Posting this purely because I don't think my hair has ever looked so good 😂sorry for the vanity! Riding the post holiday crash. Can't say I'm doing it very gracefully though. Yesterday was one of those days where I couldn't keep my emotions in check and I cried numerous times. For some reason when I'm really really flaring I become super emotional. I don't know why but I sort of become a bit like a toddler and burst into tears for stupid things and all I can say between sobs is 'I'm tired' 😭today feels like it's going to be very much the same despite having a good 11hr sleep last night 😴 Hope you guys are feeling ok and have a great weekend 😘 #prague #wanderlust #adventure #travel #longhair #blonde #longhairdontcare
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Today’s diffuser blend. 👏🏼 - > Frankincense: Balances emotions and helps with depression. Promotes a healthy immune system/cellular health. > Lemongrass: Balances emotions and smells wonderful. > Copaiba: Reduces lain & inflammation, good for arthritis/gout/muscle cramps, eases respiratory issues, good for those with autoimmune disorders, Balances emotions, and helps with anxiety. (Basically everything I need from an oil. 😂) > Vetiver: Increases concentration & focus, helps with depression and anxiety, eases irritability, and balances emotions. > Spearmint: Eases with respiratory issues, increases focus, helps with depression & fatigue, relieves stress or nervousness, helps with headaches/migraines, and balances emotions. - What was in your diffuser today?
44 1
Met my goal of 15 minutes on the elliptical before work every day this week! Last week, my legs were aching from top to bottom after being on the elliptical every day. This week, my calf muscles are so tight I can barely stand to walk. I miss running. #ellipticalworkout #gentleexercise #fibromyalgia #jointhypermobilitysyndrome #chronicmigraine #chronicdailyheadache #chronicnausea #iwishiwasrunninginstead
14 1
It’s that time of the month and this blend is saving me! 🙌🏼 When I’m on my period, I have ridiculously intense cramps and lower back pain. They can get so bad that I’m bent over or curled up in a ball from the pain - even serious strength ibuprofen or Midol doesn’t do a thing. 🙄 Well, let me tell you - this blend DOES! I apply a generous amount to my lower abdomen and lower back every hour or two. Not only does it help the pain, it gets rid of it completely!!! I love being able to say that 3 days into my period and I haven’t taken a single pill for pain, PLUS my mood is 10x better than it usually is around this time. 🎉 - 10 drops of each: ClaryCalm, Spearmint, Copaiba, PastTense, and Roman Chamomile. Topped with FCO.
21 2
One of my all-time favorite diffuser blends is as simple as this: Lemongrass and Purify. 🙌🏼 - > Lemongrass: Helps balance emotions when used aromatically, and smells amazing with Purify! > Purify: Kills germs & microbes, removes odor and cleanses the air, uplifts the mood and clears the mind, and helps allergies. - This is one of my favorite combos to cleanse the air in our home and make it smell so good! During a flu season like this I will also add a drop or two of Frankincense or OnGuard (or both)! 💪🏼
47 2
There are so many benefits to adding a few drops of citrus to your water each day! I usually travel with a glass or stainless bottle, but forgot it this time. I grabbed this glass bottled water from Whole Foods for $2.50 and just refill it once it’s empty! 🙌🏼 Remember to only add oils to your water/beverages in glass or stainless containers, and if you forget it/don’t have one - this is a super quick, easy, and inexpensive way to pick one up! Today I went with 3 drops of Lemon and 3 drops of Wild Orange. 🤤😍 - > Lemon: Aids in PH balancing & lymphatic cleansing. Helps with Edema & water retention, heartburn and acid reflux, allergies, balancing emotions, and Gout/Rheumatism/Arthritis. (YES PLEASE! 🙌🏼) > Wild Orange: Relieves stress, heartburn, and aids in healthy bowels. Increases creativity and productivity, while giving you a boost of energy, and is a great natural detoxifier! - Not to mention these two taste SO good!!! What are your favorites to add to your water or other beverages? Share them below so we can all try!
46 4
This week marks a very important time in my life. 4 years ago I spent this week in the hospital, unable to move, eat more than a few bites, say more than a couple words, or even pee. I missed the first week of my junior year of college, couldn’t make the trip to SLC for @altsummit that had already been booked/paid for, and felt like a human pin cushion/science project laying there while doctor after doctor came in to look at me and examine me, poke me for tests, and so much more. It was a really hard week, but a really important one also. 4 years ago today, I began my journey with active Behçets. 💪🏼 As a genetic autoimmune disorder, it’s something that I’ve always had, but in 2014 it took a page out of Miley’s book and came in like a wrecking ball. 😂 It took me close to 6 months after that week to recover to some form of normalcy and to this day, my life has never been the same as it was prior to my hospital stay. Since this week 4 years ago, I’ve had more hospital trips than I can count, more prescriptions, tests, and sick days than most people have in two lifetimes, and have received diagnoses of additional autoimmune disorders. BUT! I’ve also learned more about life, health, compassion, understanding, kindness, trust, love, friendship, and myself since that week than I ever thought possible. 💕 I love the body God has given me, and I love the autoimmune disorders He has presented me with as opportunities to share and help others. I am grateful for the good health I do have and hope every day that I can be a positive voice to those that are struggling. Remember - not all disabilities are visible, people are struggling with things you know nothing about. So show everyone kindness and support, you never know how much they need it. If you’re struggling, I’m rooting for you. You’ve got more strength in you than you know, and IF GOD BRINGS YOU TO IT, HE’LL BRING YOU THROUGH IT. He gave you this opportunity because He knows you’re strong enough to handle it and use it for good. 💕 Happy Thursday, friends. (And if you follow all of my accounts, forgive me, but I’ll be posting this across them all today because I’m celebrating! 🎉)
106 12
This week marks a very important time in my life. 4 years ago I spent this week in the hospital, unable to move, eat more than a few bites, say more than a couple words, or even pee. I missed the first week of my junior year of college, couldn’t make the trip to SLC for @altsummit that had already been booked/paid for, and felt like a human pin cushion/science project laying there while doctor after doctor came in to look at me and examine me, poke me for tests, and so much more. It was a really hard week, but a really important one also. 4 years ago today, I began my journey with active Behçets. 💪🏼 As a genetic autoimmune disorder, it’s something that I’ve always had, but in 2014 it took a page out of Miley’s book and came in like a wrecking ball. 😂 It took me close to 6 months after that week to recover to some form of normalcy and to this day, my life has never been the same as it was prior to my hospital stay. Since this week 4 years ago, I’ve had more hospital trips than I can count, more prescriptions, tests, and sick days than most people have in two lifetimes, and have received diagnoses of additional autoimmune disorders. BUT! I’ve also learned more about life, health, compassion, understanding, kindness, trust, love, friendship, and myself since that week than I ever thought possible. 💕 I love the body God has given me, and I love the autoimmune disorders He has presented me with as opportunities to share and help others. I am grateful for the good health I do have and hope every day that I can be a positive voice to those that are struggling. Remember - not all disabilities are visible, people are struggling with things you know nothing about. So show everyone kindness and support, you never know how much they need it. If you’re struggling, I’m rooting for you. You’ve got more strength in you than you know, and IF GOD BRINGS YOU TO IT, HE’LL BRING YOU THROUGH IT. He gave you this opportunity because He knows you’re strong enough to handle it and use it for good. 💕 Happy Thursday, friends. (And if you follow all of my accounts, forgive me, but I’ll be posting this across them all today because I’m celebrating! 🎉)
41 8
Nothing worse than buying cute new slippers... and then they’re too small!! 😭 I had an appointment at the podiatrist on Tuesday after being told by my physio that I needed insoles for my classic EDS 🦓 flat feet etc and because my ankle joints are so weak/Hypermobile I use my feet to support/compensate for them much more than I should. I was a bit nervous about the appointment, having had experiences with people not knowing what EDS is before and having met with lots of bad medical professionals in the past but the appointment went really really well and she knew all about EDS and said she was surprised that I don’t get more trouble with my ankles/sprain them more often 💗 the difference with the insoles is incredible! But as I don’t go out much, I needed to buy some slippers so that I can wear my insoles all the time indoors.. but unfortunately these unicorn 🦄 ones are too small. I have another boring pair coming soon but if those are too small/don’t work with insoles then it looks like I’ll be hunting down a boring granny pair sometime soon 🙄 #ehlersdanlossyndrome #hEDS #medicalzebra #hypermobility #jhs #jointhypermobilitysyndrome
35 4
Hello... so just thought I would do a quick post on myself - just like a little introduction and it also answers some of the questions I get asked quite often. I moved to Mumbai over 12 years ago from London. The first few years took quite a bit of adjusting, but then I eventually adjusted myself to the ways of this crazy city (although there are still some things which I still can't get my head around). I've modelled in a few tv commercials - such such fun work. I eventually became a tarot reader (@itstarot), through which I've met a lot of people, learnt so much about their lives and frankly, it has led me to introspect about my own life as well. One other super important part of my life has been my love for cricket. Every being for generations in my family has love for the game - so it all rubbed off on to me too! And since I love cricket so much, I co-own @worldcricketchat! Now - the final two issues that dictate my life - health. I have endometriosis, it's been over 22 years - It's a painful condition in which tissue that normally lines the inside of the uterus - grows outside the uterus. Second issue - I have EDS - Ehlers-Danlos Syndrome (the Joint Hypermobility Syndrome kind), its been over two years now - that's also the reason why I use walking sticks (I get many messages asking me why I do). That's about it for now.. so, if you've got to the end of the post - yayy! Thank you!! . . . . . . photo credit @markbennington #me #biography #tarotreader #ilovecricket #cricket #bleedblue #femaletraveler #EDS #Endometriosis #PoTS #Mumbai #seemumbaimyway #Londoner #Mumbaikar #BritishIndian #Travel #explore #livelife #wanderlust #footprintsnoboundaries #walkingsticks #worldcricketchat #jointhypermobilitysyndrome #spoonie #totd #igersofmumbai #curlyhair
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This is me every night!!! For the last few weeks I physically cannot sleep at night. No matter what I do, I can even stay awake all day but sleeping at nighttime is a no for me. Very frustrating. I’ll fall asleep usually around 2:30-4am then only sleep in 20 min increments. I’m doing my best to get some sort of routine in my life but this sleep schedule is messing it all up. I always laugh when someone says to me oh you have that illness that means you sleep all the time. I reply with I wish 😂 #mecfs #myalgicencephalomyelitis #fibromyalgia #jointhypermobilitysyndrome #spoonie #cantsleep #chronicillness #mylife
30 5
Prague, you have been awesome af! Going away for my birthday was such a fun exciting thing to do, it's been such a wonderful trip and I've loved every second of it! Whilst I'm sad to leave an awesome city behind, I can't deny I am also very excited to get back home to our sweet wee Maya Moo and our lovely bed...because the hotel bed was not a comfy one! Currently curled up in the departure lounge and planning on dozing while we wait the 2hrs before we take off and head back to London... ✈️ #prague #selfie #wanderlust #adv#adventuresof2018 #adventure #explore #makingmemories
129 2
Another gym day, another kit from Reebok 🐆Always a penchant for a bit of Leopard print. Day 2 of PT this week. @melodyehsani X @reebokuk @reebokwomenuk collab #ehlersdanlossyndrome #ehlersdanos #hypermobility #JHS #jointhypermobilitysyndrome #fitness #wellbeing #health #gym #reebok #life #love #bodypositive
63 4
Staring my day rubbing this @blueridgehemp oil all over my wrists. I feel like crap physically I know I have been going too hard but sometimes it seems impossible to find rest. So we push on 👐✨🐝 #cbd#mmj#colorado#hemp#710#rheumatoidarthritis#jointhypermobilitysyndrome#jointhypermobility#sjogrens#autoimmunedisease#autoimmunewarrior#spoonie
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Monday, September 21, 2015 For roughly 2 years, I secluded myself & experienced a level of near constant pain & fatigue that I never could have imagined. My life was dead as I knew it. I struggled alone due to my fears of reentering the world as a changed person. #ehlersdanlossyndrome #jointhypermobilitysyndrome #hashimotos #pots #chronicillness #chronicpain #depression #anxiety #confusion #seclusion #fuuuck
17 0
WATCH YOUR MOUTH... Hey Spoonie, how do you speak to, or about, your friends? I adore mine so I often tell them, and others, how wonderful, kind & funny I think they are. Because they ARE! Self deprecating humour aside, (something seemingly every Australian’s DNA is seeped in)... how do you speak to, or about, yourself in contrast? Confession time: I can be a REAL bitch. To myself. Up in my head I can get pretty downright nasty, actually. I think & say things I wouldn’t dream of uttering about a friend. One, because I’m not a mean person and two, because I wouldn’t be friends with anyone who I thought was that awful! Think about it, would you still be friends with someone who spoke to/about you in the manner that you speak to/about yourself? I’m no masochist (I’ve had a lot of therapy, ok?!) and so, with the way I speak to myself sometimes, I sure as shit wouldn’t be texting myself back! But the older I become, the better I’m getting at recognizing that this bad habit is neither constructive nor healthy. Negative self talk does not serve me in any way, and it doesn’t serve you either. My relatively new habit is to try & counter any negative self talk with some cold hard facts & a soft warm pep talk. . Just... be NICE to yourself. Send some ‘warm fuzzies’ your own way. . And if you hear a friend or fellow Spoonie talking smack about themselves, kindly interject with a “Hey! That’s my friend you’re talking about there.” Afford yourself the empathy I know you give to others so freely and just watch how you bloom as a result. . 🌸💚🌸💚🌸💚🌸💚🌸💚🌸💚🌸💚🌸 . . 📷: @drawnbymary .
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#ConnectiveTissueDisorder #CollagenDefect #StraightOuttaCollagen #Neuropathy #NervePain #Neuralgia #CRPS #ChronicRegionalPainSyndrome #Sciatica #POTS #PosturalOrthostaticTachycardiaSyndrome #POTsie #MCAS #HiddenIllness #MastCellActivationSyndrome #MCAD #Mastocytosis #Hypermobility ##Dysautonomia GERD #Chr#ChronicFatigue #CentralNervousSystemSensitization #NeuropathicPain #GERD #GastroesophagealRefluxDisease #CommonVariableImmuneDeficiency #EarlyOnsetOsteoarthritis #CFS #ChronicFatigue #JointHypermobilitySyndrome
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Ed gifted me the watch of my dreams for my birthday, isn't it just so beautiful?! 😍my mammy got me the gold bangle too, she got me a silver one for my 20th but we could never find a nice affordable gold one until this year and I think gold suits me more 😊 We explored a cemetery this morning and it was so peaceful, especially with the tiny wee sprinkling of snow. Prague has so much history and I think sometimes it might get forgotten in the rush to see other more popular touristy things but we enjoyed taking some time this morning to think about the past. Tbh though I have struggled to keep up today, the exhaustion has really kicked in and I couldn't really manage much else so we've taken it fairly easy and rested a lot. Tonight we are going to a restaurant with live jazz for an hour or so and then headed back home to bed! 😴 #henrylondon #watch #gold #prague #snow #barbour #travel #adventuresof2018 #makingmemories #wanderlust
107 6
No Sign of any abs yet 😂 but feeling body confident. Love my new bra too & leggings from @reebokuk @reebokwomenuk ✨ Comfy & Supportive. 'Wired' for my PT sesh today aka I have a heart monitor in place for 24 hrs. I'm the 1 playing patient today 🏥 #reebok #fitness #wellbeing #health #lif#life #hospital #nhs #heart #hearthealth #bodyconfidence #gym #personaltraining #life #hypermobility #ehl#ehlersdanlosrome #ehlersdanlos #jointhypermobilitysyndrome #JHS #zebra #longtermhealth #healing #love #happiness #joy
56 10
It snowed this morning but it's only a sprinkling...keeping my fingers crossed for more!!🤞 We're headed out now to explore some more, it's quite a chilly day so maybe we'll end up in another pub this afternoon! 🍻 P.s. This photo marks my wearing of jeans for the first time in approx 2 years (self image issues)...so that's interesting I guess. I wore leggings underneath too to keep me cosy 🤗 #prague #praguecastle #wanderlust #makingmemories #exploring #adventure
158 6
BURNIN’ DOWN THE NOUSE... Doing whatever I need to do to get through. My body temperature regulation is even more temperamental when I’m experiencing opiate withdrawals like this... a wet face towel turned frosty in the freezer helps me ride them out. Opioid withdrawal tips... anyone? . . . . #ConnectiveTissueDisorder #CollagenDefect #StraightOuttaCollagen #Neuropathy #NervePain #Neuralgia #CRPS #Sciatica #POTS #Dys#Dysautonomia #Hypermobility #Chr#ChronicFatigue #NeuropathicPain #CFS #ChronicFatigue #JointHypermobilitySyndrome #ChronicPain #Dysautonomia #ChronicallyIll #Spoonie #ChronicIllness #Spoonies #Fibromyalgia #FibroWarrior #InvisibleIllness #Ehl#EhlersDanlosSyndrome #EDS #InvisibleDisability #EhlersDanlos #InvisibleDisease
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•Serving been in bed for two days in agony but trying to stay positive realness• #chronicfatigue #chronicpain #jointhypermobilitysyndrome #invisibledisabilityawareness #badforbusiness 😪 #gottakeepsmilingtho
20 1
ZEBRA STRONG... “When you hear hoof beats think horses, not zebras.” Or so the old medical saying goes... it’s used to teach medical students how to think logically during diagnosis. Fair enough too - generally - life isn't an episode of "House M.D." Except when it IS. Minus the arrogant, witty, anti-social, pain-killer-addicted diagnostician. Boo. Such disappoint. Rare diseases are, as their name suggests, rare. But they do exist! That's why the Ehlers-Danlos Syndrome (EDS) community adopted the Tiger Pony™️ as its spirit animal. If you weren’t already aware, I have the Hypermobility type of EDS. Us collagen challenged, DNA-clusterfucks are well & truly 'medical zebras'. That is: very unlikely diagnostic possibilities. . My fellow medical marvels, I’m not ashamed to admit that I giggled like @ronfunch as I was making this (no judging, I didn’t sleep all night). I say we petition the International Animal Nomenclature Committee™️ to officially rename all zebras “tiger ponies”. That, or “Stripey McStripeFace”. Oh, and if anyone knows a misanthrope medical genius, would you please send them my way? Cheers. . . . #ehl#ehlersdanlosrome #ehlersdanlos #ehlersdanlossyndromeawareness #zeb#zebrastrong #zebrawarrior #zebra #zebralife #connectivetissuedisorder #hypermobility #hypermobilitysyndrome #hypermobile #chronicpain #chronicpainwarrior #chronicpainsucks #chronicallyill #chronicillness #chronicillnesswarrior #chronicillnesses #pain #painrelief #eds #jointhypermobility #jointhypermobilitysyndrome #spoonie #spoonielife #spoonies #spooniestrong #spooniecommunity
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These boots were made for exploring! 🏰 We went to Vyšehrad today and I don't think many tourists have researched this area because it's a wee bit out of town on the tram but it's so great and the views from the top of the castle walls are amazing! And it was SO quiet which was nice! I don't think I could cope with Prague in the summer as even now in the winter it is busy as heck 🙈so it was lovely to get away from those busier areas and have some time to ourselves 😊 We came home to the hotel mid afternoon and we're having a nice break for a few hours before we head out for dinner later this evening 😋 I am so tired from the cold - I think it zaps more energy trying to keep warm, and my legs are so sore and my hips achey from the walking but I'm enjoying every moment of our adventure and I know that really these niggles are so small that I'll not remember them when I look back on our memories; only how amazing it is to spend quality time with Ed and experience new things 👍 #adventure #prague #bootlove #makingmemories
119 4
Fibromyalgia sucks. I don’t know what it’s like to have pain so bad it is crippling but my daughter does. She was diagnosed at age 9! It’s not just “in the head” or “everyone has it” (true it’s common in adults but not that common in young children). She also has Joint Hypermobility Syndrome which causes her to have extreme bends in her joints which have resulted in bone breaks. These 2 conditions combined is torturous on her body. #fibromyalgia #fibromyalgiasucks #fibrosucks #mydaughter #jointhypermobilitysyndrome #pain #fracture #onedayatatime #mydaughterhasmorestrength #nothingisgoingtostopher #momofachildwithfibromyalgia #homeschoolmom #momlife
23 1
Long One... Gluten free oats with almond milk, banana and honey. Been stuck in a rut with food and being focused on good nutrition since Christmas. So wrote out a meal plan for the week it helps me stay on track if I don't have to think about what to eat. I injured my back over the weekend. My condition likes to surprise me with flare ups every so often and unfortunately for me it happened while deadlifting Saturday and I was in agony all day. Tears and everything. I'm still a little tender so this week I will doing lots of stretching, foam rolling and taking it easy with the weights till I'm healed. It shook me mentally and I beat myself up alot because I felt weak. But then I remembered I've come a long way from the lady that lived on tramadol and needed her husband to dress and help her get out of bed or bathe but I'm not invincible! Moral of the story.. Listen to your body and take care of yourself. #jointhypermobilitysyndrome #fuckyouchronicpain #lookafteryourself #fatlossjourney #ladieswholift #sheildmaiden
8 0
•📚👓🎵• ________ How the spoonie mobility challenged bibliophile who also loves music and a good cuppa spends her Sunday. _____________ #vinyl #records #books #col#coldplayer #arushofbloodtothehead #parachutes #vivalavidaordeathandallhisfriends #kol #kingsofleon #specs #eyebuydirect #coldplay #spoonie #fibromyalgia #jointhypermobilitysyndrome #cuppa #mug #tea #rollingstone(hbd Caleb🎂)
120 12
Loving Prague oh so much! We found a brewery in a monastery on the top of this hill so we sat and enjoyed a beer whilst taking in the gorgeous view 😍 #prague #adventuresof2018
118 10
***Marathon update*** 🏃🏼‍♀️💛👣 . This morning I ran my furthest ever - 9 mile loop of London landmarks...got a bit emotional approaching Tower Bridge!! Please help me raise money for YoungMinds - mental health matters, for everyone 💛❤️ . https://uk.virginmoneygiving.com/fundraiser-display/showROFundraiserPage?userUrl=HannahSmith1986&pageUrl=2 . #marathontraining #londonlandmarks #towerbridge #londoneye #theshard #bigben #stpaulscathederal #longrunlongsocks #virginlondonmarathon2018 #londonmarathon #thebighalf #marathonnotasprint #jointhypermobilitysyndrome #run #gotthis #thisgirlcan #mentalhealth @youngmindsuk @heads_together
26 0
Not my usual type of photo for my Insta gallery but I love it. Happy faces, cold winter days, walks on the seafront and babywearing Ivy in our backpack baby carrier. It’s the one and only time I’ve done it. Sadly my joints just wont manage her weight but I loved it for that 15 minutes! This photo says ‘Happy Devon Days’ to me xx . . . #parentsofinstagram #babywearing #babybackpack #getoutside #winterwalks #seafrontwalks #momentsofmine #selfie #portrait #motherofdaughters #hypermobilityspectrumdisorder #hsd #jhs #jointhypermobilitysyndrome #chronicillness #connectivetissuedisorder #devonadventures #aDevonchildhood #myfamilyadventures #mumsofinstagram #savouringjanuary2018
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It's ma 25th birthday!! And we're currently at the airport waiting to fly to Prague for 5 days!! Woohoo!! 🎉😁Ed is calling me a basic bitch for booking us a holiday for my birthday but it was cheap and I wanted to go somewhere with a greater chance of snowing but sadly the forecast isn't looking too promising... Ah well, totally excited and ready to go on our first adventure of 2018! (Don't let this fool you guys, I'm still very sick and feeling awful but as some of you know, I push myself to go on fun adventures and then deal with the crappy health as best as I can afterwards. We will be going at my pace as always and slowly enjoying seeing the sights whilst taking lots of breaks to rest in the hotel 👍) Have a great weekend you lovely lot! 😘 #birthdaygirl #birthdayselfie #selfie #blonde #basic #prague #adventuresof2018 #holiday
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Got some tension out and some adrenaline going at #onetakefitness tonight great session still wired from it haha. Celebrating that I got to 95kg farmers walk! My hands are dead though lol #ladieswholift #quirkygymwear #pinkiestrong #thisgirlcan #fuckyouchronicpain #quirkygirls #altgirls #jointhypermobilitysyndrome #notlettingtheillnesswin #onetakefamily #girlarmy
14 2
•🍓🎵• __________ Anybody with a good record collection will always be in love 🍓😍 vinyl is forever. _______ Meanwhile I’m relaxing in the midst of some sorta blizzard type winter storm thing{check my insta story}...freezing rain or sleet 🤷🏾‍♀️... it was raining ice. You could hear it coming down like shards of glass. Now it’s snowing and will hit subzero temps. Did I mention a mere 12 hours ago it was 61° F ________ Its no wonder as to why I’m struggling physically. Walking is a struggle currently my joints and muscles are protesting everything. _______ #peoplehopetribe #fibromyalgia #jointhypermobilitysyndrome #spoonie #vivalavida #vinyl #records #coldplayer #brickwall
125 2
I had to get kind of #creative with the @kttape this evening. While I was #practicing some #excerpts for auditions this week, my pinky’s joints all decided to #dislocate. Thank you EDS! 🦓🦓🦓🦓#ehlersdanlossyndrome #zebrastrong #spoonie #zebramusician #edsproblems #violist #orchestra #musicstudent #musician #chronicallyfabulous #violista #viola #chronicilness #chronicpain #ehlersdanlos #ehlersdanlosawareness #raredisease #jointhypermobility #jointhypermobilitysyndrome #dislocations
35 0
Today was a bad day 😷🙄 first week back at work has kicked my but. 👊🏻 Been to doctors and had more bloods taken, doctor thinks I may have glandular fever and that's why I have been so weak the past few weeks... glands were very swollen and tender when examined today 😩😩😩Ever feel like your always so poorly you can never tell when your 'extra' poorly or 'normal' people sick? E.g colds, flu, infections, I just always assume it's a flare or a fun new symptom. I need to get better at listening to my body. #anotherdaydone #forevernapping #chronicillness #chronicpain #chronicpainsurvivor #astma #jointhypermobilitysyndrome #hypermobility #fatigue #glandularfever #listentoyourbody
14 1
Hoping against hope that it snows for my birthday again this year and secretly hating to admit it probably won't as it isn't looking very likely on the weather forecast. My daddy said he saw snowdrops the other day and Ed and I saw crocuses in the garden at bunkerville; I'm not ready for spring to appear, I feel cheated of a proper winter this year! I'm so ready to move somewhere where it gets properly cold and snowy in the winter!!❄️ As a side note, I may have just splurged a little and ordered myself a new Barbour jacket (in the sale) as a birthday present to myself 😁I do have one already which my mammy bought for me 5 years ago, it's a different style and currently it's just a bit too tight for me since I put on weight the last couple of years (which I am in the process of losing). This new one is a more relaxed fit and as I continue to lose the weight it'll just look a little oversized which I am completely fine with as a lot of my jumpers etc are bought from the men's section - I love the oversized look! P.s. My jacket in the photo is a fatface one that I found in a charity shop for £5!!! 🤑 P.p.s. I forget my hair has gotten so long because most of the time it's in a messy blob bun 😂I only wear it down when I'm being presentable for the outside world 🙈 #snow #countrygirl #yorkshirelife #longhair #blonde #selfie
101 4
Made it through my hardest morning... one where I had to make it to an 8 am doctor's appointment. Hope I can keep it up the rest of the week and not let the exhaustion I feel take over. #ellipticalworkout #jointhypermobilitysyndrome #fibromyalgia #chronicmigraine #chronicdailyheadache #chronicnausea #iwishiwasrunninginstead
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ADRENLALINE FLUNKY... This is the face of someone who is absolutely “wired”, despite ZERO sleep for more than two whole days. I took this photo on the weekend after being awake for over 48hrs. Now, I may look alert (because I fucking am, anyone need their house cleaned?) but the dark circles under my eyes tell the real story... Welcome to the world of pain induced adrenaline surges. Well, kind of. As with all things chronic illness, it’s complicated. It can be like living on a rollercoaster 24/7, and I don’t mean the metaphorical “ups and downs” in life... I mean it’s like you are literally strapped in at Six Flags Magic Mountain & that white knuckle rush courses through you over & over... and over... but you’re, like, watching Netflix on the couch. My sleep “cycle” & I are my adrenal gland’s BIIIIITCH. What the epinephrine, a neurotransmitter/aka adrenaline, says = goes. Let me explain, because holy shit biscuits did it take me a while to research & wrap my head around why the hell this happens... and what I could possibly do about it. Side note: if anyone out there picks up on inaccuracies in my understanding of the biology, please correct me! We are ALL learning as we go. So, evidentially I have developed something called Central Nervous System Sensitization (or ‘overload’) following a car accident where my left shoulder was dislocated/injured, left permanently sublaxed (surgery isn’t an option because, EDS) & therefore sustained subsequent nerve damage. I developed this sensitization after what has now been 4 years of 24/7 nerve pain - pain that radiates from the left side of my face/neck, through my left shoulder capsule & in to my left finger tips. The very reason I am living in the US (I’m originally from Australia) is to access cannabidiol (CBD oil), the ONLY treatment I have found to work in all of this time... and boy, have I tried EVERYTHING. For a little bit of background information, studies show that over 75% of those with EDS (Ehlers-Danlos Syndrome: my genetic, connective tissue disease) have, or will develop, Dysautonomia: which, put simply, is dysfunction of the autonomic nervous system. CONTINUED IN COMMENTS BELOW 👇
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Friday, September 8, 2015 Driving can be an incredibly difficult task when you're experiencing extreme pain, light sensitivity, sound sensitivity & sciatica. Parenting with chronic illness presents a myriad of challenges. I have to remember to take it day by day, step by step. #ehlersdanlossyndrome #jointhypermobilitysyndrome #hasimotos #pots #migraine #chronicillness #chronicpain #parentingwithchronicillness #parentingwithchronicpain #lightsensitive
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We are now 1 full week into 2018. Within the last weeks I have read two books , started taking my medication again , started trying to eat properly again and started doing yoga for my hypermobility . Not trying to claim “ new year new me “ , I’m still the same cheeky ginger alky I always am . But I’m determined to fight off my depression/anxiety as much as possible and try my best for my hypermobility/chronic fatigue. It’s a long road to recovery but I’ll get there.I’m starting to take care of myself again. . . . .#yoga#l4l#2018#selfcare#mentalhealth#depression#anxiety#hypermobility#jointhypermobilitysyndrome#jointhypermobility#chronicfatigue#chronicpain#chronicallyliving#chronicwarrior#yogaposes#sportsclothes#recovery#determined#gettingbettereveryday
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I don't quite look like this today - imagine unbrushed dirty birds nest hair, pale face, huge dark circles plus pjs attire and you'll be somewhat closer to my present P.E.M state 😂 We drove home last night and I slept so much better in our comfy bed; I'm seriously so grateful for my parents buying us that bed, every time we come home after some time away we re-appreciate just how good it is! 🤗 I've actually had what I would call a very successful morning despite feeling 💩I was on the phone for *an hour* sorting out a bank account and broadband problem. For anyone who knows me, the fact I managed to speak to multiple strangers on the phone for so long is hugeee! I'm very mentally drained now though from having to converse for so long 😱but I'm pleased with my productivity, especially when feeling rough to begin with, and now I can rest all afternoon feeling like I did something useful today💪 The rest of this week is to be spent resting in preparation for something huge happening on my birthday this coming Saturday! Eeeeee! I'm excited! But also very aware that I need to gather a few spoons before I can even think about managing the upcoming fun... Let's just say I definitely didn't think about the post Christmas crash when I made my birthday plans 🙈 #selfie #blondehair #blueeyes
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10 minutes on the elliptical to start the day. I'm going to try to do that all this week... not sure if I can, I think my extreme fatigue is all over my face, and I got plenty of sleep last night! I am probably going to have to break up with gabapentin. #jointhypermobilitysyndrome #fibromyalgia #chronicmigraine #chronicdailyheadache #gentleexercise #sotired #wishiwasrunninginstead
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