#edsawareness #edschallenge #spoonie So this picture I painted myself (it was not easy) I painted myself to try to show the pain I live in every single day. No meds help me, no alternative treatment helps me. I am not seeking or asking for the next big cure. I am sharing that I am very strong to live with what I live with everyday. I have lost alot, motorcycle rides, nature walks, walks on beaches. Just to name a few. I'm stronger than that though because everyday I wake up is a blessing, everyday I did not let my pain win I am a stronger spoonie. EDS does not get nearly enough help in the medical community. Nor does my other diseases to tell the truth. I am trying to do my part to share. And this is my little story. https://www.instagram.com/p/B_OYZBipkDd/?igshid=52qq5p5rec8x

Currently at the gym cooling down so I thought better update day 24!!!!! Oh my goodness what a month! Literally a crazy busy month but I actually managed to keep one of my challenges up. Yay! 🦓♥️ So here goes 7 days left peeps. Here is DAY 24 OF #EDSChallenge #MayForEDS #EDSAwarenessMonth2018 #FragileButUnbreakable #Zebra 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 If there was ONE symptom you could take away? Well most people would guess I'd say pain. NOPE. Yes it's true it's like the really annoying resident in my body but actually.....no. DISLOCATIONS, AND SUBLUXATIONS!! Firstly they really Hurt! The sound the feeling of it also is one of those things that makes me shudder, like nails on a chalkboard but worse. I'd happily scratch my nails on a chalkboard than dislocate/sublux ever again. Most of the time I only sublux and it's usually fairly easy for me to bounce back, yeah I may have to rest for a day, or take it easy but a Dislocation, messes me up for longer. My most recent serious at 19 where I was unable to walk for six months. And then I had one this month 12, one last summer. For me there not as frequent, but the sublux hurts enough for me to quickly put it right before it gets worse. I was lucky two weeks ago when the boys at @anytimefitnesscanveyisland helped me up, cooled it down, and fuck knows how ten days later I was back. And now I'm almost back to normal. It still hurts a lot, i still can't walk for very long, it hates the cold and the warm, and yesterday it caused me so much grief. But I am also older so my ligaments are even more lax so the above is more likely to occur more. So if anyone can magically get rid of this symptom I'd be grateful 😂 (at Anytime Fitness Canvey Island)

I'm guessing by now you've probably got the idea but if you haven't.... Here's day 22 of the #EDSChallenge #EDSAwarenessMonth2018 #MayForEDS #FragileButUnbreakable 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 What has EDS given you? Well for the negative side of things see picture two, but it's not all. They're just some of the cons to this. I've been through a lot of mental and emotional pain during the journey to diagnosis and even now two years after, but accepting this has become easier. But I don't want to dwell on the negative of EDS. 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 So the positive it is then - New Friends both online and offline friends that I wish lived close, but one day I hope to meet some. These friends and you know who you are, have made this very isolating and often boring condition (meaning I don't get out much) less so. I feel like I can talk about anything with them. I've always been very empathic, and compassionate but it's made me even more so, perhaps things I struggled to understand in others has become easier for me, I'm not sure I would have become Vegan, or even a feminist, yep seriously. I may not have met Kurt, which I can't imagine now. And Basil, my beautiful furry baby boy, I got him because I was fighting for answers and I was so lonely and he brought so much to me, I've never felt so bonded to another being of a different species before. He's one of my reasons why. He's my whole world. Would I have begun to work more with spirit if I didn't come home to my mums because I was too sick? (And my ex GF was a piece of shit), there's so many things in my life I'm eternally grateful for, that I cling on to, so that when I am having a crappy day I try my hardest to remind myself, or someone I love usually reminds me. I'd have never gone back to Comic Con, The first time I tried to end my life two days later, it was a very horrible event, but I eventually gained the courage to go back. I would have never found my purpose in trying to help others, not because I have to, but because I want to. I may not have picked up Japanese, a new language to my list of languages, I absolutely love it. It's given me meaning.🦓♥️

Day 21 of the #EDSChallenge #EDSAwarenessMonth2018 #MayForEDS #FragileButUnbreakable 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 What has EDS taken away from you? Well Independence for sure, relying on people is not something I like to do. I often would take pride in how fiercely independent I was. I even had my own place once, by myself, and wouldn't take help from no one. Now I have to swallow that pride and ask those I love to help sometimes. It's also taken away my energy, slowly but surely. But I swear to god it won't take away my enthusiasm/determination, and my passion for life.

Day 18 of #EDSChallenge #EDSAwarenessMonth2018 #FragileButUnbreakable #ehlersdanlossyndromeawareness #MayForEDS 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 Do you consider yourself disabled? 🤔 YES. My name is Penny and I am Disabled. According to the Equality act.............(UK) "You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities." I'll provide a link below for further reading. Accepting that I am disabled for as difficult, but I see absolutely no shame in it. I hope my mother doesn't mind me sharing this, but she had a very difficult time with the word disabled, she still tells me off when I call myself "a cripple" occasionally. It's not that she denied that I was disabled but she kind of took offence to it. She felt ashamed of the words used to describe my state of wellbeing and abilities. I guess every parent must dread disablement coming to their children. I was fairly okay, no one picked up on my EDS til I was 29 years old, but I've been "disabled" way longer. Being disabled doesn't define who I am, and in some way it doesn't even define what I can or can't do, well sometimes I can yes of course! However it is more for me an explanation of myself, why I may need a parking space with extra room, or to use that bathroom, or a simple word to get curious/nosey people to go away "what have you done?" Pointing at my crutch/stick/wheelchair/splints - "I am disabled." It is also a definition of my state, it is for me, permanent. Where as someone may see me and think "she's had an injury" my reply is avoiding explaining my life story to a stranger because quite frankly it's none of their business! But also explaining I am NOT injured I am Disabled. 9/10 times they get the hint and leave you alone, and then you get those people who don't. Generally I refuse to answer that, unless they're is medical reason (I.e a doctor at hospital which I am attending) to know, I won't explain myself. And you'd be surprised how many people believe they're entitled to an explanation of you, and I've even experienced cyber bullying and abuse. Stay safe.

🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 Day 16 of #EDSChallenge #EDSAwarenessMonth2018 #MayForEDS #FragileButUnbreakable 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 *******"""Support System********** This is a hard one to cram into 10 pictures or one post. So the second picture is representing my friends from all over the world who I've met online or offline. You're all a huge value to me. I love you all. My system is made up of friends online, friends offline. My best friends Chris, and Sarah, or my brother and sister more like. I've known nearly a decade. Chris and I even dated briefly but became better friends. Since moving back I've missed those two like crazy. Yet despite everything, the breakups, my medical conditions they've not abandoned me like many had. My mum is also on this list I mean why wouldn't she be? She's a legend. She does what she can to keep me alive and sane 😂. Of course there's my family not all of us are here anymore, Grandad passed on but this photo has a massive significance to me as the last photo of our little family together. Even if my hair was bloody terrible 😂, I think I was 22/23 here? My support system would never be complete without Basil, my little fur baby, he's a proper mummas boy, always next to me, chilling or creating mischief. And there's Kurt, who shares a mutual love for gaming, geeky stuff, not liking the general public, animals, and he loves pizza so much. I still struggle to accept that he feels the way he does, because of everything that goes on with me all the time, but he does. Cuddles on standby when I feel like utter shite, which quite frankly is nearly all the time. Who doesnt like cuddles? Although sometimes they hurt. Everyone of you have a part in my support system, it's amazing how people over thousands of miles connect over something like EDS, or Chronic Illness, or Veganism, or a love for comics, yet we do, and it makes what can feel lonely sometimes feel that little less lonely. So Thanks all of you. ♥️ 🦓♥️🦓♥️🦓♥️🦓♥️🦓♥️🦓♥️🦓♥️ #friendships #Family #Couples #relationships #ZebraFriends #SpoonieLife #supported #ThankYou #grateful #connections #Fibromyalgia #Chronicillness #InvisbleIllnessawarenessmonth

I thought a new post was easier 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 Day 15 #EDSChallenge #EDSAwarenessMonth2018 #MayForEDS #FragileButUnbreakable ♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️♥️ Good doctors. 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 They're so rare that some of us don't know what that means. I've seen a few. There was Dr Coward I saw, a neurologist at Southend, she asked me that dreaded question "How can I help?" And I completely broke down, I cried and cried and cried my story out to her. I was at the breaking point of being pushed around and not believed. It was almost as though she was my last hope. She said she couldn't help but she knew who could. She referred me to a Rheumatologist and I was seen by a kind man called Dr Lazarus who assessed me, asked me questions, diagnosed me with Fibromyalgia, but also referred me onto Pain team, he also mentioned Sjorgens and Hypermobility, and also even mentioned a potential for Raynaud's. As I show a lot of these. He even tested my thumbs which granted he got them to bend but I screamed in pain and he then spent a few minutes apologising to me. He actually gave a shit. There was a nearly 30 year old woman who'd spent almost her entire 20s in pain, passed from pillar to post, she even gave up several times because no one could or would even attempt to help, just the drugs, pain clinic and left to it. Me and the Pain team have definitely had some arguments but they're not bad people. I did get my EDS diagnosis and I'd never even heard of it. What the hell is this? And since late 2016 I've been joining up the dots of my entire life, the dislocations, the "growing pains", the stretch marks that appeared around 10 years old, the ones that still appear, my amazingly soft skin, I gotta admit its good, but also lots of other illnesses under that umbrella, caused by my faulty collagen, mutant DNA thingy. It's totally nuts but it makes so much sense to me now. I still can't fully work out yet who out of my mum or dads side has it, they all display elements of it. I am now waiting to see Dr Lazarus again to basically beg on my knees or maybe my butt, my knees hurt, to beg him to ask Stanmore or UCLH to see me, I will happily do what it takes.

🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 Day 8 of the #EDSChallenge #EDSAwarenessMonth2018 #MayForEDS. @ehlersdanlosuk @ehlers.danlos #FragileButUnbreakable 🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 So today this is about Surgeries. Well so far I've not had many at all. Infact some of y'all will be surprised I've had corrective surgery on my face. When I was 13 I was riding a bike with a kid I knew called Kyle Sweet and he had a BMX bike. His trick nuts? I can't remember what they're called caught my back wheel, and I was thrown over the handlebars. I don't remember hitting the floor. I just remember being away that there was blood coming out of my mouth, and my wrist was really hurting (the one that now feels permanently sprained), well what had happened is that I smashed my face on the concrete, fractured my tooth cavities which made two of my right side puncture a whole straight the way through my lip. I also had a rather nasty scrape across my right cheek which even now when it's cold it flares up more than my left side. Infact it flushes first. Luckily all I had done with my wrist and teeth, my mother's best friend is a sister at the ER/A&E at our hospital, so instead of gluing my face back together she sent me down to the Oncall plastic surgeon who repaired my face, the hole was apparently so big you could see my teeth from the outside. 🤢 Yep gross. I wasn't allowed to wash my face for a week, whilst using ointment, imagine what a very scabby face looks like after a week. Not pretty. I even noticed then that the anaesthesia didn't really do a lot but I was also so dopey by then I didn't care when he stitched me up. The second time I had surgery was when I had an Ovarian Dermoid Cyst removed which reached 60mm approximately (about the size of a satsuma), they performed a laporascopy (keyhole) and made two incisions either side, one in the middle, and one through my belly button. However it's really difficult to see in those pics. Plus it's quite close to my pubic region, not that I care about that but not sure if it's Insta-friendly. What surgeries have you had? Any cool scars? Btw I have loads of scars just not surgeries. 😂