#spoonielife

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Whenever I go to any events I always wonder how it could had been made accessible. I never used to think about this before my daughter became disabled.
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I enjoyed the seaplane event, but as I sat in the bleacher I realized we had parked on the grass very far away. Making it impossible for someone with mobility issues. Even if we could had parked near the bleachers, the uneven ground would had been a challenge.
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Only 10 minutes after we got there someone near us started smoking. Sure we were outdoors, but there were people all around. Is it right to make everyone in the area second hand smoke? Or if my daughter would had been there, she would had gone into a severe allergic reaction!
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The weather was beautiful but the sun was shining bright. There was not any shade except underneath a tree across a field from the bleachers. Actually a group of people were standing under the tree trying to get some shade. Anyone with POTS or sun sensitivity like my daughter would had never been able to enjoy the show because of the sun.
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There are so many events/activities my daughter can’t join anymore. I wish there was a way to organize events with as much accessibility in mind as possible.

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In the past few months I’ve tackled some hard imbedded issues in therapy and have felt very vulnerable but remind myself that you have to get worse before you get better. Confronting these things for the first time has been difficult but will be worth it if it helps my chronic pain in any way and my depression and anxiety hopefully in a drastic way! I feel it's important to talk about these things openly because depression is no longer the taboo it was and as result of that so many more people are being treated for mental illness and getting the help they need, saving lives by the day. So this is me making my contribution to the openness needed to #breakthestigma #speakout . Things have improved but not enough, suicide is still one of the biggest killers in the UK so we need to promote the benefits of seeking help.
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As well as simply talking about these issues I wanted to share how in tackling these issues my depressive episodes have become so few and far between. Since I started therapy I’ve only had a few and at that I haven’t had them for any longer than 24 hours in comparison to the week long ones I had before. I’ve only been getting help for these specific issues for a few months and already it has improved my quality of life dramatically. You don’t realise the good unburdening yourself can do to your psyche especially in the case of childhood trauma. Seeking help could be the best thing you ever do, it has been for me 💛
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#spoonielife #spoonie #spoonieproblems #spoonies #spooniesupport #chronicillness #chronicpain #depression #depressionquotes #therapy #counseling #mentalhealth #mentalillness #mentalhealthawareness #health #recovery #recoverywin #recoveryisworthit #quotestoliveby #quotes #quote #quotesofinstagram #quoteoftheday #edrecovery #bodypositive #bodyimage #bodypositivity #mybodystory

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Wanted: Featured Guest Posts, share your story on my blog!

Over and over again I hear how people felt alone and isolated with their illness until they found others who are going through the same thing - people who understand them.

I know what that feels like. I remember the relief I felt when I discovered I wasn't alone in my struggle.

I'd love to share your story on my blog. I'm looking for guest posts, whether it's about your chronic illness journey so far, the struggles you face on a day to day basis, how you cope, the victories you're celebrating, raising awareness for your condition, or anything else you'd like to share.

Please send me an email with your story (email button in my bio up top). You can remain anonymous on the blog if you'd prefer to. I don't mind.

Please include: which name I can use for you, a blog or profile you'd like me to link to so people can find you online, your story and no more than 3 photos you'd like to include (photos and links are optional).
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🌟 Visit my blog! Chronicallyhopeful.com
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#ChronicallyHopeful #mecfs #pwme #RoadToRecovery #Spoonie #theunchargeables #sickgirl #chronicillness #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #guestpost #InvisibleIllness #lowbattery #StrongerThanYouThink #chronicillnesswarrior #ButYouDontLookSick #chronicillnessblogger

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Top Tip Tuesday! Listening to your body to rest is not giving up. Rather you're listening to and responding to what your health needs in that moment. ⠀

Thanks to Kate H for this weeks Top Tip.

#chronicillness #blog #newblog #couchlife #homebound #bedbound #friends #support #toptip #tip #advice #rest #selflove #kind #community #spoonie #spoonielife #invisibleillness #inthistogether #talkaboutit #shareyourstory #friendsinthefog #fitfog

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Nice way to get the day started, Fuel Protioats, something warm on a cold day, tbh this needs to be at least twice the size so I'll have to see what else I can eat haha.

#fight_ms_till_ragnarok #protioats #protein #breakfast #porridge #fuel #fuel10k #oats #fitness #fitfam #healthy #wood #coldday #autumn #cold #goals #motivation #success #gains #multiplesclerosis #ms #mswarrior #spoonie #chronicillness #chronicpain #invisibleillness #spoonielife #chronicfatigue #depression #anxiety

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Yet another #bedselfie while testing out my #vonblucosmetics lippy from my #beautyheaventurns10 haul. Really cute packaging, good staying power. Thank you @vonblucosmetics and my @beautyheaven fam 😍
#rainbowstyling #bluehair#yesfilter #lipsticklover #spoonie #spoonielife #bedlife

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Лечение включает лекарства, чтобы уменьшить признаки и симптомы болезни Бехчета и предотвратить серьезные осложнения, такие как слепота. .
🤓Симптомы болезни Бехчета варьируются от человека к человеку. Они могут исчезать и повторяться сами по себе.
Симптомы со временем могут стать менее выраженными.
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😓Не существует излечения от болезни Бехчета. Если у вас умеренная форма заболевания, лекарства будут нужны для контроля временных вспышек при боли и воспалении. Возможно, вам не придется принимать лекарства между вспышками.

Во время обострения применяются:
📌Кремы для кожи, гели и мази с гормонами для лечения язв, чтобы уменьшить воспаление и боль. .
📌Рот полоскается. Специальные средства для полоскания рта, содержащие гормоны и другие средства для уменьшения боли во рту, могут облегчить ваш дискомфорт.
📌Увлажнение глаз и капли с гормонами или другие противовоспалительные лекарства, могут облегчить боль и покраснение в глазах, если воспаление мягкое.
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Если ваши признаки и симптомы более серьезны, понадобятся лекарства для контроля признаков и симптомов болезни Бехчета во всем вашем теле, в дополнение к лекарствам для временных вспышек.

Системные методы лечения: болезни Бехчета .
📌С артритом может помочь справиться колхицин. .
✅Если у вас умеренная или тяжелая болезнь Бехчета, ваш врач может назначить: .
📌 Глюкокортикоиды - они могут уменьшить воспаление, вызванное болезнью Бехчета. .
🤓Признаки и симптомы болезни Бехчета, как правило, повторяются, когда гормоны это единственное лечение, поэтому к ним часто добавляют цитостатики. Помешав иммунной системе воздействовать на здоровые ткани, цитостатики уменьшают воспаление. .
📌цитостатики, которые могут играть роль в борьбе с болезнью Бехчета, включают азатиоприн, циклоспорин А и циклофосфамид. .
📌лекарства, которые изменяют реакцию вашей иммунной системы. Интерферон альфа регулирует активность иммунной системы для контроля воспаления. Он может использоваться отдельно или с другими препаратами, чтобы помочь контролировать язвы кожи, боль в суставах и воспаление глаз
⬇️⬇️⬇️

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A bit late but i think you all understand how #spoonielife can be.. 😊
Day 6 of #SpoonieYogaTribe 👊
#legsupthewall
QOTD: WHAT ADVICE WOULD YOU GIVE SOMEONE WHO JUST FOUND OUT THERE A SPOONIE?
Really enjoy the good days.
Be patient with yourself, you are doing the best you can and thats enough.
Find support, from family, friends, supportgroups.
And of course i recomend them to try yoga and join the amazing yoga/spoonie community here on ig 👊🤗💗
Lovely spoonie Hosts: 🥄 @sleepysantosha
🥄 @theycallmegumby
🥄 @life.with.kimberli
🥄 @weall_floaton

Generous Sponsors: 🎁 @matcha.now
🎁 @shideawords
🎁 @positivecreationss
🎁 @baekiiara 🎁 @sleepysantosha - #regrann - #regrann - #regrann #chronicillness #yoga #yogatherapy - #regrann - #regrann

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Chronic fatigue - it's not all in your head, it's in your gut. To read about the research linking CFS with gut dysbiosis go to our website and click on the health guide blog to find the article. It seems fermented probiotics like kombucha (pictured) amoungst other things may help alleviate some of the symptoms. #YourSecondBrain #GutHealth #CFS #Selenohealth

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Chronic illness tip... ❤️ Jen x ---------------------------------------------------
🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio.
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#TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick

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This was me on Saturday I had to be out from early morning until the dark of night. I made an obligation to help & attend an event one of my closest friends was holding. I had been tirelessly helping get things together and aquire donations from people/stores/businesses/ect for a cancer fund raiser tricky tray for months.. which was intensely difficult and mentally & physically exhausting for me. It flared up my illnesses, spiraled me into depression & amped my anxiety to the max. I couldn't let people down for the event, but I really wasn't up to going, I was in awful pain all day. Plus my anxiety was crazy & I felt so sick. But now I'm paying for it all big time.. this pain is so intense I want to crawl out of my body. I feel so freakin sick. I know this is going to last for who knows how long, because I always have to pay for pushing my body too far.. still haven't talked about all the new screwy blood tests and all, not that most people ask (aside from my fellow spoonies).... #Fibromyalgia #Lupus #ChronicPain #fibro #FibromyalgiaWarrior #LupusWarrior FibroLife #FibromyalgiaSucks #ChronicPainSucks #LupusSucks #LupusAwareness #FibromyalgiaAwareness #AutoImmune #AutoImmuneDisease #chronicpainwarrior #chronicillness #cancer #cancersucks #cancerwarrior #warrior #fighter #Spoonie #SpoonieLife #Pain #EverydayStuggle #fight #ThisIsMyLife #ThisIsMyFight #ForeverInPain #findacure #thestruggleisreal

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Yay!
Finger sticks every 2 hours and I finally got one where I didn’t need insulin! My blood sugar is under 150!
#hospitaladmission #type2diabetic
#hyperglycemia #highbloodsugar
#spoonie #sickchicklife #spoonielife #callingmymom #spooniecorn

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@emmy97xox bought me a gorgeous little cup plant. It looks so cute on my bedside table! I love it, it’s always nice to have something pretty to look at, it makes me feel better ❤️😻😍 #cup #plant #red #flower #bedside #table #liftsmyspirits #feelbetter #happy #sopretty #thankyou #houseplant #spoonie #spoonielife #spooniesmile

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Gotta find my rhythm again. This body held up well enough for the festival this weekend but now I have a full end to this month to sustain my energy for. I gotta maintain the strength I have and start converting my remaining fat to muscle so my efforts aren't wasted. Pain management this time of year starts to be a real challenge, but hopefully focusing on balancing my food, exercise, work, school, and life will help in addition to adjusting my medical marijuana dosage-- I don't medicate nearly enough in quantity or intensity for my injuries + illnesses in order to accommodate my desired level of activity (welcome to a life of managing disabilities), however I do have some re-prioritizing to organize so I can accomplish as much as possible in this body of mine. My mantra this week: I can do anything but not everything, and it's all good. #chronicillness #chronicpain #chroniclove #MODFitness #SexDrugsMindBodySoul #balance #adapt #IWILL #sisepuede #pushups #spoonie #spooniefit #spoonielife #fitphx #fitspiration #fitspo #igersphx #onepiece #mantramonday #mantra #itsallgood #staylifted #1620 #its420somewhere #MMJ #MMJaz #bw #wholelottaHOOAH #HOOAH #strengthandconditioning

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T H I S L I F E

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Mt body is being a diva again...at 3am. Woke up to my knee screaming for attention this time. #painsomnia #cantkeepittogether
#chronicpain #chronicpainproblems #warrior #zebrastrong #chronicillness #spoonie #spoonielife

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Today was the first day since the surgery that I woke up feeling a little bit better! I am in bed in a lot of pain now but it was really nice to have a few hours of relief. I put some makeup on and went and caught up with some friends, it was really really nice. Hopefully there will be a lot more days like this :)
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#crps#fibromyalgia#crpsawareness#crpswarrior#crpsfighter#complexregionalpainsyndrome#fibro#fibromyalgiaawarenes#fibromyalgiawarrior#depression#anxiety#socialanxiety#gad#generalisedanxietydisoder#generalizedanxietydisorder#mentalhealth#disability#invisibleillness#chronicallyill#sick#invisibleillness#spoonie#spoonies#spoonielife#rsd#selflove#disabled#disabilityawareness#selfie#goodday#happy

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Πολλές φορές, οι άλλοι αδυνατούν να κατανοήσουν τη μάχη που δίνει κάποιος με μια αόρατη ασθένεια.

Η @beautifullybrokenbrain μάς δείχνει πώς εκείνη παλεύει με την #Ινομυαλγια. Συνεχείς πόνοι, θλίψη και καθημερινός αγώνας. Και λέει: "κάνεις δεν επιλέγει να ζει έτσι, όμως είναι κάτι που πρέπει να κάνουμε, να ζήσουμε". #ΧρόνιαΝοσήματα #ΧρόνιοςΠόνος #ΧρόνιοιΑσθενείς #Υγεία

Credit to @themightysite : It can be hard for others to understand what it feels like to struggle with invisible illness. @beautifullybrokenbrain shows us what fibromyalgia feels like to her: "constant pain, misery and daily struggles." She says that "no one chooses to live this way but it's a life that we must live." And she wants us to always remember, you are never alone in this fight. ••• #fibromyalgia #fibro #spoonie #spoonielife #chronicpain #chronicillness #chronicillnesslife #chronicillnesswarrior #depression #anxiety #invisibleillness #invisibleillnesses #invisibleillnesswarrior #chronicillnessawareness #spooniestrong #spooniecommunity #spooniewarrior #fibrofighter #chronicfatigue #chroniclyme #lupus #illness

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After being proud of my body for only having a small reaction to the hair dye last night, I've woken up itchy as hell and covered in welts. The antihistamines have eased up the rash but my chest is still really tight 😭 #chronicpain #chronicallyill #chronicillness #invisibleillness #crohnsdisease #crohns #allergicreaction #itchy #hives #spoonie #spoonielife #spooniestrong

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A couple things I don't normally talk about... because they are quite personal... I decided to share with you all tonight. 1) I love playing the piano. LOVE PLAYING. The only issue is, with #fibromyalgia , my joints and tissues in my hands and arms begin to swell and my nerves turn into sharp knives. This is a pic of me icing my hand after playing the piano for 20 minutes. Did I love it? Enjoy it? YES!!! Will the pain keep me up at night and give me problems for the next 3-4 days....? Ya. Will I play again? Yep! 2) I keep losing a ton of hair. No matter how many vitamins I take- it keeps falling out but the handfuls. I now have several bald spots in my scalp... and also several bald patches in my eyebrows. I cover them up well so the bald spots/patches are not easily seen... but they're still there. I just want all my fellow sufferers to know that you are not alone. This journey is a long one. There's always going to be things that will bring you down and make you feel discouraged or beaten. But just know you're not the only one feeling this way!!! There's hundreds if not THOUSANDS of us!!!!! We can make it one more day. We can smile one more time. We got this. Kinda. Just don't ever give up. #spoonie #spooniefamily #spoonielife #spooniemom #sodsucks #sphincterofoddidysfunction #chronicillness #pancreatitis #liverissues #chronicpancreatitis #fibromyalgia #invisiblepain #warrior #survivor #chronicpain #chronicpainwarrior #invisibleillness #painsomnia

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Wishing you all a great Tuesday ❤️ Jen x ---------------------------------------------------
🌟 WIN unique chronic illness clothes from The Unchargeables Shop. Link to giveaway in bio.
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#TheUnchargeables #Spoonie #unchargeables #chronicillness #Spoonies #SpoonieLife #ChronicPain #ChronicFatigue #disability #chronicpainwarrior #InvisibleIllness #autoimmune #supportgroup #lowonenergy #lowbattery #StrongerThanYouThink #chronicillnesswarrior #autoimmunedisease #fibromyalgia #raredisease #pcos #endometriosis #migraine #butyoudontlooksick

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When you think you're ready for a little adventure outside your bedroom, but you forget that you're photosensitive 😨😰😷
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Padahal barusan ga kena sinar matahari langsung cuma kena udara panasnya doang kulit muka dan tangan langsung keluar ruam merah. Langsung ngadem di kamar sebelum ruamnya tambah meluas dan migrennya menjadi kayak kemaren lagi 😑😕
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Duluuuu... Ada sebagian orang yang selalu bilang Markonah super lebay dan ada juga yang bilang Markonah lagi perawatan kulit saking seringnya menolak untuk berada di bawah sinar matahari langsung. Meski lengkap dengan peralatan perang (masker, topi, sunblock, payung, kacamata), kalo tidak penting2 banget, Markonah memilih menghindari paparan sinar matahari langsung untuk mencegah flare. 🔸
Sampe suatu saat mereka percaya kalo Markonah bukan lebay dan ganjen ga mau kena sinar matahari. Mereka liat dengan mata kepala sendiri saat kulit Markonah mulai keluar ruam merah, tiba2 lemes, sakit kepala, dan sakit matanya ketika terpapar matahari langsung cuma 5 menit. 🔸
Menurut penelitian para ahli, pada penderita Lupus, sinar UV menyebabkan sel-sel kulit untuk mengekspresikan protein tertentu di permukaan kulit mereka untuk menarik antibodi. Antibodi pada gilirannya menarik sel darah putih, yang menyerang sel-sel kulit dan menyebabkan peradangan. 🔸
Sensitivitas pada sinar matahari ini menyebabkan ruam dan kondisi kulit lainnya seperti terbakar sinar matahari. Pada penderita Lupus Sistemik, fotosensitifitas ini juga dapat memicu flare, termasuk nyeri sendi dan kelelahan. Jika dibiarkan, kondisi ini dapat menyebabkan kanker kulit.
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Begituuuu... Jadiiii, jangan heran kalo Markonah seringnya dipingit di siang hari dan gentayangan di malam hari yeee... 😂 😂 😂 🔸 🔸
#photosensitivity #uvlight
#SLE #autoimmunewarrior #chronicpainwarrior #butyoudontlooksick #lifetimebattle #livingtothefullest #spoonielife #storyofmylife

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