My heart feels a bit torn today, I was suppose to be running the marathon. This year has bought lots of health developments, the positive is that after 34 years I'm finally starting to know what's wrong with me, the negative is that I now know that I have to be cautious with myself to prevent disability further down the line. I'm not very good at being told I can't do things and maybe one year with the right supervision (and lots of kinesio tape 😂) I will make it to the Marathon but for now I have to be content with smaller distances. I hope all those racing today have had a safe an enjoyable time. 🏃♀️
♻️💛 Recyclage de jeans & short : ça sent l’été ! ☀️😎🥤Recycler un vieux vêtement c’est retrouver la joie de le porter ! Et quand tu dois porter des #VêtementsCompressifs c’est doublement sympa de créer des looks adaptés (et à partir de presque rien) ! #VoilàLétéOuPresque#EhlersDanlosSyndrome
Les vêtements compressifs servent à améliorer la #dysproprioception présente dans le syndrome d’#EhlersDanlos . Ainsi, avec une meilleure perception de notre corps dans l’espace (proprioception), on limite les blessures à répétition. Ils soulagent également certaines douleurs.
Thinking back to this moment 7 years ago when I walked 26.2miles in 8 hours and 8mins despite all the odds. I fractured my foot on the 13th mile and walked on it for half the race. Prior to my training I had only ever walked about 2miles because of my Ehlers-Danlos syndrome. This race of my life taught me lessons I will never forget:
1. I came nearly last that day out of thousands of people, yet I felt like the biggest winner. Winning doesn’t matter, taking part does.
2. It is possible to walk on the strength of your mind and that can carry you anywhere you want to go, but you need to listen to your body and respect the condition you have
3. My fuel was the love and support of all those around me and without it I don’t think I would have made the preparation, let alone the race.
4. We are all capable of so much more than we think.
5. I wouldn’t recommend a marathon for anyone with EDS, but I would recommend creating your own finish lines every day and showing yourself how even the small things can make you feel like you achieved something wonderful.
5. And my final thought is summed up by the words of another:
“Everything you ever wanted to know about yourself you can learn in 26.2miles” - Lori Culnane
I hope more dreams were made today and that everyone who crosses the line feels like the hero they are 🏅
You can watch the documentary ‘Issues with my Tissues’ that followed my journey and raised awareness of EDS for free on my you tube channel. Link in the bio 🙌🏻
"You're so beautiful he says. You're smart, you're amazing. You're a good woman"
Isn't it sad that the women who hear these things on the regular are often the loneliest.
Constantly told how amazing they are, yet treated as if they're not good enough.
To those that make you feel this way,
You think you've seen her naked because she took her clothes off❓
Tell me about her dreams. Tell me what breaks her heart.
What is she passionate about, what makes her cry❓
Better yet, tell me one story about her that your not in.
The chances are you still know as much about her as a book 📘 you once found but never got around to opening.
Don't Abuse A Kind Heart ❤️ You May Never Be Offered One Again.
To those that question, how can I be all that you said I was, if I was so easily discarded❓
Eat alone, take yourself on dates, sleep alone.
In the midst of this you will learn about yourself.
You will grow, you will figure out what inspires you, Create your own dreams, your own beliefs & your own stunning 💎 clarity.
When you do meet the person who makes your cells dance,
You will be sure of it because you are sure of yourself.
You Can't Run From The Shadow, But You Can Invite It To Dance.
Pic 📷 : @kitty_666_
For Lady P
Owned By Seducti🖤eness
Controlled ❤️ In Control
Snuggle Down Sundays ~ Warm Tones
1. In our collection we have a pocket vest, 2 detachable saddle bags, a detachable pull strap, two flat collars, a set of booties, a prong collar, a counter balance harness, an 8 ft 8 way lead, and a leather traditional lead.
2. I haven't had any yet!
3. "I didn't even notice there was a dog here!" is always fun to hear.
4. Owner trained!
5. I have known of service dogs since I was a child, however didn't become truly educated until they came up in conversation during university and I started doing research.
6. I would really love to go to Disneyland with a group of service dogs and handlers one day!
7. Probably NJ from Paws and Love, she seems like an awesome person. I also really enjoy smoky paws and service dog paws and would like to meet them.
8. Right now our best places to train are smelly places where there are other dogs as those are our main distractions. So, pet stores, parks, feed stores.
9. Go slow, do a ton of research and find a good, experienced trainer.
10. My favorites that we have are "No touch, no talk, no eye contact" and "not all disabilities are visible"
12. Yes! I want to improve Remi's leave it in public, improve on ignoring dog distractions, and keep learning task skills such as advanced retrieval skills, mobility assist skills, and alarm paired alerts.
13. Not sure what full title means, but his name is Remington and he is a medical alert and response and mobility assist dog.
14. Booties! I live in Arizona.. Making a dog walk around barefoot on concrete or assphault when it's 120 degrees would be cruel.
15. I chose to get an sd because I had been through a lot of different medications, years of therapy, and two psychiatric hospital stays and my health still caused me to drop out of university and become basically home bound. My physical health started to decline significantly as well so it became an absolute necessity to have a dog to help me through every day as I don't have a human who can do that for me. I thought about getting an sd for 3 years before persuing so it was not a decision made lightly.
We were thrilled to hear EDS UK’s appeal broadcast on BBC Radio 4 this morning at 7.55am; all with the aim to raise money to expand our helpline hours.
The helpline is open three days a week and receives more calls than can be taken during this time. People often have to wait several days to have their calls returned and the average length of calls has increased over the past year. When our helpline advisor is away, the helpline has to close. We want to open the helpline more frequently to reduce the time people have to wait for advice and support.
Our lovely supporter Toni Madigan tells her EDS story and explains how the helpline made a difference. Click the link in the bio to listen!
Arachnodactyly (long fingers and some hypermobility) 🖐
This is part of the marfanoid habitus part of the 2017 hEDS criteria along with the arm to heigh ratio, which I do not make (H:179cm, A:185cm). On the top left is the steinberg sign and on the bottom left is the walker sign. 😊
Anyone else have arachnodactyly? @ehlers.danlos @ehlersdanlosuk
Day 2 and heading down to the shala for another yoga class with another great teacher. You’d think attending yoga classes attended themselves by yoga teachers would be a little intimidating for a recovered chronic warrior like myself, but actually it’s incredibly empowering.
Whilst I have considerable natural flexibility, my strength is yet to build, so poses I could once do with ease are now a new challenge for me. But in bringing back the poses to my reality of now I ‘feel’ the flow of energies within me more tenderly, I can draw back to technique and momentum and find my peace in where I am now and feel the build back or strength within. .
But best of all of course is that I’m surrounded by teachers in every direction who are guiding and helping me work with my reality in these moments, were im at and how to find that, instead of seeking and wishing I was somewhere else (stronger!). As the teacher of this class valiantly says ‘what’s bad for the ego is good for the practice’!! .
Det går undan. Nu står de inte på förens bebis är här. Fortfarande helt obegripligt. 😂 Men vi längtar som sjutton. Jag längtar efter förlossningen. Det ska bli så häftigt att få uppleva det.
Min kropp är underbar som fixar graviditeten utan att förändras allt för mycket. +5-7kg är vad jag gått upp hittills. Vet att det är några veckor kvar men än så länge känns det riktigt bra. Precis lagom för att kroppen fortfarande ska funka som innan. Har varit så orolig för att min kropp inte ska orka pga min EDS som påverkar mig extremt mycket i vardagen annars. Men än så går de bra.
We often tend to judge ourselves if we didn't get good through our days🌼
We ask ourselves what we did wrong..? Where was our mistake...? Haven't we been disciplined enough with our diet...? Did we move too less...? Did we move too much...?. .....?....?....?..... I still can't help myself to ask all those questions in moments when pain is getting stronger the more I try to make things better💧
But I learn more and more how important it is, especially in those times, to wrap ourselves in kindness🌼🌼🌼 We should never feel guilty for something we have no influence on🌼
We shouldn't feel guilty for mistakes🌼
It is different if you walk on on solid subsoil🌎 or if you walk on fragile ice❄
We give our best not to break in and it is more easy to cause a crack in ice than a hole in the ground 💪
Be kind to yourself 🌼You did nothing wrong 🌼It is your body to talk to you trying to let you know he is not fine 🌼That he needs a rest and attention🌼
Whatever you do🌼it is what you think is the best for you in this moment🌼Never put it in doubt 🌼 You just followed your inner voice 🌼
We can trust this inner voice 💪🌼 Because the trust in this voice is what brought us here together 🌼
If you wouldn't have had the trust in yourself...you would still believe the words of numberless doctors that it is "in your head" not in your body 🌼
Never stop to believe and trust in yourself and be kind to your soul 🌼
That will ease your mind and ground your body 🌼
Embrace your soul kindly 💛🌼 You deserve it🌼💛 Katharina
ICE HOT... Before I’d ever experienced intractable (aka: uncontrollable) neuropathic pain, I doubt anyone could have prepared me for what it feels like.
How could they?
It is so far outside of any other painful sensation I had ever previously experienced... and I’ve endured many different forms of severe pain throughout my relatively short life. Everything from various surgeries to anaphylactic shock, multiple broken & fractured bones, soft tissue injuries and repeatedly dislocated joints.
But NOTHING can prepare you for unrelenting, searing nerve pain.
On the Mcgill Pain Index neuropathy is ranked as being the most severe pain a human can experience. More painful than childbirth, cancer & amputation.
I tell people that it feels like I’m being stabbed & struck by lightening simultaneously... on repeat.
Now, extrapolate that out to almost 4 (very long) years of perpetual pain & that’s where I found myself before deciding to move to California for pain relief via CBD/cannabis oil (the only medicine I’ve found that even touches the sides of this pain).
Even with a depiction that vivid, if you haven’t experienced it, you couldn’t ever imagine. I once heard it described as feeling like your body is on fire & someone is trying to put it out with an icepick. I concur.
Nerve pain can also present as freezing cold numbness & “phantom water droplets” on the surface of your skin. Countless times I’ve actually thought it was beginning to rain, only to look up at the sun filled sky, confused AF. In reality I was actually feeling the flickers of peripheral neuropathy. This form of chronic pain really is a moving beast that’s difficult to pin down.
Since being back in Australia & unable to access life changing cannabis oil, I’ve experienced a landslide back into the throws of stabbing, shocking, buzzing, burning, prickling & tingling sensations in my face, head, neck, left shoulder... down the length of my left arm - all the way down to my fingertips.
If you were to look at me you would never know, sometimes involuntary tears will tumble down my cheeks - the only real indication can be seen by paying attention to the way my left arm rests limply...
CONTINUED BELOW 👇
Last night was probably the best night of my entire life and today we got carbs (lots of them)
If there is anything that I actually want to eat and willingly eat lots of, it is carbs. I like candy 🍭 and bread 🥖 the most and it was great. I like to walk into the bread store and Williams Sonoma and say “ohh the ode de carbs”. We were planning to shop on our way home but our shopping trip was cut short by my pain. I had such a great time last night, but it feels like I was hit by a truck (and totally worth it). In the next few days we will have access to the pictures that the photographers took and I will share them then.
A few months ago I found an older model of this jar opener at a thrift store; I think it was $10. Today I discovered it originally sold for over $100!!! 😱 This device has been life-changing for me, since my disability makes opening jars painful and often impossible. #disabilitypride#tools#freedom#ehlersdanlossyndrome
“I’ll have a new body, thank you!” Did get a few hours of sleep, then the pain woke me up 4.15 am.
Painkillers down the hatch.
Sick and tired of being sick and tired. Enough, already. .
💥brutally honest post 💥
(possible tw: depression)
I’ve come to realize that I’ve been in a bit of a depressive state the last several weeks, which I’ve hidden behind overly positive posts. This week, I have stepped back from posting because I lacked the motivation to fake the happiness and positivity that I felt I needed to share here. But this is my account, and this is my journey. It’s not all rainbows and sunshine, sometimes it fucking sucks. So here’s my brutally honest update
For the past two weeks, most of my time has been spent unmotivated, irritable, binging on junk food and laying around in bed. I’ve felt hopeless and useless and inadequate. I have had two doctors terminate me as their patient because they felt there was no reason to continue seeing me since there was nothing for them to do for me. Both doctors only saw me twice, and both determined to stop seeing me since I was no longer an “easy” case. Another doctor refused me assistive devices in order to ensure I did not have independence. They felt I needed to be kept inside, under the watchful eye of a family member because I was “too sick” to be alone
I have began to lose my independence. I have began to lose my autonomy. I am losing who I am at my core and it has sent me into a downward spiral. I know this is not the end of my story, just another speed bump, or two, but it makes it incredibly hard to be positive. So for now, I’ll curl up in bed and give my body the rest it needs to continue this fight. I’ll curl up and allow myself to feel all of the shitty emotions I am feeling because they are real, and valid, and justified. •
Some days, even when you don’t feel 100%, you have to push yourself to get out of the house and do something fun (even if it does mean paying for it later). Push yourself to live life, not just survive💙 #choosejoy#livehappy#lifewithchronicillness
Where everyone sees my success and my accomplishments, but no one sees the constant dislocations and subluxations of my joints.
No one sees the dizziness and non existent flashing lights I see that makes me feel like fainting.
No one sees how much anxiety I have harbored inside from being stared at, or when I get harassed for being an Asian female in the automotive field. (yep, I’ve endured directed comments on both parts of me.) No one sees how much self-hate I have for seeing my health get so bad and wondering if it’s my fault for the way I am.
Success is not a one way street. It’s a lot of getting lost and trying to find the way again, like a maze. You can see the beginning and end of the maze. But behind the walls it’s one hell of a mess.
I did it. This was not easy. It was never easy for anyone who turns out successful starting with nothing to land back on. (Like other trade skills.) I couldn’t have done this alone. To those that do see my struggling and helped me my whole way, thank you.
Many will understand this. Sometimes even with those who know these pills make a difference. When life events happen that leave you lost and you emotions down in the dumps. You stop caring to take the things that actually make your day to day better. For some it’s a choice to say screw you in the worst way possible. For others like me, you get to a point where you either just could care less or that logic part in your brain is gone. It’s like a very important diet, when shit gets to be to much your brain shuts down and important things slip through the cracks. Meds, hydration, and eating properly/eating more then one meal a day are the few things that skip through the cracks for me. #spoonie#spoonielife#spooniewarrior#chronicillness#chronicpain#chronicfatigue#staypositive#blessed#spreadawareness#asthma#fibromyalgia#invisibleillness#ehlersdanlossyndrome
Smickrande bild .. men om jag ska bli bekväm med det , då måste jag visa .. Kanske lär sig folk nåt också ... Det sprack idag ,
Kommit var , massa blod och nu bara en klar vätska ... Betyder d att d e på väg åt rätt håll ? Aldrig haft så d spricker i ansiktet , aldrig haft sånt skov som nu ... ANNARS e d nu på natten lite mindre rött i ansiktet , men d ” bubblar” lika mkt i huden än och är ömt ... Tyckte ju igår morse f såg bättre ut , men sen blev d värre under Dagen ... Mår bättre nattetid när ingen sol alls syns o det e svalare ? Ska se om jag kan få nån sömn nu ... Vi ligger minus på det kontot ... Och ska jag nu på måndag orka ” ta tag i” det där samtalet jag har sån ångest över så måste jag va på topp 💪🏻👍🏻 #rosas#bölpest#pinsammaansikten#vårapinsammakroppar#pain#eds#ehlersdanlossyndrome#zebrafighter#spoonies#chronicpain#chronicpainwarrior