So I had to get another emergency appointment with the doctor, I've been feeling really nauseated and yesterday I was really sick so now they're ruling out helicobacter, celiacs disease and that. I'm getting blood taken next week and may need to be referred to a specialist, oh and I don't have a kidney infection. I'm just done, this has been going on for over a month, I've lost a considerable abound of weight because I've been unwell and I'm so lethargic, I feel like a yoyo going back and fourth to doctors like this with no answers. #chronicpain #chronicillness #thatchronicillnesslife #hypermobility #hypermobilitysyndrome #hypermobilitysyndromes #spoonie #spoonielife
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Combined my Tues run and Weds walk by walking down to the river, running a lap and then walking back. Dog got some much needed exercise too. Don't want to slack off this week if possible, as I'll be needing to ease off over Christmas. Was not feeling like it at all but this is where #noexcuses works so well for me. It's not about looking a certain way, being super fit, or having particular priorities. It's a personal thing- asking myself "reason or excuse?". In times past I'd have tested more than was really necessary with my wrist, awarded myself chocolate and cake for my pains, and ended up feeling grottier and grottier and probably laid off until New Year! Which would be fine as a choice if it was what I wanted, but it isn't. What I want is to avoid a setback and keep progressing towards my goals- to be able to do more with my family, work more hours and be able to have a social life! #noexcusemom #sprain #running #runningwithmydog #walk #hypermobilityspectrumdisorder #hypermobilitysyndrome #spooniefitness #chronicfatigue #workforit #goals #lifestyle #dreaming
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Yay, woke up with an awful headache. Pain meds, a cup of tea and binge watching Snapped.
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When you have the most awesome friends!😍 Even if they’re thousands of miles away, they make me feel more loved than any friends that I ever had physically around me! 🌍
15 2
Gigtforeningen har delt mit flotte smertemonster 😂👿 . Nogen gange kan det være godt at se hvordan fjenden ser ud 😁🙈 . . #gig#gigtningen #smerter #gigt #kroniskesmerter #kronisksygdom #skoliose #hypermobilitysyndrome #fib#fibromyalgiks #fibromyalgi #fibrowarrior #fuckgigt #slidgigt #diskusprolaps #irritablebowelsyndrome #modicforandringer #backpain #nervesmerter #møjkrop #giverikkeop
11 1
i love my small town coffee shop:) spent several hours studying here last week. i had an exam last week, one yesterday, one today, and two more Thursday. But then i’m done for 3 weeks! i don’t know if it’s stress from school or what, but i haven’t been feeling well the past week or so. My mom had to drive me to school today because i was too nauseous to drive myself. Then even with zofran, i still spent most of the day feeling i was going to throw up. i’ve had a “slow motility flare” (never been diagnosed with gastroparesis but i’m on meds to increase gut motility and have all the symptoms- basically just have the unofficial diagnosis of slow motility) and have been feeling way more nauseous than usual and unable to eat because i feel so full or eat a few bites, then feel really full. i’ve lost a couple pounds due to the stomach issues, down from 100 to 96, but it will come back up when I️ start feeling better. Just gotta make it through Thursday, then i have several weeks to rest and hopefully get over this flare. This was a long post, but i don’t know how to be brief. it’s just not in me!
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Glossybox x Dusty Boy December 2017! | Mince Pies Starry Skies Christmas Edition My latest unboxing has just gone live on YouTube and this box is totally awesome! GLOSSYBOX have totally smashed it this month with tons of great products to make you feel like Christmas has come already. Check out my video and let me know what you think of the products and tell me if you got something different. #glossybox #dustyboy #makeup #makeupaddict #lookgoodfeelbetter #liveeachmomentwell #liveeverymomentwell #subscriptionbox #topquality #christmashascome #mincepiesstarryskies #glossyboxdecember #glossyboxchristmas #chronicpain #chronicfatigue #chronicillness #disabodyposi #brokenbutbeautiful #adrenalinsufficiency #hypermobilitysyndrome
12 0
Rudolph made it to Pensacola. He is traveling the US to help @cur@curearthritis Go to to see Rudolph’s journey. He will be off to his next destination tomorrow. #SwimmingForACure . . . . . #kids #ZoggsUSAJuniorAmbassadors #florida #pensacola #youthathlete #sjia #ath#athlete #arthritisathlete #seearthritis #spoonie #spooniestrong #christmas #hypermobility #swi#swimmer #swim #hypermobilitysyndrome #curearthritis #inspire #kidsgetarthritistoo #motivation #athlete @curearthritis @racinforacure @zoggsusa @zoggsaustralia_newzealand
99 1
Success is survival – Leonard Cohen ✨✨✨ The waves of pain and the obstacles are all coming at me hard these days. To be quite candid I'm drowning in this shit. It's really difficult. I'm struggling and sometimes failing. It sucks + it hurts. I ended up in the hospital again yesterday and my tests and scans are still resulting in more questions than answers. We've had to triple some of my meds. It's hard to see where I've actually made progress and where I'm regressing. I'm not sure what to do next. That being said: I'm definitely not giving up and I am very focused on surviving this so I can thrive again. Eye on the prize and all that good stuff. If you can spare any positive energy please send it my way. I promise to put it to great use! I got this. 💖 (Thanks Lolo for capturing me thinking/dreaming/hoping. You're the best.) And thank you to my incredible friends&family for being the kindest and most thoughtful support team that has ever existed. You know who you are. I couldn't do this without you. 💖#invisibleillnessawareness #fibromyalgia #endometriosis #ovariancyst #pots #ptsd #pcos #pelvicfloordysfunction #interstitialcystitis #autoimmuneurthicaria #migraineswithaura #anxiety #depression #hypermobilitysyndrome #endpillshaming #cbdoil #chronicillness #acupuncture #cuppingtherapy #insomnia #autoimmunedisease #chronicpain #lovemydetour #igotthis
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I love this dress so much. 10/10 overdid it today but it was so worth it. My back kills but who cares 💁🏻I have had such a fun day! And too much sugar. But who can resist a candy cane. Not me anyway! The meetings and Dr appointment less fun but definitely constructive! Getting allergy testing on Tuesday (bloods) then depends on what they find but I will probably end up at an allergist. Have to wear a mask outside in the meantime as smoke seems to set it off and boy oh boy to students smoke around here. Ho hum. . . All tests are good test even when the process sucks I guess! Tests mean progress. Even if progress is being given jabbed with a needle repeatedly 🙄 . . #spoonie #selfcare #chronicillnesswarrior #glassbodysteelsoul #justkeepswimming #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #zoestribe #JOOTCxmas
24 4
My damn hips are still bothering me. Waiting on physio in the next day or two then OT will decide what the next steps are equipment wise. And I’m now just waiting on carers getting put in too. It’s so stressful. Now that we have finally managed to get me into bed I’m watching movies and colouring in #hypermobility #hypermobilitysyndrome #ehlersdanlos #ehlersdanlossyndrome #EDS #epilepsy #seizure #seizuredisorder #asthma #ADHD #christian #chronicpain #chronicfatigue #invisibleillness #mentalhealth #mentalhealthproblems #hallucinations #mooddisorder #depression #wheelchairuser #neurologicalfunctionaldisorder #hypoglycemia #borderlinepersonalitydisorder #emotionallyunstabledborderlinepersonalitydisorder #BPD
26 0
People who know me might not describe me as an 'introvert' but this is absolute bliss. Inside good, outside bad. . . . #introvert #solitude #liketobealone #quiettime #quote #instaquote #meme #chronicpain #coldweather #FAI #hypermobilitysyndrome #literature #bookworm #bibliophile #books #artist #artistsoninstagram #bookstagram
25 0
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.8 mile @9:23 min. 50° temp in #Miami I over dressed n my body as well is running on warm so I over heated n puked 2x. Pounding headache on the 2nd so I stopped. I'll wear less next time. #run#run #run #jog #jogging #cold #overheated #arthriticfeet. #arthritis. #hypermobility. #hypermobilitysyndrome. #migraine #runningonwarm #marathon #halfmarathon. #training #dontgiveup. #noexcuses. #nostoppingme #fusedarches #fitness
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Me and my robo-arm managed to do Clean Week cardio. Lots of modifying and no arm waving but enjoyed it and go a sweat on 😀. Think better than running as repetitive motion starts up wrist trouble, so good to keep varying positions. Thanks @petradoingpetra #workout #cardio #cleanweek #beachbody #sprain #hypermobilityspectrumdisorder #hypermobilitysyndrome #noexcuses #nodiets #noexcusemom #fitfatties #edsathletes #HAES #healthateverysize
9 4
I'm pretty sure there's an automated egg whisk somewhere out there, and I could probably have used a cake mixer but using a blender is so much easier. #painhacks My attempt at a sweet-potato and greens frittata! Ta-daaa!! On my last day of antibiotics and hoping that my tastebuds resume their function again 😒 #invisibleache #invisibleachehacks
20 3
You don’t need to look unwell to be unwell 💚💊 - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Lately I have been fighting the same scenarios over and over in my head. I have been worrying about University, and how little I have been attending this year. I keep thinking about what everyone must think, and how easy it must be for people to believe that I don’t care anymore. I am slowly trying to come to terms with the idea that no matter what grade I get, the fact that I am doing all I can to make it to the end is enough, and is worth just as much as it would be for me to get a 1st. I can’t even begin to explain what it is that I feel because I’m not entirely sure myself. But the point is that I’m trying, and I’m pushing myself as hard as I can. • I have been struggling for a little while now both mentally and physically. As the cold weather draws in, my physical health doesn’t take too kindly. My body aches and the pressure I feel in my joints when I move is something that I cannot put into words. I am currently in the process of trialing new medications to try and find something that will work, but when things get tough, nothing seems to do the trick. • I can’t seem to get through a full day without being mentally and physically exhausted, even when I haven’t done much. However, when it comes to getting to sleep, I can’t even do that. I find myself sitting up until the early hours fighting exhaustion and body pain to the point that it won’t let me close my eyes and relax enough to drop off. So much so, that when it comes to waking up in the morning, my body hasn’t had enough rest to justify a reasonable hour. • This post isn’t meant for me to complain, because that isn’t what I want to do. I want to recognise the fact that even though I don’t look like I am unwell, and I still try to do as much as I physically and mentally can, I am still unwell. Being ill doesn’t have an appearance. You can’t see it. Not 100% of the time anyway. • If you take anything from this post, any thing at all, I hope it is the fact that you can’t base how much help someone needs by the way they look, and how you see them on the outside. It’s OK to not be OK.💚
31 1
Some days my greatest achievement is to get showered and get back into bed. Loving my skincare products at the moment. I’m nearly out of my @filorga_uk #timefiller eyecream which is the only eye products I’ve tried where you can see a difference. It plumps out my under eye a lot especially when I’m not smiling! Also loving my @nipandfab #dragonsblood serum which makes my face feel amazing. Lastly my @proactiv_uk skincare regime is making me look so much better barefaced than I used to. What products are you guys loving right now? #facebaredontcare #nofilter #lookgoodfeelbetter #skincare #beauty #dailyacheivments #freshandclean #chronicillness #chronicpain #chronicfatigue #adrenalinsufficiency #hypermobilitysyndrome #disabodyposi #brokenbutbeautiful #timeforbed #skincareroutine
13 1
This photo describes my life at the moment, a couple days ago it got really hot outside (it's summer) and I went for a 45 minute walk without water... bad idea. As I was just about home I started having the edges of my vision going black and I could hardly see, my heart was going about 150 and I felt like I was going to vomit. We got home and I started having trouble breathing and got a headache and I had a lot of trouble walking and I knew I was dehydrated but I was too nauseous to drink anything so I asked my dad if he could take me to the ER and he refused because 'I was faking it'. I texted my mum and asked if she could take me but my dad had talked to her and told her that I was apparently faking it so she was against me and she straight up told me I'm mentally unwell which really hurt. I have orthostatic hypotension and I struggle a lot with hydration because I have nausea a lot of the time. I AM NOT FAKING MY ILLNESS I do fake my happiness for other peoples sake, I fake not being in pain all the time, I try my best to keep everyone else happy but sometimes I do need to go to the ER and sometimes I do need help. I hope you're all having a good day (: #ehlersdanlos #ehlersdanlossyndrome #eds #edswarrior #edsawareness #ehlersdanlostype3 #hypermobileeds #hyp#hypermobilityrome #chronicillness #chronicpain #spoonie #orthostatichypotension #pots #posturalorthostatictachycardiasyndrome #connectivetissue #connectivetissuedisorder #dysautonomia #zebra #edstype3 #hypermobility
28 2
tfw you're so bad at breaststroke you manage to hurt yourself just trying to teach it #hypermobilitysyndrome #imaklutz
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I need a haircut so bad. I’m struggling so bad with my hips. Transferring is literally bringing tears to my eyes because it hurts so much. My left leg is so weak I can barely move it. I can’t wiggle my left toes either. This confirms what ortho thought most likely and I’ve trapped a nerve. Still on antibiotics. And still feeling unwell with this UTI. Wish they could just take the catheter out so I didn’t have as many issues but I can’t pee! So bloody fed up of being sick #hypermobility #hypermobilitysyndrome #ehlersdanlos #ehlersdanlossyndrome #EDS #epilepsy #seizure #seizuredisorder #asthma #ADHD #christian #chronicpain #chronicfatigue #invisibleillness #mentalhealth #mentalhealthproblems #hallucinations #mooddisorder #depression #wheelchairuser #neurologicalfunctionaldisorder #hypoglycemia #borderlinepersonalitydisorder #emotionallyunstabledborderlinepersonalitydisorder #BPD
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Hi everyone! I know 200 followers isn't exactly an achievement, but when I started sharing sarcastic memes at the beginning of the year, it was really an outlet to stop me going crazy and doing a school shooting or punching my physio in the tit (violence isn't cool kids!). But it's very nice to see that there are some other people out there who appreciate a good swear about chronic illness. Thanks for humouring me! Xxxx . . . . #eds #ehlersdanlos  #jointhypermobilitysyndrome #hypermobility #hypermobilitysyndrome #hypermobile  #zebrastrong #spoonie #medicalzebra #dysautonomia #ehlersdanlosawareness #chronicillness #chronicpain #myalgicencephalomyelitis #chronicfatigue #chronicfatiguesyndrome #posturalorthostatictachycardiasyndrome #spooniewarrior #disabled #disability #disabilityawareness #invisibleillness #butyoudontlooksick  #reynauds #disabodyposi #wheelchair #wheelchairaware
35 0
Soaking in Epsom salts to try and ease my muscles. I've been feeling really shitty today, but I had a job interview and got the job, I managed to figure out some Christmas presents, and I managed to shave my legs (my hair will have to be washed another day). I'm really really struggling to eat, I'm so nauseous and feel so "full" I can't eat, it's so uncomfortable. I had some soup and yogurt today, that's all I could manage. I'm watching my weight fall off again (which a piece of me loves but I don't want to lose weight the crappy way). My sugar has actually been fine today which is a surprise, but then again it's hard for anything to happen when you aren't eating at all 😂🙈 #chronicpain #chronicillness #chronicallyill #invisibleillness #cro#crohnsdisease #crohns #ibd #autoimmunedisease #hypermobilityspectrumdisorder #hypermobilitysyndrome #spoonie #spoonielife #spooniestrong
41 3
🔹 Mes problèmes de diaphragme Le diaphragme est un muscle fin et aplati qui sépare la cage thoracique de l’abdomen. Tout à commencé il y a 3 ans lorsque je ressentais très fréquemment des blocages respiratoires, ma respiration était coupée et je devais reprendre une respiration manuelle. Depuis ma capacité à respirer à considérablement diminuée. En effet, une insuffisance de tonicité musculaire de divers muscles et notamment ceux de l’abdomen ont provoqué un blocage de mon diaphragme. Celui ci est comme figé, ultra sensible au touché et n’a plus la force de soulever mes côtes. De ce fait, on m’a prescrit de l’oxygène l’année dernière, pour mieux compenser l’apport manquant, puis pour m’aider lors des grosses crises où je n’arrive quasiment plus a respirer. Il faut aussi prendre en considération qu’un problème de diaphragme a des répercussions dans tout le corps. Les attaches du diaphragme notamment sur la colonne vertébrale sont communes à d’autres muscles comme le psoas ou l’iliaque, ce qui provoque des problèmes de postures, déplacement de vertèbres et du bassin. Le mouvement de va-et-vient du diaphragme ainsi que la pression exercée sur l’abdomen favorisent la circulation du sang dans le cas contraire on observe un mauvais retour veineux notamment au niveau des jambes. Et également l’apparition d’hernie hiatale (déplacement de l’estomac par pression continue du diaphragme) avec de possibles remontées acides dans l’œsophage. Depuis quelques temps j’essaies une nouvelle méthode pour regagner en tonicité et mieux respirer, mais les résultats sont partiellement concluants, je respire mieux quelques heures puis retour à la case départ avec d’atroces douleurs.
40 3
I've been feeling completely useless lately. Even though I got the EDS diagnose and many other things have been moving forward the progress has mainly been on paper. I'm still waiting on the MRI in January which means before that we still don't quite know what is wrong with my lower back. A.k.a we still can't make a specific treatment plan for it a.k.a after 9 months I'm still stuck here trying to make best out of words like "You should let your body rest for now, we need to try get the nervepain under control, you should avoid any hard exercise, but also you should try to exercise as much as the pain allowes you to try and built some muscles to support the spine.. But remember again to rest and avoid exercise." 😖😲 It's weird how habits like making the coffee in the morning, is now casually followed by sitting on the floor instead a soft couch to drink it, and to company it you get a banana and maybe an icepack with the back support or perhaps some mild electric shockwaves to kickstart to day with ! Well, the year is fast on it's way to an end and looking back last December to where I'm at I can't even begin to guess where I'll be in a year from now! Here's a couple pictures from around 2015/2016 that shows quite nicely some of that body position back then; atleast there is some clear improvement there! 👏😅🙊 #random #rant #mybendybody #EDS #invisibleillness #chronicpain #fatigue #hypermobilitysyndrome #ehlersdanlos #tb #TENS #nervepain #posture #spoonie #spoonielife #edsawareness #hypermobilityconnect #ehlersdanlossyndrome
23 1
Just over a year ago a physio told me that my disabilities and chronic illnesses were so bad I could end up in a I officially passed my Fitness Instructor qualification and have never felt better 💪🏻 Thank God I no longer have to see this creepy picture on the text book anymore either 🙏🏻 #ehl#ehlersdanlosrome #ehlersdanlos #ehlersdanlosgrrls #hypermobility #hypermobilitysyndrome #dyspraxia #mastcellactivation #potssyndrome #arthritis #spoonie #spooniewarrior #spoonielife #spooniecommunity #fitnessmotivation #fitnessjourney #disabledfitness #disabledandcute #physicaltherapy #rehabilitation #butyoudontlooksick
31 2
#24daysofgratefullness I am grateful for low symptom days, and even hours. . . I often try to get as much done when I feel good and then crash later. So I have to work on pacing myself even on low symptom days. Like the one I had yesterday, except today I know I am paying in spoons for yesterday's walking. . . #spoonie #selfcare #chronicillnesswarrior #glassbodysteelsoul #justkeepswimming #ehlersdanlossyndrome #hypermobilitysyndrome #HEDS #EDSIII #chronicregionalpaindisorder #NEAD #lowsymptoms #pain #pacingmyself #zoestribe
18 1
Why we EDSers call ourselves Zebras in case you were wondering. . . Zebra is medical slang for arriving at a less usual diagnosis when a more commonplace explanation is initially considered more likely. It is shorthand for the phrase coined in the late 1940s by Dr.Woodward who instructed his medical students "When you hear hoofbeats, think of horses not zebras". Since horses are common in Maryland while zebras are relatively rare, logically one could confidently guess that an animal making hoofbeats is probably a horse. By 1960, the aphorism was widely known in medical circles. . . #zeb#zebraclub #zebrastrong #spoonie #ehlersdanlossyndrome #HEDS #EDSIII #ehlersdanlossyndromeawareness #hypermobilitysyndrome #chronicillnesswarrior #ChronicPain #genetics #zebra #zoestribe
21 0
Been to minor injuries and had an x-ray. Confirmed just a sprain and gave me this awesome splint. Feel less stressed now and can get on with working out how to manage and recovering from being awake most of the night due to the pain! #sprain #ligaments #minorinjuriesunit #nhs #ilovethenhs #savethenhs #spoonieproblems #hypermobilityspectrumdisorder #hypermobilitysyndrome #ehlersdanlos #heds
6 0
SPOONIE CHRISTMAS CHALLENGE: Day 11; Service dog or pets. ARE YOU READY FOR THIS?!?! I'm a licensed veterinary technician. I'm a crazy animal lover. I have a lot of animals. Too many. 😂 1. Lia, 14 year old terrier mix. 2. Un-named French bulldog puppy. She's 10 days old and suffers from a cleft palate and harelip. I tubefeed her every two hours. Still hoping she pulls through 🤞🏻 3. Sydney, 9 year old lab. Sweetest dog ever. 4. Juniper, 3.5 year old Frenchie. Nearly died of mastitis a year and a half ago. She was signed over to the hospital I work at and I adopted her. 5. Nina, 2.5 year old mini Aussie. My sister's pup. 6. Fig. 4 month old Siamese. He was turned over to my work at three days old. Bottle fed him every 2 hours until he was old enough for kibble. Foster failure. SECOND PICTURE 1. Phillip, ~2 year old scaleless ratsnake. My Prince Charming. 2. Indigo, 4 year old chinchilla. Wasn't socialized by his previous owner. Now my lil buddy. Got him last March. 3. Bentley, almost 19 year old Quarter Horse. Has navicular disease. Basically big pet. 4. Mowgli, 3 year old domestic longhair. He's a blood donor, and has saved many lives! 5. Heidi, ~3 year old Persian. I met her while in tech school. She has congenital kidney issues, and couldn't be adopted to the public. Interestingly enough she was found as a stray with another Persian, and they both had microchips from Germany. 🤔 I'm a crazy person. I know.
57 4
It’s festive season and I had started three blog posts and after a stomach flare up thought it would have been posted by now . But again I must apologise - I broke my scaphoid 9 weeks ago and on Wednesday was hoping cast would be off . This makes it so much easier for me to create my blog posts but instead I have had a nightmare . So my scaphoid hasn’t healed and the pain is still so bad it made me feel faint ( I usually have a high pain tolerance to ) . A new cast was put on but found out the next day when my fingers turned blue with pins and needles that it was put on too tight . A trip to A&E and my cast is split until I can get it redone . Although it’s great my blood circulation is back, the cast isn’t supporting me enough and the pain has been awful . Sorry for my belated post again it’s coming but my arms needs to be fixed before it can ! Hope everyone is well and the snow doesn’t last .
16 3
I'm going to partake in this! Time to play catch up: 1. Ehlers-Danlos, dysautonomia, depression, anxiety, irritable bowel syndrome, migraines, subluxed disc (C6), carpel tunnel syndrome, + more.... 2. Essential oils 3. People can be part time wheelchair users! Not everyone is confined to a chair. 4. Netflix and HBO 5. Gatorade Cool Blue 6. "strength comes from within" 7. Sweatpants, Tens unit, pain meds 8. Just one? Hmmm. Methadone. 9. Understanding. 10. PAIN
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