨
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#chronicillness #chronicpain #spoonie #invisibleillness #fibromyalgia #autoimmunedisease #spoonielife #anxiety #mentalhealth #chronicfatigue #butyoudontlooksick #chronicillnesswarrior #endometriosis #chronicpainwarrior #chronicallyill #depression #health #pain #eds #ehlersdanlossyndrome #chronicillnessawareness #multiplesclerosis #autoimmune #lupus #pots #gastroparesis #disability #art

comment 1 star 4 8 minutes ago

Friday is the day. i was excited and now i'm scared. ultimately i may need a hysterectomy but with my blood clotting issues my doctor's try to avoid highly invasive procedures if possible. so this is the next step to control the anemia and balance issues around this. this definitely complicates my flares. fingers crossed. i've heard great things from friends but found not so great things on the internet.

#thisisraineysjourney #fibrowarrior #fibromyalgia #fibromyalgiaawareness #chronicillness #spoonie #spoonielife #chronesdisease #thrombophilia #pulmonaryembolismsurvivor #factor7mutation #psd #ptsdrecovery #pmdd #highfunctioningdepression #endometriosis #womenwholift #kneerehabilitation #metoo #iamasurvivor #traumasurvivor #iamforher #writer #bossbabe #lovetoread #novasureablation #endometrialablation

comment 0 star 3 11 minutes ago

People often say that motivation doesn't last. well, neither does bathing - that's why we recommend it daily.⠀
#thursdaythoughts #chronicpainindia #invisibleillness
#chronicpainwarrior #india #spoonielife #spoonies
#chronicpain #chronicillness #painwarriors #painmatters⠀
#cpisupportgroup #cpiblogs #quotestoliveby #inspirationalquotes
#togetherstronger

comment 0 star 2 11 minutes ago

All new custom #spooniewarrior locket plates are on their way! 15 new designs arriving friday with custom orders available. here are a few of my favorites. contact me to create your #spoonie locket. all lockets include #spooncharms #spoonie #spoonielife #spooniewarrior #chronicpain #chronicillness #spoonielocket #spoonstash #spoonieflare #supportsmallbusiness #spoonieentrepreneur #charmlocket

comment 0 star 0 13 minutes ago

*tuesday's surgery update*

i always get jittery and super nervous before surgical procedures. to try and ease my nerves, my man always tries his best to make me c***k up before they wheel me back. this time he did it with funny animal videos.

on to some good news. my hysterscopy and polyp removal went well! my surgeon said that he only had to remove 3 polyps, 3!! waay better than the last few times. he said that since there were so few he thinks the specific birth control i am on to control the hormonal polyp growth is actually working.

he had to put in dissolving sutures this time because he did have to cut the polyps out deeply. as always, he sent them to be tested. there is some pretty bad pain, like really, really bad menstrual cramping and bleeding. but it should pass soon enough. i have been home resting and will continue to do so for the rest of the week.
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#hyperpots #chronicillness #chronicpain #chronicpainwarrior #chronicfatiguesyndrome #chronicfatigue #spoonie #spoonielife #spooniesupport #thespooniesisterhood #butyoudontlooksick #wherethetiredgirlsare #tiredgirl #fibro #fibromyalgia #mecfs #pcos #hysteroscopy #dysautonomia #autonomicdysfunction #migraine #gastroparesis #rawarrior #rheumatoidarthritis #mcas #invisibleillness #disability #disabilityawareness

comment 0 star 5 27 minutes ago

Are you sick and tired of being sick and tired?
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it’s exhausting to always be in pain and always be dead tired

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it’s even tougher when nobody around you “gets it”
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get in a tribe that is visionary, knows what you go through, and keep focus on thriving
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check out pain free warriors on facebook
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we go live weekdays 12:30 pm est with cool tips to living your life even though you have chronic pain 💜

comment 1 star 3 34 minutes ago
comment 2 star 4 35 minutes ago

I had 𝐝𝐞𝐛𝐢𝐥𝐢𝐭𝐚𝐭𝐢𝐧𝐠 chronic fatigue syndrome. doctors just wanted to treat the symptoms. i treated the underlying cause and proved that cfs is not lifelong. never give up! ⁣
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#fatigue #chronicfatiguesyndrome #rainy #chronicillness #invisibleillness #spoonie #chronicfatigue #spoonielife #cfs #mecfs #autoimmune #chronicallyill #butyoudontlooksick #autoimmunedisease #getup #ifketo #inflammationrelief #myalgicencephalomyelitis #meawareness #cfsme⁣

comment 0 star 2 37 minutes ago

So the verdict is in...@ediebug8 has the flu🤒...i have a kidney infection😖...we both get tamiflu (her for the flu and me cuz i've been around her and i get antibiotics too😷)
#momlife #momsofinsta #momsofig #momsofinstagram #flu #tamiflu #kidneyinfection #antibiotics #spooniemama #spooniewitch #spoonielife #ugh

comment 0 star 4 37 minutes ago

We may not move as quickly as you worms but hey, we carry a lot on our shoulders so what would you expect? we are #booksnails and we’re proud to leave a trail so others can follow in our footsteps!

from the inspired mind of @auramariamateus 📔🐌 id: an open cartoon yellow book + a cartoon snail with a yellow shell = “the book snails” with the sfsp logo next to it
#storiesforsickpeople #bookclub #disability #disabilityawareness #disabled #chronicillness #spoonie #disabilities #accessibility #chronicpain #disabilityrights #spoonielife #disabilityadvocate #disabledpeoplearehot #thebarriersweface #ableismexists #disabodyposi #babewithamobilityaid

comment 4 star 18 38 minutes ago

Tonight, i am feeling exactly like this. yes, i can grab control of all the things i’m dealing with... but ultimately, when i’m detoxing and balancing hormones, i’m a mess.

now that i’m on an even more severely limited diet... albeit a very healthy diet, i get moody.

i can’t cave to the cravings, i can’t cave to my emotions, i can’t give in or let go.

okay sure, i can... but that doesn’t help me, my gut health or my body.

so, tonight i just wanted to affirm with you all that autoimmune disease is a thief... and that i am going to do every single thing in my power to overcome.

and i hope you will too.

xoxo, aimee @aimeeanchored | founder at @autoimmunesisters

comment 11 star 287 53 minutes ago

🦋 i’ve been getting some super cûte compliments on my hair the past 2 months but my favourite of all was on tuesday - when i got told by a random lady, that my hair reminded her of flowers super cûte. 🌸💙💜 #ifyoucanbeanythingbeaunicorn .
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#cuteootd #pastelaesthetic #pastelgirl #disabledpeoplearehot #skinnygirls #autismlife #ootd #pastels #pastelpurple #pastelbluehair #mirrorselfie #cutelife #kawaii #hairaesthetic #spoonielife #mecfs #chronicillnesswarrior #hypermobilitysyndrome #collusion #coordination #pastelhair #purpleconverse #beyourself #createyourownstyle #tattoogirl

comment 0 star 11 55 minutes ago

My first #babyyoda meme. so relatable.

comment 1 star 7 1 hour ago

💁💁💁
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i'm in the colposcopy clinic tomorrow for a smear! 🙄
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petrified at the thoughts of anything going near my pelvis! 😕
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plus, last year when i was at the same clinic i was having a really bad flare & passed out with pain in the waiting area! so f****n embarrassing! 🤦🏻‍♀️
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not an ideal memory! you best believe i'll be consuming the biggest #wakenbake in history before attending this appointment! 🙈
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i finished the pill pack yesterday so i'm due but i take it constantly so i went straight into the next one but by f**k i can feel the symptoms & hormone fluctuations, even without the mess! 😣
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wish my bits the best of luck folks, it's taking so much outta me just driving up to dublin the pain & pressure is overwhelming in my back/pelvis/hips/ass! and let me tell yas, i've a whole lot of a*s for it to be hurting!!! 🙄🍑
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this time tomorrow i'll be home in my own bed smoking a f*t one and it'l be all over! 🙌
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#endowithaimee #cervicalcheck #smear #womenshealth #invisibleillness #endoflares #chronicpainmanagement #medicinalcannabis #medicinalmarijuana #thc #myendoblog #myendojourney #mentalhealth #anxietytriggers #anxiety #breathegirl #fightlikeagirl #spoonielife #endowarriors #endosmoker #endosistersunited #endocommunity #endocannabinoidsystem #depression #onedayatatime #gratefulalwaystho

comment 0 star 8 1 hour ago

So, who is on strong pain killers??? ☝🏼 #chronicpain #chronicillness #pain #meds #spoonie #spoonielife #endo

comment 1 star 27 1 hour ago

I woke up saturday hitting the 24 hour mark of the most severe pain of my life. my lower back and stomach were stabbing in the most soul shattering gut wrenching way beyond anything i could ever imagine. the pain came on suddenly and inexplicably. i couldn’t stand, walk, or roll over without assistance. to say it was scary is an understatement.

given my complicated health history and heavy treatment protocol, i ended up in the er to rule out anything serious and get the pain under control.

i’m sure many #spoonies and #lymies out there can relate to my apprehension to go to the er. thoughts like: is this just going to be a waste of my time? will they even help me? how will they react to my medical history/ medication profile? will they tell me my lyme should be “cured”- even though i’m going for unrelated reasons? will they treat me like a drug seeker bc im in pain? will they just tell me to take advil and then bill me 2000k?

a lot of us have our er horror stories, but thankfully this turned out to be the opposite of that. i was treated quickly with kindness and compassion. my nurse told me her friends son is treating chronic lyme and empathized. she even said i was a warrior for keeping a #piccline in for 10 months. they ordered a ct scan to check on my kidney and immediately gave me something that brought my pain from - off the charts 10 down to a tolerable 5. i imagine my 160/110 blood pressure reinforced the fact that i was in extreme pain (it’s usually low-normal). my ct was normal so the hospital thought it was just muscular and i was released, walking out in much less pain than when i walked in.

however yesterday my llmd reached out bc my blood work was abnormal and my wbc was very high. my u***e also had trace amounts of blood and one of my medications is known to case kidney stones. we’re wondering if i may have passed a stone in the hospital before going in for the scan. either way i’m just relieved to be feeling better and am happy to have had a positive experience seeking emergency care. kindness makes all the difference.
#lymewarrior #chronicillness #kidneystones #er #butyoudontlooksick #spoonielife #spooniewarrior #fibromyalgia #chroniclyme

comment 5 star 10 1 hour ago

✨this is something i struggle with sometimes which is one of the reasons i decided to start this account. i am in moderate to severe pain every second of every day. if my body had its way, i’d be permanently attached to a heating pad, in bed all day, in a completely dark and cool room. there are plenty of days or half days i still have to do that. i don’t say any of this for pity, i say it so people might understand that when i push myself to do simple things like go to the gym, it doesn’t mean i’m better or i’m feeling fine, it’s me refusing to let pain run my life. i’m refusing to let it dictate who i can still be as a person, which has always been, and will continue to be, a fighter. ✨⚔️🥊 #fighter #limited #neverquit #nevergiveup #tos #toswarrior #thoracicoutletsyndrome #thoracicoutletsyndromeawareness #tbi #norse #norsefitness #nordicroots #nordic #valkyrie #gym #gymmotivation #gymlife #spoonielife #myleftarmisanasshole #tattood #tattoodchicks #tattoodgirls #fuckpain

comment 0 star 2 1 hour ago

Yesterday’s #3happythings (1) had tea with some very good friends at my house in the morning with extremely up lifting conversations. 😊❤️ (2) walked around #themall with my beautiful daughters. 💞(3) found the perfect spring purse 👜 think i will get it next month 🧐

comment 1 star 10 1 hour ago

Being sick is hard.
i wish i could say getting a new puppy magically keeps me happier and more distracted from my illness but that would be a lie.
just like atlas, koko gives me moments to smile every day. a small life to take care of and ensure that this creature knows they are loved and cared for and protected. creating a bond that ensures that as she grows, koko will want to help protect me and let me know when i am in danger.
but none of it changes the reason i need these service dogs. neither of them can protect me from the physical pain of my conditions. nor can they ease the symptoms of the cold i got just days after getting rid of the last one.
i just wanted to cry and complain all day. that my head and throat hurt. that i'm dizzy and fuzzy headed. that my sinuses are so sore and so worn from my constant sniffles that i am constantly having blood in my tissues. i want my mom to be able to just make it all go away like i know she wishes she had the power to.
i want it to stop. i want the fight to be over.
but that's impossible, so i do not ask for what no one can give me.

i try to keep my wishes reasonable. attainable. save my strength for hoping for things that could actually happen. but what then do you wish for in this chronic life? what do you hope for when you are surrounded by friends facing similar struggles?
all i can do is hope for strength. for love. for continued chances to see my friends in real life. for the ability to keep going.
and i hope i have hope enough for that.

follow our pawtner @servicedogabraxos
#dog #servicedog #workingdog #spoonie #chronicallyill #arthritis #pots #hypermobility #fibromyalgia #spoonielife #inside #sick #miki #mikidog #toydog #cute #tired #rheumatoidarthritis

comment 0 star 12 1 hour ago

Today’s stripes in red, white & blue because #iloveamerica 🇺🇸 i’m too tired to have much to say tonight, but this is life with #raredisease 🤷🏼‍♀️ prepping for rheumatology appointment in the morning. only 2 more days til #rarediseaseday2020!!! where are your stripes??? #showyourstripes #rarediseaseawareness #rarediseasewarrior #crps #crpswarrior #crpsstrong #complexregionalpainsyndrome #crpsawareness #rsd #eds #ehlersdanlossyndrome #chiarimalformation #zipperhead #chiariwarrior #chiaristrong #pots #dysautonomia #brainlesions #brainstemcompression #undiagnosedillness #endometriosis #adenomyosis #chronicillness #chronicpain #spoonie #spoonielife #babewithamobilityaid

comment 0 star 20 1 hour ago

“the greatest wealth is health.” i’ve come to recognise this quote as being rather untruthful and ignorant.

yes, health is valuable and can help remove some physical and/or mental restrictions when illness is alleviated.

however, we all have our restrictions, whether they are chronic illness, financial strain, difficulty accessing healthcare, time restraints, education, etc.

is an unhealthy person unwealthy? are they inexperienced? ungrateful? under-appreciated? unloved? unfulfilled?

can you really judge a person’s wealth by their health status? no.

even those of us who live with chronic illness who will never feel “100%” can still have an abundance of gratitude, a zest for life, a rewarding career, and a loving family.

motivational quotes are great for some inspiration but they needn’t be used as a way to set unrealistic ideals.
💓 let’s be less judgemental of ourselves and others.

which quotes can we use that are more uplifting and inclusive? i’d love to hear your favourites!
💛 johanna | @ecovireo

#ecovireo #chronicillness #spoonie #invisibleillness #healthyliving #journeytohealth #wellness #holistichealth #selfworth #healthquotes #motivationalquotes #wholehealth #balancedlife #chronicillness #spoonielife

comment 3 star 8 1 hour ago

One of my tasks for today was making corned beef, cabbage and garlic mashed for us for dinner. i love cooking healthy meals for us and some days it's the only big task i can muster. i can end my day feeling like i contributed something positive to our household, and that feels amazing!

my modifications for cooking: 🌿 crockpot meals are my go to for ease and prep pacing
🌿 plan out prep ahead of time, in case my brain fog is bad and i forget what i'm doing
🌿 sometimes i need to sit while prepping

stay tuned, i'm making chicken and mushrooms later this week. here's to working with what you've got! 🦋🕉️💞
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#transformation #quantumshift #energyhealing #traumahealing #namaste #namastebitches #spoonie #spoonielife #invisibleillness #invisibleillnessisreal #chronicpain #chronicillness #chronicpainwarrior #fibrowarrior #fibromyalgia #fibromyalgiasucks #fuckfibro #fibroflare #fibrorecovery #naturalhealing #healyourself #keepongoing #tinyliving #ourhomeonwheels #homeiswhereyouparkit #nomads #nomadlife

comment 2 star 16 1 hour ago

James and i did a quick meet up with @lifes_a_maze_ing today! just a quick trip to menards, but it was fun! james kept trying to guide me and alerted at one point. i don't know why but he seemed concerned about my safety. it was weird. .
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#servicedogteam #servicedog #servicedogsofinstagram #servicedogtraining #servicedogsofig #spoonielife #spoonie #sdit #sd #spooniewarrior #italiangreyhoundsofinstagram #italiangreyhound #chihuahua #miniaturepoodle #notalldisabilitiesarevisible #anxietyalertdog #meetup #servicedogstogether #germanshepherd #greatpyrenees #menards

comment 0 star 15 1 hour ago

I couldn’t decide between guides mint or cookie dough so i got them both!

comment 1 star 20 1 hour ago

So here is a story. last week i was amitted to #albanymedicalcenter for my #svt . i told them they should treat my #uti cuz i have to be there for a week for an #ablation (which was successful to a point). well after the ablation i started spiking temps and pain in my lungss and back. told the doctor something is wrong and i might be #septic or have #pneumonia , but he didn't listen, he sent me home friday.
-i went to urgent care right after and they said i. way to sick for them to take care of me . so #ambulance took me to #stpetershospital where i was amitted for #pneumonia and #kidneyinfection and an #uti. -went to the floor and my hr shot up to the 170s and my fever was in the 106 or so . doctor said labs came back your are septic.
-next day i went into #septicshock -i have 3 bacteria growing in my blood as of right now and many #pulmonaryembolism and getting #ironinfusion every day cuz my blood is so low.
so that is were i'm at right now . very sick , they said i could die .... #tubie #suprapubiccatheter #spoonielife #spooniesisterhood #eds #zebraawareness #pain #neurogenicbladder #chestport #survivor #surviving

comment 3 star 1 1 hour ago

On days where i’m really sick and the pain get to be too much, i resort to painting and creating. one of my favorite mediums to use is watercolor, i love how the paint works with the water to create an amazing work of art. —————————————-
i’ve been doing watercolor cards for about a year now, selling them here and there when people wanted custom made cards. i’m hoping to get some put up on my etsy here within the next couple of days🥰
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what is your favorite thing to do when pain or your illness overwhelms you and you need a distraction?
—————————————— #chronicillness #chronicpain #spoonie #invisibleillness #autoimmunedisease #fibromyalgia #anxiety #spoonielife #health #mentalhealth #love #lymedisease #depression #lupus #instagood #motivation #chronicfatigue #chronicillnesswarrior #butyoudontlooksick #pain #selfcare #dysautonomia #wellness #disability #lyme #selflove #happy #art #watercolorpainting #watercolorpainting

comment 0 star 20 1 hour ago

I'm sure you've seen this quote before. i like to think of it as a way to take a little pressure off yourself. life is not a checklist with deadlines.
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you're life is occuring in every moment between accomplishments and milestones. we tend to get so hung up on what we're striving towards or what we're lacking. trust that your experiences are helping you grow in ways you never knew to plan for. .
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#dysautonomia #potshealing #dysautonomiaawareness #potsie #livingwithpots #autonomicdysfunction #hopeheals #autonomicnervoussystem #healingpower #fomo #healingjourney #chronicillnesswarrior #spooniequotes #pots #progressnotperfection #posturalorthostatictachycardiasyndrome #posturalorthostatictachycardia #spoonie #spoonielife #potsielife #potssyndrome #trustgod #lifeisnotachecklist

comment 4 star 10 1 hour ago

Here we are in #goldsboronc #bernievictorycaptain #rsvp to the event and my man is so awesome, we were turned away at the door and sent to an overflow location!!!!! i'm pretty sure i'm done crying now and we're watching #bernie on a large screen. they said he'll come over here next. sigh. i'm truly just happy #nc feels the bern! shout out to olivia for dealing with my break down. lol.
#ncdems #ncvotesearly #berniesanders #bernie2020 #ncforbernie #spoonie #spoonielife #chronicillness #singlemom #feelthebern #disabled #disabledmom #volunteerforbernie #bernapp #johnstoncountyncforbernie #voteblue2020 #presidentberniesanders #nativespoonie #nativemom

comment 0 star 17 2 hours ago

The past couple of weeks of been tough , between disappointing doctors appointments that left me feeling hopeless, intense pain flares and then a pipe burst and my house flooded. it caused a lot of damage and i’ve spent the past week trying to get things under control unfortunately trying to do that when you have a flare up isn’t the easiest. i’m doing my best to stay positive and luckily i know i can replace everything i lost and moving into a new place won’t be that difficult. it’s just a lot to handle on top of everything 😅😓 #chronicillnesswarrior #chronicpainwarrior #chronicmigraine #chronicmigrainessufferer #migraineawareness #anxietyproblems #anxietyrelief #spoonielife #spooniesupport #invisibleillness

comment 0 star 5 2 hours ago

There is a difference between being alone and being lonely. ⁣

at times, when a migraine is coming, or just gone, or even when you need to wind down or focus - time alone may be just what you need. ⁣

but for someone else, being alone may leave a feeling of emptiness. the challenge of balancing life (and migraines; chronic illness, work and/family) may have left you isolated which can result in loneliness. if you find that you aren't feeling rested (maybe you shop a lot, binge watch tv alone, get sick often, hang out with other lonely people, or you have lost interest in activities that used to give you pleasure) - you might be feeling lonely rather than benefiting from alone time. ⁣

talk to someone, your gp or health care professional if reading this has made you think that you might be lonely. it's not your fault that you feeling lonely. it's part of the challenge of living with a chronic illness. share how you are feeling with those around you. people can feel lonely in a crowd. ⁣

just as important, if you haven't had time alone in the rush and bustle of keeping your life together (and those around you). try to make time to slow down. slowing the pace can feel good.

comment 2 star 4 2 hours ago

Well not too bad.... he is happy with the weight gain (back to triple digits💪) and thinks the tpn should stay until after the surgery.. so now that is squared away, we need to address this reoccurring pancreatitis..... could it be stones? or a bigger issue? or the biggest question what is causing it???? ugh! tests ahead and possibly a new specialist (gotta collect them all)
overall i'm okay and we are improving things, moving in the right direction anyway... i just gotta take it a day at a time, heck maybe even an hour at a time, but it will be okay... #itsalltemporary #igotthis #nevergiveup #spoonielife ....
#spoonie #crohnies #autoimmunedisease #ibd #infusionlife #invisibleillnesswarrior #crohns #ileostomy #autoimmunedisease #biologics #entyvio #chronicillness #invisibleillnesswarrior #erlife #sick #fatigue #hospitals #ibdawareness #malnutrition #pancreatitis #ostomy #ileostomy #stoma

comment 0 star 4 2 hours ago

Nah!
arini ada set fitbit, ada selfie ! 😅🤣 lambat pun takpe,
ai bukan nak challenge sesape.
bukan ahli sukan professional juge,
cuma sekadar fit diri sendiri saje,
kerana ai tak sehat macam uols di luar sane.

sesungguhnya kesihatan adalah nikmat tersembunyi, bagaikan mahkota di atas kepala orang sihat dan hanya dapat dilihat oleh orang sakit sahaja.

gittew...!
baru boleh mandi. 😅🤣 kbai.

#tohealthylife #waytorecovery #keepfit #strava #selfie #selfphoto #sle #systemiclupuserythematosus #lupus #lupuslife #lupusfighter #zoe #raizoemika #livingwithlupus #lupuspatient💜 #lupie #spoonie #spoonielife #butyoudontlooksick #love #life

comment 0 star 4 2 hours ago

My hubby has been flipping furniture for folks. this is one of his latest projects. he is actually letting me paint! i can paint a pretty picture, but me and painting furniture do not mix. 🙃 #painting #redeux #waverly #waverlypaint #waverlychalkpaint #chalkpaint #moss #spoonie #spoonielife #lifeafterlupus #chickenfootwoodworks #popdandme #woodworking #woodworkersofinstagram

comment 1 star 2 2 hours ago

Wat they don't tell fibro patients in the beginning does & can k**l us!! suicide rate is 10 times more likely to hurt themselves due to the decline in health & no quality of life .😞 . this does not have to be the end of your life! i am alive today .being renewed. restored .& refreshed daily with the help of an amazing detox tea 🍃!! i am actually doin things again 💞
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#chronicpain #chronicillness #spoonie #invisibleillness #anxiety #fibrowarrior #lupus #autoimmunedisease #depression #spoonielife #fibro #butyoudontlooksick #pain #arthritis #endometriosis #chronicfatiguesyndrome #chronicillnesswarrior #nomoremeds #chronicpainwarrior #mentalhealth #ptsd #cbd #p*t #fibromyalgiawarrior

comment 0 star 10 2 hours ago

Make sure you pick up your copy of “please read this leaflet carefully” by @karenhavelin for our first book club read!
👇blurb👇
karen havelin’s please read this leaflet carefully is a life told in reverse and a subversion of what we expect from stories of illness. having been diagnosed with endometriosis in her twenties, we follow laura fjellstad in her struggle to live a normal life across new york, paris and oslo, fueled by her belief that to survive her chronic illness she must be completely self-reliant.
flowing backwards from 2016 to 1995, we meet laura’s younger selves: her healthier selves. laura as a daughter, a figure skater, a lover, and a mother—finally leading a life her own teenage self would be in awe of.” be it a physical book, an e-book, through the library, loaned from a friend, we don’t care! 📔♥️ just get reading!

link in bio 📔

id: “march’s book” with an arrow pointing to karen havelin’s book “please read this leaflet carefully” with the sfsp logo next to it

#storiesforsickpeople #bookclub #disability #disabilityawareness #disabled #chronicillness #spoonie #disabilities #accessibility #chronicpain #disabilityrights #spoonielife #disabilityadvocate #disabledpeoplearehot #thebarriersweface #ableismexists #disabodyposi #babewithamobilityaid

comment 3 star 22 2 hours ago

Selfie time! what else is there to do when waiting for the glasses to unfog??? so glad to have a #goodday today and get out and about.
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#buildaladder #snowday #glasses #glassesproblems #spoonie #spoonielife

comment 0 star 8 2 hours ago

Flowly wants to hear your story!
⭐️share your story about “your experience and journey with pain, anxiety, or a chronic illness + why you would want to try flowly” to win a free flowly subscription.
🧡your story can be submitted in essay form, poetry, video, or any other creative format!
💛we will select three winners to win a free one year subscription to flowly, including your own virtual reality headset and sensor. and even if you don’t win, everyone that submits will receive a special discount code to our soft launch of the flowly app and kit- that means your first six months all discounted!
⭐️⭐️⭐️your story entry must touch on:
1. personal journey with pain, anxiety, a chronic illness, or any other reason that draws you to flowly
2. why you would like to try or use flowly in your life
🔸submission period ends on feb. 28!
submit your story to: contact@flowly.world
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by submitting, you give flowly permission to use your story and entry on social media and other materials. if we do so we will not publish your name or any personal information without your permission.

comment 1 star 29 2 hours ago

#repost from @punkrockdinosaur bringing laughter to my morning as i saw this. hope it adds some humor to your day. anyone else remember the feeling when you break your glow stick and it didn’t work? 🧐 #chronicillness #chronicpain #fibrolife #fibromyalgia #spoonielife #spooniehumor #invisibleillness

comment 3 star 31 2 hours ago

Today was awesome pawsome! had a great time with @gatsbygoldenservicedog at the cliche target. gatsby was on point, and bird was just there for the cheese. they are such a great team- go give them some love! •••••••••••••••••••••••••••••••••••••••••••••••••••••• #servicedog #servicedogsofinstagram #servicedogintraining #aussiesofinstagram #aussie #workingdog #workingdogsofinstagram #tasktrained #tasks #alert #medicalalertdog #medicalalertservicedog #fainting #dysautonomia #psychiatricservicedog #potssyndrome #posturalorthostatictachycardiasyndrome #tachycardia #pots #psychiatricservicedogintraining #advocacy #potssyndrome #potssyndromeawareness #spoonie #spoonielife #spartanburgsc #charlottenc #bfrb #dysautonomiaawareness #snoot #boopthesnoot

comment 0 star 34 2 hours ago

Holaaa
so im officially on temporary disability leave for work :( kind of hard for me to accept because i honestly love being a barista .. but thank god that lashing has allowed me to continue making income from the comfort of my home !
right now it feels like with all the medication and even the detoxing ! im getting alittle worse everyday but like i keep saying , i know its gonna get better
today i am resting, no plans , nada
but tomorrow i plan on filming alittle catch up on what exactly my diagnosis’s, treatments and just what life is kinda like at the moment !

tomorrow im trying my fourth chiropractor so wish me luck
ive also really been wanting to do a lil chat vid about respect for yourself and others hehe and how hard it can be sometimes to stand firm over the respect that you do deserve (with no exceptions!) also when do i start hearing from colleges oomf
how are your days going? whats ur life lookin like about now? -
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#beauty #latina #smile #chronicillness #lymedisease #lymewarrior #lymediseaseawareness #fibromyalgia #fibrowarrior #happy #selfie #beautiful #love #lifestyle #lifestyleblogger #fashion #style #influencer #instagirlgang #positivity #chronicillness #chronicpain #chronicfatigue #spoonie #spoonielife #spoonieblogger #spooniesupport #naturalmakeup

comment 4 star 63 2 hours ago

I talk about blue light blocking glasses often because they completely changed my life! my 15 year battle with insomnia might have affected me more than my 9 year battle with fibromyalgia. once i got my sleep under control, my fibro didn't stand a chance.

get your blue light blocking glasses at raoptics.com. use the code name "heal" to get 10% off your order.

some research for you to digest:

blocking nocturnal blue light for insomnia: a randomized controlled trial

https://www.ncbi.nlm.nih.gov/pmc/articles/pmc5703049/

#fibromyalgia #fibromyalgiawarrior #fibrofighter #fibro #sleep #insomniac #insomnia #invisibleillness #youdontlooksick #chronicillness #chronicpain #circadianrhythm #circadianbiology #mitochondria #blueblockers #bluelightblockingglasses #bluelightblockers #spoonielife #spoonie #spooniestrong #spoonies #lightasmedicine #healnaturally #healthiswealth #sun #light

comment 1 star 9 2 hours ago

So i have had quite a busy week!
on monday i had skin biopsies done to check for small nerve neuropathy. he also ordered specific blood work to other nerve diseases. than i met with jamie who is one of the people who works for @tummydrops. i also got to tour the building there in and talk with her about the company. it was absolutely amazing to hear how much effort they put into the company and truly how much they care about their customers. than i had my mcas appointment, which went pretty well. we talked about medication changes that would be made but how happy we were with the dupixent. but with insurance it hasn't been approved yet. so i may not get anything for mast cell stabilizing for awhile. i'm very nervous because i am getting more and more symptoms that are getting close anaphylaxis. i started having reactions on saturday because the drug hadn't built up in my system enough. but now that i can't get it, my body is having more and more reactions. i couldn't be happier that i have iv benedryl because i am very confident it's going to keep me out of the er until i can get the dupixent approved. i than had my feeding tube button changed on tuesday. i am very lucky and i don't require anything for my gj changes. i know many people that do but i will only do it with one ir doctor and shes amazing. she did my original surgery and both exchanges. #dupixent #smallnerveneuropathy #skinbiopsy #feedingtubelife #ehlersdanlos #ehlersdanlossyndrome #eds #heds #intestinaldysmotility #tubie #feedingtube #gjtube #portacath #port #pots #mcas #asthma #adrenalinsufficiency #migraine #sleepapnea #fibromyalgia #chronicillness #chronicpain #chronicfatigue #chronicillnesswarrior #zebrastrong #spoonie #spoonielife #invisibleillness #medicallycomplex

comment 1 star 45 2 hours ago

Welcome to @storiesforsickpeople the place where you can share your thoughts on the books you’re reading, be part of the pass-it-on book club and even join in on our book of the month for our book club!

everyone welcome! as long as you’re sick(ening) ✌️&❤️ eva xx

id: a yellow cartoon book with the title stories for sick people

#bookclub #disability #disabilityawareness #disabled #chronicillness #spoonie #disabilities #accessibility #chronicpain #disabilityrights #spoonielife #disabilityadvocate #disabledpeoplearehot #thebarriersweface #ableismexists #disabodyposi #babewithamobilityaid

comment 10 star 163 2 hours ago

Welcome to @storiesforsickpeople the place where you can share your thoughts on the books you’re reading, be part of the pass-it-on book club and even join in on our book of the month for our book club!

everyone welcome! as long as you’re sick(ening) ✌️&❤️ eva (@wheely_good_time ) xx

id: a yellow cartoon book with the title stories for sick people

#bookclub #disability #disabilityawareness #disabled #chronicillness #spoonie #disabilities #accessibility #chronicpain #disabilityrights #spoonielife #disabilityadvocate #disabledpeoplearehot #thebarriersweface #ableismexists #disabodyposi #babewithamobilityaid

comment 6 star 17 2 hours ago

I have been receiving many questions lately about my bone marrow transplant, so i thought a post was a good idea.

let me first clear up any misconceptions about me getting my bone marrow transplant as treatment for metastatic b****t cancer...that was not the case.

yes, i have metastatic b****t cancer but i was also diagnosed with mds (leukemia-a blood cancer that was caused from chemotherapy treatment when i was stage 1). i was diagnosed with mds june, 2016.

at that time, i had been in treatment for metastatic b****t cancer since march, 2011. i had been ned (no evidence of disease) in my body since september, 2011 (from second line of treatment which was 2 chemos and a trial parp). the mbc showed back up in my brain for which i had 3 brain surgeries to remove over the course of 9 months. after the 3rd brain surgery in may, 2013, i have also been ned in my head since!

so - june, 2016 when i was diagnosed with mds i had been ned in my body since september, 2011 and ned in my brain since may, 2013. at this time i was on maintenance chemo of xeloda, which i had been on since january, 2013.
with me being ned for so long is the only reason a bone marrow transplant was an option. the transplant would not have been an option if i had active b****t cancer.

when i was diagnosed with leukemia, my oncologist had to try extremely hard to find a transplant doctor willing to take my case on being as i was still classified as metastatic (once you are diagnosed metastatic, you are forever classified metastatic.) so to reiterate the fact that a bone marrow transplant would not have been possible if i had active b****t cancer. (i have been asked why i was able to receive a bone marrow transplant and not someone who has active mbc.) now i am 3 years 4 months old (from bone marrow transplant day) and am still ned from b****t cancer and mds!! i really realize that some of you might read this and think, lucky her (i only say this because a few people have said that to me...lucky you for getting a transplant...i wish i could get a transplant) to which is a stab to my heart when this is said to me...none of this situation has been “lucky”
**continued below

comment 3 star 18 2 hours ago

So the lights went off earlier for my babies! 🤗🤗🤗🤗 #pets #lizardsofinstagram #lizardsofig #lizardlover do not be alarmed at the lack of peanut! lol...he’s just hiding out in cave again!...butter getting cuddles from jordan...and jelly being his usual majestic self! lol...night night from the boys! 🦎💤❤️💜 #fibromyalgia #chronicillness #chronicpain #spoonie #fibromyalgiaawareness #depression #anxiety #asthma #life #strong #spoonielife #butyoudontlooksick #mylife #pain #tired #exhausted #mood #funny #love #reptiles #me #lizard #artsy #tattoo #laugh #thrifting

comment 0 star 21 2 hours ago

Is it a very tiny cocker? or a super big ball? 🎾 little man has been super snuggly and i have no complaints, migraines have been crazy and i think he knows how exhausting it is to fight them 🤕. when the weather clears i should start feeling better and we can go play again.
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#servicedogsofig #servicedogsofinstagram #sd #servicedog #medicalalerdog #chronicpain #chronicillness #narcolepsy #chronicmigrains #migrainalerdog #migrainalertsetvicedog #migrainalert #migrains #fibromyalgia #cockerspaniel #pots #eds #cocker #spaniel #cataplexy #spoonie #spoonielife #cardiacalertdog #cardiacalert #cardiacalertservicedog #sjögren’s #lupus #autoimmune

comment 0 star 12 2 hours ago

‪nothing knocks the spoons out of you quite like a clumsy 60 pound dog headbutting you in the throat ‬
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#chronicpain #chronicpainlife #spoonie #spoonielife #disabled #disabledlife #filter #filters #filterselfie #filterselfies #selfie #selfies #disabledandcute

comment 0 star 6 3 hours ago

It’s all about perspective!
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take time to gain perspective. a step back can make you see your circumstances in an entirely different light.
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whether it’s realizing the setback in your life was an opportunity to grow or redirect, or seeing a situation from another point of view, perspective can make all the difference.

comment 5 star 96 last month