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Posts tagged as #spoonie on Instagram

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27 was a year of brokenness and rediscovery. A year where I lost everything that I believed gave me value and significance. I came head to head with my fears and insecurities, and painfully learned (and am learning) to let them go. This year I got diagnosed with a disease that almost took my life, but in the process revealed a new perspective, a new way of living, a new and more authentic self.  My sudden inability to perform put to death the “me” I had curated through my looks, my voice, my serving, my doing. By tasting death I’ve loosened my grip on life, knowing that in the end He is faithful and good. I dream of heaven, but live for now, with more determination and conviction.  The devil tried to take away my voice, my will, my very life—but here I am, alive and unafraid  with a beautiful family and community around me. Though I spent most of 27 bedridden, walking through confusion and grief, I look back and see a beautiful foundation has been laid. God is still good and the best is yet to come. #28 #birthdayreflections #twoweekslate
Before anyone tries to defend edgy autism memes, saying "it's just a joke!" think about what a joke is. Jokes are supposed to be funny. There’s a line between humor and offense, and these jokes cross it. If you are told that they are offensive and keep making them, you are a jerk. . {ID: Dear Allistic People, Your edgy autism memes are not funny. By making and/or sharing them, you come off as a bully. Autistic people are human, not the butt of your ableist jokes.}
I wrote you a poem and it is about biscuits so I hope you like it @sugarandsloth
I saw my geneticist today after a 6 month waitlist and received an official diagnosis of Hypermobile Ehlers-Danlos Syndrome as well as Postural Orthostatic Tachycardia Syndrome. I can’t say I’m happy, but I am fortunate to finally have a proper answer to what has been years and years of pain, fatigue, and other health issues. This journey started when I was 15/16 and realised that being in pain every day wasn’t normal. I saw countless health practitioners over the years and none of them could give me answers. I lived with this pain without complaint until I started dislocating in my shoulders and neck and it became too much to just ignore. The professor at the genetic clinic took one look at my stretchy, soft skin and said, “yup, you have EDS.” He then evaluated me with the criteria and I passed with flying colours (the only test Ive ever aced? 😂). Even though hypermobility doesn’t have a genetic marker yet, I am having a genetic test done because my cardiologist found that my aorta is larger than average, and we want to rule out any potential life-threatening conditions that are EDS-related or otherwise. Even though this whole diagnosis sucks, at least I can work on properly managing this condition from now on! Thanks for all the support so far 💕. Ima keep fighting and advocating, watch this space x
✨ GIVEAWAY TIME ✨  Adjusting to life with a new mobility has been complicated — freeing and restricting, relieving and concerning all at once. Finding ways to make my chair feel less medical and more ME has been incredibly important in helping me make the transition, and FFORA has done just that with their beautiful and thoughtful products.  Friends, we are SO excited to have launched the new #ffora active bag, and to celebrate we have partnered with @disabledinjustice to give one lucky winner our favorite #ffora goodies! our giveaway includes, the #ffora Attachment in color of your choice, our brand new #ffora Active Bag and our brand new "FF" hat.  To enter:  1. Like this photo. 2. Tag a friend in the comments (tag multiple friends for additional entries). 3. Follow @fforaofficial and @disabledinjustice 4. BONUS: Post a selfie to stories with #fforafam for 3 additional entries
 Giveaway closes on December 14th at noon EST. US residents only. Good luck!
I wish I had learned to advocate for the disabled before I became disabled. --------------------------------------------------------------------------- I could have been more productive back when I was healthy. Advocacy shouldn't be left up to just people in marginalized groups. Sure, we were taught that disabled people are no different but we weren't taught about accessibility and what that means for different groups. And now it's that much harder to navigate disability. --------------------------------------------------------------------------- The funny thing is, many people will experience disability. It happens sometimes as a result of just growing old. You would think that would make it easier for abled people to empathize, but I don't think it does. --------------------------------------------------------------------------- Advocacy shouldn't have more impact coming from a place of privilege, but it does. If you're abled, please advocate for the disabled. If you're white, please advocate for people of color. If you're a man, please advocate for women. If you're cis and straight please advocate for LGBTQ. And the list goes on and on. We need you and we need each other! Getting down off my soapbox now 😊
What do you need to help you through next week?  I’m taking a big jar of patience with me to sip on every day.  Find me at @colormehappii for more dashes of color, positivity and inspiration! . . . . . . . #gratitude #encouragement #thinkhappy #youareamazing #youareawesome #dreambig #spreadjoy #anxiety #sparkjoy #morningmotivation #thelittlethingsinlife #mondaymood #illustragram #beoptimistic  #communityovercompetition #mentalhealthawareness#depressionhelp #anxietywarrior #buildaladder #spoonie #begrateful #staypositive  #itsokaynottobeokay #selfhelp #projecthappiness #havehope #takewhatyouneed #womeninspiringwomen #bepatient
I am an open book. ⁣ ⁣ When I struggle, I struggle publicly, & when I succeed, I share that joy with anyone who needs it. I share every part of myself without fear, because I believe that there is strength in vulnerability. ⁣ ⁣ Today, I’m not doing well. As I write a story so close to my heart & my experience, I’m forced to once again relive the trauma that sent my life up in flames a year ago. My nightmares have come back, & I’m haunted by my greatest struggles & regrets. Work is hard, my pain levels are the highest they’ve been in months & months, & I’m writing a book that shares the darkest moments of my life. ⁣ ⁣ And so, I’m struggling. And that’s okay. Social media is too often a depiction of what we want our lives to look like, rather than what they actually are. On this page, I refute that. It’s okay not to be okay. It’s okay to cry & falter & second guess. It’s okay to wish life was different, easier. The only thing that isn’t okay is giving up, so I will not. ⁣ ⁣ One year ago, I was faced with rapidly declining health, a professor who verbally abused me & now haunts my dreams, & giving up the dreams I held closest to my heart. Now, I’m okay some days, & not okay others. In one year, I will look back on this moment, grateful for my strength, vulnerability, & advocacy. ⁣ ⁣ If you’re fighting through the darkness right now, I’m with you, & I’m holding your hand. We’ll survive it together, & we’ll be better for it.
Still as annoying too...🤷🏻‍♀️💩 #crohnsiscray #crohns #colitis
For those who don’t suffer from chronic pain, please remember that our pain is CHRONIC.  The intensity of the pain changes, but it never really disappears. Most of us like to keep our pain to ourselves. But on the days that we actually talk about it, you can be assured that it’s extremely bad. Comment below if this relates to you. Please share/tags a friend who needs to read this.  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 ❤️
“I never show photos like the photo on the right. I never show you the hard times. The times I’m in so much agony that I genuinely question why I’ve been given this life, what I’ve done to deserve a life filled with pain and exhaustion.  The left is all I show. The me on my good days, with a full face of makeup, nice clothes & a smile. But the reality is, I don’t look like I do on the left 90% of the time. I look like the girl on the right. And yes, I may speak about my struggles but I never actually show them. I only do stories of my face when I’m wearing makeup on my good days. I only post pictures that I’ve taken where I’m looking fashionable and put together. But I’m done with pretending and only showing the good sides. I’m not going to paint a perfect picture and let you all believe that what you see on Instagram is reality. Right now I’m going through such a bad flare which I think was triggered from stress. I’m in so much pain all over my body, my stomach is killing, my heart is pounding, I’m so breathless and I feel like I’m going to throw up all of the time. Nothing is helping, no pain killers will take it away. But instead of posting my usual ‘perfect’ picture, with a positive caption to try inspire you all, I’m showing you the reality. My reality. And right now it’s painful.” - @authenticallycaitlin
If you knew me a couple years ago, you probably also knew that I had a flip phone that only worked half the time. You also know how drastically that changed the month I got sick— when my phone became the only thing connecting me to people who understood me. ⁣⁣ ⁣⁣ Since then, I’ve relied so immensely on social media and technology in general to keep me in contact with the world. Especially when I’m confined to four walls that at times feel they are closing in on me, my phone is my escape to places and people I wouldn’t otherwise see. It distracts from the pain and fear buried in my heart, it allows me to be a part of this incredible community, it makes me feel seen and heard in a very very real and important way. It has been a blessing, and it has also taken a huge toll on my mental health. ⁣⁣ ⁣⁣ The reason I had a flip phone was that the constant availability expected of me was too much to handle. I wanted to be able to turn off my phone for even just a day and not feel like I was disappointing anyone. When people knew they couldn’t text me, and often they couldn’t contact me at all because my phone was not reliable, it took so much stress off of me. I no longer felt like a bad friend if I needed some time to myself. ⁣⁣ ⁣⁣ These days; if I take more than a day to answer a text or DM, it weighs on me. I feel I’m letting someone down, like I’ve failed them by not being available to them. It’s affecting my friendships and my emotional well-being in more ways than I could count. ⁣⁣ ⁣⁣ So, what’s the solution? Do I go back to a flip phone and completely lose the ability to participate in the community I’ve come to love, belong to, and feel at home with? Obviously not. Do I keep going the way I have been, allowing myself to be pulled in a million directions by everyone who wants my time and attention, until I have nothing left for myself and I’m burned out so entirely? Also no. ⁣ ⁣ (Part 1 of 2)
I’ve never been more at a loss for words. Thank you, @kaleintheclouds for this.  ________ When things fall apart or divert from how you’d planned, it can be devastating. Broken hearts. New careers. Different outcomes. The unknown is scary, and at times, wildly overwhelming.  ________ This time, two years ago, I was weeks away from what would be catastrophic change. And I had NO IDEA. Ending a five year relationship. Moving out & dividing belongings in a place I’d called home in one afternoon. All the while trying to hold it together while finishing my last semester in law school, and months away from taking the bar exam.  ________ I didn’t recognize who I was outside of that relationship, and in all honesty, I still have days where I struggle with what happened. But at the end of the day, I am eternally grateful I didn’t end up with what I thought I wanted.  ________ Someone once told me, “God laughs when you make plans,” and it’s true. Never hold onto something too tight you lose sight of life without it. Life’s too short & you’re too strong to let a change in course break you; knock you down & make you cry, sure . . . but never break you.
Depression doesn’t have a look. You can have an amazing life and still be depressed. You can be the happiest person on the outside and be depressed. You can be super successful and be depressed. Please don’t belittle the seriousness of the illness because you don’t understand it. Comment below with your thoughts. Please share/tag a friend to bring awareness.  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 ❤️
Y’all I have a girlfriend! I was a little hesitant about revealing that I’ve realized I’m a lesbian but I’ve decided to let y’all know. She’s the crush I was talking about in my previous posts and she’s absolutely wonderful!!! #spoonie #spooniehumor #spooniesupport #disability #disabilityawareness #disabilityrights #disabilityadvocate #disabilitysupport #ableism #chronicpain #chronicpainawareness #chronicillness #chronicillnessmemes #activism #feminism #womensempowerment
When you're struggling with your mental health, everyday tasks like cleaning can feel difficult at best, and at worst, virtually impossible. That's why we're sharing this graphic and message from @blessingmanifesting — to pass along some tips and tricks from someone who's been there.💙 ••• "For a long time, I basically thought I was lazy and disgusting and that's why my home was always a mess. The truth was that I was struggling HARD with mental illness. I knew depression as being unbearably sad and anxiety as feeling unbearably nervous and on edge. No one ever told me that there were layers. That it would affect pretty much every aspect of my life. That it was more than sadness with a bit of fatigue thrown in. • Even after I started dealing with my mental health and learned how to manage both my depression and anxiety, I didn't automatically become a cleaning guru. A lot of my avoidance behaviors didn't just disappear. I had to re-learn how to adult, clean and face the uncomfortable feelings that cleaning would bring up. • So here are the things that helped me during the various stages of learning how to clean." ••• Add your cleaning tips to the comments!👇 ••• #mentalhealth #mentalhealthhacks #mentalhealthlifehacks #cleaninghacks #invisibleillness #chronicillness #spoonie #mentalhealthawareness #mentalhealthsupport #mentalhealthadvocacy #anxietyrelief #depressionsupport #recovery #edrecovery #eatingdisorderrecovery #bipolardisoder #bipolardepression #mentalhealthmatters #talkaboutit #endthestigma #stopthestigma #mentalhealthday #mentalhealthjourney #mentalhealthwarrior #themightysite #mightytogether
Who’s down to hibernate with me in this 25-feet tall Gingerbread House for winter?! 🏠  On a serious note though, I’ll be having my revision hand surgery tomorrow! 🤞  P.S. My mom took this photo! Comment 👑 if you think my Queen Mom slayed it!
It's been a week since I've washed my hair, now what? . . [Photo description: Jess with messy, greasy hair, fiddling with it with her hand and looking downward.] . Last week I asked on my stories what people do with their hair when they can't wash it, and I wanted to compile a list for anyone who struggles with not being able to clean their hair. So, here you have it, my master list for messy hair! . 1. Plait (braid) it! If it's long enough, this is my go-to look! . 2. Messy buns or ponytails . 3. Shave it off/keep it short! . 4. Toques, hats, and beanies galore . 5. Dry shampoo and volume spray . 6. Dye it dark - it shows grease less! . 7. Last but not least, and honestly my favourite, learn not to care how it looks! ( @openmoments thank you for this ♡ ) . . . . . . . . . . . . . . . . . . . . . . . . . #chronicillness #cfs #chronicfatiguesyndrome #pots #pots #orthostatictachycardia #dysautonomia #myalgicencephalomyelitis #me #spoonie #gastroparesis #migraine #chronicmigraines #choosejoy #tired #grateful  #immunedisorder #selflove #spooniesister #gratitude #hospital #hope #carenotcure #butyoudontlooksick #mobilityaid #babewithamobilityaid #wheelchair #cane #caneuser #wheelchairuser
This is what a person with M.E. Looks like. I first posted this on my personal page (@aliceellagram ) on August 8th - Severe Myalgic Encephalomyelitis (M.E.) Day. I was overwhelmed with the response, so wanted to share it on this page too. This day was started in 2013 in response to the death of Sophia Mirza. Sophia was accused of faking her illness, and her family were accused of enabling her. She was sent to a psychiatric hospital where her health declined rapidly. Sophia died of severe ME in 2005 at the age of 32. The coroner's report showed that Sophia had massive spinal cord inflammation at the time of her death, and that she died as a result of acute renal failure arising from the effects of ME. ⁣⁣ Today would have been her 46th birthday.⁣⁣ Swipe ⬅️ to read my story💕⁣⁣ There are over 17million sufferers world wide and 1 in 4 are severe ME cases.⁣⁣ I still face ignorance and people who just don’t seem to understand that not all illnesses are visible. These photos were taken a day apart, yet I get treated completely differently when I ‘look’ sick, compared to when I put on a bit of makeup and ‘smile’. I still get people making jokes that I have ‘lazy people’s disease’ and that I am faking it. And yes it still hurts.  When we do too much we get worse, and so just pushing through it isn’t an option. ⁣⁣ We are driven, passionate people who want to live our best lives, yet we are trapped in a body that won’t let us.⁣⁣ If you’ve read this far, this one’s for you 🌹 Please share this post or the second photo to your stories to help raise awareness and understanding. Thank you 💕 ⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ #severeme #me #canyouseemenow #millionsmissing #butyoudontlooksick #myalgicencephalomyelitis #meawareness #meawarenessweek #mecfs #invisibleillness #invisibleillnessawareness #awareness #spoonie #spooniewarrior #spoonielife #cfsisterhood #spooniewarrior #cfs #illness
This 🙌 . . . #spooniesisterhood #spoonie #spoonies
Nog 15 dagen ✨  Wie mij een beetje kent weet dat ik een grote kerst fan ben. Al vanaf de zomer kan je mij opvrolijken met kerstmuziek en het hele jaar door draag ik kerstsokken (ze zitten gewoon heel erg lekker 😉). Dit weekend hebben we de kerstboom opgezet 🎄 nog twee weken school, studie of werk en dan is het weer tijd voor veel te veel eten en gezelligheid ✨  Ben jij een kerst liefhebber of toch meer zoals de grinch?  #christmas #kerst #kerstboom #geluksmomentje #leef #hoogsensitief #hooggevoelig #genieten #psychologie #schrijven #enjoy #zelfliefde #vrouw #vrouwen #plezier #happyyou #feelgood #dutchblog #loveyourself #loveyourbody #leven #persoonlijkegroei #weesjezelf #stress #spoonie #spoonielife #liefde #cvid #chronicillness #chronischziek
Who else gets tired of Healthy People™ asking this every day? 🙋🏻‍♀️ I understand that it’s with good intentions, but I’m still sick, Karen. I was sick yesterday, and I’m sick today, and I’m going to be sick tomorrow. It hits different when other chronically ill people ask, because, well, first of all we don’t ask each other every day, because we know better 😂 But healthy people and chronically ill people interpret and react to whatever the response may be in TOTALLY different ways. Chronically ill people don’t interpret a description of today’s symptoms as pessimistic or looking for pity. Chronically ill people aren’t going to tell you to try going for a walk or getting out in the sun if you can’t get out of bed that day. And chronically ill people know that if your answer on any given day is “better” ... it doesn’t mean cured. . You guys, I’m so tired, is chronic illness normalized yet?? 😂😂😂 . . . . . .  #spoonie #chronicillness #invisibleillness #posturalorthostatictachycardiasyndrome #potsie #dysautonomia #autonomicdysfunction #myalgicencephalomyelitis #fibromyalgia #chronicfatigue #chronicfatiguesyndrome #gastroparesis #ehlersdanlossyndrome #heds #zebrastrong #spooniestrong #chronicallyawesome #smallfiberneuropathy #craniocervicalinstability #ibs #irritablebowelsyndrome #spoonieproblems #mcas #mastcellactivationsyndrome
For anyone that has seen a all doctor, functional practitioner, healthcare provider, homeopathic, holistic... all of them.  In the past 10 years, every single provider I have seen, both traditional and non-traditional have tried to load me up with new prescriptions, new supplements, new drops, new pyramid schemes of probiotics and specialty containers I can’t get anywhere but them.  Listen to me... until you find a provider like I have right now, keep walking away.  Here’s some signs of a good provider. 1️⃣ You have adequate time to share about your whole health. 2️⃣ They ask questions to help better understand you. 3️⃣ They affirm what you’re saying. 4️⃣ You receive sound guidance or a purposeful plan to find the guidance needed. 5️⃣ When you ask for bloodwork panels, they order bloodwork panels. 6️⃣ When you ask for alternate options, they make efforts to provide those. 7️⃣ If they don’t know something, they admit it. 8️⃣ Their goal should be the same as yours.  Here’s mine: reduce pills, reduce supplements, reduce symptoms, improve overall health... and the best part is that my current provider is on my team. We’re in this together.  At least that’s how she makes me feel. She gives me the time I need, the support I need and she values my knowledge.  If you don’t have a good one... today, I want you to know they do exist. Keep searching.  xoxo, Aimee
Stuck in bed today after last night’s concert! I’ve officially run myself down. I’ll post more videos of the concert in my stories later this week. Having #chronicillness is tough. A lot of the time you feel okay but you’re really just running on adrenaline and then your body crashes when it’s over. Taking the day to rest and recuperate because I’ve got another big several days in a row starting tomorrow 😬 Feeling that holiday madness! My cute top is on sale for under $30, but it’s sold out in this color. They do have a really pretty ivory one though that I might like even more! Also found these jeans on sale! Linked in the @liketoknow.it app for ya! Anyone else feeling the stress of the holiday grind? 👇🏼🙋🏼‍♀️ Remember, it’s ok to stop and rest! Everything will be there tomorrow! ⁣ ⁣ Shop this look by downloading the FREE LIKEtoKNOW.IT app in the app store! Just search for and follow me and you can shop all of my looks in one place! You can even save your favorites for later! OR, click the link in the bio and click "Shop My Instagram". ⁣ ⁣ http://liketk.it/2HYr7 #liketkit #ltkholidaystyle #ltkunder50 #ltkunder100
We’re busy busy here at @tartbytara 🐝🐝!! We have some beautiful new spoons filled with crystals and lotus symbols coming for you guys! We have these in several styles and they will be available next week. . These spoons were originally created by us as a symbol for the Spoonie community. A “Spoonie” refers to those that suffer from chronic pain and mental health. We have a whole section in our highlights if you’d like to know more! . .💜🔮💎 We make these by hand pouring resin and placing the crystals inside. These spoons are symbolic for the chronic pain community but can be used for meditation, altar tools, mixing herbs, divination, and whatever magic you can think of. . They are NOT intended for food or beverage! Treat them as you would any crystals😊 . . . 💜💎🔮 #theoriginalspoonmaker  #spoon #chronicpainawareness #spoonielife #spooniewarrior #spoonieproblems #spooniesupport #spooniesofinstagram #anxietyrelief #chronicillness #anxietywarrior #chronicpain  #calm #warriors #spoonie #spoonielife #spooniewarrior #spoonieproblems #spooniesupport #spooniesofinstagram #amethyst  #spoonielove #tartmagic #tartbytara
❄️❄️Snowflake Spoons❄️❄️ . We will be adding some amazing snowflake #healingspoons to our shop!! We blended resin, lapis lazuli, amethyst, howlite, fluorite, Stars, glitters and snowflake charms to create these one of kind winter spoons!! . . For those of you who are new the healing spoon was an original creation by us @tartbytara ! We took the “spoon theory” and made these one of a kind creations!! The shape is symbolic for the “spoonie” community. People (like myself) who suffer from chronic pain or mental health issues. I have lots of customers that don’t call themselves a spoonie though! They are for anyone. The crystals inside are where the healing come from. Applying pressure to crystals or stones increases their natural healing properties. Placing them in resin does that! Some use them worry stone, some meditate, some place under their pillow or beside their bed. . Available 12/13 @ 7pm CST in our Etsy shop . ❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️❄️ #healingspoon #theoriginalspoonmaker #tartbytara #chronicillness #chronicpain #chronicpainwarrior #chronicillnesswarrior #chronicloveclub #spoonie #spoonieofinstagram #spoonies #spoonieproblems #spoonielife #spooniewarrior #spooniewitch #spoonielove #snowflake #snowflakespoon #tartmagic #chronicillness #invisibleillness #invisibleillnessawareness #butyoudontlooksick
The you’re not better subject🙄... when people still are ignorant to the type of illness you have. The hardest and most exhausting part is the answer and how it makes you feel. 💕😩 •• Can anyone else relate?  ##fibromyalgia #fibrowarrior #fibrocommunity #potssyndrome #potssyndromeawareness #hypermobility #hypermobilitysyndrome #anxiety #anxietyproblems #mentalhealth #spoonie #spoonie #ehlersdanlossyndrome #idiopathicintracranialhypertension #intracranialhypertension #invisibleillness #invisiblepain #chronicillness #chronicpain #community #chroniccommunity #asthma #butyoudontlooksick #yourestillill #illness
Tag your hype squad and let them know what they mean to you! 😘 Chronic pain can be a truly isolating experience day in and day out — resting, getting treatments, going to appointments and just plain seeking refuge from pain 😒 Sometimes I feel like I’ve slipped down a sinkhole 🕳 separate from society and in a place that only spoonies can understand  Thank GOODNESS for virtual connections that help us share and find support without leaving the comfort of bed or couch 🛋 People love to hate on social media + our increasing reliance on technology, but it’s a true lifesaver ⚓️ to those who don’t want to navigate the rocky waves of illness and inner struggles alone 🌊  Sometimes, all it takes is one text or call to spark connection during the darkness of lonely days ⚡️So if you’re able, reach out today and tell someone they are loved and have the strength to keep going 💪 I can’t imagine coping without this #instafam and please know each one of you in this growing CC community means something truly special to me 🤗 Thank you for being here and lighting up my days, and I hope I can do the same for you, too 🥰  #onlinecommunity #instafamily #supporteachother #womensupportingwomen #communityovercompetition #celebrateeachother #groupchat  Via @artsyaffirmations
One of my sweet friends I met through IG messaged me yesterday and asked how my treatments were going... I haven’t talked about it much here in a while. To be honest, I kind of stopped treatments. For those of you who are new here, I’ve had #chroniclymedisease for a long time. A couple years ago, I had an amazing laser treatment done for it. While it has been a slow recovery process, it helped me immensely and I’ve gotten better year after year since. But, I still have been very sick despite the Lyme not being currently active. Through many rounds of testing, we discovered that I have #moldtoxicity from a prolonged exposure at some point. Mold exposure can cause a storm of symptoms and disease, even cancer. So, it’s critical to treat it. But, it’s also very difficult to treat. I started an herbal protocol over a year ago and it wiped me out so much I couldn’t function. So, I tried #ozonetherapy last summer and it knocked me out, too. Not as badly, but enough. So, I did the liver/gallbladder cleanse in hopes of being able to handle the die off from the treatments better. But, that also did a number on me. So, I decided to take a step back from treatments and try to rebuild some strength. It’s been working and my energy levels are back up! I think there’s definitely something to be said for taking breaks in between difficult treatments. I have to try to treat it again, but I’m waiting until I feel strong enough to give it another shot. I never really know if sharing this with you is something most of you are interested in or not, so I try not to overload you with my illness info. But, if it’s something you’re curious about or are going through, too, I definitely want to be open about sharing it. We are all on this #wellness ride together and the more we share our successes and trials, the more we all learn and heal. Let me know in the comments if sharing more of my #wellnessjourney is something you’d like me to do 💖👇🏼⁣ ⁣ Shop
I want to talk about bravery! 💛💛💛 ▪️ It’s been 1 whole year of being a part time wheelchair user, 9 years of ill body but 19 months of horrible health, pure pain, amazing strength and beautiful support!! This year has been the hardest year of my life, and the hardest and most heartbreaking year for my family too. I’m so incredibly grateful and proud to call my loved ones my family, they have been here for me every second of the way with all the love and support in the world, especially when others have found the task too challenging. ▪️ I am also so proud of myself, I’ve come out of this year so much stronger, so much more resilient and motivated to make this a good life no matter how tough it will be. Stepping into 2020 I want to step out of my comfort zone and challenge myself in overcoming fears that have been created by my health, i want to contribute more to the health/ chronic illness community and to take some time away from health/ hospital life and visit this beautiful world, oceans and islands (my happy places) ▪️what makes you brave? ☀️🌿 #bucketlistchristmas
Anyone else familiar with this? ••••••• All the time I feel like I’m convincing people it isn’t really that bad, and I’m fine, and I can handle it all. But it is that bad. I’m not fine. And I can’t handle it all. I have a rare chronic disease. I have to work. I have to go to doctors and treatments all the time. I need to keep up with my apartment. I have a dog and cat to take care of. I pass out, have seizures, throw up, have episodes, and deal with a ridiculous amount of symptoms from my collection of diseases... But through all that. It’s easier to say I’m fine. It’s easier than having to see that look people give you. It’s easier than listening to them say “I don’t know what you want me to do.” Its easier than having to try to think of ways for them to help you... That’s why I love this community so much. I don’t need to pretend to be okay here.  So I feel like crap, and I’m going to be hiding in bed for the rest of the day 😅😴 if someone could just pay us for being sick so we didn’t have to work... that’d be great 😂 . . . #chronicillness #chronicillnesswarrior #gbs #chronicallyill #fibromyalgia #cidp #fibro #pots #migraines #mentalhealth #sicklecellproblems #anxiety #eds #chronicpainwarrior #health #chronicillnessawareness #spoonielife #endometriosis #lymedisease #chroniclife #celiacdiseaseawareness #chronicpain #chronicfatigue #chronicpainawareness #lupusawareness #migraineawareness #butyoudontlooksick #ms #spoonie
Us and Henry! By Catching Moments photography. Thank you for making my life, @happyhensandhighlands!! #cow #cows #highlandcows #highlandcoos #highlandcow #fluffycow #spoonie #happyhensandhighlands #cowsofinstagram #love
Easing in to using a mobility aid (it's possible!) . . The transition into using a wheelchair or cane or walker or any mobility aid is incredibly difficult. I've had a few people ask me since I started this account for some tips on how to make that shift, and I was happy to help. I'm by no means a professional at this, but I wanted to share a bit how I made the transition. . The first thing I did was choose the right aid. I had the chance to rent a wheelchair for a few weeks before I chose mine, so I got to learn what worked best for me, and what features I wanted or didn't want. Similarly with my cane, I chose a handle that worked well, and a pattern that I felt most comfortable carrying. . Next, I practiced. Not everyone has the luxury of transitioning slowly to using an aid, but I did, so I spent some time getting comfortable with the movement of my chair and the swing of my cane close to home, so I wouldn't feel so awkward when I took them out. . Then I used them in familiar places that I could mind map well, with people who I knew would help normalize my experience. My friends have made it so much easier to laugh at awkward moments, rather than getting frustrated or defeated with the inaccessibility and awkward interactions I occasionally come up against. . Beyond that, for me, it's just been a matter of time. I've learned what clothes get caught in my wheels, which shoes work okay with my cane, and what terrain my cane and chair can handle. . It takes practice, and I'm still learning every day. My only real piece of advice is learn to laugh at the fumbles - it'll make them easier to push through. If you're transitioning to using a new or different aid, I'm rooting for you. You can do this 💖 . . . . . . . . . . . . . . . . . . . . . . . . . . . . #chronicillness #cfs #chronicfatiguesyndrome #pots #pots #orthostatictachycardia #dysautonomia #myalgicencephalomyelitis #me #spoonie #gastroparesis #migraine #chronicmigraines #choosejoy #tired #grateful 
Today I voted for Labour. I voted for my disabled friends, and all the disabled people I don't know who I advocate for every day. I voted for everyone affected by tory austerity in the past 9 years. I voted for hospitals, and the NHS, I voted for billionaires to pay their taxes and pay their staff a living wage. I voted for nationalisation. I voted because I can empathise with other people who are struggling. I voted because brexit is no where near the most important issue facing this country as people effected by tory austerity are dying. I hope you did too. . . . ID: a picture of me standing next to a green door with a polling station sign on it. I'm a 5'8 Caucasian male with a full faced black beard. I'm wearing a green beanie, white and grey knitted jumper with polar bears on. A green hoodie and green chinos. As well as red air Jordans. I'm using bright red crutches.
Dear Santa.  Please and thank you. . . . . #spooniesisterhood #spoonie #spoonies
Next week starts Crohns and Colitis Awareness Week. I can’t wait to join with my friends in education and advocacy while we show you what it means to be #ibdvisible and to #getgutsy. I snagged the perfect shirt for this week from @rodeohippiebrand and my skinny jeans are on sale right now. Don’t forget, you can screenshot my posts and shop them on the @liketoknow.it app or visit the link in my bio. http://liketk.it/2HBnR #liketkit  #ltkfashion #tallgirlstyle #minnetonkamoccasins #affordablefashion #crohnsandcolitis #autoimmunewarrior #pageantqueen #spoonie #mrsedmondintl2020
I guess it’s time I introduce myself and tell some of my story. Hey, I’m Vanessa. Here I am at 14 years old at the Bay Area Medical Center in Marinette Wisconsin on December 11, 2013. I was about to be told news that would change the rest of my life.  A little less than a week before I went to the ER, I noticed when I woke up one morning that my hand felt funny. It felt like it was asleep, or like I slept on it weird. It was like, tingling.. Or like how your mouth feels after the dentist.. I tried to pretend it was fine and went on with my day, and headed to school. As the day went on, the feeling crept up my arm. I again brushed it off but was gradually getting concerned. The next day I was freaked out even more. The feeling was beginning in my right leg, starting at my foot/ankle. And again crept up throughout the day. I finally went to the school nurse and told her what was going on. She looked at me and said “Vanessa, you shouldn’t be in here, you need to go to the ER!” So there I went.  And my life changed forever.  I had no idea what Multiple Sclerosis was. The nurse holding my hand advised me not to look it up on the internet at all, I would scare myself. They assured me that everyone’s diagnosis is different, and that I can manage this. Almost six years later I’m amazed at how brave I was.  I spent basically my whole high school career figuring out insurance, medications, and doctors. I went from giving myself shots three times a week, to pills twice a day that made me feel like absolute trash.  But I guess in all of this, I’m thankful. I’m thankful they were able to find it when I was young, so I could get things figured out early on. I’m now on Ocrevus, an infusion that I get once every 6 months. For the longest time I guess I haven’t wanted to accept the fact that I have this, but I guess now I’m trying to reach out a little and learn from others who are fighting chronic illnesses also. I admit being this young and trying to
Nothing better to start the week off by having breakfast in bed with a big cup of coffee! 🥞☕️ * * * * we gave @torills.table a try and it made the most fluffy and flavourful waffles! Huge bonus that it’s #dairfry , #soyfree , #vegan and #glutenfree 😋
If you aren't laughing today, we can't be friends 🤣🤣🤣. Seriously. Please tag a friend and check out #tenlaughsfortuesday. Follow @momadvice for a weekly dose of LOL. . . #lol #momlife #momhumor #spoonie #spoonielife #twitterquotes
Who else is dealing with this struggle?? 🙋🏻‍♀️ What is a single-use item you have to use frequently due to chronic illness? . I’m constantly trying to find the line of reducing waste without jeopardizing my quality of life. . Recent discourse has made it very clear that the majority of Healthy People™ do not truly understand how much single-use items - which many of us only have access to in the form of plastic, or can only use plastics for health and safety reasons - are necessary for our continued survival. . I think we’re all already familiar with the straw ban and why it’s so problematic for the disabled community. But let’s talk about all the other stuff. . The medication bottles that many people can’t recycle (if you have access to a recycling facility that accepts them, GREAT! But so many of us don’t.) . Food allergies/intolerances and digestive issues can make it literally impossible to choose low-waste options like fresh produce. . The central line supplies that create a whole bag of trash on their own every week, because everything has to be single-use to keep it sterile so we don’t, like, get a blood infection and die. . Feeding tube supplies, typically used daily and most of which are plastic. . The loads of paper waste from all the doctor appointment print-outs (a lot of them are switching to online, but many of us still need the printouts for things like disability cases). . Things people never want to talk about, but are often a necessity for so many (regardless of age), like adult diapers. . The giant carbon footprint a lot of us have to leave from traveling long distances because there aren’t any local doctors who treat our conditions. . Things like bleach, sanitizing wipes, alcohol pads and swabs, etc. . Having to use specific hygiene products due to allergic reactions. Yes, reactions even to the natural ingredients often used to make ZeroWaste products (mast cells conditions are a bitch 🙃) . This and SO MUCH
If you know, you know 🌸 . I’m standing in solidarity with anyone who is working on their health, I know your burden is heavy. If you can relate, comment a ❤️ below 👇 . Not my words, quote source unknown 💕
Story of my life. Who else can relate?😂
Relatable. Follow  for more posts like this - Kit . . . ⁣⁣ ⁣⁣ ⁣⁣ 🌟P.S Click link in bio for Chronic Pain Solutions⁣⁣ ⁣⁣ __⁣⁣ 🖤@pain.relief.remedies⁣⁣ __⁣⁣ __⁣⁣ __⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ ⁣⁣ 📷@meme_the_sick_away🤰 #gastroparesis #chronicillness #doctormemes #endometriosis mentalhealthawareness #chronicpain #loinpainhematuriasyndrome #tired #chronicallyill #painwarrior #fibrofog #endowarrior #anxiety #chronicillnesswarrior #crps #fibromyalgia #spoonie #sle #occipitalneuralgia #ibs #endometriosisawareness #naturalhealing #backpain #naturalremedy #healthyhome #functionalmedicine #painreliever
AD - As you might have seen on my stories at the weekend, I’ve been test driving a new mobility aid in the form of this ultra-lightweight rollator from Fenetic Wellbeing. Head over to my blog now to read an honest review of my experience as a first time and young rollator user and how it helped me tackle the Christmas shopping  #feneticwellbeing #mobilityaid #differentaidsfordifferentdays #babewithamobilityaid #disabledandcute #disabledmodel #invisibleillness #spoonie #spoonieblogger #butyoudontlooksick #hsd #jhs #hypermobilitysyndrome #fibro #fibromyalgia #fibroawareness #chronicillness
Sending love and light out to all my #invisibleillness #warriors 💗✨ It’s hard to look “fine” on the outside, but be fighting a battle inside that nobody but you can understand.  Despite the pain and fatigue that I feel from the moment I get up to when I am finally able to sleep at night, I will never let the pain take away my smile and happiness.  Continue to count your blessings and be grateful for life and the people, places, and things that bring you joy!  #lupuswarrior 💜🦋✨
while #chronicfatiguesyndrome can keep you in bed a lot of the time (or most of the time for me as of recent), it only makes going out with friends more fun! 👯‍♀️ #getyourskinout #psoriasiswarrior #psolovely #chronicallyfabulous #scalppsoriasis #chronicloveclub #mecfs #fibrowarrior #fibromyalgia #spoonie #psolovely
The most beautiful moments sometimes look like shared tears under a blanket, whispered  conversations about each other's inner thoughts and endless hugs because you just don't want to let go.  And then drinking tea that has gotten cold long ago ❤ @emily_jf  After waiting a year (!) to be reunited high fever, IVs and breathlessness couldn't take us apart. It meant meeting in my bed, but all what matters is that we did it.  #teetassenreunitement
Part 2: I don’t know the right answer, but I do know what feels right to me at this time. So I’m setting a screen time limit with a code I don’t have access to (only one person does and she won’t give it to me outside of emergencies) that limits my entire screen time to one hour per day, other than phone calls. This means I have 60 minutes total out of every 1,440 minutes in which I allow myself to focus externally and respond to text messages, post on here, answer DM’s, peruse twitter, check facebook, etc. ⁣⁣ ⁣⁣ This is the compromise I’m willing to make at this point in my life. I want to be a good friend to everyone in my life, and a good advocate in this space, and I will make an effort to do that. But I also want to spend as much time as possible focusing on myself, my mental and physical health, and my future. I need to start studying for the GRE, send out my resume to organizations I want to work with part-time remotely, and start looking into grad school programs that fit my new needs and abilities. ⁣⁣ ⁣⁣ So that’s the plan for now— I’ll be around, just less constantly. If you really need me, call me and I will receive that even after my screen time expires. Otherwise, I will budget my time to make sure I’m there for everyone when I am able. Some days I’ll likely use the full hour to text one person if they’re in a hard place and need it. Other days I’ll use it to scroll through social media and catch up on everyone’s lives. Of course, some days I’ll use it to post on this account and continue to use the platform you’ve given me to spread love, self-compassion, and acceptance. ⁣⁣ ⁣⁣ I appreciate your understanding and support through this transitional period and I hope you all feel empowered to take time for yourselves whenever you need it, without any feelings of guilt. You deserve your own attention as much as anyone else does. You are just as important as everyone else. And as always, I love you
J’avais vraiment envie d’une semaine tranquille sans considérations médicales mais cela ne sera pas cette semaine... espérons que les fêtes seront plus clémentes 🤗🎈 bon vendredi à toutes et tous résilience #maladiechronique #detox #blousesblanches #médecins #docteur #reeducation #kinesitherapie #malade #maladie #patient #patiente #viedepatient #experienceholistique #vismavie #respirer #bouffeedair #spoonie #handicapinvisible #maladieinvisible #sed #humour #humourdujour
THIS SONG IS A BOP. 🎄🎅🏼⛄️ What do you y’all think of my floor routine? @little_gute and I are working on a little something special for the annual jingle ball bash and I don’t wanna brag but I think we NAILED IT. #invisibleillness #notalldisabilitiesarevisible #spoonie #fibromyalgia
Relatable 👆👆👆 Follow @meme_the_sick_away for more posts like this 👌 - Kit . . . #chronicpain #anxiety #fibromyalgia #narcolepsy #spoonie  #chronicillness #chronicfatigue #eds #lymedisease #mcas #lupus #pots #celiac #multiplesclerosis #endometriosis #mentalhealthawareness #migraine