This is Fibromyalgia. This is Chronic Illnesses. This is Chronic Fatigue. This is Mental Health. This is getting knocked down. But I do promise you this! I will get back up and fight again! I will not be down for long. I will regain my strength and fight another day. You are enough! You are stronger than you think. You are not a burden. You are worthy. And you are certainly not alone in this! I see you trying. I see you fighting. I see you getting knocked down. But I also see you getting back up! Much Love Stay Safe Natasha #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiacanada #fibromyalgiacommunity #fibromyalgiasupport #fibromyalgiawarrior #fibromyalgiafighter #fibromyalgiastrong #fibromyalgiasucks #fibromyalgiamonth #fibromyalgiaday #fibromyalgiaproblems #spoonie #spoonielife #spoonieawareness #spooniesupport #spooniecommunity #chronicillness #chronicillnessawareness #chronicpain #chronicpaincanada #mentalhealth #mentalhealthawareness #mentalhealthcommunity #mentalhealthadvocate #mentalhealthsupport #bellletstalk #bellletstalkday #mentalhealthmonth
EHLERS-DANLOS SYNDROME AWARENESS MONTH 🦓🥄✨ (ID/1) - • Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders • These cause very flexible joints and skin which is very fragile, stretchy and easily breakable • There are several types of eds and many types of the condition are rare • Some find the way the condition impacts them as mild but for others it is extremely life-limiting, as it is a disibility and chronic illness. (ID/2) - There are 13 types of EDS: • Brittle cornea syndrome (bcEDS) • Cardiac valvular eds (cvEDS) • Classical eds (cEDS) • Classical-like eds (clEDS) • Dermatosparaxis (dEDS) • Hypermobile eds (hEDS) • Kyphoscoliotic eds (kEDS ) • Musculocontracural eds (mcEDS) • Myopathic eds (mEDS) • Periodontal eds (pEDS) • Spondylodysplastic EDS (spEDS) • Vascular eds (vEDS) (ID/3) - The connective tissue in your body is like the glue that holds your organs And joints together, so in those with eds, it is defective and ‘weaker’. some compare the connective tissue to ‘brick and mortar’, so it is significant to suffer a defect to the tissue. it is also siGnificantly more of an issue as those with eds suffer from hypermobility; in the case of someone with normal collagen, this will keep your joints in place normally, but for those with eds, it makes it easier for one to dislocate their joints due to their hypermobility, and where a normal hypermobile person’s joints would be kept in place by their stronger collagen, an EDS patient’s collagen would not support the joint and thus cause a dislocation. (ID/4) - The most common type of eds: Hypermobile Ehlers-Danlos Syndrome (hEDS) The rarest types of eds: Vascular Ehlers-Danlos Syndrome (vEDS) Kyphoscoliotic Ehlers-Danlos Syndrome (kEDS) Periodontal Ehlers-Danlos Syndrome (pEDS) (ID/5) - I have hEDS! For a long time I thought, and I was taught, that hEDS is a rare disease! Funnily enough, it isn’t. Ehlers-Danlos Syndrome is a rare disease as a group of the 13, but the hypermobile variant is not rare! I am trying to learn more about the different variants that are rarer now I know. (ID/6) - (Continued in comments)
ONLY 7 SPOTS LEFT! We're partnering with @welovecampmapleleaf and @cfcanada to offer Canadian youth aged 11-17 years living with CF a virtual camp experience! Hosted over 5 days, from July 8-12, campers can meet each other virtually while participating in fun camp activities daily from 12-2pm EST on Zoom! Click the #linkinbio for the Camp Fromaway application, or e-mail [email protected] for digital posters to give to the youth you work with. . . . . . . . #summercamp #cysticfibrosis #chronicillness #spoonie #spooniecommunity #CF #cysticfibrosisawareness #cysticfibrosissupport #childlife #childlifespecialist #childlifespecialists #teacher #teacherlife #spoonieawareness
Diario di bordo: 9/05/24 - Nonostante la pioggia che ha creato un pò di problemi, per me è stato bello e molto più accessibile godermi tutto senza una confusione troppo soffocante. - Per la prima volta ho usato il mio pass auto e il mio cervello ha pensato fosse un privilegio. Bello questo abilismo interiorizzato✨ Preferirei il privilegio di essere in salute che quello di un posteggio, che privilegio non è. Ma ci sono cose più belle che voglio ricordare: - Ti sei sentita un pò spensierata, non importa per quanto, e sai quanto sia prezioso. - Hai amato conoscere un sacco di gente nuova. - Sorridevi come una bimba per ogni singola persona fan di adventure time che ti fermava per come fossi vestita - Hai sentito che la tua disabilità fosse invisibile e per la prima volta forse, in senso buono. Mi capita così spesso di sentirmi un fantasma, di essere trattata diversamente o di essere osservata in modi pochi piacevoli. Io non ho pensato un solo momento alla mia sedia, chiunque si è approcciato a me in modo del tutto naturale, senza neanche guardare la sedia, vedendo semplicemente me, così mi sono sentita. Con la semplice gioia di chiaccherare, condividere passioni, parlare di qualsiasi cosa nerd che ci venisse voglia di condividere. E così tante persone mi hanno regalato energie positive e sorrisi, forse senza neanche saperlo. - Mi sono sentita me stessa, una sensazione che cerco di ritrovare da un bel pò e sto iniziando a capire, a riscoprire. - Ho realizzato il desiderio della me bambina fissata con Art Attack e sono riuscita a incontrare Giovanni. - Ho dovuto prendere del cortisone ma sono riuscita a reggere alla giornata senza stare troppo “male”. -Sono grata. Per qualcun* queste possono essere semplici giornate per me non lo sono. E in realtà non dovrebbero forse esserlo a prescindere. E no, non lo dico per ispirare chissà cosa o solo perchè ho delle disabilità. Nei tempi che viviamo credo che praticare la gratitudine sia molto importante. Ma sarebbe un discorso troppo lungo adesso. Foto 5: sfocate si, ma❤️ Video 8: Lady Chips prova pose per ostentare il suo nuovo bastone rosa, prova anche a fare l’antipatica ma è solo una patata ripiena🌈 Bye🦋
🥲😁 . . . . . #chronicillness #chronicpain #chronicfatigue #chronicillnessawareness #chronicillnesslife #chronicillnesswarrior #spoonielife #spoonie #spoonieawareness #spooniesupport #spooniewarrior #spooniecommunity #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #ehlersdanlossyndromeawarenessmonth #ehlersdanlos #ehlersdanlosgrrrls #selfcare #pots #potsielife #potsiestrong #cfs #jointpain #jointhealth #joints #rheumatoid #invisibleillness #disabilityawareness #disabilitylife #dynamicdisability
The chronic illness community often finds Mother's Day to be particularly painful. The reasons can vary, from having trouble finding a partner they would want to have a child with, to having trouble conceiving, to losing a mom, to having difficulty parenting when also juggling a chronic illness, to having a difficult relationship with their mom. We've included 24 different situations that you may be experiencing, and we apologize if there is something else you are struggling with today that we didn't recognize here. Please take as much time as you can today to prioritize your emotional well-being and physical health. We see you. ❤️ Image description: a post that makes space for everyone today who is grieving the loss of a child, has lost a pregnancy at any stage, is raising children while battling an illness, developed an illness during pregnancy, is struggling to conceive, is grieving the loss of a mom, has experienced a failed embryo transfer, is grieving the loss of a pet as a fur mom, can't have children because of their illness, wishes they could have more children, has suffered an ectopic pregnancy, developed an illness after pregnancy, can't afford to adopt a child, can't afford fertility treatments, doesn't have enough support raising children, finds Mother's Day very painful, is struggling to find a partner, has gone no-contact with their mom, is in the hospital on Mother's Day, has a difficult relationship with their mom, needs medications that isn't safe for pregnancy, is struggling with a surrogacy process, feels judged by other moms, and/or is pregnant with a rainbow baby. #chronicillness #chronicillnessawareness #chronicillnesswarrior #chronicillnesslife #chronicillnesscommunity #potsawareness #potssyndrome #posturalorthostatictachycardiasyndrome #potsie #potsielife #potsiestrong #dysautonomia #dysautonomiaawareness #spoonie #spoonielife #spooniesupport #spoonieawareness #community #support #awareness #flareups #empowerment #empowered #selfcare #warrior #mothersday #grief
Multiple Sclerosis is autoimmune disease. A disease in which the immune system eats away at the protective covering of nerves. Myelin sheath damage causes nerve damage that disrupts communication between the brain and the body. #thisisms #ms #mslife #livingwithms #livingwithacronicillness #autoimmunedisease #beyourownadvocate #chooseyou #raiseawareness #spreadtheword #chronicillnessawareness #invisibleillnessawareness #disabilityawareness #spoonieawareness #disabledlife #chronicillnessproblems #chronicillnessandme #invisibleillness #invisabledisability #mssucks #fums #spoonies #spoonielife #msawareness #msactivist #msadvocate #mscommunity
I've had to cancel my usual Friday morning things cos this week has dropped me into a flare. Between a busy workload Tuesday, the headache escalation on Wednesday and then pushing through work yesterday because chronic illness is an expensive life burden, I am absolutely cooked. Cancelling almost everything. Bright side: might finish this book I'm only 5% through 🤣 #fibromyalgia #flaredays #painsucks #fatigue #thestruggle #spoonielife #invisibleillness #chronicpain #chronicillness #fibromyalgiaawareness #fibromyalgiajourney #spoonieawareness #spooniestrong #spoonieproblems #spooniesisterhood #butyoudontlooksick
Visualizations are a POWERFUL practice to help grow new neural pathways of healing. Have you ever done visualizations? 💭✨ 🌿Luke + Lauren @flourish_therapy . . . . quote: @drjoedispenza 🤍 . #traumahealing #brainretraining #rewirethebrain #itstimetoheal #drsarno #retrainyourbrain #healyourself #limbicsystemretraining #chronicfatiguesyndrome #neuroscience #neuroplasticpain #neuroplasticity #cptsd #chronicillnessawareness #whenthebodysaysno #nervoussystemregulation #rewireyourbrain #visualizations #spoonieawareness #neuropsychology #neurobiology #painscience #interpersonalneurobiology #neuroplasticitytraining #chronicpainrelief #whenthebodysaysno #myalgicencephalomyelitis #fibromyalgia #mindbodymedicine #flourishtherapy
MAY VIRTUAL PROGRAMMING! Upopolis is hosting a: 💙 A fun games night for all Upopolis members 💙 UMeet for all Upopolis members, which takes a more therapeutic focus Grief Island is hosting: 💙 A grief group for youth wanting to meet others who are grieving - you do not have to be a Upopolis member to join! 💙 An info session for those who want to learn more about our Grief Island - caregivers and professionals are welcome! Please share this with your networks and DM us if you have questions about any of the programming sessions or for the Zoom log in information. . . . . . . . #grief #griefawareness #griefsupport #griefjourney #chronicillness #chronicillnessawareness #spoonie #spooniecommunity #spoonieawareness #spoonielife #medicalillness #scoliosis #scoliosissupport #scoliosisawareness #palliativecare #hospice
A few things that may be helpful and unhelpful for you during flare-ups ❤️🩹 This journey is often not predictable, especially when we consider flare-ups. Flare-ups can leave us feeling helpless, they can bring up grief, and they can make us feel more isolated, especially if people around us don’t understand. We want to help empower you to find a few things that can help you so you can prepare for flare-ups proactively. Everything on these lists may not apply to you, and there may be things you don’t yet have access to (like a supportive medical team or medications that help) so we want to speak to this and make space for how difficult it might be. The goal is that with more awareness efforts, all of these helpful pieces will be available for those in need. You all deserve to feel empowered and have access to what can help you feel more empowered, even through flare-ups! ❤️❤️ #chronicillness #chronicillnessawareness #chronicillnesswarrior #chronicillnesslife #chronicillnesscommunity #potsawareness #potssyndrome #posturalorthostatictachycardiasyndrome #potsie #potsielife #potsiestrong #dysautonomia #dysautonomiaawareness #spoonie #spoonielife #spooniesupport #spoonieawareness #community #support #awareness #flareups #empowerment #empowered #selfcare #warrior
What is POTS? A little bit about the condition that I, and so many others live with every single day🤍 #pots #spoonie #spoonielife #potsdisease #potsie #potssyndrome #spoonieawareness #postualorthostatictachycardiasyndrome
How little research into our lives! I hope to change this though! [image transcription] an infographic entitled research into costochondritis. A screenshot of the pubmed search engine is included showing how only 9 clinical trial publications have been published ranging from 1973 to 2023. This shows how basically no research into costochondritis has been published! Only 9 clinical trials have been published on Pubmed (one of the largest free scientific databases). For comparison, over 19,700 clinical trials have been published looking at arthritis (another chronic condition associated with inflammatory pain). More research into costochondritis is desperately needed! #costochondritislife #costochondritissurvivor #costochondritis #costochondritisflareup #chronicillnessfighter #chronicillnessadvocate #chronicillnessawareness #chronicillnesswarrior #spoonieawareness #spoonieprobs #spooniewarrior #spoonieadvocate #spooniepower #spooniefacts #medicalresearch
🌟 Thrilled to see our passionate community using the OMF Social Media Toolkit to amplify our MayMomentum campaign. To download graphics for Facebook, Twitter, and Instagram 👉 visit the link in our bio Repost: @yourstorymentor This month, I am once again proud to support Open Medicine Foundation (@openmedf)’s annual May Momentum Campaign to raise awareness for ME/CFS and funds for biological research into it. 💔As lots of you know, I have been ill from ME/CFS since 2001, an illness so misunderstood and its patients so mistreated that we still need to spread all the awareness we can. 🧪So 2 years ago when I was sick for 20 years - with still no test, treatment or cure, but the same amount of medical abuse & gaslighting - I raised funds for Open Medicine Foundation who support research into the illness which affects millions. I raised a brilliant $600! ❤️🩹In recognition of May as ME/CFS Awareness Month, OMF once more launches its amazing annual campaign to increase awareness of ME/CFS, Long COVID, and related multi-system chronic complex diseases (msCCD) and to raise funds to accelerate needed research to finally give us a chance as a healthy, normal life. 💔In the words of OMF: “Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a devastating and complex disease that can present as an array of life-altering symptoms that may change over time and differ from patient to patient. Millions more are now at risk with #LongCOVID. 🔎“There are also no diagnostic tests or treatments available for ME/CFS. OMF seeks to change this by supporting medical education and research to find effective treatments.” 💞Please join me by supporting OMF and May Momentum through visiting OMF’s May Momentum webpage to discover the support option that suits you best: https://ow.ly/qnpn50Ru8n9. Thank you so much for your ongoing support!🤗💙 x Sandra #mecfs #omf #maymomentum #meawarenessmonth #meawareness #mecfsawareness #mecfsawareness #mecfsawarenessmonth #mecfslife #spoonie #spoonielife #spoonieawareness #spoonieentrepreneur #spooniewriter
🌟 Thrilled to see our passionate community using the OMF Social Media Toolkit to amplify our MayMomentum campaign. To download graphics for Facebook, Twitter, and Instagram 👉 visit the link in our bio Repost: @yourstorymentor This month, I am once again proud to support Open Medicine Foundation (@openmedf)’s annual May Momentum Campaign to raise awareness for ME/CFS and funds for biological research into it. 💔As lots of you know, I have been ill from ME/CFS since 2001, an illness so misunderstood and its patients so mistreated that we still need to spread all the awareness we can. 🧪So 2 years ago when I was sick for 20 years - with still no test, treatment or cure, but the same amount of medical abuse & gaslighting - I raised funds for Open Medicine Foundation who support research into the illness which affects millions. I raised a brilliant $600! ❤️🩹In recognition of May as ME/CFS Awareness Month, OMF once more launches its amazing annual campaign to increase awareness of ME/CFS, Long COVID, and related multi-system chronic complex diseases (msCCD) and to raise funds to accelerate needed research to finally give us a chance as a healthy, normal life. 💔In the words of OMF: “Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a devastating and complex disease that can present as an array of life-altering symptoms that may change over time and differ from patient to patient. Millions more are now at risk with #LongCOVID. 🔎“There are also no diagnostic tests or treatments available for ME/CFS. OMF seeks to change this by supporting medical education and research to find effective treatments.” 💞Please join me by supporting OMF and May Momentum through visiting OMF’s May Momentum webpage to discover the support option that suits you best: https://ow.ly/qnpn50Ru8n9. Thank you so much for your ongoing support!🤗💙 x Sandra #mecfs #omf #maymomentum #meawarenessmonth #meawareness #mecfsawareness #mecfsawareness #mecfsawarenessmonth #mecfslife #spoonie #spoonielife #spoonieawareness #spoonieentrepreneur #spooniewriter
This month, I am once again proud to support Open Medicine Foundation (@openmedf)’s annual May Momentum Campaign to raise awareness for ME/CFS and funds for biological research into it. 💔As lots of you know, I have been ill from ME/CFS since 2001, an illness so misunderstood and its patients so mistreated that we still need to spread all the awareness we can. 🧪So 2 years ago when I was sick for 20 years - with still no test, treatment or cure, but the same amount of medical abuse & gaslighting - I raised funds for Open Medicine Foundation who support research into the illness which affects millions. I raised a brilliant $600! ❤️🩹In recognition of May as ME/CFS Awareness Month, OMF once more launches its amazing annual campaign to increase awareness of ME/CFS, Long COVID, and related multi-system chronic complex diseases (msCCD) and to raise funds to accelerate needed research to finally give us a chance as a healthy, normal life. 💔In the words of OMF: “Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS) is a devastating and complex disease that can present as an array of life-altering symptoms that may change over time and differ from patient to patient. Millions more are now at risk with #LongCOVID. 🔎“There are also no diagnostic tests or treatments available for ME/CFS. OMF seeks to change this by supporting medical education and research to find effective treatments.” 💞Please join me by supporting OMF and May Momentum through visiting OMF’s May Momentum webpage to discover the support option that suits you best: omf.ngo/maymomentum. Thank you so much for your ongoing support!🤗💙 x Sandra #mecfs #omf #maymomentum #meawarenessmonth #meawareness #mecfsawareness #mecfsawareness #mecfsawarenessmonth #mecfslife #spoonie #spoonielife #spoonieawareness #spoonieentrepreneur #spooniewriter
While the above is true ⬆️, it's important to remember that for most experiences, the emotions we're feeling are completely normal 💙 . . . . . . . #chronicillness #medicalillness #healthcare #healthjourney #spoonie #spooniecommunity #spoonieawareness #chronicillnessawareness #childlife #childlifespecialist #childlifespecialists #emotions #mentalhealth
Time keeps passing bye, here’s why!😏 . . . . . . . . . . Photo credit📸 @lupustrust #knowlupus #lupusfact #lupusawareness #lupus #lupusawareness #lupuswarrior #spoonieawareness #invisibleillness #chronicillnessproblems #chronicillness #lupuslife #lupusfighter #lupussucks #lupussupport #youdontlooksick #autoimmunedisease #methotrexate #spoonies #arthritis #degenerativediscdisease #lupusmom #chronicpainwarrior #purpleforlupus #lupusfacts #lifewithlupus
The results from this small trial did show some benefits but more research is needed before these can actually be recommended. Still a supplement is always worth a try isn't it? 😊 The papers I read can be found here: 1) https://pubmed.ncbi.nlm.nih.gov/34444817/ 2) Clinical Evidence for Q10 Coenzyme Supplementation in Heart Failure: From Energetics to Functional Improvement - PMC (nih.gov) [image transcription] an infographic entitled managing fatigue in ME patients with coQ10 and NADH supplementation. A picture is included to show how coenzyme Q10 and NADH are associated with increased sleep quality, improved concentration and increased feelings of health plus decreased damage caused by activity, decreased inflammation, decreased fatigue severity. These supplements have been shown to be beneficial for many chronic conditions including heart failure but they hadn’t been tested in ME patients before. The results showed some positive benefits of the supplements. These supplements are antioxidants and it has been shown in ME that oxidative damage tends to be higher so there’s good reasons why the supplements were expected to help patients. Hashtags: #chronicillnessinfo #chronicillnessfacts #spooniescience #spoonielife #myalgicencephelomyelitis #meawareness #cfsawareness #spoonieawareness #mewarrior #cfswarrior
1. Went to the flower fields with my mama! 2. Made a dress for my school dance and it turned out so pretty! 3. Work has been so fun lately and I’m so happy to be doing something I love. 4. I went to a senior dinner and it was so fun to dress up in a pretty dress. 5. I’ve been to the beach a few times lately and it’s my favorite place ever! 6. My lil group of friends at school are my favorite ever 🫶🏻 we’re graduating so it’s bittersweet. 7. My family! 8. I went to San Diego for the weekend for my friends bachelorette and it was such a sweet time. 9. I played soccer, it was so fun to do something I used to love so much. Living with a chronic illness has taught me a lot of things and one of the most important things it’s has taught me is to look for happiness everywhere. Even if it’s in little things! #happyhannah #spoonie #spoonielife #spooniewarrior #spoonieawareness #chronic #chronicillnesslife #chronicillnessawareness
Excerpt: “Popular culture plays an enormous part in our lives, and in our upbringing, and in how we view ourselves in this world. “Think of the kids who watched CODA and saw themselves featured on the big screen. Black kids who watched Chadwick Boseman be a superhero. The belief in yourself that stories can provide is immeasurable. “Those of us with chronic illness deserve this as well.” Read the rest of my blog on my website: yourstorymentor.com/category/blog or click the link in my bio or Story. ✍️🥄 x Sandra #writing #blog #nonfiction #nonfic #blogpost #blogging #writer #writer #writerslife #representation #inclusion #diversity #spoonielife #spoonieawareness #chonicillness #invisibleillness
It just ain't gonna happen y'all. 🌿Lauren + Luke @flourish_therapy . . . . #traumahealing #brainretraining #rewirethebrain #itstimetoheal #selfhealers #cptsd #chronicpainrelief #chronicillnessawareness #DNRS #spoonieawareness #holisticmentalhealth #traumarecovery #chronicpainrelief #chronicillnessawareness #painfree #painscience #foodismedicine #retrainyourbrain #healyourself #limbicsystemretraining #vagusnerve #neuroscience #neuroplasticpain #neuroplasticity #nervoussystemregulation #neuroplasticitytraining #whenthebodysaysno #mindbodymedicine #flourishtherapy
People who feel that their grief goes unnoticed or unvalidated are experiencing disenfranchised grief. This grief can come as a result of a loss in life that has NOTHING to do with a death. People with chronic or medical illnesses and their families experience disenfranchised grief during their journey. Share this post to spread awareness about #disenfranchisedgrief ! Some examples: Loss of your 'normal' life before the illness Loss of mobility and health Loss of a loved one experiencing mental health issues Loss of your home, your comfort place Loss of relationships Loss of freedom What other losses have you felt? . . . . . . . #chronicillness #medicalillness #healthcare #healthjourney #spoonie #spooniecommunity #spoonieawareness #chronicillnessawareness #childlife #childlifespecialist #childlifespecialists
there's girl math and then there's chronic illness math. I have an event in two weeks so I should start preparing this weekend 😂😭 how early in advance to you prep for an event? 👇 #spoonie #chronicillness #invisibleillness #invisibleillnessawareness #girlmath #spoonieawareness #chronicillnesshumor #disabilityawareness #pots #ibd #instalike #fyp
Nothing better than making jewelry that has meaning behind it. Chevere taught a class creating spoon bracelets for IBD awareness. It was a great class with some amazing people. Why a spoon? Have you ever heard of the spoonie theory? Each day you start off with 12 spoons. Each activity uses up a certain amount of spoons. With chronic illnesses the amount of spoons vary but in the end as a spoonie you run out of spoons a lot sooner than someone healthy. Are you a spoonie ? Comment below Please share to raise awareness for #ibd and #spoonies... . • #spoonie #spooniesisterhood #spoonieawareness #ibd #ibdawareness #spoonjewelry #jewelryclasses #create #handmadejewelry #spreadawareness #uxbridgema #shopchevere
Multiple Sclerosis Awareness is so important. Spreading for MS Awareness and Understanding Not For Pity or Attention. I am also following other autoimmune diseases to educate myself and others. #livingwithacronicillness #raiseawareness #spreadtheword #chronicillnessawareness #invisibleillnessawareness #disabilityawareness #spoonieawareness #disabledlife #disabledlivesmatter #chronicillnessproblems #chronicillnessandme #disabledinstagram #invisibleillness #invisabledisability #livingwithms #mssucks #fums #spoonies #spoonielife #msawarenessweek #msawareness #msactivist #msadvocate
✨Raising Awareness Is Not Attention Seeking✨ In this last year THE most important thing I’ve found myself doing is #raisingawareness It is vitally important especially because I have #myalgicencephalomyelitis #mecfs is an illness which is rife with #misinformation It is one of many #stigmatizedillnesses and THAT is why raising awareness is so important. Myself and many many others on here are trying to change this. And it’s not just M.E there’s so many #chronicillnesses that are misunderstood or people just flat out believe don’t exist ie. #longcovid #endometriosis etc etc What we are not doing however is #attentionseeking What the average healthy person that thinks this is attention seeking doesn’t understand is what it is like to live with an illness that the wider public doesn’t believe in. They don’t understand a life filled with #medicalgaslighting regular gaslighting, pain and suffering. To absolutely know it is real but nobody believes you. If they did maybe they wouldn’t say we’re #attentionseekers #education is key in these matters and that is what raising awareness is, it’s education. So I’ll keep doing what I’m doing regardless of whether I’m called an attention seeker or not. Don’t ever let people make you feel guilty or wrong for spreading awareness of millions of people’s everyday reality. 🩵💙love and positive vibes🩵💙 #awareness #raiseawareness #spreadtheword #chronicillnessawareness #myalgicencephalomyelitisawareness #invisibleillnessawareness #disabilityawareness #mecfsawareness #spoonieawareness #butyoudontlooksick #mecfslife #disabledlife #disabledlivesmatter #chronicillnessproblems #chronicillnessandme #disabledinstagram #severeme #stoprestpace
This research was able to show that the mental health issues were related more to the experiences with doctors rather than with the condition itself. This is obviously very interesting and highlights what needs to change in hospitals! [image transcription] an infographic entitled recent research linking doctors attitudes to chronic pain with the depression many people living with chronic pain feel. A diagram illustrating this concept is included showing how the lack of pain validation leads to a threat to self-identity, increased stress, reduced support and exacerbated pain. These all reduce the coping responses and lead to depression. Pain invalidation (e.g., having pain discounted) is a risk factor for depression among people with chronic pain, but the mechanisms underlying this remain unclear. It is thought that shame may have a role in this. This diagram was aiming to emphasise the importance of validating a patient’s pain to doctors. The study behind this diagram did demonstrate that any disbelief by doctors did worsen the pain felt by the patients and promote depression. Hashtags: #chronicpainwarrior #chronicpain #chronicpainsupport #chronicpainsurvivor #chronicpainawareness #chronicpainprobs #chronicillnessfighter #crpswarrior #edswarrior #migrainewarrior #chronicillnessadvocate #chronicillnessawareness #spoonieprobs #spoonieproblems #spoonieawareness #spoonieadvocate #medicalgaslighting #baddoctors #painawareness #painprobs #painproblems
When you're having a bad flare day, what is the one thing that helps distract you?? Oh I am very curious and I want to know. Comment below. Much Love Stay Safe Natasha #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiacanada #fibromyalgiacommunity #fibromyalgiawarrior #fibromyalgiafighter #fibromyalgiasupport #fibromyalgiarelief #fibromyalgiamom #fibro #fibrolife #spoonie #spoonieawareness #spoonieadvocate #spooniecommunity #spooniesupport #spooniewarrior #spooniecanada #spoonielife #spooniehelp #chronicillness #chronic #chronicpain #chronicpainwarrior #chronicpaincanada #invisibleillness #invisibleillnessawareness #butyoudontlooksick #youdontlooksick
My wrinkles are beautiful. That’s all. That’s the tweet. #wrinkles #aging #almost30 #chronicillness #donaldduck #disneybound #spoonie #chronicillnessawareness #spoonielife #spooniewarrior #pots #potsie #potswarrior #spoonieawareness #spoontheory #chronicpain #chronicpainwarrior #cfs #longcovid
Often a problematic misunderstanding is that feeling tired after a busy day is the same as the fatigue that someone with a chronic illness or disability feels almost all the time. [image transcription] an infographic entitled explaining chronic fatigue. People when they hear “chronic fatigue” often wrongly interpret that as being dramatic about feeling tired. I want to try to illustrate the difference between them here: Tiredness is something we all feel when we use up our energy but it can easily be sorted by resting. Tiredness isn’t purely physical as it can be overcome when needed. Tiredness is often felt by the body but with the mind. As it gets dark we are usually conditioned to go to bed and we feel tired because we expect to combined with the resulting energy depletion in our bodies. Fatigue is something that is really only felt by people experiencing chronic health conditions ranging in severity. It is associated with not just energy depletion but an energy debt which doesn’t usually occur in a healthy body. This is felt in almost every cell in the body so is a more intense whole body experience. Fatigue can not be improved by resting. Hashtags: #chronicfatuige #chronicfatigueawareness #chronicillnessandme #chronicillnessadvocacy #chronicillnessfighter #chronicillnesssucks #chronicillnessawareness #chronicillnesswarrior #spoonieadvocate #spoonieawareness #spooniewarrior #spoonielife #spoonieprobs #spoonieproblem #spoonieproblems #meawareness #edsawareness #potsawareness #endoawareness #msawareness #fatigueawareness
Calling all youth with cystic fibrosis! We're so excited to announce our incredible partnership with @cfcanada for Camp Fromaway. They're joining us and @welovecampmapleleaf to offer Canadian youth aged 11-17 years living with CF a virtual camp experience! Hosted over 5 days, from July 8-12, campers can meet each other virtually while participating in fun camp activities daily from 12-2pm EST on Zoom! Click the #linkinbio for the Camp Fromaway application, or e-mail [email protected] for digital posters to give to the youth you work with. . . . . . . . #summercamp #cysticfibrosis #chronicillness #spoonie #spooniecommunity #CF #cysticfibrosisawareness #cysticfibrosissupport #childlife #childlifespecialist #childlifespecialists #teacher #teacherlife #spoonieawareness
My mobility aids 🧂🧚🏻♀️💫👩🏻🦽➡️ To be honest, I still struggle to be seen using these, but they do really help. Ever since I started using them, my everyday life has improved significantly, and I no longer crash so hard that I have to spend over a week in bed after simple activities like going to the supermarket. #chronic #chronicillness #dysautonomiaawareness #dysautonomia #pots #potsies #autism #autistic #ed #recovery #chronicallyill #chronicillnesses #chronic #bulimiafighter #eatingdisorderrecovery #eatingdisorderawareness #figureskating #dressage #recoveryjourney #potsielife #mecfs #chronicfatiguerecovery #mobilityaidsarefreedom #mobilityaiduser #mobilityaids #potsfighter #potsawareness #spoonie #spoonieawareness
But you don't look sick. 🤦♀️ You also don't look like a moron but that's not here or there. 🤷♀️ I deal with so many chronic illnesses, mental illnesses, and literally everything in between! I have a shorter list of what is not wrong with me then what is wrong with me. So excuse me that I like to dress up and look nice to make myself feel good. I can't fix your stupid, but I can make myself feel good. So why not? Please show me where the rule is, that people with chronic illnesses and mental health and everything in between, have to look like we're ill all the time.... 24/7? If me dressing up and putting on makeup makes me feel good why does I bother you so much? Much Love Stay Safe Natasha #mentalhealth #mentalhealthadvocate #mentalhealthawereness #mentalhealthjourney #mentalhealthcommunity #mentalhealthcanada #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiacanada #fibromyalgiacommunity #fibromyalgiasupport #spoonie #spoonieawareness #spoonielife #spooniecanada #spooniecommunity #myofacialpain #raynauds #costochondritis #ibs #invisiblepain #butyoudontlooksick #youdontlooksick #lordosis #scoliosisfighter #heds #anemic #restlesslegsyndrome #nervedamage
APRIL VIRTUAL PROGRAMMING! Upopolis is hosting a: 💙 New User Social for all new members 💙 A fun games night for all Upopolis members 💙 UMeet for all Upopolis members, which takes a more therapeutic focus Grief Island is hosting: 💙 A grief group for youth wanting to meet others who are grieving - you do not have to be a Upopolis member to join! 💙 An info session for those who want to learn more about our Grief Island - caregivers and professionals are welcome! Please share this with your networks and DM us if you have questions about any of the programming sessions or for the Zoom log in information. . . . . . . . #grief #griefawareness #griefsupport #griefjourney #chronicillness #chronicillnessawareness #spoonie #spooniecommunity #spoonieawareness #spoonielife #medicalillness #scoliosis #scoliosissupport #scoliosisawareness #palliativecare #hospice
Let's be real! We pay for those days, but we won't tell you that. We keep it a secret. But why? Why don't we be real and talk about how those days affect us? We get criticized all the time for complaining about her pain. Maybe that is why! Much Love Stay Safe Natasha #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiacommunity #fibromyalgiacanada #fibromyalgiajourney #fibromyalgiajourney #fibromyalgiawarrior #fibromyalgiafighter #fibromyalgiamom #fibromyalgiastrong #fibrostrong #spoonie #spoonielife #spoonieawareness #spooniestrong #spooniecanada #spooniecommunity #spooniesupport #spooniewarrior #chronicillness #chronicillnessawareness #chronicillnesshumor #chronicpain #chronicpaincanada #youngandsick #butyoudontlooksick #invisibleillness #invisiblepain #fibro
Breaking down more common myths that continue to circulate and impact the access to care and quality of care that POTSies may receive. Pushing through symptoms is not helpful for those in our community, but a mentality that pushing through will make us “strong” persists and can lead to a lack of needed accommodations and rest; as a result, there may be times when we don’t feel we have a choice or alternative. Long diagnostic delays do continue to cause harm, and POTS is not as challenging to diagnose as many providers may have been led to believe or experience when practicing, as it is very possible that they have not had access to needed education. This is where awareness, education, and compassion all become critical - they have the power to change how individuals in our community are treated, their access to care, and their quality of life. We do need to mention that it doesn’t end here, as these changes are needed for individuals living with many different chronic conditions. ❤️ #chronicillness #chronicillnessawareness #chronicillnesssupport #chronicillnessfighter #potsawareness #potssyndrome #potsie #potsielife #potsiestrong #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #spoonie #spoonielife #spooniesupport #spoonieawareness #support #awareness #education #change #a4p #invisibleillness #invisibledisability
#chronicillness #chronicillnesslife #chronicloveclub #chronicloveclub #chronicillnessblogger #chronicallyill #chronicallysick #spooniememe #spooniewarrior #spoonieblogger #spoonie #spoonieprobs #spoonies #spooniestrong #spooniesupport #spooniehumor #spoonieawareness #spooniememes #spoonielife #spooniecommunity
Let’s talk about blood pooling today, one of the visible signs that many in our community notice when navigating POTS. How visible our blood pooling is can vary, so this may not be relevant for everyone in our community and we do want to acknowledge this and make space for this. ❤️ For those of you who are able to see signs of blood pooling in your legs/feet/hands - do you notice that it worsens when you are flaring, and improves when your symptoms are under better control? Since POTS is a syndrome, we may gradually find that other conditions individuals with POTS have impact their blood pooling, and we may notice that the origin of blood pooling for our community varies. There is still quite a lot that we don’t understand or know! Share below if you are comfortable ❤️❤️ #chronicillnessawareness #chronicillnesssupport #chronicillness #chronicillnessawareness #potsawareness #potssyndrome #potsie #potsielife #potsiestrong #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiawarrior #dysautonomiaawareness #spoonie #spoonielife #spooniesupport #spooniecommunity #spoonieawareness
My first non chocolate Easter since we figured out chocolate is a pain trigger for my fibromyalgia. Family has some clever alternatives. These are both things I love and it never occurred to me that raffaellos aren't actually chocolate. Now to cross my fingers and hope excess sugar doesn't do me in 🤣 that box of Turkish delight is half done already 🫣 #fibromyalgia #painsucks #fatigue #thestruggle #spoonielife #invisibleillness #chronicpain #chronicillness #fibromyalgiaawareness #fibromyalgiajourney #spoonieawareness #spooniestrong #spoonieproblems #butyoudontlooksick #paintriggers
Let’s talk about blood pooling today, one of the visible signs that many in our community notice when navigating POTS. How visible our blood pooling is can vary, so this may not be relevant for everyone in our community and we do want to acknowledge this and make space for this. ❤️ For those of you who are able to see signs of blood pooling in your legs/feet/hands - do you notice that it worsens when you are flaring, and improves when your symptoms are under better control? Since POTS is a syndrome, we may gradually find that other conditions individuals with POTS have impact their blood pooling, and we may notice that the origin of blood pooling for our community varies. There is still quite a lot that we don’t understand or know! Share below if you are comfortable ❤️❤️ #chronicillnessawareness #chronicillnesssupport #chronicillness #chronicillnessawareness #potsawareness #potssyndrome #potsie #potsielife #potsiestrong #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiawarrior #dysautonomiaawareness #spoonie #spoonielife #spooniesupport #spooniecommunity #spoonieawareness
#gastroparesiswarrior #gastroparesisawareness #gastroparesis #gastroparesisfighter #spoonieawareness
Who else feels like " this is home,but gives me anxiety?" hospitals lately give me the worst anxiety attacks ever! They started roughly 3 years ago. I sweat an belch so bad. Anyone else considers this a second home even though we may not agree. I wish they would find a cure or the proper treatments so we don't have to call hospitals our second home. #gastroparesiswarrior #gastroparesisawareness #gastroparesis #spoonieawareness
chronic pain ages your body and messes with your mind. #invisibleillness #chronicpainawareness #chronicpain #chronicpainsupport #chronicpainproblems #chronicpainlife #chronicillnesslife #chronicillness #chronicillnessproblems #painlife #chronicillnesscommunity #rarediseases #trigeminalneuralgia #facialpainawareness #chronicfatigue #spoonie #spoonielife #spoonieproblems #spooniecommunity #spoonieawareness #ehlersdanlossyndrome
📢 Don't forget!!! 📢 Spoonie support is all over the 'net!! Check out all our links at linktr.ee/SpoonieSupportNetwork/ (link in bio) #spooniememe #spooniewarrior #spoonieentrepreneur #spoonieblogger #spoonie #spooniesister #spoonies #spooniestrong #spooniesupport #spooniebusiness #spoonieawareness #spooniefamily #spoonielife #spoonieadvocate #spooniememes #spoonieentrepuer #spooniecommunity #spooniesisters
Person of the day: @endometriosisem ! I really love following her because not only does she post a ton of informative content about Endometriosis but also her content about what it is like living with Endometriosis. I HIGHLY recommend following her. . . . #endo #endowillnotwin #endodoesnotdiscriminate #endowarrior #endostrong🎗 #endoawareness #endoawarenessmonth #endometriosis #endometriosisawareness #endometriosisawarenessmonth #invisiblewomen #invisibleillnesswarrior #invisibleillness #invisibledisability #chronicpainwarrior #chronicillnessawareness #chronicpainawareness #spoonie #spoonieawareness #spoonielife #spooniesupport #spooniesofinstagram
Your pain IS real! #endo #endowillnotwin #endowarrior #endohasnocure #endostrong🎗 #endowarrior #endoawareness #endoawarenessmonth #endometriosis #endometriosisawareness #endometriosisawarenessmonth #spoonie #spoonieawareness #spooniesupport #chronicpainwarrior #chronicillnessawareness #chronicpainawareness #invisibleillness #invisibledisability #invisibledisabilityawareness
Person of the day: @chrissy_eucatastrophe12 ! I recently found her page and honestly, I am so happy I did. Her page is INCREDIBLE! I learn a lot about Endometriosis through her. . . . #endo #endowillnotwin #endodoesnotdiscriminate #endostrong🎗 #endoawareness #endoawarenessmonth #endometriosis #endometriosisawareness #endometriosisawarenessmonth #chronicpainwarrior #chronicillnessawareness #chronicpainawareness #chronicallyawesome #spoonie #spoonieawareness #spoonielife #spooniesupport #spooniewarrior #spooniecommunity #spooniesisters #spoonieproblems #chronicpainwarrior #chronicillnessawareness #chronicpainrelief #chronicillnesssupport #invisibleillness #invisibledisability #invisibleillnessawareness #disability #disabilityawareness
Some amazing person posted this video to an EDS group. It explains pots EDS(relevant to Marfans as well) and the nervous system - the relatedness to ‘anxiety’ which is set off from the physiological condition. https://m.youtube.com/watch?v=Cm16Hryi6eE&pp=ygULRHIgYm9vbiBlZHM%3D . . . . #ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlos #marfansyndrome #connectivetissuedisorder #connectivetissuedisease #pots #spoonie #spooniesupport #spooniewarrior #spoonieawareness #spooniecommunity #spoonieproblems #dysautonomia #dysautonomiaawareness #dysautonomiainternational #potsawareness
Person of the day: @the_endo_funnies ! One of my FAVORITE accounts ever. This account is so relatable but also so funny. I highly recommend following her account. . . #endo #endowillnotwin #endowarrior #endostrong🎗 #endoawareness #endoawarenessmonth #endowarriors #endometriosis #endometriosisawareness #endometriosisawarenessmonth #spoonie #spoonieawareness #spoonie #spoonielife #spooniesupport #spooniecommunity #spooniewarrior #spoonieproblems #chronicpainwarrior #chronicillnessawareness #chronicpainawareness #chronicillnesshumor #invisibleillness #invisibledisability #invisibleillnessawareness #disability #disabilityawareness
@spoonie_village #spooniememe #spooniewarrior #spoonies #spooniestrong #spoonies #spooniesupport #spoonielife #spoonieawareness
Am I the only one that goes through these? . . #endo #endowillnotwin #endowarrior #endodoesnotdiscriminate #endohasnocure #endostrong🎗 #endoawareness #endoawarenessmonth #endometriosis #endometriosisawareness #endoawarenessmonth #invisibleillness #invisibledisability #invisibleillnessawareness #disability #disabilityawareness #spoonie #spoonieawareness #spoonielife #spooniesupport #spooniecommunity #spooniewarrior #spoonieproblems #disabilityawareness #disabilityrightsarehumanrights #disability
Hurry, registration closes April 30! Camp Maple Leaf and Upopolis are teaming up to provide youth living with cystic fibrosis from all across Canada the opportunity to participate in our virtual camp week! E-mail [email protected] or DM us to get your hands on a digital poster that can be printed for, or e-mailed to, the families you work with. . . . . . . . #summercamp #cysticfibrosis #chronicillness #spoonie #spooniecommunity #CF #cysticfibrosisawareness #cysticfibrosissupport #childlife #childlifespecialist #childlifespecialists #teacher #teacherlife #spoonieawareness
In and out of fibro- flares lately, and my nails are starting to take a hit. Trimmed them back, and hopefully, the nail polish will help them grow back 🤷🏼♀️ They're really flakey and splintering again, so I'll have to get back into the Collagen, too. Apparently, they'll keep cycling like this with my symptoms and flares 🥺🙄 #fibromyalgia #flaredays #painsucks #fatigue #thestruggle #spoonielife #invisibleillness #chronicpain #chronicillness #fibromyalgiaawareness #fibromyalgiajourney #spoonieawareness #spooniestrong #spoonieproblems #spooniesisterhood #butyoudontlooksick
PERSON OF THE DAY: @letstalkperiodau ! This was one of the very first accounts I followed when I decided to make my spoonie account. If you want to follow someone who is extremely educated about Endometriosis but also is sweet and kind and empowering, follow @letstalkperiodau . . . #endo #endowillnotwin #endodoesnotdiscriminate #endowarrior #endostrong🎗 #endometriosis #endoawareness #endoawarenessmonth #endometriosis #endometriosisawareness #endometriosisawarenessmonth #spoonie #spooniesupport #spoonieawareness #spoonieproblems #spooniecommunity #endocommunity #spooniewarrior #spooniefamily #chronicillnessawareness #chronicpainwarrior #chronicpainawareness #chronicillnesssupport #invisibleillnessawareness #invisibleillness #invisibledisability #disabilityrights #disabilityawareness #disability
As we work to spread awareness, shatter stigmas, and help POTSies receive the support and care they deserve, we will continue to hit roadblocks. Many of these roadblocks have been built through years of myths and dismissal, so it is going to take time to pave new paths, but we will not stop fighting for change! Although we are highlighting many of the challenges that POTSies can find themselves facing on the second page of this post, we want to emphasize how hopeful we are. We believe that change is happening and will make living with POTS much more manageable. We believe that a lot of work still needs to be done, but we are hopeful that POTSies around the world will one day have access to the care they need and medications they need that will make living with POTS easier and feel more manageable. Change is happening. ❤️ #chronicillness #chronicillnessawareness #chronicillnesscommunity #chronicillnesssupport #potsawareness #potssyndrome #posturalorthostatictachycardiasyndrome #dysautonomia #dysautonomiaawareness #potsie #potsielife #potsiesupport #spoonie #spoonielife #spooniesupport #spoonieawareness #awareness #community #pots #visibility #visibilitymatters #understanding #support #change
I'm sure we can all relate to this 😂🤦♀️ The joys of Fibro and Chronic Pain Tag someone who can relate! Much Love Stay Safe Natasha #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiawarrior #fibromyalgiacanada #fibromyalgiacommunity #fibromyalgiaeducation #fibromyalgiafighter #fibromyalgiasupport #fibromyalgiamom #spoonie #spoonielife #spoonieawareness #spooniestrong #spooniecommunity #spooniecanada #chronicpain #chronicpainawareness #chronicpaincanada #chronicpaincommunity #butyoudontlooksick #youdontlooksick #invisiblepain #invisibleillness #invisibleillnessawareness
#spoontheory #spooniestrong #spooniesupport #spooniebusiness #spooniewarrior #spoonielife #spoonieadvocate #spoonieawareness #chronicillnessblogger #chronicillnesssupport #chronicillness #chronicallyill #chronicallysick #letstalk #imhereforyou #isupportyou #itsokaynottobeokay #itsokaytonotbeokay #itsoknottobeok #itsoktocry #mentalhealthsupport #mentalhealthadvocate #mentalhealthawareness #mentalillnessawareness #disabledentrepreneur #disabilityawareness
I'm at reformer for a 3rd day in a row and feeling more #fibrofit than usual. The difference? I've not been at or thought about work in over a week. Coincidence? I think not! I'm still in pain. I still have that broken glass feeling walking about, but it's easier to manage this week. #fibromyalgia #painsucks #fatigue #thestruggle #spoonielife #invisibleillness #chronicpain #chronicillness #fibromyalgiaawareness #fibromyalgiajourney #spoonieawareness #spooniestrong #spoonieproblems #spooniesisterhood #butyoudontlooksick #reformerpilates
*** This is not mine!!! *** couldn't find original source! It was just too good not to share. Don't forget to do your Yoga! Much Love Stay Safe Natasha #fibromyalgia #fibromyalgiaawareness #fibromyalgiaadvocate #fibromyalgiacommunity #fibromyalgiacanada #fibromyalgiajourney #fibromyalgiajourney #fibromyalgiawarrior #fibromyalgiafighter #fibromyalgiamom #fibromyalgiastrong #fibrost #spoonie #spoonielife #spoonieawareness #spooniestrong #spooniecanada #spooniecommunity #spooniesupport #spooniewarrior #chronicillness #chronicillnessawareness #chronicillnesshumor #chronicpain #chronicpaincanada #youngandsick #butyoudontlooksick #invisibleillness #invisiblepain
MARCH VIRTUAL PROGRAMMING! Upopolis is hosting a: 💙 UMeet for all new members 💙 Games night for all Upopolis youth Grief Island is hosting: 💙 Grief groups for youth wanting to meet others who are grieving - you do not have to be a Upopolis member to join! 💙 An info session for those who want to learn more about our Grief Island - caregivers and professionals are welcome! Please share this with your networks and DM us if you have questions about any of the programming sessions or for the Zoom log in information. . . . . . . . #grief #griefawareness #griefsupport #griefjourney #chronicillness #chronicillnessawareness #spoonie #spooniecommunity #spoonieawareness #spoonielife #medicalillness #scoliosis #scoliosissupport #scoliosisawareness #palliativecare #hospice
Do I look like I’m in severe pain because I am? My spleen has been so painful recently. To think when I was 19, they tried to convince me weekly to have my spleen removed instead of trying Rituxan. However, now that it’s massive and painful, they won’t remove it. The doctors believe I’ll go into sepsis if they remove but also said it will eventually rupture. 🤦🏻♀️ So I just have to deal with the pain until it ruptures and then they will remove it. Sometimes I really feel like the doctors are letting me down. #chronicillnesses #chronicillnessawareness #chronicpainwarrior #chronicillnesssupport #chronicillnesscomunity #invisibleillness #invisibleillnesswarrior #invisibleillnessawareness #invisibleillnesssupport #invisibleillnesscommunity #spoonie #spoonieawareness #spooniesupport #spoonielife #spooniewarrior #spoiniecommunity #spoonieproblems #idontlooksick #itp #itpawareness #itpwarrior #evanssyndrome❤️ #evanssyndromefighter #evanssyndrome #evanssyndromeawareness
Your pain matters. Your pain is not defined by the stage of Endometriosis you have. No one knows why people’s pain is different but that is what makes this disease so hard to manage. . . #endo #endowarrior #endowillnotwin #endodoesnotdiscriminate #endowarrior #endohasnocure #endostrong🎗 #spoonie #spoonieawareness #spoonielife #spooniesupport #spooniecommunity #spoonieproblems #chronicpainwarrior #chronicillnessawareness #chronicpainrelief #invisibleillness #invisibleillnesswarrior #invisibledisability
The next amazing account I want to shout out is @gathererofspoons . . Jos was one of my first real spoonie friends and helped me when I was so so sick. They are kind, funny, informative and vulnerable. Their page is amazing and I think everyone should check them out. . . #spoonie #spoonieawareness #spooniesupport #spoonielife #spooniewarrior #spooniecommunity #endo #endowarrior #endodoesnotdiscriminate #endometriosis #endostrong🎗 #endoawarenessmonth #endoawareness