Today is rare disease day let your loved ones with a rare disease know they are loved. In medical school doctors are told "When you hear hoof beats think horses not zebras." This means to think of a more likely cause over something thought of as farfetched or rare. This makes it quite hard for anyone with one of these diseases to be heard and taken seriously as they are often shoved aside as hypochondriacs. I remember always being called one by everyone including friends and family. I remember starting to believe them. I remember being afraid of stairs for a long time because I fell down them, I remember these incidents leading to me being called clumsy. I remember being in physiotherapy in grade 1, I remember wearing high tops shoes because my ankles were "weak" and gave out. I remember my parents thinking I faked stomach aches because I liked the taste of Pepto. I remember still falling down stairs as a teenager and being told I was doing it for attention. I dont need to remember the stigma and comments like being called lazy because I still face them.. but mostly I remember the struggle to find out what was wrong with me and the relief of finding out I wasnt crazy because Not everyone gets to win the battle of seeking answers. . . . . . #eds #ehlersdanlos #ehlersdanlosfighter #edswarrior #ehlersdanlostype3 #edsdiagnosisstruggle #raredisease #rarediseaseday #rarediseaseawareness #edstype3 #invisibleillness #spreadawareness #invisibledisease #hypermobility #hypermobilitysyndrome #hypermobilityspectrumdisorder #hypermobileehlersdanlossyndrome https://www.instagram.com/p/CpOvh_5D1XH/?igshid=NGJjMDIxMWI=

“When you hear hoofbeats in the night, look for horses — not zebras.”  This quote has been used for decades by physicians to explain that when a patient has a multitude of symptoms you look for common maladies instead of rare ones. With #chronicillness it can become even more complex as the crossover of symptoms is so widespread.  The zebra quote has become synonymous with #EhlersDanlosSyndrome as patients can wait so many years to receive a diagnosis. Look at me it took until I was 36 for a Rheumatologist to say that the health issues I have suffered with from childhood are due to #hypermobileEhlersDanlosSyndrome Those of us within the Ehlers Danlos community share our stories to raise awareness as we know how long it can take to receive a diagnosis.  #zebrastrong #eds #ehlersdanlos #hypermobility#hypermobilitysyndrome #hypermobileehlersdanlossyndrome #hypermobileehlersdanlos#hEDS #ehlersdanlostype3 #chronicpain #chronicfatigue #edsawareness #spoonie #spoonielife #spoonies #spooniestrong #thespooniesisterhood #mightytogether #hanginthere #dazzletogether #zebra #invisibleillness#wherethetiredgirlsare #support#community #chronicillnessawareness #discoveringEDS   https://www.instagram.com/p/B0tqTeZgdLG/?igshid=1t1q7zoi4c3qw

So, two busy days Tuesday and Wednesday, including turning up for psychotherapy and it wasn't on due to my therapist being off for annual leave.😂 I forgot! My PIP Re-assessment was this morning which if I lose this benefit I lose my car, my independence, the ability to go out with wheelchair more places, bus pass also goes, blue badge also goes, basically everything. And no matter how much truth I told the medical professional today, I'm still scared shitless they'll think I'm lying. I got home about 3pm and immediately had to go to bed, flooded with a huge wave of Post Exertion Malaise, Fatigue and pain. I only wanted a couple hours sleep, but needed four in the end missing out on seeing the BF this evening. And now despite how tired I still am, I cannot sleep because it's hot, I'm in pain, and seriously uncomfortable, I can't cope with the CPAP on my face as my sinuses are swollen due to hayfever. Tomorrow I am aiming to go see Kurt, but I may not be very well still. My throat is very sore and hard to swallow. The ironic thing I couldn't even stay awake earlier if I wanted to, I would have just passed out whereever I was. My body won! And now it wins again. Alongside stress and the anxiety that my life could change very quickly soon. Yay! 😭 Joys of chronic illness eh am I right? #ehlersdanlossyndrome #chronicpain #ChronicFatigue #invisibleillnessawareness #hEDS #Disabled #Fatigue #PostExertionMalaise #Pain #everythinghurts #insomnia #cantsleep #Sinuspain #puffyface #uncomfortable #ThePrincessAndThePea #ehlersdanlostype3 #EDS #Fibromyalgia #ChronicPainSyndrome #menieresdisease #Anxiety #BorderlinePersonalityDisorder #Depression #MentalHealth #DPAC #DisabledPeople #Fears #Musclepain #neuralgia #Nope #lyingawake

Every time a EDS er falls I get a stripe #eds #edsawareness #ehlerdanlossyndrome #ehlersdanlostype3 #ehlerdanlossyndrome https://www.instagram.com/p/CNRMUvVpv6FPdJGXAus9e9cnN5nEca5ETECTMo0/?igshid=sp7yvg4wkh0h

EDS stands for Ehlers-Danlos Syndrome, which is a genetic disorder that affects the bodies connective tissues. Symptoms include chronic pain and discomfort, often in the joints, muscles, or nerves. It can also cause stomach problems and headaches. Ketamine can be a crucial part of a pain management strategy for many people with Ehlers-Danlos syndrome. If you or someone you know has EDS, Ketamine may change their lives for the better. Call for a complimentary consultation with the Doctor: 866.987.7874. #ehlersdanlossyndrome #ehlersdanlos #ehlersdanlosawareness #ehlersdanlosawarenessmonth #ehlers #ehlersdanlostype3 #ehlersdanlosgrrrls #ehlersdanlossyndromes #ketamine #ivketaminefordepression #ivketaminetherapy #chronicpain #stomachpain #headache #headaches #jointpain #musclepain #nervepain #syndrome #malibu #malibubeach #venturacounty #santamonicabeach #beverlyhills #waldorf #4seasons (at Westwood) https://www.instagram.com/p/CCo1o5Elcgv/?igshid=1ag8v06d9essm

Don’t let chronic illness beat you. 1 cant tell you how happy I am to notice that my knee is actually starting to bend a little more. After a year and it being stuck at 95 for ages. I’m proud of myself for my determination in never giving up. Proud to practice what I preach. Be positive, never give up focus on what you can do not what you can’t. Be patient don’t be in a race it’s about the journey. It don’t matter how long it takes as long as we are moving. If you have challenges like myself ( chronic illnesses) don’t be hard on yourself, be kind to yourself but not to the point where you don’t push through pain as that’s not being as kind as you think. It’s finding that balance, listen to your body, push yourself but understand the different in your pain. It’s all worth it you can improve your health just it takes time. However baby steps is better than no steps at all and falling backwards. Just never give up and fight the NHS system too be your best advocate we are chronic illness warriors. 👍💪👊🙂😍💕❤️ #chronicillnesswarrior #chronicillnessawareness #edswarriors #ehlersdanlostype3 #ehlersdanlossyndromes #ehlersdanlosawarenessmonth #fibromyalgiasupport #fibromyalgiawarrior #kneereplacementwarrior #kneereplacementrecovery #osteoarthritisknee #staystrongbelieve #nevergiveuponthedream #bepersistant #persistantlyconsistant #rivercutsthroughrock #believeinyourself #believeinyourselfloveyourself #loveyourself #nevergiveupthefight #retrainyourbrain4change #mindtherapytransformationprogramme #mindtherapykent #maidstonekentuk #hypnotherapymaidstone #hypnotherapyworks #cbtworks #clinicalhypnotherapy #hypnotherapist #kentuk (at Mind Therapy) https://www.instagram.com/p/B4r_KoDlM5g/?igshid=1wnt2fu4t29vi

You and your pins look awesome! 🖤 Hope the aches ease up soon. 🖤 #Repost @lifewithleigh ・・・ Black and white and aching all over😂 • #rarediseaseday #rarediseaseday2018 #eds #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlostype3 #1year #anniversary #spooine #edszebra #diagnosis #stripes #black #white

#whatedsislike #ehlersdanloslife #ehlersdanlossyndrome #eds #ehlersdanlos #whatedsfeelslike #invisibleillness #invisibledisability #howedsfeels #ehlersdanlossyndromes #ehlersdanlostype3 #hypermobility #ehlersdanlosawareness #edsawareness #ehlersdanlossyndromeawareness #hypermobileeds #heds

Night cap!! #applecidervinegar #honey #tea #yourbodyisatemple #ehlersdanlostype3 #fibromyalgia #nightcap #natural #smiletosuccess (at Fort Dix, New Jersey)

Wishing you all the best 💜🥄✨🥄💜#Repost @chronic_photographer ・・・ Appointment with a new spine surgeon today, wish me luck!🙏🏻 #chronicillness #chroniclife #chronicpain #chronic #spoonielife #spoonie #invisibleillness #degenerativediscdisease #osteoarthritis #ehlersdanlostype3 #ehlersdanlosproblems #ehlersdanlossyndrome #spoonielivingapp

It's ok to just exist sometimes. . . . #chronicillness #chronicillnesslife #chronicpain #invisibleillness #spoonie #fibromyalgia #depression #selflove #selfcare #mentalhealth #anxiety #mentalhealthawareness #mentalhealthmatters #mentalhealthrecovery #mentalhealthsupport #mentalhealthisimportant #mentalhealthtips #mindfulness #loveyourself #bekindtoyourself #ehlersdanlos #ehlersdanlossyndrome #ehlersdanlostype3 #eds #pots #heds #zebra #butyoudontlooksick #dysautonomia #chronicallyill (at Bath, Somerset) https://www.instagram.com/p/CDggE4sDmnn/?igshid=quzj09pyb8p2

Day 12 - What types of specialists do you have?🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓🦓 Ooh blimey okay so I Have a Rheumatologist, a pain nurse, a physiotherapist who's allegedly to help with EDS but unfortunately I've not seen him in well over a year which I hear is wrong.and is why I went to the gym. I have another physio for specifically my hand and wrist, I have a private osteopath who I've seen since 2010, an Audiologist/ENT specialist, Sleep Clinic Nurse for my Sleep Apnea, Asthma Nurse, Psychotherapist, I'm still pushing for the specialists up in London for my EDS and to hope I get to go on the Pain Management Program, I will shortly have an appointment for the breast clinic, I am trying to get a second opinion for my Gynae issues, the rest I can't think of right now. I'm super tired from lack of sleep this week with my knee. 😴😴😴😴😴 #EDSAwarenessMonth2018 #MayForEDS #hypermobileehlersdanlossyndrome #ehlersdanlostype3 #FragileButUnbreakable #straightouttacollagen #itsnotinmyheaditsinmycollagen #Flexiandiknowit #Healthcare

It’s so true it’s not easy living with a chronic illness and you do have to remind yourself that it is tough and not to be to hard on yourself. I myself just had a total knee replacement it’s yet another obstacle and it’s tough and I have to also remind myself I have EDS and other chronic illness and it will take me longer to heal so not to be so hard or down on myself while it is taking me longer than a healthier person. So let’s not be ashamed to cry it is hard but also remember we are always gaining more strength because we are EDS warriors. 💪💪💪❤️😘 #edswarriors #ehlersdanlosawareness #ehlersdanlossyndromes #ehlersdanlostype3 #ehlersdanlossyndromes #ehlersdanlosproblems #ehlersdanloslife #ehlersdanloszebra #chronicillnesssurvivor #chronicillnesswarriors #chronicillnessstruggles #chronicillnesss #mindtherapymaidstone #hypnotherapymaidstone #mindtherapykent #thecontrolsystem #mindtherapytransfotmationprogramme #transformationprogramme #hypnosis #loveyourselfirst #youarestrong💪 #youarestrongthanyouthink #anxietycure #gainstrenght #weaknessisstrength #freetastersessions #consultationfree #consultationsavailable #freeconsultations🌟🌟 #freetastersession # https://www.instagram.com/p/Bq-X0J_Fi19/?utm_source=ig_tumblr_share&igshid=lgn7eojsauaa

Why am I still awake I'm tired but I haven't settled for bed yet. Seriously pen, stop it. Right time for some meds and I'll give it a go. #Insomnia #Fibromyalgia #painsomnia #ehlersdanlostype3 #ehlersdanlossyndrome #hEDS #Zebra #chronicpain #chronicillness #late

Not today, or tomorrow but one day as i have made myself a promise I will run, or walk, for charity, to raise funds to help others. I hope one day to complete a 5K, half or even a full marathon. My target is by the time I'm 40, only 9 years to go! I want to raise funds for EDS UK, to help research into the many forms of EDS and Hypermobility spectrum disorders that disable many of my brothers and sisters. In the hope we find a cure, and/or better treatments, bettering the lives of many. #EDSUK #hypermobileehlersdanlossyndrome #ehlersdanlossyndrome #ehlersdanlostype3 #hypermobility #hypermobilitysyndrome #veds #marathon #goals #targets #helpingothers #raiseawareness #makinginvisiblevisable #spoonies #strongertogether #zebras