#potssyndrome

Instagram photos and videos

#potssyndrome#chronicillness#spoonie#chronicfatigue#ehlersdanlossyndrome#spoonielife#fibromyalgia#chronicpain#pots#dysautonomia#disability#chronicillnesswarrior#autoimmunedisease#invisibleillness#mentalhealth#lymedisease#lupus#mentalillness#potsie#fibro#endometriosis#endowarrior#crohns#mentalhealthwarrior

Hashtags #potssyndrome for Instagram

The saddest thing to me is not when someone literally physically dies but rather when they forget who they are and their souls die and it's just an empty body walking around... Or an imposter... I hope I never forget who I am
#chronicillness #chronicpain #ill #illness #pots  #posturalorthostatictachycardiasyndrome #disautonomia #puddingblood #medical #potsinternational #potssyndrome
#inspiration #inspire #inspirational #passingout #migraines #heartpain #headaches #hydrate #healthy #dizzy #awareness #spoons #spoon #spoonie  #spoonielife #depression #anxiety #mentalhealth


0

Today was Heidi's last day of Treatment in Dallas. Heidi is returning to her herself, definitely see improvement since she has started the treatment. Makes this mum smile. Coming all this way was the right decision. Sometimes you have to look at other options for treatment, out of the normal box. As a parent your hearts breaks seeing your child suffer. On the outside Heidi looks normal, inside her body is in overdrive her adrenaline at max speed causing all sort of systems. The last 8 days Heidi has been learning to take control back . The staff are amazing at the clinic, from day one Dr. Kypriano explained this syndrome that finally made sense and Heidi felt at last this is real, not all in her head. If I could tag the lady in the picture I would , nurse Silvia made Heidi feel relaxed every day about coming in. Silviais a ball of positive energy cannot say enough how thankful I am she is at the clinic . Sitting in the waiting room hearing her and Heidi laughing would make my day . Now the journey to Heidi's recovery will continue when we return home, preparing her for the next chapter. I can see a light at long last at the end of tunnel.
#potssyndrome #potstreatmentcenterdallas
#potstreatmentcenter
#potsparents


0

I got to go to work with momma today! I made sure to be on my best behavior. Mommy kept saying she was so proud of me... and I didnt have any accidents
#notalldisabilitiesarevisible #germanaussie #oneblueonebrown #levyloo #cute #furmom #puppies #love #cratetraining #firstdayonthejob #work #potssyndrome


0

I was so excited to find DripDrop at Walgreens. If you’ve seen my last YouTube video it’s about powdered electrolytes. I didn’t have any of these for my video but these are great powdered drinks.
.
.
.
#electrolyte #walgreens #hydration #dehydration #dripdropors #dripdrip #addwater #chronsdisease #posturalorthostatictachycardiasyndrome #potssyndrome #potsiegirl #spoonie #drinks #dehydrated #sportdrink #athletes #drink #rehydrate #rehydrateyourself #hydrateyourself #sjogrens #ibd #electrolytes


0

We are in the ER for the first time in 5 months. @carolinekeeth had a reaction to vinegar. She had already been triggered by the smell of plastics and I think that the two combined are what caused the cascade. She passed out and then the anaphylaxis hit. Our first responders are great and they got there quickly. Our new allergist gave us very specific written orders which has helped us advocate for Caro better. The good side of having so many trips to the ER is that most of the nurses know her. Tonight they were sharing with the new nurse the different reactions they each have treated her for. 😉👍🏻. We appreciate your prayers. She was diagnosed with strep last week and just started a new antibiotic (z-pac). The next few days will keep us on edge because she will be much more likely to have another reaction. They often come in clusters.
#mcas #mastcellactivationsyndrome #ehlersdanlossyndrome #fibromyalgia #potssyndrome #spoonie #spoonielife #spoonieproblems #chronicillness #chronicpain


8

You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #altuismcare #ptsdrecovery #bipolardepression #ocdproblems


4

Today and yesterday have been overwhelmingly terrible. I’ve cried more than I’ve eaten or rested. (Haven’t eaten in 24+ hours.) Today I pushed myself through a nine hour shift and refused a break because I .. I don’t know, I wanted to punish myself? Wanted to revel in my grief? I’m full of fear and questions and panic, but I’m trusting God, trusting God. My healing will come. It will be slow and painful for a while, and extremely lonely. But it needs to happen this way. Sometimes being ill looks like this... hideous, exhausted, depressed. I’m not giving up, but I sure am beat down and worn out. ——————————————————————————#autonomicdysfunction #heds #connectivetissue #gumbygirl #chronicpain #chronicillness #survivor #eds #spoonie #spoonielife #invisibleillness #depression #sadness #invisibleillnessawareness #ehlersdanlos #hypermobility #hypermobilitysyndrome #bloodpressure #lowbloodpressure #potssyndrome #pots #stretchy #flexible #bendy #ehlersdanlossyndrome #ehlersdanlosawareness #zebra #CHRONIC


12

Currently sitting by the pool wishing I could just teleport home instead of having to wake up super early to catch my flight!✈️ I'm extremely happy with the progress I've made on this journey and will definitely miss Dallas tons! I am happy though to get back to some normalcy! 😂 I am still obsessed with this outfit too by the way! 😉💕


5

There are days I’m doing great and then are days where I measure how many days it’s been since I’ve washed my hair. I forget sometimes why I feel sick, after all, I’m in #remission. #Repost @themightysite with @get_repost
・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


1

・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


0

Pretty sure today was the first time in 6+ months that I've managed two dog walks in one day!! The first was pretty big (45mins? with a ton of #seizures + symptoms) & the second was teeny (15mins), but I'm still super happy! Yay for the end of the #heatwave & my wheelchair making this possible 😂 Gonna relax, watch Lyle play some Resident Evil, then sleep 🙂 Also I really like this photo I took walking through our village in the dark haha, the street lamp at the end of the bridge is bust & it looked eerily beautiful!
#ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #wheelchair #dysautonomia #potsie #bipolardisorder #photography #amateurphotography #amateurphotographer #blackandwhitephotography #urbex


0

This is me today. I've had 2 test run on my heart and both came back "normal" even though my HR was up to 200. WTF? But that's what happens when the dr orders tests for disorders you DONT have! I thanked the nurse and said, "have my results faxed to dr Suh, he's taking over my POTS case since yall can't seem to understand that it's NOT NORMAL to have a HR in triple digits ALL day long!
I've been patient with this cardio because he's local and it's a long drive to one that specializes in POTS but after paying for every test under the sun and him not treating my POTS, my rhumatologist and geneticist insist I go where I can get treated properly. I have fucking POTS! But this guy refuses to treat it. He bluntly said, he won't. So despite how fast my little heart can beat, I'm apparently, "fine" lol. Just more #doctorbullshit
Fine!, I'll drive 1 1/2 hours to get proper care. -
#imoverdoctors #chronicillness #chronicallyill #potssyndrome #pots #potsie #posturalorthostatictachycardiasyndrome #spoonieproblems #spoonie #spoonielife #eds #geneticdisorder #ehlersdanlossyndrome #fightlikeazebra #fibromyalgia #zebrastrong #lifesucks


3

“Like a burst of technicolor in a world of black & white.” 🌈 *New Blog Post!* [link in bio]
//
Also, one of my favorite pictures of Mario, free of charge. #mancrusheveryday #foreverlikethat
//
“For His invisible attributes, namely his eternal power and divine nature, have been clearly perceived, ever since the creation of the world, in the things that have been made. So they are without excuse.” [Romans 1:20] 🌻
//
Also, I have a technicolor level headache right now, for which you can thank for the flow of this post. It’s IVIG’s fault & I’m far too thankful to be getting IVIG again to blame it for a headache. 🎉
//
Much thanks to @ben_rector for another album full of #magic lyrics. ✨💛


9

It has been demonstrated that 50-80% of chronic diseases of modernity, including cancer, heart disease, and autoimmune disorders, are diet- and lifestyle-related.
.
.
Epigenetic and exposome-related factors (that is, the sum total of environmental variables encountered from conception to death) play a larger role in dictating disease risk than some fatalistic model of genetic determinism whereby illness can be chalked up to faulty or defective genes.
.
.
Yet the allopathic paradigm is sorely unequipped to provide sound bioindividualized, evidence-based nutritional recommendations since the health care paradigm revolves around patentable petroleum-based medications from which the pharmaceutical industry profits.
.
.
“Less than half of all schools report teaching any nutrition in clinical practice; practice accounts for an average of only 4.7 hours overall...” (Adams et al., 2015).
.
.
Researchers in the Journal of Biomedical Education conclude, “Many US medical schools still fail to prepare future physicians for everyday nutrition challenges in clinical practice. .
.
It cannot be a realistic expectation for physicians to effectively address obesity, diabetes, metabolic syndrome, hospital malnutrition, and many other conditions as long as they are not taught during medical school and residency training how to recognize and treat the nutritional root causes” (Adams et al., 2015).
.
.
Thus, asking medical doctors without training in holistic, integrative, naturopathic, or functional medicine approaches about their take on the food you should be consuming is akin to asking an electrician to fix your plumbing.
.
.
At present, the logistical constraints of their practices, 8-minute patient appointments, and a curriculum that is 17 years on average behind the published scientific literature (Morris, Wooding, & Grant, 2011) does not permit a comprehensive dive into the nuances of nutritional biochemistry.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.


35

This picture hit me hard and I thought I would share. The message behind this is so powerful, especially for people in the chronic illness, mental illness community or anyone that has seen darkness. No matter how hard you fall, no matter how broken you feel you WILL rise. It may take a while or it may happen overnight but just know that you are gaining strength and knowledge every single day. Some fall so hard that they believe they will never be able to get back up. I personally have felt that way but I have learned that with time, patients and lots of hard work you will stand. Every time you fall, you are getting stronger. Every morning you wake up, every time you get out of bed, every time you accomplish even ONE thing in your day, you are getting stronger.
To every single person reading this, please know that there are people here for you. There are people who feel your pain. There are people who would love to offer some support; all you have to do is ask. Please don't keep it all in, reach out. I will always be here for everyone, even if you just want to chat 😊
Keep fighting, my chronic illness family 💪🏼 Much love ❤️
#potssyndrome #ehlersdanlossyndrome #anxiety #deppression #chronicillness #invisibleillness #mentalhealth


1

Made some presents for my cousins in Portland. I miss them like crazy. We 3D printed the bulbasauar, painted it, and planted a succulent in it. And I crocheted the lion. .
.
.
.
#crafts #spoonie #spoonielife #lyme #lymedisease #potsie #pots #potssyndrome #gastroparesis #autoimmunedisease #autoimmune #chronicallyill #chronicillness


5

First doctors appointment this week...now we’re getting down to business! #hotmess #ehlersdanlossyndrome #potssyndrome #diabetes #secondaryadrenalinsufficiency #tbi #spinalinjury


0

Just one of those days. Joint & muscle pain are in full force. I can feel the inflammation all over my body & especially in my chest. Blah. -kate


9

Does it really take two people, two computers, and several hours to find the right specialists? You bet it does! 🤦🏻‍♀️ But finally I was able to find a neurologist with a tilt table and a mast cell specialist in my network. There were no women options for immunologists and only one woman cardiologist (who didn’t have the tilt table for testing), which really drives me insane. Working with women doctors has made such a big difference for me- appointments have a totally different feel and I’m almost never told symptoms are all in my head. As bummed as I am about the lack of options, I’m thrilled that the immunologist can squeeze me in tomorrow morning! Hopefully he can help us determine what steps to take and rule out more serious issues like mastocytosis. Fingers crossed! 🤞🏻😬 All this time at the computer is killing my shoulder, so I’m going to break out the TENS unit and lay down for a while. Hope you’re having a good pain day! 💜


5

The kids and I stopped by Crystal Spring Hutterite colony on the way home from the border store today and bought some fresh veggies!!! Yum! 4lbs of peas and 2lbs of carrots for $10. And...I love the Hutterites!! So do my kids. They always treat us like gold, smiling and chatting with my kids and giving them candy. They’re seriously such delightful people. ❤️
.
.
.
.
.
.
.
.
#freshproduce #peas #carrots #hutterites #hutteritecolony #hutteriteproduce #vegan #plantbased #oilfree #sugarfree #dairyfree #vegetarian #guthealth #hippie #hippiemom #hippiefood #wfpb #wfpbdiet #wholefoods #wordofwisdom #lds #discoveringthewordofwisdom #medicalmedium #chinastudy #forksoverknives #plumplanted #autoimmunedisease #potssyndrome #conversiondisorder #lupus


2

As I sit here for my second IVIG infusion, I wanted to share the homemade electrolyte drink I’ve been downing to help get through. I shared this in my first IVIG vlog (link in bio to watch if you haven’t!), but wanted to post it directly on IG because I know so many of you are also looking for great electrolyte options
.
I mix mango coconut water with regular water (50/50 or 25/75 because straight coconut water is too much on my gut and makes me nauseous) and then add a few shakes of @redmondrealsalt
.
Coconut water is already a great natural electrolyte drink replacement on it’s own. I like the mango for flavor and to add in extra electrolytes plus some extra sugar (aka carbs for my body to use in healing)+vitamins. Salt is an important electrolyte (hello sodium!) plus adds some extra minerals. The coconut water I buy is straight mango juice and coconut water, no added flavorings or dyes
.

Electrolytes are essential to our cells so they can function properly! Making sure to replace electrolytes when you are super active or sick is really important. Do you have a favorite homemade electrolyte drink recipe or electrolyte replacement supplement? Share below if you do so we can all get some more ideas!
.
.
.
.
.
#foodismedicine #adrenalfatigue #grainfree #healingdiet #guthealth #autoimmunepaleo #aip #antiinflammatorydiet #holistichealing #buzzfeedhealth #mcas #wholefoodie #hashimotos #autoimmunedisease #buzzfood #chronicfatigue #holisticnutrition #lymedisease #spoonie #ivig #coconutwater #mango #aiplifestyle #paleoeats #glutenfreelife #dysautonomia #potssyndrome
#electrolytes #mastcellactivation


23

#repost from @chroniclesofyoolie ... so inspiring. I’ve been dealing with Lyme and the fall out of #lymedisease for upward of seven years now. My heart hurts for anyone who has to go through this. •• Our mentality and self care that we allow ourselves during the storm of treatments can either make us or break us after the season calms and our body takes a break from being a mess. •• We must give ourselves the grace and love that we just don’t feel in that moment. We need to choose to give ourselves the care we deserve, even when it’s hard. We need to be strong as we fight this #chronicillness as warriors for our families, friends, children and significant others.
I’m right there with you, learning too.
#lymedisease #motherhoodintheraw #momblogger #lymediseaseawareness #motherhoodunplugged #letthembelittle #minimalism #quote #lifequote #lifestyle #spoonie #spooniesister #fibromyalgia #potssyndrome #ibs #mycoplasmapneumonia #chronicpain #depression


0

One year ago, when @sleepinthegardn asked her fans to open up about a struggle in our lives for an opportunity to join her at her screening of @feedthemovie, I had no idea I was about to become part of a community full of support, love, and encouragement. Through my journey of flyingthroughit this past year, I have learned to open up about some of my hardest struggles, as well as share and appreciate my victories, both big and small. Thank you, Troian, for bravely sharing a piece of your own journey through #feedthemovie and for showing me the side of @instagram that is full of people reaching out to one another, rather than a highlight reel of vacations and trendy coffee shops. I can’t wait to continue building my community and exploring my honest emotions on this page. I was scared to open up, but now I could never turn back .
.
.
#feedthemovie #eds #ehlersdanlos #zebrastrong #zebrawarrior #dysautonomia #potssyndrome #hypermobility #chronicpain #chronicfatigue #eatingdisorderrecovery #neda #spoonie #invisibleillness #butyoudontlooksick #chronicloveclub #chronicwarrior #community


1

Being chronically ill sucks, so here's a pretty photo from Haddon Hall garden 🌹


1

Not an advertisement, I have no affiliation. NEW BLOG POST: The numbers don’t lie. Exercise has been more of a hope and dream than a reality over the past few years. Enter DripDrop ORS @drinkdripdrop into my hydration routine. As someone who struggles with chronic illnesses and dehydration, this has been a life changer. I have been able to do more in one month than the 5 months prior combined, with no crippling fatigue or crashes. No other diet or lifestyle change has given such immediate benefits.
So excited to see what the future holds now that I feel so much more stable, clear-headed, and energized.
Shoutout to @glassbody.steelsoul steelsoul who recently blogged about her experience with DripDrop. I have no affiliation with DripDrop, just happy to share a success story. .
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
.
#correlatedwellness #nofone
#zebrastrong #fitfam #motivation #invisibleillness #chronicillness #eyeontheprize #whatgetsmeasuredgetsimproved #ehlersdanlossyndrome #edsjourney #potssyndrome #potsexercise #accountability #nopainnogain #athleteswithdisabilities #slowandsteady #nevergiveup #instafit #fitnesstracking #dysautonomia
#girlswholift #fitlifestyle #fitlife #strongwomen
#fitnessjourney2018 #fitnessjourney #hydration #hydrate #drinkdripdrop


7

In this fast-paced world we could all use a little more #relaxation. 🧘‍♀️

Below are 6 relaxation techniques to check out to reduce stress in the body.

Rather than choosing just 1 technique, experts recommend sampling several to see which one works best for you. 💗

1. Breath focus. In this simple, powerful technique, you take long, slow, deep breaths (also known as abdominal or belly breathing). As you breathe, you gently disengage your mind from distracting thoughts and sensations.

2. Body scan. This technique blends breath focus with progressive muscle relaxation. After a few minutes of deep breathing, you focus on one part of the body or group of muscles at a time and mentally releasing any physical tension you feel there. A body scan can help boost your awareness of the mind-body connection.

3. Guided imagery. For this technique, you conjure up soothing scenes, places, or experiences in your mind to help you relax and focus. You can find free apps and online recordings of calming scenes—just make sure to choose imagery you find soothing and that has personal significance. ♡
4. Mindfulness meditation. This practice involves sitting comfortably, focusing on your breathing, and bringing your mind's attention to the present moment without drifting into concerns about the past or the future.

5. Yoga, tai chi, and qigong. These three ancient arts combine rhythmic breathing with a series of postures or flowing movements. The physical aspects of these practices offer a mental focus that can help distract you from racing thoughts. They can also enhance your flexibility and balance.

6. Repetitive prayer. For this technique, you silently repeat a short prayer or phrase from a prayer while practicing breath focus.

Article By: Julie Corliss
Executive Editor, Harvard Heart Letter

What is your favorite relaxation technique? 💕

🦋 Learn how to turn Chronic Symptoms or #ChronicIllness into #ChronicWellness 💗

📸: Unknown


24

Find out why I decided to start fighting against my doctors for a better treatment and quality of life for myself in my lastest article for @themightysite "When Fighting For Your Life Means Going Against Your Pacifist Beliefs"
Link on my blog page and it was also shared on the 'Dysautonomia on The Mighty' Facebook page this week. It always brings me great joy when I stumble across one of my own pieces when I'm scrolling through my feed ♥️ -
-
-
#themightysite #dysautonomia #pots #potssyndrome #pacifist #quaker #chronicillness #chronicillnesswarrior #writer #writersofinstagram #illness #follow #like #love #spoonie #spoonielife #spoonielove #butyoudontlooksick #dysautonomiaawareness


0

Leftovers for lunch! 😋 The low histamine veggie soup turned out great- Pepper’s so irritated I’m not sharing 😂 One thing I learned last night is I need small glass containers to freeze batches in meal size portions- but once I have those I don’t think it’ll be inconvenient to thaw things out each time I get hungry. I just need to be better about planning ahead. Another little victory: I’m eating! And it’s high nutrient food and I’m keeping it down! I still can’t do more than a few bites at a time, but it’s so exciting to be able to eat again! Nutrient absorption and GI symptoms have been huge issues for me this year. It’s wonderful when things start to turn around 😊💜🎉


4

Sexism and Chronic Fatigue Syndrome. My new blog post is up! Our gender stereotypes could have a damaging effect on how we treat chronic fatigue syndrome. Throughout history women have been diagnosed with hysteria for their unexplained symptoms. Today women still carry this stigma with many being labelled "crazy", "emotional" and "hysterical". Is it any wonder then that those suffering from a predominantly female condition are told it is all on their head? This is a modernisation of female hysteria and it is not okay. More needs to be done! Read my new post for a deeper insight and to spread awareness. Link is in bio
.
.
.
.
.
.
.
.
.
#chronicfatiguesyndrome #chronicfatigue #CFS #invisibleillness #disabled #spoonie #spoonieblogger #spoontheory #potssyndrome #art #feminism #sexism #disabledfeminist #feministart #women #artist #roses #newblogger #blogger #bloggerlife #blog #hysteria #femalehysteria


1

It’s been a busy week full of recovery, nutrition plans, meal prepping, workouts, on top of all of my social media and blogging 🙇🏻‍♀️ But I guess that’s what coffee is made for ☕️ #lifefuel
.
After several attempts filming my first YouTube video, I finally realized my SD card wasn’t fast enough and just replaced it today🙈 So the hope is to have it completely up and done by the end of the week!
.
If you have any video ideas you would like me to do, make sure to comment below or DM me and I’ll make sure to respond 🤗💗
.
.
.
#coffee #coffeelover #caffeinequeen #caffeineplease #chronicillness #chronicpain #chronicpainwarrior #chronicdisease #chroniclife #rsdcrps #potssyndrome #eds #invisibleillness #mycoplasma #fibromyalgia #spoonie #spoonielife #spooniewarrior #spooniesupport #spoonielove #spoonieblogger #blogger #bloggerlife #bloggerstyle #vegan #glutenfreevegan #crueltyfree #veganeats #glutenfree


3

I have a new blog post up about accepting help from others when you have chronic illness—the link is in my profile😊 One of my struggles with being sick these past few years has been asking for help when I need it. As someone who was previous very independent, losing the ability to do simple things was embarrassing, frustrating, and discouraging. I hated the thought of having to ask for help—it felt like I was just being weak. Though I’d 100% rather be the person helping, I’m so thankful for the help I’ve received 💛 I’ve had to humble myself to admit that I can’t to everything for myself right now. And that’s okay. It isn’t my fault. The same goes for all of you. I hope you can gain something from my thoughts on this subject & I’d love to hear your thoughts as well 💙💚


12

I’m so excited!!!!!


4

This is me at my finest, I must say this is the best picture of myself.
This was me 19 years old during my CT angiogram. 😁 #pots #posturalorthostatictachycardiasyndrome #potssyndrome #dysautonomia #innapropriatesinustachycardia #ctangiography #ctangiogram #invisableillness #chronicillness


1

Aaagh it was so nice before my big overreaction 😥
🌊 .

Knowing that I have autism & that's why I have so many issues with strangers, interaction, & have meltdowns is hugely helpful...I hated myself for so long & battled so much guilt. Now it makes sense, & the guilt is already less...in time I hope to feel even less guilt, & we'll have a better way to handle break downs.
.
I'm still not sure if I'll be trying to get an official ASD diagnosis (if it's even an option in my area)...basically everything is stacked against me: I'm an adult, I have MH diagnoses, I'm AFAB. I'm gonna wait to see how I feel after we've sorted all the physical health stuff, but if I decide not I already feel much better thanks to various websites I've studied. They're super validating, especially Life On The Spectrum 🙂
#ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt+ #wheelchair #dysautonomia #potsie #bipolardisorder


0

Easy, breezy summer days are flying by way too fast. Finding that balance between having a great summer with Liam and working has been difficult these last few weeks. I have to remind myself - grace, NOT perfection. sometimes the most meaningful moments come from the messiest times. Tag a friend who may need to hear this today. How has your summer been going?


1

What a day!! I'm not always positive 😂 absolutely shattered and looking like a zombie at work today! Can't wait for 4 days off to chill and do whatever I want! Whoop whooop! This hot train can do one too🖕 #bepositive #moodybitch #potssyndrome #thesecret #strongwomen #getbackontrack #tired #fatigue #fridayforme #justabumpintheroad #funny #thelawofattraction


2

Regrann from @themightysite - You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


2

Literally no filter required!!! This is my arm, this is my permanent spoon, this is the breathtaking work (and photo taken by) the amazing awesome @milky_tattoodles !!! We travelled all the way to Edinburgh for this and I couldn’t love it more❣️being chronically ill frequently makes me feel ugly, ashamed and upset, it forces me to let people down, it makes me hard to be around and it makes me so unbelievably angry and upset at how unfair life can be!! But this tattoo represents the beauty of my wonderful friends and family who are there for me, it shows me the strength that I try to find every day, and it’s beautiful, beyond beautiful just like the life i left behind and the life i continue to try to form. And of course My boyfriend held my hand through the pain and will forever be a part of this and me! Thank you so so so much @milky_tattoodles for the tattoo and for being so understanding #hero 🤩 #fibromyalgia #chronicallyfabulous #sick #lovethelifeyoulive #tattooedgirls #tattoo #sempertattoo #myalgicencephalomyelitis #potssyndrome #crohnsdisease #ibdawareness #fibrowarrior #spoonie #spoonielife #spooniesupport #butyoudontlooksick #fibrowarrior #ill #alternativegirl #chronicillness #chronicpain #guthealth #sickandtiredofbeingsickandtired #indie #edinburgh #nationaltattooday #spoontheory #littlespoon


5

Goodish walk (lots of #seizures & HR fuckery!), but it turned sour at the end 😞 Lyle goofed pushing my chair, resulting in a front wheel going over Finley's toe (Fin was fine), & I had a big meltdown. It wasn't even his fault, but 😥 I was screaming "FUCK OFF" (when I'm in a meltdown the only thing that will help is space, do not try & interact with me. Lyle struggles to understand this 😩) Finally Lyle took Finley off to train & I was supposed to wait for him to get back to me...but I went ahead, calmed down, & filmed a little. 2nd & 3rd video there's a bit in the village where I can't get up the curb, so have to go on the road until there's a wheelchair accessible bit. Kinda terrifying #wheelchairaccessibility 🙄 After 5mins wheeling I sat about & waited for Lyle and Finley to catch up, we made up, then went home. Idk how he puts up with me 😥 Oh the last video, the big lump in the pavement usually makes it so I can't get up it whatsoever - I tilt left cos of the bump & my right wheel spins on air. I tried yet again today & made it!! 😃
#ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt+ #wheelchair #dysautonomia #potsie #bipolardisorder


0

#Repost @themightysite with @get_repost
・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


1

My kind of festival😍🥔🍠❤️ the restaurant dowstairs of my apartment xx

#KL #potato #spoonie #potssyndrome #chronicillness #dysautonomia


0

Hace unos días una de nuestras 32 embajadoras de #LOVEYOURSELFMX en Querétaro. América Gaytan... se presentó para crear un podcast con Colectivo Amantoli
Las redes sociales se han convertido en el espacio donde todo puede suceder. ¿Que tan buena es tu relación con tus RRSS? ¿Te has sentido ansioso o estresado por observar las vidas perfectas de tantos?
En nuestro tercer episodio del podcast entrevistamos a @ladelosojosverdess embajadora de Loveyourselfmx en Querétaro y platicamos sobre su campaña para mostrarnos tal cual somos y aceptarnos así, sin filtros. ¡Escucuchános apple podcast! Puedes encontrar el link en nuestra bio.
.
.
Just an ordinary
#invisibleillness #mentalhealth #mentalhealthawareness #mentalillness #mentalhealthmatters #mentalhealthday #chronicfatigue #chronicillness #spoonie #spoonielife #mentalillnessawareness #mentalillnessrecovery #edrecovery #anxietyattack #fibromialgia #fibro #lupus #ileostomía #cancer #disability #ehlersdanlossyndrome #potssyndrome #autism #endometriosis #endowarrior #depresión #ansiedad #loveyourselfmx
https://itunes.apple.com/gb/podcast/somos-lo-que-hacemos/id1390385289?mt=2#episodeGuid=http%3A%2F%2Fwww.ivoox.com%2F27046751


1

#Repost @themightysite (@get_repost)
・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


1

So SO true. 🙌
#arthritis #rawarrior ❤️

.
.
.
#Repost @themightysite with @get_repost
・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


1

Was helping my grampaw get ready for his doctors appointment when Nora wiggled her way into the bathroom (small bathroom lol) alerted and then scooted around until she could lay on my feet. Heart rate was at 150 and she stayed close to me until I was able to get sat down ❤️🐾 #servicedogtraining #servicedogtask #servicedogtasking #cardiacalertdog #mobilityassistancedog #servicedogsofinstagram #akitamix #akita #dogsofinstagram #pots #potssyndrome #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #disautonomia


0

#Repost @themightysite with @get_repost
・・・
You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #myalgicencephalomyelitis


2

“Seasons of suffering teach us who our real friends are.”
@strongerthanpots

Thanks to those of you who go out of your way everyday, or even if it’s just once a month to check in on me and see how I’m doing. It truly does make all the difference. I love you. ❤️


8

You can't always tell when someone is struggling with chronic illness. That is why we wanted to share this chart and message from @spoonie_village, reminding you that even if you can't "see" your illness, your experience is valid.
•••
@spoonie_village says: “Some days I feel like I’m living the theory, other days it’s more like the reality, but sadly one thing that crops up whenever I meet someone I haven’t seen for a while is the truth of chronic illness. I get seen for all of maybe 10 mins (if not less), I’m dressed, I have make up on, I look for all intents and purposes like me... but, I’m not me because I’ve spent the previous month in bed and at home… who hasn’t had a shower or washed my hair in a while and wears super baggy clothes or pjs because I have little energy for anything else if I spent it making myself look half decent.
•••
So nope, I’m not 'doing great' or 'looking much better.' I’m still struggling, I just decided I needed a break from all that day in day out wading through quicksand and trying not to drown stuff and willingly acknowledge I will pay for the consequences for my actions of 'looking great' later on."
•••
#chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealth #chronicillnesswarrior #fibromyalgia #crohns #mentalillness #fibro #lupus #ileostomy #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #lymedisease #autoimmunedisease #crohnsdisease #ulcerativecolitis #mentalhealthwarrior #fibrofighter #themightysite


55

Look at these cute Tevas I got👣

#teva #spoonie #dysautonomia #chronicillness #potssyndrome #kl


0

Got my new ICE wristband, my old silicone one finally gave up the ghost. Super happy with how pretty it looks!
_____
#pots #potssyndrome #potsie #posturalorthostatictachycardiasyndrome #dysautonomia #ehlersdanlos #ehlersdanlossyndrome #eds #heds #hypermobility #spoonie #chronicillness #incaseofemergency #ice


1

Good morning Kings and Queens for ones that don't know I have POTS... It's a condition that Jack's up your autonomic system. What is that you ask? It's what tells your stomach to digest, and regulates body temperature, and helps regulate blood pressure and heart rates I could go on forever but I won't...lol 🤣 but you would never know unless I tell you! Don't look at someone else's thinking they faking or aka "DOING THE MOST RIGHT NOW" Until you understand what they go through.... Ers don't understand my disorder so I go and I stay for a week because they are afraid to release me and I do further damage to myself and all I need is iv infusions for 3 days.... I guess im saying is if you have nothing nice to say or encouraging don't say anything at all and pray for those that you don't understand. #truthfultuesday #trusttheprocess💯 #loveyourself #benicetopeople #prayforwhatyoudontunderstand #killthejudgements #potssyndrome #potsawareness #chronicillnesswontstopme #chronicilnesswithstyle


2

When you need help, just reach for it. I was really ill after a flight and my lovely #potssyndrome was acting out when I saw this angel to my right, she helped me, invited me to meet her beautiful friends and to share the best worse night ever. Thank you @mmalygaa @majena125 I won’t forget you guys! #portugal🇵🇹 #entrepreneurlife #chronicillness #posturalorthostatictachycardiasyndrome #spoonie #lisbon


2

This made me chuckle tonight!! I’ve just got home from our dress rehearsal and most of my joints were pretty stiff and grumpy after standing stock still and holding a heavy score in a heavy folder for long periods. Luckily I’m not needing painkillers tonight- a good nights sleep should do the trick!! #stiff #stiffjoints #humor #humour #funny #joints #lol #joke #eds #ehlersdanlossyndrome #ehlersdanlos #chronicillness #invisibleillness #connectivetissuedisorder #potssyndrome #potsie #spoons #spoonie #chronicfatigue #fatigue #singer #singerlife #performer #performerlife


2

Anyone ever tried ‘pink salt’ before?
I always have a bottle of it and y’all... it is ABSOLUTELY amazing in Taste! I literally eat a table spoon of it when I have my soft pretzels lol. And LOOK at all the health benefits it has! I’m trying to convert fully to just this at home. Lol it is just so amazing and I feel like it helps with the salt intake
#potssyndrome #pots #potsie #potsielife #dysautonomia #dysautonomiasucks #dysautonomiaawareness #lifestyle #health #pinksalt


3

My new neck pillow arrived today! I've been wanting to buy one since benefit packpayment came through, but what with buying my awesome wheelchair last month & spending £360 on vet bills unexpectedly, it wasn't a priority!! It's way firmer than I was expecting, but the shape feels great on my neck when I lay down. I bought it thinking it was memory foam, but it's actually more like the firmness of a car headrest - unless it gets softer? Idk how it will be to sleep on, we'll see 😉 My last 'memory foam' pillow *really* helped with my chronic neck pain & migraines, but it had the worst memory ever; within a month it was half the thickness, & 6 months later it's soooo flat that I sleep on it folded into 1/4s 😂
#ilovemyboyfriend #chronicpain #chronicfatigue #chronicallyill #chronicillness #POTSsyndrome #disabled #disability #spoonie #asd #aspergers #hypermobile #sicknotweak #transgender #trans #transguy #nonbinary #genderqueer #lgbt+ #wheelchair #dysautonomia #potsie #bipolardisorder


3

eenie meenie miny mo....📚 📖which one should I pick up next??


4

Last take back, I promise, to a day where I felt well enough to cook properly. I’ve just got mad cravings for this vegan Shepard’s pie right now 😍😍😍😩🤤 Was so pleased with how it turned out!
#vegan #vegansofig #veganfoodshare #comfortfood #veganshepherdspie #veggie #veggies #vegetarian #beans #mash #mashedpotatoes #mashpotato #anorexiarecovery #edrecovery #nourishtoflourish #chronicillness #chronicfatiguesyndrome #potssyndrome #pots #fibromyalgia #recovery #yum #foodporn


0

This is why we moved! Why we went through all the stress. For days like this when my husband is on site working so I’m on my own, I have people who can pop round and make me #soup so I can rest and get better. This means so much to me. I’ve had 10 plus years of trying to cope on my own, if feels odd (good odd) to have some help. I have high hopes that this will make such a difference to my health. #support #ehlersdanlossyndrome #potssyndrome #spoonie #recovery #timetolookaftermyself


2