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(Part 2) He bundled me up against the cold and pushed me a few blocks to the @greensagecafe. We had stopped there first around noon but it was packed and I would not have done well or have had room for my wheelchair. But around four it was much quieter and I had so many food options to choose from. I honestly can't even remember the last time we ate at a restaurant. It was so good! We finished the trip with a stop by @hopicecream where half the menu was vegan. It was awesome having so many options throughout the day.
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 We ended up not getting any apples or other produce as it would have taken us another hour out of the way - the one let down for the day. But overall it went really well and I managed to not get sick. I stayed on top of my nausea and pain before they became issues. We didn't have too many accessibility issues aside from parking being a nightmare and downtown having oddly shaped buildings/door frames. The worst part of the day for me was my ears and hearing. Everything was so loud and jumbled up and I shut down/froze multiple times, even with my ear plugs in. It's like my brain gets overloaded with sensory info and goes !!! and powers down. Luckily I have a partner who recognizes my overwhelm and is quick to whisk me away to a quiet spot. He took care of me all day and made sure I was okay and enjoying myself. 🥰
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We did not make it to any of our outdoor options like the waterfall or park but it was cold enough that I was shivering anyway. I used to get up around 3am and drive to the mountains to get there at sunrise to spend the whole day doing everything. Now it's hope to get out of the house by 9 and head home by 5 so we only really have half the day to do things. Hopefully once the dog is ready we can eventually do weekend trips where we spend an overnight and have time to breathe between activities. It's hard for me to go go go and do so many things back to back without time to let my body recover and my mind catch up. But it was still a fun little half day trip and I'm pretty pleased with how well I was able to manage my symptoms.
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(Part 2) He bundled me up against the cold and pushed me a few blocks to the @greensagecafe. We had stopped there first around noon but it was packed and I would not have done well or have had room for my wheelchair. But around four it was much quieter and I had so many food options to choose from. I honestly can't even remember the last time we ate at a restaurant. It was so good! We finished the trip with a stop by @hopicecream where half the menu was vegan. It was awesome having so many options throughout the day. . . We ended up not getting any apples or other produce as it would have taken us another hour out of the way - the one let down for the day. But overall it went really well and I managed to not get sick. I stayed on top of my nausea and pain before they became issues. We didn't have too many accessibility issues aside from parking being a nightmare and downtown having oddly shaped buildings/door frames. The worst part of the day for me was my ears and hearing. Everything was so loud and jumbled up and I shut down/froze multiple times, even with my ear plugs in. It's like my brain gets overloaded with sensory info and goes !!! and powers down. Luckily I have a partner who recognizes my overwhelm and is quick to whisk me away to a quiet spot. He took care of me all day and made sure I was okay and enjoying myself. 🥰 . . We did not make it to any of our outdoor options like the waterfall or park but it was cold enough that I was shivering anyway. I used to get up around 3am and drive to the mountains to get there at sunrise to spend the whole day doing everything. Now it's hope to get out of the house by 9 and head home by 5 so we only really have half the day to do things. Hopefully once the dog is ready we can eventually do weekend trips where we spend an overnight and have time to breathe between activities. It's hard for me to go go go and do so many things back to back without time to let my body recover and my mind catch up. But it was still a fun little half day trip and I'm pretty pleased with how well I was able to manage my symptoms. . .
It’s wonderful to have doctors who care enough to try to get to the bottom of my unexplained symptoms. My rheumatology appointment went well, and is resulting in plenty of tests. I’ve been stuck in bed nearly all year, only getting out of the house for doctor appointments. So, I’m praying we find answers soon. 
#spoonie #disabled #chronicillness #chronicpain #ehlersdanlossyndrome #fibromyalgia #dysautonomia
Dinner! This is a baked polenta and sweet potato with mushrooms 🍄 and tomatoes 🍅 with parsley, lemon 🍋 and chilli 🌶 dressing. Another classic from the green roasting tin cook book. .
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I’m super proud of myself for cooking tonight. @chris00higgins is away and it would have been so easy to eat toast and beans for dinner. Instead I knocked this deliciousness up and have leftovers for tomorrow lunch. .
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It may seem like the simple thing to do - cook yourself dinner. But when you’ve got your mean girl whispering all sorts of nonsense in your ear it’s a pretty big win to achieve. .
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#lookingaftermyself #boringselfcare #dinner #homemade #healthyfood #healthylifestyle #healthyeating #plantbased #letfoodbethymedicine #chronicillness #chronicpain #chronicfatigue #ehlersdanlossyndrome #posturalorthostatictachycardiasyndrome #mastcellactivationsyndrome #spoonie #chronicallyillmum
Dinner! This is a baked polenta and sweet potato with mushrooms 🍄 and tomatoes 🍅 with parsley, lemon 🍋 and chilli 🌶 dressing. Another classic from the green roasting tin cook book. . . I’m super proud of myself for cooking tonight. @chris00higgins is away and it would have been so easy to eat toast and beans for dinner. Instead I knocked this deliciousness up and have leftovers for tomorrow lunch. . . It may seem like the simple thing to do - cook yourself dinner. But when you’ve got your mean girl whispering all sorts of nonsense in your ear it’s a pretty big win to achieve. . . #lookingaftermyself  #boringselfcare  #dinner  #homemade  #healthyfood  #healthylifestyle  #healthyeating  #plantbased  #letfoodbethymedicine  #chronicillness  #chronicpain  #chronicfatigue  #ehlersdanlossyndrome  #posturalorthostatictachycardiasyndrome  #mastcellactivationsyndrome  #spoonie  #chronicallyillmum 
So tired of watching my life pass me by. Missing out on making memories with my family 😢 so tired of fighting my own body 😣😴
So tired of watching my life pass me by. Missing out on making memories with my family 😢 so tired of fighting my own body 😣😴
My shins managed to survive this mornings barbell complex with just a few bruises. I am finishing up my last week of CrossFit before getting back to powerlifting. I am less than a year into powerlifting but I love it and I’m looking forward to getting back at it. #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosathletes #ehlersdanlosathlete #mitralvalveprolapse #mitralvalveprolapseathlete #girlswholift #deadliftsarelife #powerlifting #acepersonaltrainer #acepersonaltraining
My shins managed to survive this mornings barbell complex with just a few bruises. I am finishing up my last week of CrossFit before getting back to powerlifting. I am less than a year into powerlifting but I love it and I’m looking forward to getting back at it. #ehlersdanlossyndrome  #ehlersdanlos  #ehlersdanlosathletes  #ehlersdanlosathlete  #mitralvalveprolapse  #mitralvalveprolapseathlete  #girlswholift  #deadliftsarelife  #powerlifting  #acepersonaltrainer  #acepersonaltraining 
Yesterday Harrison was wearing this gorgeous @dunssweden #zebraprint long sleeved tee from @mootooti
Organic cotton and the quality is superb, you can really tell. I absolutely love this top, especially since zebras are the #edsmascotzebra #ehlersdanlossyndrome mascot! Fellow zebras will understand! 😂

#organic #organiccotton #dunssweden #mootooti #kidsclothes #kidsfashion #kidsfashionistamodel #instakidsfashion #cutekidsfashion
When your humans smell funny, you’ve just got to fix it! Ayla doesn’t waste any time “fixing” your smell after you get out of the shower.
When your humans smell funny, you’ve just got to fix it! Ayla doesn’t waste any time “fixing” your smell after you get out of the shower.
Even more relevant as the weather is changing #winteriscoming #ehlersdanlossyndrome #chronicillness #chronicfatigue #chronicpain #cold
The artist. I really don't like pictures, but someone told me it was important for an audience to be able to visualize the artist with the art. *sigh* Idk. Here you go.

#artist #artistsoninstagram #artistsofinstagram #portrait #portraitlove #selfie #disabled #ehlersdanlossyndrome #invisibleillness #ptsd #artfrompain #chronicillnesswarrior #paintersofinstagram #painter #twentysomething
How do you cope with getting bad medical/health news while you are at work? 
Do you call it a day and leave so you can give yourself the time to process and grieve? 
Or do you give yourself a couple minutes to regain composure and then bottle it up and go about your day as if nothing has happened?
If you are apart of the latter group, how do you managed to regain composure? How do you pull yourself together?
How do you cope with getting bad medical/health news while you are at work? Do you call it a day and leave so you can give yourself the time to process and grieve? Or do you give yourself a couple minutes to regain composure and then bottle it up and go about your day as if nothing has happened? If you are apart of the latter group, how do you managed to regain composure? How do you pull yourself together?
Texting can get crazy when your grandmother learns how to use Bitmoji!!! My grandmother is 82 years old! She texts like a pro, Facebooks all the time and emails. She’s very up to date with the tech for her age. I love my nana! #spoonie #spoonielife #spooniewarrior #chronicillness #chronicpain #chronicfatigue #staypositive #blessed #spreadawareness #asthma #fibromyalgia #invisibleillness #anxiety #socialanxiety #sensoryprocessingdisorder #ehlersdanlossyndrome #texas #staystrong #zebra
Texting can get crazy when your grandmother learns how to use Bitmoji!!! My grandmother is 82 years old! She texts like a pro, Facebooks all the time and emails. She’s very up to date with the tech for her age. I love my nana! #spoonie  #spoonielife  #spooniewarrior  #chronicillness  #chronicpain  #chronicfatigue  #staypositive  #blessed  #spreadawareness  #asthma  #fibromyalgia  #invisibleillness  #anxiety  #socialanxiety  #sensoryprocessingdisorder  #ehlersdanlossyndrome  #texas  #staystrong  #zebra 
Not gonna lie, today was shit. Sometimes it's really hard to get able bodied healthcare professionals to understand where you're coming from. Yes, it is their job and they see similar people day in, day out, but everyone one of our stories are different and we have different hopes and aspirations. Being able to achieve those, often requires help from healthcare professionals to provide the support needed, tailored to your situation...so if you can't get them to understand what you want and need, or you want the something from the black hole of funding, where it isn't covered by any department, life can be frustrating. Yes, I'm still getting help, but I'm also constantly having to adjust what I'm able to hope for, more than an able bodied person does. And on top of that, I regularly have to prove that I'm not able bodied. I didn't ask for any of this, I'm just trying to find my way through it...I just wish there was more realistic help out there.
Anyway, I'm looking forward to a girly day tomorrow around my appointment at Leeds Dental Institute and then catch up drinks with @lauraclarkeex and dinner with my friends on wednesday
#ehlersdanlossyndrome #invisibledisability #ehlersdanlosuk #edsuk #equalityindisability
Not gonna lie, today was shit. Sometimes it's really hard to get able bodied healthcare professionals to understand where you're coming from. Yes, it is their job and they see similar people day in, day out, but everyone one of our stories are different and we have different hopes and aspirations. Being able to achieve those, often requires help from healthcare professionals to provide the support needed, tailored to your situation...so if you can't get them to understand what you want and need, or you want the something from the black hole of funding, where it isn't covered by any department, life can be frustrating. Yes, I'm still getting help, but I'm also constantly having to adjust what I'm able to hope for, more than an able bodied person does. And on top of that, I regularly have to prove that I'm not able bodied. I didn't ask for any of this, I'm just trying to find my way through it...I just wish there was more realistic help out there. Anyway, I'm looking forward to a girly day tomorrow around my appointment at Leeds Dental Institute and then catch up drinks with @lauraclarkeex and dinner with my friends on wednesday #ehlersdanlossyndrome  #invisibledisability  #ehlersdanlosuk  #edsuk  #equalityindisability 
10 tips to start a low histamine diet.
New blog post!
I found going low histamine really daunting because there is so little awareness and it feels as though there are so few options food-wise.
I’ve put together 10 tips that I hope will help you get started, or maintain, a low histamine diet.
Hope it helps!
Link in bio.
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#lowhistamine #lowhistaminediet #lowhistaminefoods #mcas #mcad #mastcellactivation #mastcellactivationdisorder #mastie #mastcellactivationsyndrome #pots #eds #posturalorthostatictachycardiasyndrome #ehlersdanlossyndrome #hypermobility #fibromyalgia #ic #interstitialcystitis #bladderpain #painfulbladdersyndrome #autoimmunedisease #migraine #chronicmigraine #headache #chronicheadache #allodynia #chronicillness #vestibularmigraine #vertigo #chronicpain
10 tips to start a low histamine diet. New blog post! I found going low histamine really daunting because there is so little awareness and it feels as though there are so few options food-wise. I’ve put together 10 tips that I hope will help you get started, or maintain, a low histamine diet. Hope it helps! Link in bio. . #lowhistamine  #lowhistaminediet  #lowhistaminefoods  #mcas  #mcad  #mastcellactivation  #mastcellactivationdisorder  #mastie  #mastcellactivationsyndrome  #pots  #eds  #posturalorthostatictachycardiasyndrome  #ehlersdanlossyndrome  #hypermobility  #fibromyalgia  #ic  #interstitialcystitis  #bladderpain  #painfulbladdersyndrome  #autoimmunedisease  #migraine  #chronicmigraine  #headache  #chronicheadache  #allodynia  #chronicillness  #vestibularmigraine  #vertigo  #chronicpain 
Vegan chilli doesn't set my stomach off which is new because everything sets my stomach off
#food #vegan #vegetarian #ehlersdanlossyndrome
Our mission at The Bootree Clinic is to help you reclaim your health by working with you directly, to help identify and gently manage the symptoms which hapen as a result of Fibromyalgia, Myalgic Encephalitis (ME) and Chronic Fatigue Syndrome (CFS). We do this by taking the following steps:⠀
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We offer a FREE no-obligation 30-minute conversation as standard which enables you and our practitioners, to get to know one another. This conversation is conducted via telephone or Skype and provides you with the opportunity to ask as many questions as you need, whilst enabling our practitioners the opportunity to evaluate how they can best support you.⠀
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Book your call on link in BIO. ⠀
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#chronicillness #chronicpain #spoonie #invisibleillness #fibromyalgia #anxiety #mentalhealth #pain #depression #spoonielife #fibrowarrior #autoimmunedisease #chronicfatigue #arthritis #health #butyoudontlooksick #endometriosis #fibro #selfcare #ehlersdanlossyndrome #chronicallyill #spoonies #ptsd #chronic #ibs #pots #disability #healing #mentalillness #bhfyp
Our mission at The Bootree Clinic is to help you reclaim your health by working with you directly, to help identify and gently manage the symptoms which hapen as a result of Fibromyalgia, Myalgic Encephalitis (ME) and Chronic Fatigue Syndrome (CFS). We do this by taking the following steps:⠀ 🔸⠀ We offer a FREE no-obligation 30-minute conversation as standard which enables you and our practitioners, to get to know one another. This conversation is conducted via telephone or Skype and provides you with the opportunity to ask as many questions as you need, whilst enabling our practitioners the opportunity to evaluate how they can best support you.⠀ 🔸⠀ Book your call on link in BIO. ⠀ .⠀ .⠀ .⠀ .⠀ .⠀ #chronicillness  #chronicpain  #spoonie  #invisibleillness  #fibromyalgia  #anxiety  #mentalhealth  #pain  #depression  #spoonielife  #fibrowarrior  #autoimmunedisease  #chronicfatigue  #arthritis  #health  #butyoudontlooksick  #endometriosis  #fibro  #selfcare  #ehlersdanlossyndrome  #chronicallyill  #spoonies  #ptsd  #chronic  #ibs  #pots  #disability  #healing  #mentalillness  #bhfyp 
Once upon a time there was a girl who liked juice 🤤 I’m getting ready for a very busy couple of weeks ahead, please stay strong body 💪😄
Once upon a time there was a girl who liked juice 🤤 I’m getting ready for a very busy couple of weeks ahead, please stay strong body 💪😄
Not long ago, a friend told me that I seem like my true self more now than at any other time since he’s known me. I’ve also been heard from other friends that I seem like a different person.
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Maybe it’s because I don’t sugarcoat things as much now. I’m honest about my scars. I have less patience when people won’t communicate like grown-ups, and I’m less likely to let someone off the hook when they aren’t honest/open.
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I still have the same insecurities, emotional flaws, and anxieties I’ve had my whole life…and now they’ve been joined by a few more. But I’m focused on my wellbeing for the first time…so I have some hope that I'll one day be able to overcome some of these.
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One thing that hasn’t changed is my drive to learn and understand everything & everyone I come across. I have a whole lot of questions and continually seek answers, even as I find that there are often no right answers or explanations in life.
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I’ve started doing some of the things I really don’t want to do (and/or that scare me). But I have a long way to go.
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This picture is from a few weeks before I was diagnosed with joint hypermobility and fibromyalgia. I remember the pain & fatigue, but I also remember some good things. (For example: llamas + coffee 😁) When you live with chronic pain, you get used to functioning a certain level of pain. But it means your baseline is closer to the ground than most people's...so when bad flares come along, they really knock you down. Pain hasn't been great since last week and got worse over the weekend, so I'm hoping this week will get better. In the meantime, I'm trying to do what I gotta do--smile and fake it.
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I’ve allowed my physical health to slide back down my list of priorities now that I’m back at work and doing all the things. Many of my health issues have continued to go unexplained by various tests, and I don’t have the time or motivation to fight the all-too-familiar frustration of attempting and failing to navigate the healthcare system. I would (and did) do it for someone else, but can't seem to for myself. Neuro appt this afternoon, then I'll worry about what's next. One step at a time.
Not long ago, a friend told me that I seem like my true self more now than at any other time since he’s known me. I’ve also been heard from other friends that I seem like a different person. . Maybe it’s because I don’t sugarcoat things as much now. I’m honest about my scars. I have less patience when people won’t communicate like grown-ups, and I’m less likely to let someone off the hook when they aren’t honest/open. . I still have the same insecurities, emotional flaws, and anxieties I’ve had my whole life…and now they’ve been joined by a few more. But I’m focused on my wellbeing for the first time…so I have some hope that I'll one day be able to overcome some of these. . One thing that hasn’t changed is my drive to learn and understand everything & everyone I come across. I have a whole lot of questions and continually seek answers, even as I find that there are often no right answers or explanations in life. . I’ve started doing some of the things I really don’t want to do (and/or that scare me). But I have a long way to go. . This picture is from a few weeks before I was diagnosed with joint hypermobility and fibromyalgia. I remember the pain & fatigue, but I also remember some good things. (For example: llamas + coffee 😁) When you live with chronic pain, you get used to functioning a certain level of pain. But it means your baseline is closer to the ground than most people's...so when bad flares come along, they really knock you down. Pain hasn't been great since last week and got worse over the weekend, so I'm hoping this week will get better. In the meantime, I'm trying to do what I gotta do--smile and fake it. . I’ve allowed my physical health to slide back down my list of priorities now that I’m back at work and doing all the things. Many of my health issues have continued to go unexplained by various tests, and I don’t have the time or motivation to fight the all-too-familiar frustration of attempting and failing to navigate the healthcare system. I would (and did) do it for someone else, but can't seem to for myself. Neuro appt this afternoon, then I'll worry about what's next. One step at a time.
So Last Christmas I ended up with a dislocated knee and to get me in the festive mood my mum decorated my Robert Jones bandaging with Christmas lights so I wouldn’t get so down🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄#spoonielife #spoonieproblems #spooniewarrior #invisibleillness #eds #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #chronicpain #chronicillness #chronicallyill #ill #potssyndrome #fibromyalgia #chronicpainwarrior #spoonie #hypermobility #brokenleg
So Last Christmas I ended up with a dislocated knee and to get me in the festive mood my mum decorated my Robert Jones bandaging with Christmas lights so I wouldn’t get so down🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄🎄#spoonielife  #spoonieproblems  #spooniewarrior  #invisibleillness  #eds  #ehlersdanlossyndrome  #ehlersdanlos  #ehlersdanlosawareness  #chronicpain  #chronicillness  #chronicallyill  #ill  #potssyndrome  #fibromyalgia  #chronicpainwarrior  #spoonie  #hypermobility  #brokenleg 
Not sure by now how #invisibledisability really looks, but really sure how it feels to be dismissed day by day just because “I don’t look sick” or “I was worse before".⠀
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What is it to have an #invisibleillness? An eternal fight with symptoms but more than that, with judgment.⠀
---⠀ Judgment at ER, special parking, and mostly everywhere. Disease and their limitations don’t discriminate, but people definitely do and there our first long battle begins. @denissevallejom⠀
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#eds #ehlersdanlos #ehlersdanlossyndrome #hypermobile #hypermobility  #chronicillness #chronicpain
Not sure by now how #invisibledisability  really looks, but really sure how it feels to be dismissed day by day just because “I don’t look sick” or “I was worse before".⠀ ---⠀ What is it to have an #invisibleillness ? An eternal fight with symptoms but more than that, with judgment.⠀ ---⠀ Judgment at ER, special parking, and mostly everywhere. Disease and their limitations don’t discriminate, but people definitely do and there our first long battle begins. @denissevallejom⠀ .⠀ .⠀ .⠀ .⠀ #eds  #ehlersdanlos  #ehlersdanlossyndrome  #hypermobile  #hypermobility  #chronicillness  #chronicpain 
One of the benefits of working as a freelance writer is that I can set my schedule around my health. Whereas most people start their work week on Monday, I’m having an appointment with my rheumatologist instead. 
#freelance #freelancewriter #entrepreneur #writer #disabled #spoonie #ehlersdanlossyndrome #fibromyalgia #dysautonomia #wheelchairgirl #ambulatorywheelchairusersexist
GLCCC - Black Raz
Recommended for: Headache, Appetite, Mild to Moderate Aches.  Not a mix of terpenes I usually get, reminds me of the first time I tried Shishkaberry, hard to place.  Equally spacey and awake, does not creep up as slowly as I would have guessed, it’s effects are not there until they are very present. #rimmp #ehlersdanlossyndrome #plantsnotpills #hypermobility #invisibleillness #chronicpain
1 RUN LEFT!!!! So I may not be running 5k in 30 minutes but I’m not miles off either. Can’t actually believe I’ve managed to do this still. The last week I started to get a bit of a mental block with running and how unsafe I felt in my local park was really starting to get to me but tonight I really enjoyed my run. I’m so glad I got that feeling back because it honestly feels incredible. Tonight I stuck to the 30 minute run but for a second I did contemplate carrying on. I fully believe I could of but I also didn’t want to go too far just as I had got that feeling back. If I do get that feeling on the next one, I think I will keep going. I feel so much healthier and the weight I’ve lost has done so much for me both physically and mentally. I really hope this is just the beginning of my running journey and hope that one day I can complete multiple marathons and raise both money and awareness for Ehlers Danlos syndrome. #running #couckto5k #lastrun #journey #ehlersdanlossyndrome
1 RUN LEFT!!!! So I may not be running 5k in 30 minutes but I’m not miles off either. Can’t actually believe I’ve managed to do this still. The last week I started to get a bit of a mental block with running and how unsafe I felt in my local park was really starting to get to me but tonight I really enjoyed my run. I’m so glad I got that feeling back because it honestly feels incredible. Tonight I stuck to the 30 minute run but for a second I did contemplate carrying on. I fully believe I could of but I also didn’t want to go too far just as I had got that feeling back. If I do get that feeling on the next one, I think I will keep going. I feel so much healthier and the weight I’ve lost has done so much for me both physically and mentally. I really hope this is just the beginning of my running journey and hope that one day I can complete multiple marathons and raise both money and awareness for Ehlers Danlos syndrome. #running  #couckto5k  #lastrun  #journey  #ehlersdanlossyndrome 
Sharing another mirror selfie from Saturday because I think I look sort of stylish and fierce in this one. But in reality I couldn’t actually zip up the skirt because my stomach was swollen and my stitches hurt from my surgery 💁🏻‍♀️ #BehindTheScenesMagic
Sharing another mirror selfie from Saturday because I think I look sort of stylish and fierce in this one. But in reality I couldn’t actually zip up the skirt because my stomach was swollen and my stitches hurt from my surgery 💁🏻‍♀️ #BehindTheScenesMagic 
This is the face you make when you’ve spent the entire weekend finding creative ways to stay out of your home. I’m thankful I had the energy to enjoy this beautiful weather, but annoyed that my safe place, my home was a huge trigger that I had to stay away from. 
I’m fortunate that I have help cleaning my home. Although sometimes it doesn’t feel that way, I liked putting on my headphones and cleaning my house. I also knew it was done properly because I did it myself. I’m no longer in a position where this is possible. Even the natural cleaning products that I used to make trigger me. And the over use of my back and muscles will send me into a pain flare for days. 
So I researched a company that makes an all natural cleaning solution and offered a scent free option. It was perfect, they come every so often to give the house a good cleaning and get to everything I miss.
I was unaware that we had new people this time, and they failed to read the home notes stating that absolutely no essential oils are to be used due to severe allergy! My entire home was bathed in essential oils. When we came back and opened the door, it hit me like a ton of bricks. Essential oils are a HUGE trigger for me. They flare up my MCAS symptoms like no other, sending me into a flare for days. 
I immediately felt it coming, the dizziness and nausea, my asthma went into a full blown attack, I felt like I was on fire and my brain started with the intrusive, ridiculous thoughts and anxiety. My monthly xolair shot is due in a few days and this was a reminder that it is not a cure all. 
We opened all the windows and have bowls of baking soda everywhere to absorb the smell, I’m sleeping in 30 degree temperatures with the windows open. That first night I woke up feeling like I had been hit by a truck, but thankfully it’s almost gone today. Before xolair this would’ve been WAY worse. 
The cleaning company was apologetic and didn’t charge us. They’re having a meeting today to talk about the importance of reading the notes before entering a home. I hope more awareness can be brought to this illness and what happened to me can be a teaching tool for them, so it won’t happen to anyone else.
This is the face you make when you’ve spent the entire weekend finding creative ways to stay out of your home. I’m thankful I had the energy to enjoy this beautiful weather, but annoyed that my safe place, my home was a huge trigger that I had to stay away from. I’m fortunate that I have help cleaning my home. Although sometimes it doesn’t feel that way, I liked putting on my headphones and cleaning my house. I also knew it was done properly because I did it myself. I’m no longer in a position where this is possible. Even the natural cleaning products that I used to make trigger me. And the over use of my back and muscles will send me into a pain flare for days. So I researched a company that makes an all natural cleaning solution and offered a scent free option. It was perfect, they come every so often to give the house a good cleaning and get to everything I miss. I was unaware that we had new people this time, and they failed to read the home notes stating that absolutely no essential oils are to be used due to severe allergy! My entire home was bathed in essential oils. When we came back and opened the door, it hit me like a ton of bricks. Essential oils are a HUGE trigger for me. They flare up my MCAS symptoms like no other, sending me into a flare for days. I immediately felt it coming, the dizziness and nausea, my asthma went into a full blown attack, I felt like I was on fire and my brain started with the intrusive, ridiculous thoughts and anxiety. My monthly xolair shot is due in a few days and this was a reminder that it is not a cure all. We opened all the windows and have bowls of baking soda everywhere to absorb the smell, I’m sleeping in 30 degree temperatures with the windows open. That first night I woke up feeling like I had been hit by a truck, but thankfully it’s almost gone today. Before xolair this would’ve been WAY worse. The cleaning company was apologetic and didn’t charge us. They’re having a meeting today to talk about the importance of reading the notes before entering a home. I hope more awareness can be brought to this illness and what happened to me can be a teaching tool for them, so it won’t happen to anyone else.
Please help out a POTSIE Team DAF member with your experiences! ⁉️The doc thinks possible mild gastroparises most likely caused by POTS. If the gastric emptying scan looks normal we are going to schedule an Esophogeal Manometry... which sounds super scary and would love to know if anyone else has had one?
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#dysautonomia #teamdaf #dysautonomiaawareness #ehlersdanlossyndrome #mito #chronicillness #teamdaf #invisableillness #mastcell #mastcelldisease #gastroparesis  #sickofbeingsick  #sick #ehlersdanlos #potsie #potsies #potsy #pots #eds #tachycardia #lowbloodpressure #mitochondrialdisease #autonomicdysfunction #salty #highbloodpressure
Please help out a POTSIE Team DAF member with your experiences! ⁉️The doc thinks possible mild gastroparises most likely caused by POTS. If the gastric emptying scan looks normal we are going to schedule an Esophogeal Manometry... which sounds super scary and would love to know if anyone else has had one? ⁉️ * * * #dysautonomia  #teamdaf  #dysautonomiaawareness  #ehlersdanlossyndrome  #mito  #chronicillness  #teamdaf  #invisableillness  #mastcell  #mastcelldisease  #gastroparesis  #sickofbeingsick  #sick  #ehlersdanlos  #potsie  #potsies  #potsy  #pots  #eds  #tachycardia  #lowbloodpressure  #mitochondrialdisease  #autonomicdysfunction  #salty  #highbloodpressure 
So recently I have decided I am going vegan.
Mostly for moral reasons but a lot of it is also health benefits.
I’m currently in the process of cutting stuff out, and I’ve had a couple slip ups but I’m not gonna beat myself up about it.
I can’t wait to reap some benefits of predominantly plant based food! 
#vegan #goingvegan #plantbased #plantbaseddiet #veganforhealth  #veganforanimals #chronicillness #chronicpain #fatigue #chronicfatigue #copingwithchronicpain #livingwithachronicillness #fibromyalgia #ehlersdanlossyndrome #hypermobility #disability #younganddisabled #disabled #proudzebra #spoonie #youngspoonie #spoonieproblems #spreadawareness #health #healthyfood #healthbenefits
So recently I have decided I am going vegan. Mostly for moral reasons but a lot of it is also health benefits. I’m currently in the process of cutting stuff out, and I’ve had a couple slip ups but I’m not gonna beat myself up about it. I can’t wait to reap some benefits of predominantly plant based food! #vegan  #goingvegan  #plantbased  #plantbaseddiet  #veganforhealth  #veganforanimals  #chronicillness  #chronicpain  #fatigue  #chronicfatigue  #copingwithchronicpain  #livingwithachronicillness  #fibromyalgia  #ehlersdanlossyndrome  #hypermobility  #disability  #younganddisabled  #disabled  #proudzebra  #spoonie  #youngspoonie  #spoonieproblems  #spreadawareness  #health  #healthyfood  #healthbenefits 
Just received the official phone call that apartment application has been approved! Such a blessing to bramble to go ahead with transferring all medical files to Banner Medical and to start the paperwork process for my benefits to be transferred! What a way to start this week. #newseason #ingodshands #steadfast #constantcare #autonomicdysfunction #ehlersdanlossyndrome #warrior
Fall 10x10 Day 1: My favorite tee-shirt, leggings, and ratty but comfy sweater over my bathing suit on my way to my second session of aqua therapy. #fall10x10 #fall10x10challenge #10x10challenge #spoonielife #dysautonomia #eds #ehlersdanlossyndrome
New act still in evolution... almost born.  I have the music, the costume, the headdress but... still no underwear... might as well go but naked. #youmademeamonster #missbotero #newact #burlesque #neoburlesque #experimentalburlesque #keepdiggingwoman #backtoburlesqueroots #lifeanddeath #eds #parkinsonsdisease #followmeifyoucan #ehlersdanlossyndrome #disabledburlesqueartist #punksnotdead #youtriedtocutmywingsyouforgotihadclaws
Home from work, lemon drizzle cake made, shepherds pie ready, waiting for my chicken to come home from his day. 💘

Cannot wait to jump into my bed later, had a terrible nights sleep yesterday & I am hoping tonight will be smooth sailing...we can only hope! 😴

How was your day lovely’s? 
#jointhypermobilitysyndrome #bedroomdecor #bedroomdecoration #bedroominterior #bedroomstyling #homeinterior #wallquotes #ehlersdanlossyndrome #hypermobility #chronicillness #chronicpain #sleepdeprived
Home from work, lemon drizzle cake made, shepherds pie ready, waiting for my chicken to come home from his day. 💘 Cannot wait to jump into my bed later, had a terrible nights sleep yesterday & I am hoping tonight will be smooth sailing...we can only hope! 😴 How was your day lovely’s? #jointhypermobilitysyndrome  #bedroomdecor  #bedroomdecoration  #bedroominterior  #bedroomstyling  #homeinterior  #wallquotes  #ehlersdanlossyndrome  #hypermobility  #chronicillness  #chronicpain  #sleepdeprived 
I can’t remember the first time I said the words, “I am disabled” or anything to that effect.
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“Disabled” was a descriptor that got added to my vocabulary in the same way that “I have blonde hair” would become my new normal if I decided to dye my hair. I don’t view my disability as a negative and so to me it goes along with other words like female, artist, bookworm, Hispanic, short, and writer. Disability just part of me; it’s not a bad word.
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For some people it’s a tough word to swallow tho. Some people with disabilities don’t like the term cause it feels like saying “lacking in ability” but to me I feel that makes sense. I AM lacking in the ability to walk, but why does that have to be a bad thing?
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In my mind, disability only feels like a negative word if you give it the power to be one. Yes, it points out an inability to do something, but that doesn’t mean you are less of an amazing human or that you can’t do a hundred other equally amazing things.
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Plenty of people have changed the world while sitting down, who says you can’t make a difference too? ♿️
I can’t remember the first time I said the words, “I am disabled” or anything to that effect. . “Disabled” was a descriptor that got added to my vocabulary in the same way that “I have blonde hair” would become my new normal if I decided to dye my hair. I don’t view my disability as a negative and so to me it goes along with other words like female, artist, bookworm, Hispanic, short, and writer. Disability just part of me; it’s not a bad word. . For some people it’s a tough word to swallow tho. Some people with disabilities don’t like the term cause it feels like saying “lacking in ability” but to me I feel that makes sense. I AM lacking in the ability to walk, but why does that have to be a bad thing? . In my mind, disability only feels like a negative word if you give it the power to be one. Yes, it points out an inability to do something, but that doesn’t mean you are less of an amazing human or that you can’t do a hundred other equally amazing things. . Plenty of people have changed the world while sitting down, who says you can’t make a difference too? ♿️
I had no idea I’d be doing this today at #carriagedriving Utterly exhausted now but sometimes it’s worth spending all your #spoonie spoons to be round #horses on a beautiful #autumn day. ☺️ And #ehlersdanlossyndrome only played up at the end. 👍 Rest days for the next couple of days. That’s how it goes which is frustrating but it’s better to do a little bit of something you enjoy and nothing at all. I’m grateful for any activities that is just for fun. Most of my days are filled with trying to keep my body working. #spoonielife #potsyndrome #butyoudontlooksick #invisibleillness #ichoosejoy
I had no idea I’d be doing this today at #carriagedriving  Utterly exhausted now but sometimes it’s worth spending all your #spoonie  spoons to be round #horses  on a beautiful #autumn  day. ☺️ And #ehlersdanlossyndrome  only played up at the end. 👍 Rest days for the next couple of days. That’s how it goes which is frustrating but it’s better to do a little bit of something you enjoy and nothing at all. I’m grateful for any activities that is just for fun. Most of my days are filled with trying to keep my body working. #spoonielife  #potsyndrome  #butyoudontlooksick  #invisibleillness  #ichoosejoy 
Our newly updated leaflet, A Teacher’s Guide to Ehlers-Danlos Syndrome/ Hypermobility Spectrum Disorder. To print the PDF version (suggested), follow the link: https://drive.google.com/file/d/1_6BmwARKBUT1RjX0Yt7z1v5jjC0ZOt4g/view?usp=sharing
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#ehlersdanlossyndrome #eds #hypermobility #hypermobilityspectrumdisorder #teachersguidetoeds #irishedsandhsd #edsawareness #eds4ire #ehlersdanlosawareness #hypermobilechildren #hypermobilekids #specialneedschildren #classroom #disabilityawareness #zebrastrong #hiddendisability #chroicillness #growingpains #raredisease #rarelydiagnosed #spoonie @edswellness @edsawareness_official @ehlersdanlosuk @hypermobilityconnect @hmsacharity
Our newly updated leaflet, A Teacher’s Guide to Ehlers-Danlos Syndrome/ Hypermobility Spectrum Disorder. To print the PDF version (suggested), follow the link: https://drive.google.com/file/d/1_6BmwARKBUT1RjX0Yt7z1v5jjC0ZOt4g/view?usp=sharing • • • #ehlersdanlossyndrome  #eds  #hypermobility  #hypermobilityspectrumdisorder  #teachersguidetoeds  #irishedsandhsd  #edsawareness  #eds4ire  #ehlersdanlosawareness  #hypermobilechildren  #hypermobilekids  #specialneedschildren  #classroom  #disabilityawareness  #zebrastrong  #hiddendisability  #chroicillness  #growingpains  #raredisease  #rarelydiagnosed  #spoonie  @edswellness @edsawareness_official @ehlersdanlosuk @hypermobilityconnect @hmsacharity
finally getting referrals to genetics & rheumatology. .
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I'm a little frustrated. my GP was not getting why I want an official diagnosis if she and my PT agree I am in the hypermobility spectrum. I have so much wrong with me I just want someone to tell me I'm not fucking insane and to maybe help me with pain relief and not getting sick 24/7.
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#undiagnosed #chronicillness #chronicpain #hypermobility #rheumatology #selfcare #personal #medical #immunesystem #ehlersdanlossyndrome #spoonie #disability
finally getting referrals to genetics & rheumatology. . . . I'm a little frustrated. my GP was not getting why I want an official diagnosis if she and my PT agree I am in the hypermobility spectrum. I have so much wrong with me I just want someone to tell me I'm not fucking insane and to maybe help me with pain relief and not getting sick 24/7. . . . #undiagnosed  #chronicillness  #chronicpain  #hypermobility  #rheumatology  #selfcare  #personal  #medical  #immunesystem  #ehlersdanlossyndrome  #spoonie  #disability 
Vraiment pas le moral depuis plusieurs jours.. Je n'arrive vraiment pas à géré.. entre les douleurs, la dépression, l'anorexie, et ma mère je suis vraiment à bout..
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#depression #aboutdeforce #fatigue #SED #douleurs #ehlersdanlos #maman #foutuemaladie #staystrong #ehlersdanlossyndrome #anorexie
MEDICAL TRAUMA *deep breath*⠀
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I'd like to think that I've come a bloody long way when it comes to accepting my chronic illnesses. It's something that I have to work on every day, but I'm proud of how far I have come & feel like a totally different person than I did even a few years ago.⠀
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But the more I come to terms with that stuff, the more I've been thinking about the complex medical trauma that I've been through over the years & the 'micro-traumas' (although, I don't know if that's the accurate way to describe it) that I go through every day just trying to live with my precarious body in a world that feels inherently dangerous. ⠀
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I was trying to write this on Sat night but it kinda triggered me, so I won't go into detail. Suffice to say, I had very severe reactions to some medication I was put on that caused terrifying psychosis. ⠀
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A couple more similar reactions happened with similar medication over the years, and it was like I had to go through recovery all over again. The hardest part was being told that those reactions were 'incredibly rare' and made to feel like I was completely mad - when in fact I've met many people who have reacted in exactly the same ways - which was recently validated by therapists which was so huge for me.⠀
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Take that big stuff aside, I think the constant underlying stress of having to navigate constant danger for my body is starting to take a huge toll. I literally can't afford to relax. That's built up for 20 years. ⠀
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The thing that's been hard, is that even as the acute trauma has receded over the years, a new type of paranoid anxiety seems to be getting worse. Reading @rhiannonlucycosslett's beautifully written article about PTSD made me sit down and recognise that this is what I've been thinking for a while. ⠀
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Taking aside all the other shit that happens to us in our lives, I've heard so little recognition from medical professionals of the full-blown trauma of living with chronic illness for all the other things we have to go through outside the shittiness of our health. ⠀
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I've been telling myself 'it's time to move forward' and get help. I wanted to share in case anyone else feels this way too. You're not alone
MEDICAL TRAUMA *deep breath*⠀ ⠀ I'd like to think that I've come a bloody long way when it comes to accepting my chronic illnesses. It's something that I have to work on every day, but I'm proud of how far I have come & feel like a totally different person than I did even a few years ago.⠀ ⠀ But the more I come to terms with that stuff, the more I've been thinking about the complex medical trauma that I've been through over the years & the 'micro-traumas' (although, I don't know if that's the accurate way to describe it) that I go through every day just trying to live with my precarious body in a world that feels inherently dangerous. ⠀ ⠀ I was trying to write this on Sat night but it kinda triggered me, so I won't go into detail. Suffice to say, I had very severe reactions to some medication I was put on that caused terrifying psychosis. ⠀ ⠀ A couple more similar reactions happened with similar medication over the years, and it was like I had to go through recovery all over again. The hardest part was being told that those reactions were 'incredibly rare' and made to feel like I was completely mad - when in fact I've met many people who have reacted in exactly the same ways - which was recently validated by therapists which was so huge for me.⠀ ⠀ Take that big stuff aside, I think the constant underlying stress of having to navigate constant danger for my body is starting to take a huge toll. I literally can't afford to relax. That's built up for 20 years. ⠀ ⠀ The thing that's been hard, is that even as the acute trauma has receded over the years, a new type of paranoid anxiety seems to be getting worse. Reading @rhiannonlucycosslett's beautifully written article about PTSD made me sit down and recognise that this is what I've been thinking for a while. ⠀ ⠀ Taking aside all the other shit that happens to us in our lives, I've heard so little recognition from medical professionals of the full-blown trauma of living with chronic illness for all the other things we have to go through outside the shittiness of our health. ⠀ ⠀ I've been telling myself 'it's time to move forward' and get help. I wanted to share in case anyone else feels this way too. You're not alone
Sometimes I feel like I never had a chance in life because I experienced my first traumatic episode at  2 and 1/2 years old. My traumatic experiences continued well into my early adult years. I often feel like I don’t know who I am. I dissociate for a large portion of my days - the world becomes blurry and paint-like; I feel like I’m floating outside my body; sound becomes fuzzy and voices become tunnel-like; I feel like I’m in a time warp where everything is slowing down and speeding up at the same time. Who am I? ...
#fibromyalgia #fibrowarrior  #spoonie #spoons #lifewithspoons #livinglifewithlimitedspoons #chronicillness #chronicpain #chronicwarrior #chronicillnesswarrior #depersonalization #dissociation #spoonielife #spooniecommunity #spoonies #spooniewarrior #ehlersdanlossyndrome #eds #mentalhealth #mentalillness #ptsd #anxiety #depression #insomnia #medication #chronicfatigue #chronicillness #disabled
Sometimes I feel like I never had a chance in life because I experienced my first traumatic episode at 2 and 1/2 years old. My traumatic experiences continued well into my early adult years. I often feel like I don’t know who I am. I dissociate for a large portion of my days - the world becomes blurry and paint-like; I feel like I’m floating outside my body; sound becomes fuzzy and voices become tunnel-like; I feel like I’m in a time warp where everything is slowing down and speeding up at the same time. Who am I? ... #fibromyalgia  #fibrowarrior  #spoonie  #spoons  #lifewithspoons  #livinglifewithlimitedspoons  #chronicillness  #chronicpain  #chronicwarrior  #chronicillnesswarrior  #depersonalization  #dissociation  #spoonielife  #spooniecommunity  #spoonies  #spooniewarrior  #ehlersdanlossyndrome  #eds  #mentalhealth  #mentalillness  #ptsd  #anxiety  #depression  #insomnia  #medication  #chronicfatigue  #chronicillness  #disabled 
Anybody else dream of being a human shopping cart when they grew up? Just me? .
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.another day another Drs appt. #betrayalofthebody #ehlersdanlossyndrome #cyclicalvomitingsyndrome #eds #cvs #spoonielove #thespooniesisterhood #zebrastrong
“No one knows what you have been through, or what your pretty eyes have seen, but I can reassure you—whatever you have conquered, it shines through your mind.” 💕
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#servicedog #lupus #epilepsy #ehlersdanlossyndrome #mastcellactivationsyndrome #dysautonomia #POTS #connectivetissuedisease #gsdsofinstagram #germanshepherdsofinstagram #workingdog #dragonthegsd #germanshepherddog #dogsonadventures #thegermanshepherdworld #fitdogsofinsta #GSD_feature #gsdloverss #workinglinegsd #forevergermansheps #dogphotography #instagsd #gsdlife #dogstagram #gsdlove #gsdstagram #gsdunited #motivationmonday
“No one knows what you have been through, or what your pretty eyes have seen, but I can reassure you—whatever you have conquered, it shines through your mind.” 💕 ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ #servicedog  #lupus  #epilepsy  #ehlersdanlossyndrome  #mastcellactivationsyndrome  #dysautonomia  #POTS  #connectivetissuedisease  #gsdsofinstagram  #germanshepherdsofinstagram  #workingdog  #dragonthegsd  #germanshepherddog  #dogsonadventures  #thegermanshepherdworld  #fitdogsofinsta  #GSD_feature  #gsdloverss  #workinglinegsd  #forevergermansheps  #dogphotography  #instagsd  #gsdlife  #dogstagram  #gsdlove  #gsdstagram  #gsdunited  #motivationmonday 
Don’t sell me your bullshit “fixes” and “cures” Those of us with #chronicillness don’t need snake oil, we need results! #invisableillness #ehlersdanlossyndrome #potssyndrome #adrenalinsufficiency #secondaryadrenalinsufficiency #spoonie #zebrastrong
my reality since my vEDS diagnosis
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receiving my diagnosis was difficult. i’m not going to lie. i had several days where i just couldn’t get out of bed.
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but, as the days go on, i get stronger. i realize that this illness is simply just one thing i have to overcome.
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yes, i’m not doing as well as i had hoped. i’m still experiencing neurological issues daily. and i’m still stuck waiting to see a vEDS expert. but things will come within time.
my reality since my vEDS diagnosis ••• receiving my diagnosis was difficult. i’m not going to lie. i had several days where i just couldn’t get out of bed. ••• but, as the days go on, i get stronger. i realize that this illness is simply just one thing i have to overcome. ••• yes, i’m not doing as well as i had hoped. i’m still experiencing neurological issues daily. and i’m still stuck waiting to see a vEDS expert. but things will come within time.
Saturday morning I made my love a delicious  breakfast rice with purple sweet potato, red onion, celery,  carrots,  basil,  manchingo cheese, napa cabbage, ginger, garlic, some tasty tomatillo sauce I tolerate ok, and of course cannabis leaves from our last grow. The young leaves are very tender and add a nice peppery flavor since I can't use pepper with this combination of food chemicals. 
There's a lot of cooking involved for most persons health with mast cell envolvement and connective tissue disorders. The controls needed on the food level is tiring and can make you crazy if you concentrate on what you can't have other than the small list of yeses. I have found that if I eat a meal with too much variety I have a mast cell event. Natural food chemicals like salicylates and amines, along with additives including coloring, mold and fungus inhibitors, sorbates, benzoates, sulphites, nitrates and nitrites, propionates, glutamates, synthetic antidioxidants, preservatives, and artificial flavors are all triggers depending on what and how much in the meal and thru the day, week, month. I can't just find a food and stick to it. I can't just ho to any restaurant and find anything due to additives sprayed on veggies a salad is even a no if I have not kept to my diet. I have to keep my meals very basic and rotate the natural food chemicals so I dont have too much on one thing which also causes reactions.
Left overs are a thing of the past if they are not frozen soon after cooking due to the natural histamine release in foods and the decomposition process once foods are exposed.  This meal was a delicious but overly complex dish for daily noshing for me.
Saturday morning I made my love a delicious breakfast rice with purple sweet potato, red onion, celery, carrots, basil, manchingo cheese, napa cabbage, ginger, garlic, some tasty tomatillo sauce I tolerate ok, and of course cannabis leaves from our last grow. The young leaves are very tender and add a nice peppery flavor since I can't use pepper with this combination of food chemicals. There's a lot of cooking involved for most persons health with mast cell envolvement and connective tissue disorders. The controls needed on the food level is tiring and can make you crazy if you concentrate on what you can't have other than the small list of yeses. I have found that if I eat a meal with too much variety I have a mast cell event. Natural food chemicals like salicylates and amines, along with additives including coloring, mold and fungus inhibitors, sorbates, benzoates, sulphites, nitrates and nitrites, propionates, glutamates, synthetic antidioxidants, preservatives, and artificial flavors are all triggers depending on what and how much in the meal and thru the day, week, month. I can't just find a food and stick to it. I can't just ho to any restaurant and find anything due to additives sprayed on veggies a salad is even a no if I have not kept to my diet. I have to keep my meals very basic and rotate the natural food chemicals so I dont have too much on one thing which also causes reactions. Left overs are a thing of the past if they are not frozen soon after cooking due to the natural histamine release in foods and the decomposition process once foods are exposed. This meal was a delicious but overly complex dish for daily noshing for me.
My sponsored review of the Aloe Vera Drink Gel by Aloe Veritas is up on the Zebra Pit today. I am in love with the product and the company. I can't believe the changes I saw in my whole digestive system, energy levels, skin and joints when drinking this tasty juice for just 7 or 8 days. I can't wait to see how I feel after completing the 90 Day Detox Challenge. Between the outstanding performance of their Drink Gel and their AloeMD topical pain reliever, I couldn't help myself. I had to become an AV Lifestyle Coach so I know I can keep this goodness going! I'm getting ahead of myself, though. That's for my next post! 😀 Check out everything I experienced and some of the compelling research about why aloe is for zebras in today's post at zebrapit.com (link in bio). #gastroparesis #IBS #ehlersdanlossyndrome #mcas #aloevera #aloeveritas #aloedrink #Aloeis4Zebras #90daydetox
My sponsored review of the Aloe Vera Drink Gel by Aloe Veritas is up on the Zebra Pit today. I am in love with the product and the company. I can't believe the changes I saw in my whole digestive system, energy levels, skin and joints when drinking this tasty juice for just 7 or 8 days. I can't wait to see how I feel after completing the 90 Day Detox Challenge. Between the outstanding performance of their Drink Gel and their AloeMD topical pain reliever, I couldn't help myself. I had to become an AV Lifestyle Coach so I know I can keep this goodness going! I'm getting ahead of myself, though. That's for my next post! 😀 Check out everything I experienced and some of the compelling research about why aloe is for zebras in today's post at zebrapit.com (link in bio). #gastroparesis  #IBS  #ehlersdanlossyndrome  #mcas  #aloevera  #aloeveritas  #aloedrink  #Aloeis4Zebras  #90daydetox 
Infusion day!!! I am so thankful for having this treatment back. I can’t even believe how much havoc going without it reeked. I’ve been struggling so hard recently and that step back was more of a landslide. I’ve lost what little progress I had made over the last months. Each day I have to strive for mind over matter to get through the day. My only ability to continue is my eternal optimism, my irrational denial of the situation and constant hope that tomorrow will be better, and lastly the incredible love and support from all of you. #chronicillness #chronicpain #pwme #myalgicencephalomyelitis #chronicfatiguesyndrome #dysautonomia #ivfluids #ehlersdanlossyndrome #seizure #gastroparesis #posturalorthostatictachycardiasyndrome #pots #potsiestrong #potsielife #potsiegirl #zebrastrong #spoonie #spoonielife #spooniewarrior #spooniestrong #spooniecommunity
Infusion day!!! I am so thankful for having this treatment back. I can’t even believe how much havoc going without it reeked. I’ve been struggling so hard recently and that step back was more of a landslide. I’ve lost what little progress I had made over the last months. Each day I have to strive for mind over matter to get through the day. My only ability to continue is my eternal optimism, my irrational denial of the situation and constant hope that tomorrow will be better, and lastly the incredible love and support from all of you. #chronicillness  #chronicpain  #pwme  #myalgicencephalomyelitis  #chronicfatiguesyndrome  #dysautonomia  #ivfluids  #ehlersdanlossyndrome  #seizure  #gastroparesis  #posturalorthostatictachycardiasyndrome  #pots  #potsiestrong  #potsielife  #potsiegirl  #zebrastrong  #spoonie  #spoonielife  #spooniewarrior  #spooniestrong  #spooniecommunity 
💓not every day will be a good day, but that doesn’t mean you can’t have a good life💓 today’s crappy for me, for my family, for anyone who listens to me complain. My joints hurt more than usual today. My head is killing me. I have a rheumatology appointment later that I’m not even sure I’ll have the energy to go to. My dogs have so much energy I can’t keep up with them. .
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But I have a good life. I will choose to be happy today and to make healthy choices. I will do everything in my power and use my supports and resources to help get me out of this funk. You can too. If you ever need to reach out, find a local mental health provider or if you are in crisis in the US, call 800-273-8255 or text “hello” to7841-741.
💓not every day will be a good day, but that doesn’t mean you can’t have a good life💓 today’s crappy for me, for my family, for anyone who listens to me complain. My joints hurt more than usual today. My head is killing me. I have a rheumatology appointment later that I’m not even sure I’ll have the energy to go to. My dogs have so much energy I can’t keep up with them. . . But I have a good life. I will choose to be happy today and to make healthy choices. I will do everything in my power and use my supports and resources to help get me out of this funk. You can too. If you ever need to reach out, find a local mental health provider or if you are in crisis in the US, call 800-273-8255 or text “hello” to7841-741.
I feel like my mum may have made a mistake taking me to get Frank some more hay. •
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We went on Friday to get him some more gnawing sticks and the man there said they were getting more rabbits on Saturday. I didn’t want to go out, so I only agreed to going to Pets at Home and I have fallen in love 😍 Both of his ears had fallen to one side and he kept jumping on things only to fall off them backwards, literally just like Frank. I called him Norman. •
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I was watching him run around where they put the rabbits in the day and the manager came over to ask how Frank was and said I could hold Norman and he was so tiny and sweet and just nuzzled my chest for ages. Frank still hasn’t had his mixamitosis injection and they’d have to stay apart for a while so my mum said we couldn’t get him 💔 The manager still said she’d keep him aside for tomorrow just in case we do decide to get him, which I really really want to do, but my dad would probably disagree considering most of his interactions with Frank is him swearing at him and complaining about whatever he’s chewed during the day. •
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If we don’t get him, I hope he goes to a good home and the owners agree to call him Norman 💗✨ •
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#pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #pcos #polycysticovariansyndrome #celiacdisease #celiac #aspergers #autism #dysautonomia #tachycardia #ocd #girlswithautism #obsessivecompulsivedisorder #chronicpain #chronicfatigue #chronicillness #invisibleillness #depression #anxiety #spoonie #zebra #adhd #chronicallyill #chronicillnesswarrior 
#spooniecommunity #spoonielife #spoonieproblems #glutenfree
I feel like my mum may have made a mistake taking me to get Frank some more hay. • • We went on Friday to get him some more gnawing sticks and the man there said they were getting more rabbits on Saturday. I didn’t want to go out, so I only agreed to going to Pets at Home and I have fallen in love 😍 Both of his ears had fallen to one side and he kept jumping on things only to fall off them backwards, literally just like Frank. I called him Norman. • • I was watching him run around where they put the rabbits in the day and the manager came over to ask how Frank was and said I could hold Norman and he was so tiny and sweet and just nuzzled my chest for ages. Frank still hasn’t had his mixamitosis injection and they’d have to stay apart for a while so my mum said we couldn’t get him 💔 The manager still said she’d keep him aside for tomorrow just in case we do decide to get him, which I really really want to do, but my dad would probably disagree considering most of his interactions with Frank is him swearing at him and complaining about whatever he’s chewed during the day. • • If we don’t get him, I hope he goes to a good home and the owners agree to call him Norman 💗✨ • • • • #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #pcos  #polycysticovariansyndrome  #celiacdisease  #celiac  #aspergers  #autism  #dysautonomia  #tachycardia  #ocd  #girlswithautism  #obsessivecompulsivedisorder  #chronicpain  #chronicfatigue  #chronicillness  #invisibleillness  #depression  #anxiety  #spoonie  #zebra  #adhd  #chronicallyill  #chronicillnesswarrior  #spooniecommunity  #spoonielife  #spoonieproblems  #glutenfree 
Senior Homecoming!
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I don't go to school anymore but im thankful for awesome friends who still invite me to homecoming. I may look good in this picture and I probably looked alright all night but that's life with an invisible illness. Some days it is visible. You see the crutches or braces but the pain is still there when I'm smiling. Its still there when I'm dancing. And its still there when I say I'm okay. 
Im not saying this to be depressing. I'm just explaining my reality. That's what this page is all about. I talk about it because its a huge part of my life and I hope I can help other chronic illness fighters feel less alone. 💕

#chroniccommunity#chonicillness#chronicpain#chronicfatigue#christian#song#chronicfatigue#posturalorthostatictachycardiasyndrome#potssyndrome#dysautonomia#edslife#ehlersdanlossyndrome#heds#connectivetissue#strong#fragile#determined#inspiration#invisibleillness#butyoudontlooksick#sickness#illness#medicalzebra#rare#chronicallyill#wheelchair#crutches#mobilityaids#chronicpain#faith#strength#hypermobility
Senior Homecoming! ° ° ° I don't go to school anymore but im thankful for awesome friends who still invite me to homecoming. I may look good in this picture and I probably looked alright all night but that's life with an invisible illness. Some days it is visible. You see the crutches or braces but the pain is still there when I'm smiling. Its still there when I'm dancing. And its still there when I say I'm okay. Im not saying this to be depressing. I'm just explaining my reality. That's what this page is all about. I talk about it because its a huge part of my life and I hope I can help other chronic illness fighters feel less alone. 💕 #chroniccommunity #chonicillness #chronicpain #chronicfatigue #christian #song #chronicfatigue #posturalorthostatictachycardiasyndrome #potssyndrome #dysautonomia #edslife #ehlersdanlossyndrome #heds #connectivetissue #strong #fragile #determined #inspiration #invisibleillness #butyoudontlooksick #sickness #illness #medicalzebra #rare #chronicallyill #wheelchair #crutches #mobilityaids #chronicpain #faith #strength #hypermobility 
Today is day one of the Fall 10x10 Challenge. These are the pieces I’ll be wearing this round. 1. Chambray shirt from Old Navy 2. Black & white stripe long sleeve tee from Loft 3. Cobalt long sleeve tee by Cable & Gauge from TJMaxx 4. Black wrap knit top from Loft 5. Black slim ankle pants from Loft 6. Cropped jeans by Curve Appeal from TJMaxx (I’d prefer a dark wash but these are the only pair that don’t fall off and even they are too big.) 7. Black leggings by Zella (I know why they call these the “live in leggings” because I would if I could!) 8. Gray long cardigan from Loft 9. Gray sweater purchased years ago at TJMaxx- I almost didn’t include this but, let’s be honest, I feel like crap and this sweater is like wearing a cozy blanket. 10. (Not shown) my favorite gray graphic tee. I apologize for the poor quality photos. I had planned to do laundry and take nice photos yesterday but instead nearly passed out in the bathtub and spent the rest of the day in bed then quickly threw this together this morning. I opted not to include shoes or coats in my count though many do. #fall10x10 #fall10x10challenge #10x10challenge #spoonielife #dysautonomia #eds #ehlersdanlossyndrome
Today is day one of the Fall 10x10 Challenge. These are the pieces I’ll be wearing this round. 1. Chambray shirt from Old Navy 2. Black & white stripe long sleeve tee from Loft 3. Cobalt long sleeve tee by Cable & Gauge from TJMaxx 4. Black wrap knit top from Loft 5. Black slim ankle pants from Loft 6. Cropped jeans by Curve Appeal from TJMaxx (I’d prefer a dark wash but these are the only pair that don’t fall off and even they are too big.) 7. Black leggings by Zella (I know why they call these the “live in leggings” because I would if I could!) 8. Gray long cardigan from Loft 9. Gray sweater purchased years ago at TJMaxx- I almost didn’t include this but, let’s be honest, I feel like crap and this sweater is like wearing a cozy blanket. 10. (Not shown) my favorite gray graphic tee. I apologize for the poor quality photos. I had planned to do laundry and take nice photos yesterday but instead nearly passed out in the bathtub and spent the rest of the day in bed then quickly threw this together this morning. I opted not to include shoes or coats in my count though many do. #fall10x10  #fall10x10challenge  #10x10challenge  #spoonielife  #dysautonomia  #eds  #ehlersdanlossyndrome 
Feeling a little sad and anxious today, probably because I have my meeting at Arbetsförmedlingen (Swedish Public Employment Service) tomorrow. 😑 So I made myself some comfort food - stewed macaroni and sausage with a lot of ketchup. It made me a little bit more happy. And I have chocolate for dessert. 😊 #food #mat #vegetarianfood #laktoovovegetariskt #spoonie #ehlersdanlossyndrome #ehlersdanlossyndrom #chronicpain #kronisksmärta
DOG LIFE • Humom has been ill for a few days, and she spent a lot of time asleep in bed. There wasn’t that much service dogging to do for me, but I haven’t been bored! So what does a service dog do when she doesn’t have to work? Well, a lot of chewing on sticks (thank you @teamingwithlife!), cuddling, playing with my stuffies, and sleeping with humom. Also, modeling one of my new bandanas! Fortunately, humom is feeling a bit better now, so it’s time for some adventure. Tonight we’re going to mum @suusandbella’s home, where we’ll be staying for a few days. We’ll also go on a hospital visit, and maybe even do a walkie in the forest. Then on Thursday it’s back home and back to business: psychologist and grocery shopping. So stay tuned, because it’s gonna be a lot of fun over here again! 🎉
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Go follow our pawsome pawtners! 
@blue_the_servicedog_ 🐾
@hulphond_august 🐾
@the.service.doodle 🐾
@louie_the_autism_service_cat 🐾
@piper_the_sdit 🐾
@service.aussie.holly 🐾
@beccaandraven 🐾
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Use code TeamHappyCappies10 for a 10% discount in @modernservicedogs’s store! 🎁 •
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#servicedog #assistancedog #seizurealertdog #hulphond #assistentiehond #bultersmekke #happycappies  #happytheservicedog #becauseimhappy #ifyourehappyandyouknowitwagyourtail #teamhappy #goodgirlhappy #bestservicedogever #mommarazzi #myhumomlovesme #ichoosehappyness #ehlersdanlossyndrome #epilepsy #chronicallyawesome
DOG LIFE • Humom has been ill for a few days, and she spent a lot of time asleep in bed. There wasn’t that much service dogging to do for me, but I haven’t been bored! So what does a service dog do when she doesn’t have to work? Well, a lot of chewing on sticks (thank you @teamingwithlife!), cuddling, playing with my stuffies, and sleeping with humom. Also, modeling one of my new bandanas! Fortunately, humom is feeling a bit better now, so it’s time for some adventure. Tonight we’re going to mum @suusandbella’s home, where we’ll be staying for a few days. We’ll also go on a hospital visit, and maybe even do a walkie in the forest. Then on Thursday it’s back home and back to business: psychologist and grocery shopping. So stay tuned, because it’s gonna be a lot of fun over here again! 🎉 • • • Go follow our pawsome pawtners! @blue_the_servicedog_ 🐾 @hulphond_august 🐾 @the.service.doodle 🐾 @louie_the_autism_service_cat 🐾 @piper_the_sdit 🐾 @service.aussie.holly 🐾 @beccaandraven 🐾 • • • Use code TeamHappyCappies10 for a 10% discount in @modernservicedogs’s store! 🎁 • • • #servicedog  #assistancedog  #seizurealertdog  #hulphond  #assistentiehond  #bultersmekke  #happycappies  #happytheservicedog  #becauseimhappy  #ifyourehappyandyouknowitwagyourtail  #teamhappy  #goodgirlhappy  #bestservicedogever  #mommarazzi  #myhumomlovesme  #ichoosehappyness  #ehlersdanlossyndrome  #epilepsy  #chronicallyawesome 
Don't get me wrong
the rise in awareness
is beating a stigma that no longer scares us
but for sake of discussion
in spirit of fairness
could we give this some room for a new point of view?
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#gay #bi #bisexual #lgbt #aesthetic #aestheticallypleasing #photography #spoonie #chronicallyill #EDS #Ehlersdanlos #invisibleillness #ehlersdanlossyndrome #scleroderma #morphea #pleaseloveme #imserious #imdesperate #emo
We all face our own unique battles each day: 
Remember to always be kind!
We all face our own unique battles each day: Remember to always be kind!
For anyone using walking sticks or crutches long term I highly recommend @smartcrutchuk Smart Crutches. OK it seems expensive at first, but believe me it's worth it when it's for the rest of your life. No blisters, no wobbling & slipping, they are well worth the cash #SmartCrutches #EDS #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlosawareness #chronicpain #JHMS #jointhypermobility #jointhypermobilitysyndrome #zebras #spoonie #invisibleillness
This is the life.
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Post-therapy knitting and chai outside to soak up this autumn sun.
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What are you doing today to build yourself up?
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#ehlersdanlossyndrome #ehlersdanlos #chronicillness #chronicpain #dysautonomia #raredisease #mastcellactivationsyndrome #mastcellactivationdisorder #mastcell #mcas #mcad #posturalorthostatictachycardiasyndrome #pots #potsie #selfcare #chronicbabe #butyoudontlooksick #knitting #knittinglove #wak
#Repost from @themightysite. We wanted to share this video today for anyone who is living with an undiagnosed illness as a reminder that you are not alone.
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What is the hardest part about being undiagnosed? Share your experience in the comments below.
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#invisibleillness #mentalhealth #mentalhealthawareness #chronicillnesswarrior #mentalhealthmatters #mentalhealthday #chronicfatigue #chronicillness #spoonie #spoonielife #mentalhealthwarrior #mentalillness #fibromyalgia #fibro #lupus #PTSD #cancer #disability #ehlersdanlossyndrome #potssyndrome #endometriosis #endowarrior #depression #anxiety #crohns #themightysite
#Repost  from @themightysite. We wanted to share this video today for anyone who is living with an undiagnosed illness as a reminder that you are not alone. ••• What is the hardest part about being undiagnosed? Share your experience in the comments below. ••• #invisibleillness  #mentalhealth  #mentalhealthawareness  #chronicillnesswarrior  #mentalhealthmatters  #mentalhealthday  #chronicfatigue  #chronicillness  #spoonie  #spoonielife  #mentalhealthwarrior  #mentalillness  #fibromyalgia  #fibro  #lupus  #PTSD  #cancer  #disability  #ehlersdanlossyndrome  #potssyndrome  #endometriosis  #endowarrior  #depression  #anxiety  #crohns  #themightysite 
honestly my foot has never looked better 😂 
#newfootwhodis 
but in all seriousness, this handy dandy external fixation device acts as an external cast that holds everything in place while my bones heal. this is my third bunion surgery and with the previous two I had to be nonweightbearing for 6-8 weeks. because of the ex-fix I can start weight bearing after 2 weeks, so I’m pretty stoked about that! ✌🏻
honestly my foot has never looked better 😂 #newfootwhodis  but in all seriousness, this handy dandy external fixation device acts as an external cast that holds everything in place while my bones heal. this is my third bunion surgery and with the previous two I had to be nonweightbearing for 6-8 weeks. because of the ex-fix I can start weight bearing after 2 weeks, so I’m pretty stoked about that! ✌🏻
Didn’t run feeds OR liquids last night- regretting it. Don’t feel good this morning. Been super dehydrated lately. Trying so hard to avoid ER. Sister has MRSA and with my sucky immune system- I want NOTHING to do with her. I know I dont really have any open wounds but still. She looks horrible because she’s got open sores all over her face, back, arms, legs, etc.. ive got a doctor appt everyday last week and this week and by next midweek, I get a break! Off topic- I have all my Christmas shopping done and Christmas cards except for one person really (best friends mom). Hope you all have a good day and rest up! #starvingforacure #chronicallyliving #chronicallyfabulous #nursessavelives #nightmare #chronic #warrior #warriors #medicallycomplex #gastroparesis #ehlersdanlossyndrome #chronicallyill #recovery #mentalhealth #mentalillness #depression #hospital #tubie #immunocompromised #specialists
Didn’t run feeds OR liquids last night- regretting it. Don’t feel good this morning. Been super dehydrated lately. Trying so hard to avoid ER. Sister has MRSA and with my sucky immune system- I want NOTHING to do with her. I know I dont really have any open wounds but still. She looks horrible because she’s got open sores all over her face, back, arms, legs, etc.. ive got a doctor appt everyday last week and this week and by next midweek, I get a break! Off topic- I have all my Christmas shopping done and Christmas cards except for one person really (best friends mom). Hope you all have a good day and rest up! #starvingforacure  #chronicallyliving  #chronicallyfabulous  #nursessavelives  #nightmare  #chronic  #warrior  #warriors  #medicallycomplex  #gastroparesis  #ehlersdanlossyndrome  #chronicallyill  #recovery  #mentalhealth  #mentalillness  #depression  #hospital  #tubie  #immunocompromised  #specialists 
So I have two dislocated shoulders but I’ve just recently gone to the hospital and had one of them put back in so I don’t want to go back and bother them again 😫What do I do? #spoonielife #spoonieproblems #spooniewarrior #invisibleillness #eds #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #chronicpain #chronicillness #chronicallyill #ill #potssyndrome #fibromyalgia #chronicpainwarrior #spoonie #hypermobility #heds
Waking up with our Lord and Savior!🌞 technology has its downside but it also has its rejoicing upsides. When I am bed bound due to #ehlersdanlossyndrome (I packed way too much yesterday😂). Down to 6 days before the move to #tucson for my medical care. We created a go fund me account to help with the cost of travel. Link is in my profile. Thank you all for your kind support and encouragement!
Waking up with our Lord and Savior!🌞 technology has its downside but it also has its rejoicing upsides. When I am bed bound due to #ehlersdanlossyndrome  (I packed way too much yesterday😂). Down to 6 days before the move to #tucson  for my medical care. We created a go fund me account to help with the cost of travel. Link is in my profile. Thank you all for your kind support and encouragement!
Forgot to post, this was awhile back- but was the first time I met my brother Sprinkles the kitty cat. I love him but hes not so sure yet ♡
#servicedog #servicedogs #servicedogsofig #sdit #disability #ehlersdanlossyndrome #eds #hypermobile #zebrawarrior #pots #multiplesclerosis #migranes #fatigue #musclespasms #Dysesthesia #dysautonomia #insomnia #nausea #chronicpain #spoonie #chronicillness #msawareness #anxiety #mswarrior #mssucks #advocate #invisibleillness #notalldisabilitiesarevisible
Forgot to post, this was awhile back- but was the first time I met my brother Sprinkles the kitty cat. I love him but hes not so sure yet ♡ #servicedog  #servicedogs  #servicedogsofig  #sdit  #disability  #ehlersdanlossyndrome  #eds  #hypermobile  #zebrawarrior  #pots  #multiplesclerosis  #migranes  #fatigue  #musclespasms  #Dysesthesia  #dysautonomia  #insomnia  #nausea  #chronicpain  #spoonie  #chronicillness  #msawareness  #anxiety  #mswarrior  #mssucks  #advocate  #invisibleillness  #notalldisabilitiesarevisible 
I am so incredibly fortunate to have such a supportive partner. He reads to me, as my brain is too exhausted to read fiction. We started our first dates like this, and still continue :) #brainfog #eds #ehlersdanlos #ehlersdanlossyndrome #fatigue #thechronichealthadvocate
Happy Monday hope everyone has a great week ♡ here's a pic of me during my break time today, we've been very busy these days but mama still gets plenty of time for me to relax and exercise in ;) #servicedog #servicedogs #servicedogsofig #sdit #disability #ehlersdanlossyndrome #eds #hypermobile #zebrawarrior #pots #multiplesclerosis #migranes #fatigue #musclespasms #Dysesthesia #dysautonomia #insomnia #nausea #chronicpain #spoonie #chronicillness #msawareness #anxiety #mswarrior #mssucks #advocate #invisibleillness #notalldisabilitiesarevisible
Happy Monday hope everyone has a great week ♡ here's a pic of me during my break time today, we've been very busy these days but mama still gets plenty of time for me to relax and exercise in ;) #servicedog  #servicedogs  #servicedogsofig  #sdit  #disability  #ehlersdanlossyndrome  #eds  #hypermobile  #zebrawarrior  #pots  #multiplesclerosis  #migranes  #fatigue  #musclespasms  #Dysesthesia  #dysautonomia  #insomnia  #nausea  #chronicpain  #spoonie  #chronicillness  #msawareness  #anxiety  #mswarrior  #mssucks  #advocate  #invisibleillness  #notalldisabilitiesarevisible 
New blog post just out!
It’s been a while so here’s an update on everything:
https://www.cripplebaby.com/2018/10/health-and-life-updates-august-2018.html
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#bloggies18 #blogawardsireland #blogawardsireland18 #cripplebabyblog #ehlersdanlossyndrome #EDS4IRE #irishblog #irishblogger #lifestyleblogger #dundalkforchange  #irishedsandhsd #disabilityblogger #healthblogger
It’s been one of those weekends. #gastroparesis #spoonielife #ehlersdanlossyndrome
It’s been 8 years since I was diagnosed with Ehlers Danlos Syndrome - a connective tissue disorder that can cause dislocations, unusual bleeding and issues with collagen and this photo shows what I go through every week.. being hooked up to pain relief drips and being sedated or put under general anaesthetic to have my joints put back into place as I dislocate my shoulder, knees and hips everyday. Although I may look ‘normal’ that doesn’t stop the fact that if I have a powerful sneeze my shoulder will sublux or dislocate or if I eat and position my fork wrong my shoulder will dislocate again. It may be an invisible illness but it very much debilitates me most of the time. #eds #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #chronicpain #chronicillness #chronicallyill #ill #potssyndrome #fibromyalgia #chronicpainwarrior #spoonie #hypermobility
It’s been 8 years since I was diagnosed with Ehlers Danlos Syndrome - a connective tissue disorder that can cause dislocations, unusual bleeding and issues with collagen and this photo shows what I go through every week.. being hooked up to pain relief drips and being sedated or put under general anaesthetic to have my joints put back into place as I dislocate my shoulder, knees and hips everyday. Although I may look ‘normal’ that doesn’t stop the fact that if I have a powerful sneeze my shoulder will sublux or dislocate or if I eat and position my fork wrong my shoulder will dislocate again. It may be an invisible illness but it very much debilitates me most of the time. #eds  #ehlersdanlossyndrome  #ehlersdanlos  #ehlersdanlosawareness  #chronicpain  #chronicillness  #chronicallyill  #ill  #potssyndrome  #fibromyalgia  #chronicpainwarrior  #spoonie  #hypermobility 
Autonomic Dysreflexia (AD) is a medical condition that can lead to serious stroke, seizure, organ damage, permanent brain injury, or even death if not treated immediately. 🙇🏽‍♀️ This medical condition scares me to no end when it happens. I never want it to happen in public or when I’m alone. I do live in fear after an episode. It’s not as common as #posturalorthostatictachycardiasyndrome and #innapropriatesinustachycardia (which I have also) but it’s a real doozy to live with. This was definitely a hard diagnosis to accept, but it answered a lot of the why’s I had from getting attacks when I was completely oblivious to this form of #dysautonomia For me it feels like the sky is falling, and the world is ending when it happens. #paralysis happens very quickly! I’ve learned that I always need to keep different forms of #medicalcannabis around for immediate help. Like a sublingual tincture. I’m pretty helpless when it happens, and need assistance. This particular illness is difficult for me to be transparent about, due to the severity of its symptoms. It happens to people with #spinalcordinjury and I have spinal cord injury due to a faulty collagen disorder named #ehlersdanlossyndrome 💆🏾‍♀️ #dysautonomiaawarenessmonth #makenoiseforturquoise #autonomicdysreflexia #hyperreflexia #autonomicdysfunction #strongertogether #awareness #dysautonomiadiva read up on it if your interested in knowing more  https://www.healthline.com/health/autonomic-hyperreflexia
Autonomic Dysreflexia (AD) is a medical condition that can lead to serious stroke, seizure, organ damage, permanent brain injury, or even death if not treated immediately. 🙇🏽‍♀️ This medical condition scares me to no end when it happens. I never want it to happen in public or when I’m alone. I do live in fear after an episode. It’s not as common as #posturalorthostatictachycardiasyndrome  and #innapropriatesinustachycardia  (which I have also) but it’s a real doozy to live with. This was definitely a hard diagnosis to accept, but it answered a lot of the why’s I had from getting attacks when I was completely oblivious to this form of #dysautonomia  For me it feels like the sky is falling, and the world is ending when it happens. #paralysis  happens very quickly! I’ve learned that I always need to keep different forms of #medicalcannabis  around for immediate help. Like a sublingual tincture. I’m pretty helpless when it happens, and need assistance. This particular illness is difficult for me to be transparent about, due to the severity of its symptoms. It happens to people with #spinalcordinjury  and I have spinal cord injury due to a faulty collagen disorder named #ehlersdanlossyndrome  💆🏾‍♀️ #dysautonomiaawarenessmonth  #makenoiseforturquoise  #autonomicdysreflexia  #hyperreflexia  #autonomicdysfunction  #strongertogether  #awareness  #dysautonomiadiva  read up on it if your interested in knowing more https://www.healthline.com/health/autonomic-hyperreflexia
Take the jump so you can eat cakes from your neighbours when she’s made too many 🤗 It is a horribly hard leap and something you have to consciously argue against every single day but I do promise it gets easier and the voice gets a bit quieter. And these are really tasty 😋 I don’t even like coconut but they’re yum! Coconut and cranberry 🥥 🌴 🍰 
#nourishtoflourish #anorexiarecovery #edrecovery #potssyndrome #pots #posturalorthostatictachycardiasyndrome #eds #ehlersdanlossyndrome #edsawareness #ehlersdanlosawareness #dysautonomiaawareness #mecfs #chronicillness #cfs #chronicfatiguesyndrome #myalgicencephalomyelitis #spooniewarrior #spoonielife #spoonieproblems #spoonies #spooniesupport #chronicillnessawareness #chronicillnesslife
Take the jump so you can eat cakes from your neighbours when she’s made too many 🤗 It is a horribly hard leap and something you have to consciously argue against every single day but I do promise it gets easier and the voice gets a bit quieter. And these are really tasty 😋 I don’t even like coconut but they’re yum! Coconut and cranberry 🥥 🌴 🍰 #nourishtoflourish  #anorexiarecovery  #edrecovery  #potssyndrome  #pots  #posturalorthostatictachycardiasyndrome  #eds  #ehlersdanlossyndrome  #edsawareness  #ehlersdanlosawareness  #dysautonomiaawareness  #mecfs  #chronicillness  #cfs  #chronicfatiguesyndrome  #myalgicencephalomyelitis  #spooniewarrior  #spoonielife  #spoonieproblems  #spoonies  #spooniesupport  #chronicillnessawareness  #chronicillnesslife 
Dropped my disability paperwork off at the doctor to put it on file. She told me for my gastro issues to try the #FODMAP #diet How am I supposed to do that when I can’t even make myself a single simple meal on the daily? Ughhh. Fml. ...
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#fibromyalgia #fibrowarrior  #spoonie #chronicillness #chronicpain #chronicwarrior #chronicillnesswarrior #chronicpainwarrior #spoonlife #spoonielife #spooniecommunity #spoonies #spooniewarrior #ehlersdanlossyndrome #eds #mentalhealth #mentalillness #ptsd #anxiety #depression #insomnia #medication #chronicfatigue #chronicillness #disabled
Dropped my disability paperwork off at the doctor to put it on file. She told me for my gastro issues to try the #FODMAP  #diet  How am I supposed to do that when I can’t even make myself a single simple meal on the daily? Ughhh. Fml. ... ... #fibromyalgia  #fibrowarrior  #spoonie  #chronicillness  #chronicpain  #chronicwarrior  #chronicillnesswarrior  #chronicpainwarrior  #spoonlife  #spoonielife  #spooniecommunity  #spoonies  #spooniewarrior  #ehlersdanlossyndrome  #eds  #mentalhealth  #mentalillness  #ptsd  #anxiety  #depression  #insomnia  #medication  #chronicfatigue  #chronicillness  #disabled