Day 16: best advice: trust yourself and your body, your symptoms are real, and if you are wondering if your faking, your probably not. Trust yourself, trust your body. Dig deeper if you need to, symptoms mean something is wrong, so figure out what it is, even if it's not what you want to hear. //Today I was diagnosed withMultifocal motor neuropathy and I'm terrified..#spoonie#dysautonomia #POTS#potssyndrome #dysautonomiaawareness #eds#ehl#ehlersdanlosrome #ehlersdanlos #chronicallyawesome #chronicallyill#chronicillness#spooniechristmaschallenge
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Soooo much nausea, hoping my meds kick in. Hands down migraines & nausea are the WORST. I think after dealing with 3yrs of stomach problems and constant vomiting & nausea then 9 months of more constant vomiting & nausea late last year/ this year....I just can't anymore with the nausea. I wish there was a daily medicine I could take to eradicate the nausea before it happens...... BUT at last I got things accomplished today before I crashed & burned. I should be able to get the kitchen & bathrooms cleaned tomorrow. #chronicnausea #allthenausea #screwnausea #chronicallyill #chronicallyannoyed #stillfeelingaccomplished #gotstuffdone #cleaning #cleaninghouse #crashedandburned
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Anybody want to read a book? I talk a lot on here about how I love throwing stuff out and keeping an organized home... join me in reading, "The Joy of Less" and you'll get a taste of what I'm so obsessed with. Xo Becky 💕 #whattheblau #forkyourspoons #notaspoonie #blau #arthritis #chronicallyill #autoimmune #autoimmunedisease #blausyndrome #joy
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FALLING DOWN... It’s a part of life kiddo, especially when you have hypermobility issues... *insert punchline sound effect* So then what’s with all these proverbs & sayings telling us all this “fall 7 times, get back up 8” hooey? Nope... well, actually yes... technically. Eventually... But when I get knocked down by life, after checking that nothing is dislocated (*one more punchline sound effect*), maybe I don’t particularly feel like getting back up right away. Sometimes it takes me a while. And that’s okay. On the whole I consider myself quite a positive person but when you’re having a shitty time, you’re having a goddam shitty time! No amount of ‘Susie Fucking Sunshine’ positive spin is going to change the fact that you just got face planted by life. So why do we, in general but especially in the chronic illness community, feel as though we need to be a-okay right away? To lessen the discomfort of those around us who witnessed us hit the deck? Bugger that. Stay down, take your time. Mope if you must. Hell, I’ve been known to throw some pretty super, mega, awesome, ABSOLUTELY RAGING, pity parties. Ugly cry & all. And then, when that’s out of your system, why not roll on over & look up... Look up from that deep, dark pit of despair & have a peek at the stars. Those little sparks of hope that flicker & shine from beyond your Den of Despondence™️. Summon the self care/support system of your choosing & let that light guide you right on out of the darkness, when you’re good & ready, baby. . 🧡✨🧡✨🧡✨🧡✨🧡✨🧡✨🧡✨🧡✨ . .
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. #ChronicPain #HiddenIllness #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #SpoonieLife #SpoonieStrong #SpoonieProblems #SpoonieSupport #SpreadAwareness #Fibromyalgia #FibroWarrior #InvisibleIllness #Disabled #InvisibleDisability #EhlersDanlos #RareDisease #RareIllness #RareDiseases #InvisibleDisease #ChronicallyFabulous #ChronicallyAwesome #Men#MentalHealthAwareness #MentalHealth #MentalHealthMatters #BreakTheStigma #EndTheStigma #StopTheStigma
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It’s official folks! Got the call, heart surgery is not happening!!! It’s a holiday miracle🙏🏻 There’s still some weird stuff my hearts doing, but apparently it’s stable enough to skip the surgery. #hea#heartery #robe #medicalgoodness #gown #mask #vogmask #cardiology #hos#hospitalselfie #hospital #chronicallyill #pots #dysautonomia #chronicallyfabulous #chronicillness #heart #surgery #sick #disabled #selfie #beautiful #strong #fight #warrior #invisibleillness
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Loving these decorations from @marksandspencer they're meant for the tree, but I think they look just as good by our photos, 3for2 so only cost me a tenner. Love my man to bits, he puts up with so much from me. And I know he feels useless a lot of time because he can't take my pain away and his work makes him unable to come to my hospital appointments and hold my hand during tests but he's far from it. He is my rock that keeps me going. He gives me reason to get up everyday and keep fighting my horrible condition and the problems that it causes. I think I am at my toughest stage right now and so many times I feel like giving up, but he stops me. So if you're a partner of someone with a chronic illness and you feel useless, the chances are you are the opposite. Jon can do the most simple thing but it can put a smile back on my face in seconds. So many people in my life think that my battle is either easy or I am coping fine, maybe they would see a different fighter if I didn't have my hero having my back. No one sees everything that he does for me, to the point he dries and straightens my hair, helps me get dressed, sorts my meds, but most importantly he never gives up on me #marksandspencers #carnivallights #lightupletters #christmasdecorations #red #gold #redandgold #decorations #home #lights #initials #lightupinitials #lovemyman #photos #selfies #photography #disabledphotographer #couple #myhero #chronicallyill #ehl#ehlersdanlosrome #ehlersdanlos #keepsmegoing #hestopsmegivingup #myrock #soulmate #forever #myhappilyeverafter #smile #heputsthesmileonmyface
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Beautiful. Strong. Determined. Smart. Generous. Loving. Hero. Mumma ❤️ . . . #inflammatribe #mumma #dia#diabetes #renalfailure #kid#kidneydisease #dia#dialysis RepostBy @cookielou81: "Blowing kisses to her fans 😘 I Loved seeing Mumma smiling and having fun at her dialysis clinic's Christmas party 🎄She amazes me with her strength and determination every day! ❤️❤️❤️ . . . #christmas #christmasparty #mymum #myhero #kisses #dialysis #kidneydisease #diabetes #ibd #invisibleillness #aut#autoimmunease #autoimmune #chronicillness #chronicallyill #chronicpain #crohns #endometriosis #warrior #spoonie" (via #InstaRepost @EasyRepost)
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Do something new day 2354. ALWAYS BE GRATEFUL - Today was a day of thanks as I wrote Christmas cards to friends and family for their gifts, cards and warm thoughts. It was a special time to focus on the year and all I have to be grateful for. A rainy day and my doctors have cautioned me not to be in crowds so real Christmas shopping is not possible. Played holiday carols, ordered on line, wrapped packages, drank mint tea and ate chocolate peppermint bark. Jingle Jingle. #christmascards #christmascarols #fri#fri#friendsver #friends #bon#bonniepitmandosomethingnew #dos#dos#dosomethingy #dosomethingnew #dosomethingtoday #dosomething #notes #thankful #grateful #gratitude #reflection #reflections #spo#spoonie #newexperience #somethingnew #minttea #bonniepitmandosomethingnew #time #memories #memory #momentbymoment #friends #spoonielife #inthemoment #invisibleillnesses #chr#chronicallyill #chr#chronicpainwarrior #today #spoonie #chronicallyill #chronicillness #chronicpain
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Blowing kisses to her fans 😘 I Loved seeing Mumma smiling and having fun at her dialysis clinic's Christmas party 🎄She amazes me with her strength and determination every day! ❤️❤️❤️ . . . #christmas #christmasparty #mymum #myhero #kisses #dialysis #kidneydisease #diabetes #ibd #invisibleillness #aut#autoimmunedisease #autoimmune #chronicillness #chronicallyill #chronicpain #crohns #endometriosis #warrior #spoonie
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Spoonie Christmas Challenge Day 16... Most helpful advice?***** The most helpful advice I've received recently was to listen to my body and then to advocate for myself. You know your body better than anyone else. And you know when something is wrong or different. Listen to your body when things like that happen! Sometimes, for me, it's hard to express what's wrong, but I can feel something is different. Listen to it and advocate for it. Tell someone something is wrong and don't give up just because they don't believe you, understand you, know how to help you, etc. It's your body, you know it best, so listen to it and fight for it! **partner page** @mental.health.awareness_ #beatms #curems #disablednotunable #thisisms #disabledbuttrying #degenerativediscdisease #fightingms #multiplesclerosis #mswarrior #cpap #sleepapnea #gastroperisis #staystrong #chronicallyill #chronicillness #chronicfatigue #spoonie #invisibledisease #invisibleillness #disabilityawareness #mentalhealthawareness
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Who else suffers with insomnia? I take either one of these medications every single night between 9-10. I love both of these since they are both a pain reliever and a sleep aid. I've tried going nights without sleep medication but my body just won't let me sleep without it. I'm up tossing and turning until 3-4am. I wish I didn't have to take it but my body NEEDS it. 🙁😴 . . . #Rec#Recover> #Journey #RoadToRecovery #Recover #Rest #ChronicIllness #ChronicPain #ChronicallyIll #ChronicFatigue #Autoimmune #AutoimmuneDisorder #AutoimmuneDisease #JointPain #Pain #Spo#SpoonieLife #Spoonie #Surgery #InvisibleIllness #Life #Sleep #SleepAid #Insomnia #InsomniaProblems #InsomniaSucks #PainReliever #LetMeSleep #SleepMedication
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How can any one person make me so happy? @rusa305 You've changed my life more than you will ever know. I love you l love you. #tattoos #tattooedbabes #spoonie #chronicallyill #bffs #bestfriends #thefamilyyouchoose #beach #ocean
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How many of you do physical therapy programs or exercises for POTS? I have since this summer and it has definitely helped! Children’s Hospital of Philadelphia (CHOP) has a POTS exercise protocol that you can view online and print. I do a modified version of that protocol.
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Appreciation post for @ally_armstrong1 (and her funky kidneys) for this super spicy self care Christmas gift, and bein a good lil pal.♥️🌻♥️ Also the socks are 11/10 going on my feeties for my tumor ultra sound on Thursday. Go fund me link in bio💫 #selfcare #socks #facemask #chocolate #hospital #tumor #ultrasound #pal #spicy #chronicallyill #chronicillness #spoonie #spooniesister #spoonielife #chronicallyfabulous #disabled #sohappy #cute #aw #cancer #medical #pray #fingerscrossed #gofundme #gofundmedonations #invisibleillness
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I really should have done the housework instead of my make up but 🤷🏼‍♀️ #nomotivation #sicklife
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*goofy movie soundtrack plays in the background*
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Sleepy selfie Had a long day me Abel and my mum all went out for a lovely "walk" and had a great time. Good night guys #sleepy #tiered #longday #dog#dog #pup #bed #christmas #family #ftm #servicedog #dog #labrodore #assistancedog #bff #spoonie #pots #me #wheelchair #eds #cfs #chronicallyill #chronicillness #syncope #faint #bedtime #lgbt #sleepyselfie #snow
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Ariya getting ready to put her ornament on the tree. Can you believe Christmas is 9 days away!? ___________________________________________ Don’t worry, the hook isn’t stabbing her. I bent and swirled it so it didn’t hook her tongue. She wouldn’t be holding it if it was hurting her ☺️
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What's the most annoying thing you've had said to you in regards to your chronic illness? Mines get well soon🙄. Like ummmm nope. Don't think you understand. P.s it's important to remember these people are usually uneducated/curious. Getting mad is unproductive. Just explain to them. -Niamh Photos from the @spoonie.posts page. #chronicallyill #disabled #chronicillness #spoonie
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I had a small panic attack today, but it only lasted a few minutes and I was actually able to calm myself down. I was kinda impressed lol I don’t have them too often anymore but oy my mind spirals and I just can’t help it... roses have thorns, ups and downs, but are still beautiful 💕🥀#tbh #tattoos #inkaddict #upsanddowns #trying #chronicallyill #rose #thorns #panicattack #mentalhealth #selfcare #progress #honesty #youngandsick #talkaboutit #yourenotalone #depression #loveyourself #healing #xo
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Chamomile tea is most commonly known as a sleep aid and its ability to promote a full and restful night’s sleep which is especially beneficial for those who suffer with insomnia, sleep disturbances, racing mind, or high anxiety and stress. However, chamomile tea also has other significant healing properties such as the ability to soothe a disturbed digestive system by easing flatulence, stomach aches, ulcers, and cramping and by assisting in overall digestion and elimination. It is also known to help relieve bronchial and sinus congestion, calm anxiety and panic attacks, decrease menstrual cramping, ease muscle spasms, and reduce migraine pain. Chamomile tea’s anti-inflammatory properties makes it beneficial for helping to reduce swelling associated with arthritis, fibromyalgia, and other auto-immune diseases. Chamomile tea benefits the liver and kidneys by stimulating them to purge out any toxins and cleanse them from the system. It also has anti-bacterial and anti-fungal properties making it especially beneficial in fighting against colds, flus, infections, and even Candida. Chamomile tea is an excellent remedy for children as it can calm colicky infants and teething babies as well as soothe children that are irritable, cranky, and restless. Its mild flavor is often accepted and enjoyed by children especially when sweetened with a touch of honey. As a topical remedy, cooled chamomile tea can be applied to the skin to help soothe rashes, chickenpox, psoriasis, eczema, and burns including sunburns and even radiation burns. Chamomile tea can also help to relieve eye fatigue and dark circles. Simply apply a cooled tea bag to the eyes for five minutes at night as a gentle and effective compress. Chamomile and peppermint tea are often used in combination due to their synergistic properties to help the body cleanse, relax, and heal. {Even though the healing qualities of chamomile are loved by many, chamomile should be avoided by pregnant woman as the herb may act as a uterine stimulant and by those that have severe allergic reactions to ragweed pollen.}
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Das wünsche ich allen hier. Kommt gut uns neue Jahr und geniesst die Zeit mit Euren Familien . Ich verabschiede mich für dieses Jahr . Allen CED'lern und anderen chronisch Kranken eine ruhige schmerzfreie Zeit, stresst Euch nicht, besinnt Euch aufs Wesentliche und denkt positiv .. Das ist soooo wichtig 💓 Nach jedem Unwetter folgt Sonnenschein. Ihr seid stark 💪!! Besonders Euch Kämpfern wünsche ich nur das Beste, tonnenweise Gesundheit, gute Werte und nen unerschöpflichen Lebensmut 🌟 #ced #chronischkrank #morbuscrohn #crohns #crohnsdisease #weihnachten #christmas #neuesjahr #newyear #wish #ges#gesundheit #gesund #health #leben #wunsch #life #nostress #keinenstress #family #love #liebe #ibd #chronicallyill #chronicalillness #familie #crohnsfighter #fighter #purpleribbon
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Blue & Gold. PD: Xia sits in the snow, facing the camera with a serious expression.
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I know this may seem elementary, but car anxiety is a very real thing for me. I’d never experienced it before my second surgery; however, after it, my car anxiety became severe. Five months ago I couldn’t even sit in a car without having a panic attack! I still struggle with it, and I’m not totally sure the cause of it, but PROGRESS people. I’m sitting in a car and I’m 30+ minutes away from my house. Any progress is progress. This is something I’ll celebrate! 🌻💜🦋
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Some more lights, because lights are cheerful. * * * #christmaslights #chronicpain #chronicallyill #hohoho
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Because i wrote the truth. Game Stop censored me: told them the game console was broken. It was shipped broken and the screws holding it together stripped! I drove to 2 Game stops to get another one. They kept me on hold for more than 30 mins for customer service! And they wont post my review. No swearing. Nothing in the post but truth. But why not tell consumers the truth? #gamestop #censorship #customerservice #fake #beauty #gamer #over40 #chronicallyill #disabled
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When the vomiting is so bad you’re getting dehydrated and haven’t kept anything nourishing down in days but you don’t want to go back to the hospital where you’re constantly left to feel stupid because they can’t find the cause #gastroparesis #gastroparsesiswarrior #spoonie #chronicallyill #dehydrated #starving #vom #sick #avoidinghospital #justwanttogetbetter #ouch
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Wish me luck everyone🌠 I'm out doing a Hail Mary for Christmas shopping, I'm already tired and we still have a lot of places to go, but I'm determined to get this done today. I brought some boost, pain pills, and a Dr. Pepper. Time to tackle this list 🙅💜 #crohns #crohnsdisease #crohnsgirl #crohnswarrior #crohnsflare #IBD #inflammatoryboweldisease #autoimmunedisease #immunosuppression #chronicillness #chronicallyill #spoonie #invisibleillness #butyoudontlooksick #tired #fatigue #spoonsdontfailmenow #snapchat #selfie #christmasshopping #christmasselfie
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I have to get post op ultrasound on my Fibroadenoma Tumor in a few days... Fingers crossed they don’t squish me with one of these bandages, and also that it hasn’t become cancerous since the biopsy🤞🏼 #tumor #fibroadenoma #cancer #ultrasound #hospital #postop #bandage #biopsy #breastcancerawareness #chronicallyill #spoonie #spoonielife #squish #pray #chronicallyfabulous #disabled #disabledandcute #ouch #surgery
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A little update as to what’s going on the past few days with the vlogs... #chr#chronicillnessney #chronicillness #chronicallyill #chroniclife
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Z is feeling a bit better, so glad to see him smile again, even play a little! Facetiming with his bestfriend, Grandpaaa! Oh and that sweater... his choice😂, yeah, he already has a own voice with 1,5😱😂.. So proud to have this boy as my son.. Who else just looks at their kids and have tears in their eyes sometimes? Or am I the only one😱? ✖️✖️✖️✖️✖️✖️✖️✖️✖️✖️ #justliveblogbystephanie #justliveblognl #chronicillness #chronicpain #chronicallyill #chronicallyfabulous #chronischziek #chronischepijn #blogger #feedingtube #feedingtubeawareness #pancreatitis #butyoudontlooksick #invisibleillness #throwbackthursday #spoonie #health #mom#mommyblogger #mommy #hus#husbandandwife #husbandgoals #family #husband #mixedkids #love
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Spoonie Christmas Challenge Day 16 - Most helpful advice I used feel like doctors had all the power and that there was nothing I could do about it. I would keep seeing doctors that weren’t helping me and weren’t making me feel heard. My best friend gave me some advice that made me really look at it differently. She said that we are paying doctors for a service and that they work for us. My home health nurse said something very similar. She said that if my doctor isn’t doing their job, then it’s time to fire them. I know that finding doctors isn’t easy and that sometimes we don’t have much of a choice in who we see. But remember that you are paying them and that means they are technically working for you. Don’t be afraid to stand up for yourself and ask for the things you need. And if you do have the option to try other doctors, don’t be afraid to shop around for the doctor that’s right for you. I recently “fired” my PCP that I had been using for a few years because he never listened to me and he was getting to the point where he wouldn’t even try to help me with anything. After him, I tried out two other PCPs that I wasn’t satisfied with before I finally found the right one. And finally having a great doctor has made a world of difference in my care. #spo#spooniestmaschallenge #spoonie #chronicallyill #chronicillness #disabled #pots #potsie #posturalorthostatictachycardiasyndrome #cfs#cfsme #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis #smallfiberneuropathy #migraines #mentalillness #advice
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I had a pretty great counselling session the other day. Feeling beautiful and confident that I’m on the right path. It’s realistic that I’m going to be in pain for a long time, but I’m ok & at least my life will be colourful 💙💕#tbh #xo #upsanddowns #mentalhealth #depression #chronicallyill #youngandsick #pain247365 #tryingtoheal #thoracicoutletsyndrome #tattoos #inkaddict #grey #artist #selfcare
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We went to the eye vetinarian. Narnia was very tired after! But she was a good pooch
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Another day of physical therapy!🤗 I ended up working with a new physical therapist today! I’m not sure why, but I’m really glad I ended up with him! He seemed to know even more about EDS. He listened more to my problem areas and targeted exercises directly for them. Some of the ones we tried caused bad pain and others caused just a little good pain and he helped me figure out what is good to feel and what isn’t. He said if something starts to feel not right, to skip that one. He explained how we will be doing the Muldowney protocol which is like THE exercise protocol for EDS. He said how another Zebra went all the way to see Muldowney, brought him the book back, and they went through the protocol together. So thank you my fellow Zebra, who ever you are.💕 Also I messed up my wrist in my sleep. I mess up things a lot in my sleep, but my wrist was hurting much worse than normal and he taught me how to create space and realign it! How cool is that!? What can I say, I’m easily excited! But I’m really looking forward to working through the protocol! 😃 I’m also at urgent care because I’m pretty sure I have another UTI or something. What’s frustrating is that it’s never just the chronic illnesses, as if that list of symptoms aren’t long enough, but I always seem to get additional colds, infections, and new symptoms all the time. But it is what it is! 🤷🏻‍♀️ It’s still been a good day so far, but I’m definitely napping when i get home.😂 #eds #ehlersdanlossyndrome #zebrastrong #potsie #posturalorthostatictachycardiasyndrome #spoonie #spoonielife #tbi #braininjury #shorthair #blueeyes #disability #chronicillness #chronicallyill #disabledandcute #physicaltherapy #exercise #mobility #mobilityaid #rollator #leggings #excited #blessed #glasses #december #dimples #subluxation #sick
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