30-ish (shush!), Irish, disability blogger. "Baby cripple"/ mini cripple, as becoming disabled was gradual for me and I'm still getting used to seeing myself as such... As a child I was "wonky"/ had bad hips, poor coordination, but a real diagnoses wasn't made until adulthood. So slipped through the gaps somewhat, like many people with EDS. Part of the wave of the disabled community who wish to take term "cripple" back and use it as a positive.
Like many EDSers, I'm in constant agony. There is no positive spin on that -It is what it is. Aids and splints have been a lifesaver when trying to get around, do activities
☔ Ehlers-Danlos Syndrome, hypermobile type (hEDS)
☔ Chiari malformation
☔ Chiari malformation
☔ Hip Dysplasia (untreated)
☔ Dysautonomia
☔ Hiatal Hernia/ GERD
...And counting.
I use a rollator most days, a cane the odd time and a chair for very bad days -with my condition, every minute can be different. I suffer with partial dislocations daily: Countless times a day, and even with the smallest of movements -fingers, shoulders, hips, knee, wrist, ankle... It's never ending and hard to control.
I use a rollator most days, a cane the odd time and a chair for very bad days -with my condition, every minute can be different. I suffer with partial dislocations daily: Countless times a day, and even with the smallest of movements -fingers, shoulders, hips, knee, wrist, ankle... It's never ending and hard to control. Like many EDSers, I'm in constant agony. There is no positive spin on that -It is what it is. Aids and splints have been a lifesaver when trying to get around, do activities
In December 2013 I was also diagnosed with Hodgkin lymphoma, cancer of the lymph nodes. Currently all clear, and waiting for the golden 5 years to claim my "remission" crown.
I've started a petition over on Uplift for an Irish EDS consultant. CLICK HERE TO SIGN. Because it's genetic, whole families are effected. We don't get very far with the travel abroad scheme, the government have made it impossible. We can't all afford to go to London for treatment, especially when multiple family members are unwell -it's a cruel and unfair system, and we are treated as second class citizens. Irish patients are suffering -we are being swept under the carpet; left to become deconditioned, left to rot... Please, please sign and share on social media.
Happy momma to three fur-babies: Tubby (cat) and Emily and Louis (the dogs), and hoping for human ones in the new year ...and I know everyone says this on these types of blogs, but my partner (known as "Bicky" on here) is pretty patient, caring and generally an all-round swell guy, so ta to him. Scup de Bicky! (As we say in this part of Ireland). Expert shoulder put-it-in-er at this stage, and a fab wheelchair chauffeur.
Happy momma to three fur-babies: Tubby (cat) and Emily and Louis (the dogs), and hoping for human ones in the new year ...and I know everyone says this on these types of blogs, but my partner (known as "Bicky" on here) is pretty patient, caring and generally an all-round swell guy, so ta to him. Scup de Bicky! (As we say in this part of Ireland). Expert shoulder put-it-in-er at this stage, and a fab wheelchair chauffeur.
I'm a youth worker by trade, although unable to work... Early retirement has been a horrible kick in the face. Volunteer suicide intervention officer. Founder of #IrishPainies - chronic pain support group. Also help out over at Irish EDS & HSD, check out their Facebook and Twitter. Give them a like/ follow and help spread the word about this condition.
I also love to paint and sew for charitable causes over at my side project, KittyLovesTeddies. Check out the Etsy shop too. Cute, kitsch and creepy delights.
♥ Art & Craft & Photography | Atheism/ Scientific Thinking/ Skepticism | Buckfast | Animals | Camping | Veganism | Teddies & Cabbage Patch Kids & Vintage Toys | Living in the Countryside | Star Trek & X Files & The Golden Girls | Volunteering | Enid Blyton ♥
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