#dysautonomia

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When I am sick or in pain, I am still worthy of love ❤️ • This is a mantra that I use often. Perfect health is not a prerequisite for love. There are people in this world who will love you exactly as you are in this moment. You don’t have to change a thing. It’s just a matter of finding the right people! • If you are not experiencing this in your life right now, I would like to invite you to join my online yoga community called @spoonieyogatribe. You can follow on Instagram for free and interact with other people who know what it’s like to live with daily health struggles. Knowing that we aren’t alone in our pain can feel like medicine for the soul. • If you’d like to go even deeper, you can sign up to try one week of the monthly yoga membership for free. See how you like it. With your membership, you get access to exclusive yoga and meditation classes, and there are more opportunities to connect with me and the other members in a more private setting. I have been so impressed by the compassion and kindness of everyone in this community, and I would love for you to join us. In this community, we value self-acceptance over self-improvement. So come exactly as you are. You are enough. You are worthy. You are wanted. You are loved 🙏🏼❤️ • You can find out more about Spoonie Yoga Tribe at the link in my bio @sleepysantosha 👆🏼See if its a good fit for you, and let me know if you have any questions.
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Hey everypawdy, check out my new harness!! My mama got this for me so I could help her every day. The teal color of my harness represents the rare disease ribbon! She was diagnosed with 2 rare diseases as a child. She has been struggling a little bit recently and needs some extra help walking and staying balanced sometimes.💕 #assistancedog #leggcalveperthes #dysautonomia
Always hope. But hope without attachment to the outcome. It’s the attachment that gets us in trouble and crushes our spirits. We have to hope with faith - faith that whatever is happening is indeed happening for you. And that it’s all coming together even when it feels like it isn’t. But keeping an open mind to the outcome, that flexibility is so key in allowing the universe to deliver what we want (and then some). 💕
How can having a health coach help me? Say you just left the doctor’s office. He says you have a thyroid disorder and you will need medication for the rest of your life. Your head is spinning. You aren’t sure you even understand what the thyroid does, let alone why it isn’t working properly. Now you’re faced with filling a prescription for the rest of your life. Is swallowing this little pill going to fix your disorder? You’ve been feeling awful for so long, you’re feeling desperate at this point. But why is it that one little pill is all the doctor thinks it will take to make you feel better? Isn’t there more you can do? Is your disorder what is causing x, y, z symptoms? How can you make sure this prescription gets rid of all your physical struggles? Lots of people feel like this. Overwhelmed, hopeful, nervous… having a coach to support you through this transition of learning to learn with your diagnosis can provide all the support you need. A coach can help you learn to feel confident about your diagnosis and how to read your body in order to maximize healing. There are so many tools and methods we can teach you! Even if you desire to live a healthier lifestyle, balance your hormones, achieve fertility, or lose weight—ANY reason you have to want to feel better, live longer and happier deserves the support to see that dream come true. As health coaches, we love to come alongside you and help you make small but lasting changes to help move you forward towards that goal. Having a fresh set of eyes often helps to help you narrow down triggers and trouble spots that keep you from gaining that momentum. And we don’t just talk about nutrition! Health coaches are all encompassing- we are trained and taught on navigating relationships, career goals, self care—basically anything that impacts your health, physically and emotionally. We are part teacher, part cheerleader and part friend. It’s the perfect balance!
Can you believe these are all of my clothes for the summer? Until now, I've been living in old teeshirts and athletic shorts. While I don't think that's a bad thing, it kills my motivation. But I would spend forever looking at my closet trying to put things together and end up with nothing because of brain fog. The good news is I think I've found a solution! This stack of clothes is all I have for the summer, and it has allowed me to feel a little bit put together every day regardless of my symptoms. I took my entire closet and downsized it into two "capsules" with some extras, and I no longer spend forever looking at my closet hoping for an outfit to pop out of nowhere. Since dealing with chronic illness seriously complicates life, I am trying my hardest to simplify everything else. My first step was my closet, and it has already improved my mental crowding. If you would like to work on decluttering your life, check the link in my profile. I wrote a guide specifically for those dealing with chronic illnesses to make minimizing your closet easier on your mind and body. Do you think simplifying things around you could help reduce the clutter in your mind? Leave me a comment below! :) * * * * #minimalcloset #minimalism #simplifyyourlife #simplifyyourcloset #spoonieblogger #spooniebloggers #blogger #blogpost #writer #howto #tipsandtricks #declutteringtips #minimizing #decluttering #capsulewardrobe #chronicillnesslife #chronicillnessawareness #heds #ehlersdanlossyndrome #dysautonomia #chronicillnesstips #downsizing #declutter #zebrastrong #spoonietips
I found this headband that I got a few years ago from @elfcosmetics #cinderellacollection 👑 Most people know I have quite the sparkle, glitter, Princess obsession. I also glittered up my nails. Teeth/ear/eyes are giving me heck today so I thought a little sparkle might help. 💜 #selflovejourney #ptsdservicedog #panicdisorder #ptsd #ptsdsurvivor #sparklenails #glitternails #glittermakeseverythingbetter #agoraphobic #agoraphobia #chronicpain #selfcarematters #selfcareisntselfish #bopo #bopowarrior #plusisequal #headbandaddict #iwanttobeaprincess #tryingmybest #cfsme #dysautonomia #potsie #servicedogintraining #servicedogsofinstagram #rapesurvivor #ptsdwarrior #mentalhealthmatters #mentalhealthwarrior Have a great Monday 💜
I found this headband that I got a few years ago from @elfcosmetics #cinderellacollection 👑 Most people know I have quite the sparkle, glitter, Princess obsession. I also glittered up my nails. Teeth/ear/eyes are giving me heck today so I thought a little sparkle might help. 💜 #selflovejourney #ptsdservicedog #panicdisorder #ptsd #ptsdsurvivor #sparklenails #glitternails #glittermakeseverythingbetter #agoraphobic #agoraphobia #chronicpain #selfcarematters #selfcareisntselfish #bopo #bopowarrior #plusisequal #headbandaddict #iwanttobeaprincess #tryingmybest #cfsme #dysautonomia #potsie #servicedogintraining #servicedogsofinstagram #rapesurvivor #ptsdwarrior #mentalhealthmatters #mentalhealthwarrior Have a great Monday 💜
Good morning Minnesota! I love this rainy weather! (Please excuse my messy hair) Got some groceries before my first appointment at #Mayo and I am trying to stay zen. Anyway... enjoy some tourist photos and a 🌽 water tower. . . #dysautonomia #justbreathe #minneapolis #stpaul #minnesota #mayoclinic #chronic #chronicillness #lifestyle #katespade #tourist #nerves #gp #gastroparesis #ms #pots #broken #congenitalheartdefect #congenitallungdefect #lungdefect
Another day, another floor. 🧘🏻‍♀️ I’m feeling like I just finished a triathlon because I did my PT exercises which I incorporate into my yoga flow. I think I’ll just lay here for a while since my dysautonomia is having a major attitude. How’s everyone else doing today? Tell me sooommmeethin’ good! 💘💘💘 • #yoga #physicaltherapy #yogaeverydamday #pt #chronicillness #chronicpain #raredisease #disabledandcute #cripplepunk #eds #heds #hypermobileeds #ehlersdanlos #ehlersdanlossyndrome #pots #dysautonomia #hypotension #syncope #fainting #mcas #mcad #mastcell #mastcellactivationdisorder #mastcellactivationsyndrome #spoonie #spooniewarrior #zebra #zebrastrong #bendyaf #darkcomedy
Some days are harder than others! ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Today I will choose to remember the good and move forward. ⠀⠀⠀⠀⠀⠀⠀⠀⠀ Of course it doesn’t hurt to get some relief from our Hemp Extracted CBD!
"Yea, though I walk through the valley of the shadow of death, I will fear no evil; For You are with me; Your rod and Your staff, they comfort me." ----Psalms 23:4 ______ This is a very powerful scripture. One I hold dear to my heart. So much so, I have it tattooed on the outside of my left forearm. Ironically, the same arm my picc line is on and I do TPN Nutrition with. ______ My faith and spirituality have carried me thus far. So many people say they don't know how I can stay so strong, but I can't take credit. I am not a religious person, I am a spiritual person. My God has carried me through so many hard circumstances and continues to carry me through this hard journey. ______ All I can do is take it one step at a time and put one foot in front of the other. To lean on my Higher Power as I understand him and take one day at a time. "This too shall pass." ______ #gastroparesis #gastroparesisawareness #gastroparesisawarenessmonth #gastroparesiswarrior #lifetakesguts #tpn #tpndependent #piccline #tubefeeding #malnutrition #autoimmunedisease #nocure #lupus #SLE #lupusawareness #lupuswarrior #fibromyalgia #dysautonomia #reynauds #mediport #bladderpacemaker #osteoperosis #hormonereplacementtherapy #menopause #ovarianfailure #onedayatatime #godisgood #faithful #godonmyside #godisgreaterthanlupus
@jen_wellness ・・・ Cookie Dough butter. Nut-free, gluten-free, dairy-free, vegan, paleo, etc. Because Monday’s toast needs more than avocado. * 1 tblsp coconut flour 1 tblsp unrefined coconut oil 1/2 tblsp of coconut nectar, maple syrup, or honey (if not vegan) Very small splash of vanilla extract or 1/8 tsp vanilla beans scraped from the pod or vanilla bean paste As many 100% unsweetened dark chocolate @santabarbarachocolate chips as you want (and I want all) Sprinkle of sea salt (optional) * Spread on toast or eat straight from the jar. Keeps well in the fridge. Coconut oil can form small solids in the dough. If they bother you, leave out for 5-10 minutes while you practice your 4/8 breathing or a short meditation. A gentle suggestion from your neighborhood trauma therapist ;) * #ptsd #trauma #anxiety #depression #panic #worry #mentalhealth #chronicillness #chronicpain #eds #pots #dysautonomia #cancer #baking #chocolate #toast #cookiedough #paleo #vegan #nutfree #dairyfree #eggfree #glutenfree #mindfulness #invisibleillness #healing #grounding #selfcare #encouragerssociety #bekind
Cookie Dough Butter. Nut-free, gluten-free, dairy-free, vegan, paleo, etc. Because Monday’s toast needs more than avocado. * 1 tblsp coconut flour 1 tblsp unrefined coconut oil 1/2 - 1 tblsp of coconut nectar, maple syrup, or honey (if not vegan) Very small splash of vanilla extract or 1/8 tsp vanilla beans scraped from the pod or vanilla bean paste As many 100% unsweetened dark chocolate @santabarbarachocolate chips as you want (and I want all) Sprinkle of sea salt (optional) * Spread on toast or eat straight from the jar. Also delicious as an ice cream topping (note to self for later). Keeps best in the fridge. Coconut oil can form small solids in the dough. If they bother you, leave out for 5-10 minutes while you practice your 4/8 breathing or a short meditation. A gentle suggestion from your neighborhood trauma therapist ;) * #ptsd #trauma #anxiety #depression #panic #worry #mentalhealth #chronicillness #chronicpain #eds #pots #dysautonomia #cancer #baking #chocolate #toast #cookiedough #paleo #vegan #nutfree #dairyfree #eggfree #glutenfree #mindfulness #invisibleillness #healing #grounding #selfcare #encouragerssociety #bekind
The good ol days when my legs were functional and my horse was a butthead. Someday I'll get back to it! #goals #horsesofinstagram #memories #apha #overo #blackandwhite #equestrian #dysautonomia
😸 Some sort of half frozen woolly IKEA carpark cat 😸 ~ 😸 Lately I have been getting better and recording me frolicking around like the silly sod I am lately! I heard this question somewhere. “Why does she still eat with a feeding tube/gastroparesis/GI failure?” Because I can still eat! Not often and not much, of course, I’m not really into the market for unneeded holes into body parts. That’d be a bit odd, I reckon! But my partner and I still play at being the silly ol’ yuppie foodies we once were and love trying new places and visiting old favourites! We happen to live in a very good city to indulge ourselves in too. When things are being good for me, I can have bites of things or even eat whole small meals once a day, so quite a bit compared to what I sometimes have to deal with on other days! I still have a drain too since I can’t have a straight jejunal tube, so we make sure we have all kind of syringes we can plug straight into the gastric port (and mountains of emesis bags in my backpack and car. Aye, I’m kinda gross). I still get very hungry and nausea has never been a big issue unless I’m in a bad cyclic vomiting episode. The nerves around my coeliac axis have been removed or killed off with alcohol too so it doesn’t really hurt like I think it may some people. I dunno what’s normal for others but there is your answer from me if you ever wondered. I don’t mind questions, so don’t be shy to ask! Wooly IKEA carpark cat, signing off (on a side note, loving my new velvet Innisfree lippie. Prepare to be flooded with lipstick reviews soon!) 😽 ~ #lipstick #gastroparesis #dysautonomia #cipo #Cidp #chronicillness #invisibleillness #feedingtube #pegj #jetpeg #makeup #pinkhair #longhair #glasses #innisfree #redlips #filter #snow #foodie #arcticfoxhaircolor #curlyhair #fringe #bangs #disabled #aag #mals #eds #disabledandcute #carparkmodelling
Muppets? No, sorry I missed the show I was napping - Atlas probably 🙇🏻‍♂️🐾♿️😴
We walked to the #rectory ruins today 🙂 We always love coming here! We were planning to go further, but today is a really crappy health day so we came back. Still a fun walk! Now Lyle's going to go into town & get us some fish & chips 😊 #urbex #urbexworld #photography #blackandwhitephotography #amateurphotography #puppy #Labrador #funtimes #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #actuallyautistic #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie
There is currently no cure for dysautonomia, but secondary forms caused by an underlying disease may improve with treatment of the underlying disease. There are many symp­tomatic treatments available to improve quality of life, including medications, dietary changes and lifestyle adaptations. After individualized treatment, some patients are able to function normally. However, even after trying all treatment methods available, some patients remain quite disabled and may even be unable to work or attend school. Each person is unique. Stay tuned for more information on how this disorder affects people daily, and how Better Brain & Body can help you get back to living life with a Better Brain & Body!⠀ .⠀⠀ .⠀⠀ #betterbrainandbody ⠀⠀ #autonomicdisorders ⠀⠀ #POTS ⠀⠀ #potssyndrome ⠀⠀ #chronicfatiguesyndrome ⠀⠀ #chronicfatigue ⠀⠀ #chronicallyill ⠀⠀ #cfs ⠀⠀ #invisibledisability ⠀⠀ #invisibleillness ⠀⠀ #chronicillness ⠀⠀ #dysautonomia ⠀⠀ #dysautonomiaawareness
First day at my new job! I’m excited, but I’m also nervous because we have two weeks of training. Crossing my fingers that I feel well these next couple of weeks! #newjob #firstday #dysautonomia #chronicillness #chronicillnesswarrior #invisibleillness #butyoudontlooksick #potsie #potslife #spoonie #spoonieproblems #spoonielife #ehlersdanlossyndrome #mastcellactivationdisorder
♿️ Accessibility at Krimml Waterfalls, Austria 🇦🇹: The lowest waterfall (on the picture) is fully accessible and can be reached within 10-15 minutes on foor from the parking space. #accessibility #accessibletourism #travels #traveling #austria #krimmlwaterfalls #nature #dysautonomia #chronicillness #invisibleillness #handiscoverworld #travelingwithchronicillness #visitaustria #feelaustria
18 months of no wheelchairs, hospital admissions or eating Jaffa cakes from a hospital bed and there is no stopping me now 💁❤️ 👍 #Dysautonomia #DysautonomiaAwareness #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #PotsSyndrome #TiaAwareness #ThisGirlCan #PositivePost
More than enough sun for all of us 💛☀️👊🏼 • 📷: @joshuafooo #chronicloveclub
I got out yesterday and went to a sunflower festival. We took it easy but it was great to get out of the house. #chronicillness #chronicmigraines #POTS #posturalorthostatictachycardiasyndrome #dysautonomia #fibromyalgia #spoonie #trigminalneurlagia #sunflower #fieldsofflowers #flowers
First infusion with my port! I’m so excited that I didn’t have to get stuck a million times or have to have the PICC nurse come and stick me. It was so easy to use today. I’m elated that I get to eat my cereal with both hands 😂 . I’m in a bit of pain because of this stormy weather but I’m hoping that it will go away and my nerves will be less bad. Hope y’all are doing well —— #ehlersdanlos #ehlersdanlossyndrome #rheumatoidarthritis #pots #dysautonomia #spoonie #collegespoonie #sickchicks #specificantibodydeficiency #primaryimmunedeficiency
cardiology appt today went we'll enough. still no EP referral but i am starting on florinef; 0.1mg a day. anyone care to share their experience on florinef? #pots #posturalorthostatictachycardiasyndrome #potssyndrome #potsie #dysautonomia #dysautonomiaawareness
I’ve had a rough couple of weeks with my healing, but seeing this reminds me of just how far I’ve come! Passing out and going to the ER used to be a constant in my life. I haven’t had to go for YEARS. In fact, I’ve gone ONCE in the last 5 years or so. That’s a HUGE blessing. I’ve had to make a lot of changes, but it’s been so worth it. Good natural supplements changed everything for me. Have I mentioned I’m also off 7 prescription medications daily?? #healthsuccessstory #dysautonomia #pots #thyroid #adrenalfatigue #autoimmunedisease #pacemaker #changeyourlife #youcangetbetter #icanhelpyou !
Packing to leave to the beach 🙌🏼🙌🏼Already starting to feel like my body will need a vacation from this vacation. Praying my body will hold out for the drive and for being more active. More than half of what I'm taking are meds and medical supplies...preparing for a trip when you're chronically ill is quite the ordeal 😅 #grateful #conquer #chronicillnessfighter #strength #courage #resilience #perseverance #mycotoxins #moldillness #moldtoxicity #toxicmoldawareness #CIRS #dysautonomia #autonomicdysfunction #POTS #MCAS #mastcellactivation #asthma #mecfs #fibromyalgia #sjogrens #gastroparesis #degenerativediscdisease #myelopathy #neuropathy #spinalstenosis #spoonie #vegansofig #portscar #fightlikeawarrior
The ICU: where the bonus of having your own room balances with the fact that people feel free to come in and squirt ultrasound goo on you to do an ECHO at 3AM. 😂 // I was admitted last night for sepsis & a bloodstream infection. They’re still trying to figure out where the infection is coming from, but I’m hanging out in IV antibiotics and doing a whole lot better than last night. 💛 // “The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness.” [Lamentations 3:22-23]
Sippin my espresso and nut milk creamer. It’s going to be a beautiful day ❤️ - - - #potsie #eds #mcas #chronicillness #dysautonomia #itsabeautifulday
Fitness! Okay so I know it can be so hard sometimes to work out and keep up with physical fitness while dealing with major medical conditions. . . Despite having medical issues it is important to try your best to stay active and physical strength can only help in the battle against chronic medical conditions! . . Even if you feel like working out is going to pose negative results such as fatigue, joint and muscle pain, (the list could go on) it could have major positives as well. . . A strong body is better equipped to fight illness and getting those endorphins flowing is always a plus! . . I have recently gotten into ballet as it can be difficult to participate in gymnastics and soccer due to this lame j-tube and woah it helps a ton! . . I will keep you all updated on the fitness journey! . . Stay active and happy Monday! . . . . #jtube #fighter #nursingschool #strength #autoimmune #chronicillness #survivor #sicklife #ballet #fitnessjourney #wellnessjourney #pots #dysautonomia #gastroperesis #fitgirls #mindbodysoul
When #chronicillness #mentalhealth #mentalhealthawareness #mentalillness #suicideawareness #anxiety #depression #dysautonomia #autonomicdysfunction #silentillness I pulse ov existence The law ov nature undenied I hold the torch ov Heraclites So I can shake the earth and move the sun -Behemoth
MONDAY REALNESS – This August marks my 15 yr diagnosis anniversary. ♥️🎉 In 2003, after 5 yrs of unanswered questions, numerous doctor visits, lots of missed school and a week in the hospital – I was diagnosed with the heart condition #ncs Neurocardiogenic Syncope. It falls within the #dysautonomia family of autonomic nervous system functions. Basically all that stuff we can’t control. .. Along my 20 year journey I’ve experienced so many vasovagal “events” I’ve lost count. 🤦🏻‍♀️ Before my diagnosis I was having these events every other week and sometimes experienced episodes back to 🔙. The super scary part is the “event” I’m referring to is my heart stopping. FLATLINING. What’s incredible is that my heart always restarts on its own. Within 20 seconds every. single. time. The heart is SO powerful!! 💫 .. My fitness journey, under doctor supervision, started with goal to strengthen my heart, and ⬆️ my low blood pressure in order to ⬇️ my symptoms. Since many of my symptoms occur during hot summer months, I started slowly trying to acclimate myself to heat with hot yoga. 🔥🧘🏻‍♀️ With every new workout, spin class, yoga practice and walk in the hot sun I’m becoming stronger inside and out. .. It’s not always easy. I’ve had events in VERY public places. Which is beyond embarrassing and very scary. However, each day brings a new mini challenge and a feeling of accomplishment when I conquer it. I’m grateful to be properly diagnosed. And I’m so fortunate to have the best support system behind me. #realgram #loveyourbody #perfectlyimperfect #positivity @billdouger3 @alyssamwieting @dyssupport @toneitup
Mindfulness Monday task: Staying grounded in the present! ⛰️⛰️⛰️ Let's all pay close attention today to those wandering unhelpful thoughts...the negative future projections, the what if's, the scary scenarios we sometimes create before they've happened. 🙈 If we catch those, we can think, "HEY! Brain! My body is here. Right here, right now, and that's just me projecting!" 🤪🧠🤸 Just that act sends calming neurotransmitters that signal the body to be more calm. You may not feel them, but studies show they are there (how cool!). If you do this enough, your mind will not naturally wander in the same ways, and those happy chemicals can create feeling of safety, grounded in the present. 😊😊😊 This is an actionable exercise we can do to rewire our brain! It's simple, but not always easy. It's ok to be kind to yourself as you gently notice those thoughts and reroute them. 💕 So, today, let's interrupt those future freak outs, and start to gain control of where we pay attention! Feel your butt in the chair, your hands as they fold laundry, your fingertips on the keyboard, your feet on the ground...feel what you are doing *right here, right now* and maybe even pay attention to the enjoyment of it. Cheers to mindfulness and neuroplasticity! 🥂 Claire . . . . . . #mindfulmonday #healingjourney #mindfulmovement #mindfulnesspractice #healing #inspirationalwords #spoonielife #grounded #inspirational #spoonie #inspirationalquote #mindfulness #neuroplasticity #bemindful #mindfulliving #inspiration #mindfullness #mindful #lyme #dysautonomia #cfs #staygrounded #inspirationalquotes #mindfulnessmeditation #getgrounded #naturalhealing #inspirationoftheday #SWINGhealing
#Repost @mom_with_pots (@get_repost ) ・・・ @migraine_is_not_a_pose #migrainepose after fighting for home health to eliminate narcotics use and replace with fluids and lower key iv meds the second home health visit resulted in two sticks. One blown vein and a trip to the ER anyways. The meds and IV are in the hand is unstuck. Still have words. Still have nausea and high pain. Will stay tonight and tomorrow. I will get a #PICC line. #chronicmigraine #posturalorthostatictachycardiasyndrome #dysautonomia #hemiplegicmigraine this is chronic migraine this is stroke face 3-4 times a week and still high pain despite meds on board. I take a preventative every day. I have fluids and meds in an IV and it took me four tries looking at my phone in short increments to make this post. I’m alone in the ER waiting to go up to a room for the night so tomorrow I can have more permanent access and more control of my own care. 15 years with this condition and it doesn’t get any easier. Well that’s a lie... my magic unicorn babies gave me 306 days absolutely pain and #neurofuckery (as we call many of the hm symptoms) free. And bless them for that. Whatever it take for me to better parent for them.
Scroll for a photo of wild beach hair 💁🏻‍♀️🤘🏼 Happy Monday ✨
Do you suffer from diabetes, chronic pain, or any kind of illness? Did you know...”Today, more than 95% of chronic illness is caused by food choices, toxic ingredients, toxic overload, nutritional deficiencies.” If you have been ignoring this, then it’s no better time than now, today, this moment to change your present so you can completely redesign your future the way you choose. . . . . . #chronicillness #chronicpain #invisibleillness #fibromyalgia #pots #eds #autoimmunedisease #endometriosis #anxiety #mentalhealth #depression #butyoudontlooksick #dysautonomia #chronicallyill #lymedisease #multiplesclerosis #selfcare #chronicfatigue #pcos #lupus #fibrowarrior #health #chronicpainwarrior #mentalillness #weightloss #cbd
I just biked for 20 minutes which is a huge achievement! my knees and legs are on fire, but it’s done 😇. thankfully my body has been responding well to physical therapy (for my POTS). we’re not sure if it’s actually helping my pots, but it’s giving me more strength overall. I go in to my pt’s clinic 3 times a week and do v light weight training, stretches (both recumbent and sitting), recumbent biking and a few more things. then, on days when i don’t go in, i do pt at home, gradually increasing day by day. never forgetting that “slow progress is still progress”. (old picture) #hopethroughthestorm #miracleornot #chronicmigraine #thisischronicillness #migraine #chiari #intractablemigraine #fibromyalgia #hypothyroidism #pots #dysautonomia #aura #IIH #nausea #neuropathy #chronicpain #hemacraniacontinua #allodynia #hope #painsomnia #vogmask #tmj #pt #physicaltherapy #asthma
My Christmas watch arrived, it makes me happy 🎄 . I'm doing SHIT atm. Too much stress & overall crap-ness 😑 I hate the area we live in - wheelchair accessibility sucks, dog walks are rubbish & we never meet other dogs, there are so many aggressive dogs, there are no pet friendly places to train, & the biggest reason: Dr's in this area are especially awful 🙄 But moving house would mean we'd go back to where we used to live - there were really good Dr's, wheelchair accessibility is better, better dog walks etc...however its a 2.5 hour drive away. HELLA STRESSFUL, especially with all our pets. And goodbye money, & our good landlord 😕 Moving in general is incredibly stressful, & always triggers one hell of a manic episode...ugh idk. Balancing up if it's worth it is so hard 🙄 #tachycardia #syncope #thenhssucks #ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #posturalorthostatictachycardiasyndrome #disabled #disability #spoonie #actuallyautistic #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder #bipolar #mentalhealth
Welcome to the world, Tessa Grace 💚 8.18.18 💚 I love being an auntie and this little one on the left now loves being a big sister. Lots of things have been going on in my family this past week—but the timing couldn’t be more perfect! So happy i could be here for this.
For anyone out there needing this reminder: you got this! ❤️ #mondaymotivation #chronicillness #dysautonomia #dyssupport
My formal Oncology Appointment got canceled (They called Friday Evening). My blood work Flagged (Aldolase, Creatine Kinase, and Sed Rate). They are rechecking it Thursday as Well as repeating the EMG. I guess it’s better to be thorough but I just want to get this over with... #EMG #BrainCancer #braintumors #pituitarytumor #leftfrontallobe #opticalatrophy #muscularatrophy #gait #IBD #rhematoidarthritis #fibromyalgia #epilepsy #chronicillness #autoimmunedisease #radiationdamage #autonomicneuropathy #rare #pots #addisonsdisease #dysautonomia #warrior #survivor #battlemode #awakebrainsurgery #dystonia #earlystagedementia #braindamage #stillfighting 💪
Accurate description of POTS I just saw 😂 Whilst my Tachycardia is currently under control, everything else is completely out of whack #pots #potsyndrome #dysautonomia
“When I was little, I think I took my happiness for granted. Truth be told, I innocently didn’t know that there was any other way to be. I wore my rose colored glasses while happily playing “house” with my friends and eating rainbow ice cream cake at birthday parties. I was content playing outside with my best friends until the moon came out. Nothing really got to me. Even when I was really little, I didn’t cry very much. I was the “easy” child. But then, something changed. Sometime between ages 10 and 20, I grew up. And in the process of growing up, I learned the hard way that life isn’t all sunshine and daisies. I leaned that life doesn’t automatically grant us everlasting happiness. And that sometimes life doesn’t even give us an ounce of happiness. I can’t say I know for sure what happiness is, or how to find happiness. I’m still searching for it every single day. I’ve been through a lot of ups and downs. And during the downs, there were times when I seriously didn’t think I could make it through. Times that I couldn’t remember what “happy” felt like. I didn’t believe that things would get better. I didn’t believe that the heaviness would ever lift. But then things did get better and my world became lighter. And somewhere along the rocky path, happiness found me once again. As much as I wish I could, I can’t tell you any secret words that are magically going to bring you happiness. I can’t give you happiness. I can’t make you feel happy. I can’t lift the fog that is smothering you. But I can tell you what I’ve learned after crashing and burning many times. I can tell you what I’ve learned from trying my very hardest to always rise up again, no matter how bruised or beaten up I am. Happiness is a gift. But it’s a gift that you deserve. It’s not a bribe that you have to earn. It’s not an elusive prize that you’ll never be able to wrap your fingers around. But it does like to play tricks on us. It likes to fly out of our reach. It likes to hide away in the shadows when we need it the most. But one secret to finding happiness is to stop putting yourself down when you don’t have happiness.” (Cont. comments)
Image 1: my amazing mother at 14 years old. . Image 2: myself, at 30 years old. . My mother was a rythmic gymnast and is still super active to this day at 55 years old. Her perseverance is inspiring. . #ZebraMum #Unicorn #RedZebra #EhlersDanlosSyndrome #VonWillebrandDisease #ClassicalEDS #vWD2N #edsathletes #chlotortion #WomenWhoBleed #VonWillebrandGlobal #POTS #Dysautonomia #ShoulderInjury #Hypermobility #Circus #Kinetica #KineticaCircus #KineticaCDT #Contortion #BleedingDisorder #ConnectiveTissueDisorder #ZebraStrong #BendBack
Guess who is O+? Realised the other day that I didn’t know what my blood type is, so I ordered an EldonCard online and now I know 😊 #chronicillness #cfs #dysautonomia
Looks like it's crystallised ginger for breakfast...gona try make my own sugar free version though, as much as I love sugar I really didn't want to be eating it for breakfast 😂 it bloody helps though, along with a nice bit of comfort from my favourite pillow and a bit of Barbra blaring in my ears...I couldn't get comfortable for the life of me last night, I feel crap with a good night's kip so it doesn't go down well when I don't sleep...today I'm holding a pity party 😂😜 but it won't last long...it's not really self pity actually it's more self care, I know what I need and how to distract myself, but for now I must venture downstairs cos Jessie wants to go out and play 😺❤ #lackofsleep #nosleep #pityparty #selfcare #distraction #crystallisedginger #ginger #youtube #barbrastreisand #favouritepillow #comforter #comfort #spoonie #me #myalgicencephalomyelitis #hsd #dysautonomia
Today is day 24 of my #100dayproject Day 24 💜 “It’s not what you are that’s holding you back. It’s what you think you are not.” 💜💜 I love this quote. I’m still working on my #100dayproject and I am pushing myself in some regard each day. The ways I’m pushing myself definitely have changed in the past week because I’m trying to learn to love myself for the first time. I’m also dealing with major trauma. Etc. 💜💜 I think this resonates with me because I spend so much time thinking about what I “I am not.“ I’ve been told some of them are cognitive distortions. In my head at any given time..... • I am NOT strong enough • I am not pretty • I am not thin • I am not a mother • I am not working right now 💜💜 Some of these things I can never change. Some of these things I can change. Some of these things are cognitive distortions. I think it all comes down to me believing I’m not good enough. I’m not good enough for anything good to happen to me. Since the trauma I have felt dirty, diseased, useless, etc. 💜💜 I am working hard to challenge these thoughts every day. I did not end up doing any self-care. I need to work on my self-care and self-love routines. I did, however, realize that I need to focus less on what I am not. 💜💜 I want to change those statements into what I AM! 💜 💜 Love And hugs💜 • • • • • #agoraphobia #agoraphobic #anxietywarrior #anxietydisorder #bopo #bopowarrior #bodyacceptance #cfsme #dysautonomia #fibromyalgia #losehatenotweight #medicalertdog #selflovejourney #ptsdservicedog #panicdisorder #ptsd #ptsdsurvivor #selflovejourney #selfloveisthebestlove #pmdd #pmddawareness #panicattack #servicedogintraining #ptsdwarrior #chronicfatiguesyndrome #autoimmunewarrior #mentalhealthwarrior #mentalhealthadvocate #invisibleillness
Today is day 24 of my #100dayproject Day 24 💜 “It’s not what you are that’s holding you back. It’s what you think you are not.” 💜💜 I love this quote. I’m still working on my #100dayproject and I am pushing myself in some regard each day. The ways I’m pushing myself definitely have changed in the past week because I’m trying to learn to love myself for the first time. I’m also dealing with major trauma. Etc. 💜💜 I think this resonates with me because I spend so much time thinking about what I “I am not.“ I’ve been told some of them are cognitive distortions. In my head at any given time..... • I am NOT strong enough • I am not pretty • I am not thin • I am not a mother • I am not working right now 💜💜 Some of these things I can never change. Some of these things I can change. Some of these things are cognitive distortions. I think it all comes down to me believing I’m not good enough. I’m not good enough for anything good to happen to me. Since the trauma I have felt dirty, diseased, useless, etc. 💜💜 I am working hard to challenge these thoughts every day. I did not end up doing any self-care. I need to work on my self-care and self-love routines. I did, however, realize that I need to focus less on what I am not. 💜💜 I want to change those statements into what I AM! 💜 💜 Love And hugs💜 • • • • • #agoraphobia #agoraphobic #anxietywarrior #anxietydisorder #bopo #bopowarrior #bodyacceptance #cfsme #dysautonomia #fibromyalgia #losehatenotweight #medicalertdog #selflovejourney #ptsdservicedog #panicdisorder #ptsd #ptsdsurvivor #selflovejourney #selfloveisthebestlove #pmdd #pmddawareness #panicattack #servicedogintraining #ptsdwarrior #chronicfatiguesyndrome #autoimmunewarrior #mentalhealthwarrior #mentalhealthadvocate #invisibleillness
Day 7/30 of my #chronicillnesschallenge . Today’s question is : What is the biggest realization you’ve had? . . . . The biggest realization I’ve had is that you cannot grieve forever. I can sit here and feel sorry for myself and wallow in my illness. I can let my new life consume me while I just sit here and reflect on what I USED to be able to do. OR I can embrace my new life and make the best out of it. Sure, I still have panic attacks and loads of anxiety, but I haven’t even had this for a year. I have made so many strides. Tons of milestones. I went from being bed bound to being able to drive and stand in the shower. Do I still have scary days that feel like I’m dying? Fuck yeah. But they don’t define my life. I’m making the most of my situation. I’m not going to let dysautonomia define my life in a negative way. I have a long way to go, but I’ve also come so far. 💕 #chronicillness #pots #mcas #dysautonomia
The past two weeks have been a test of patience. I am such an optimistic person by nature, but it has been such a struggle to look on the bright side lately. ..... I'm still unable to fathom that I will be undergoing surgery (again) next week and that I must begin the healing process all over again. ..... My pain level is so high today that turning the pages of a book is a painful task. ..... To anyone in a similar situation this evening due to a chronic illness, always remember that you aren't alone. I pray that we all find relief in someway. 🙏 Sending gentle hugs and warm thoughts to everyone in need. 💜 #chronicillness #invisibleillness #pagetshroetterdisease #autoimmunedisease #rheumatioddisease #thoracicoutletsyndrome #spoonie #chronicillnesswarrior #fibromyalgia #lupus #dysautonomia #spooniestrong #warrior
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