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Hunting for Harry

July 03, 2020

Hunting for Harry 14 February 2018 As my disability got worse and years before I was correctly diagnosed, I began preparing. I’ve always known, that I was the type of person, who may consider complete incapacity and loss of independence, as a fate worse than death and the closer I came to this reality, the more I realised, I needed to arm myself against the depression and complete hopelessness that was waiting for me, if I didn’t do something to prevent it. I couldn’t prevent my disability getting worse, that’s a fact. There’s no cure for Ehlers Danlos Syndrome and once you’ve reached the top of all the relevant scales (being an overachiever isn’t all it’s cracked up to be when it’s the Beighton Score) and the joints that are vital to your survival, fail, you start to fear, that it’s likely, your life will shortly be spent as a living mummy (not the parent type, the enshrouded, immobile, living dead type). I have always had an active mind (as many of us with fail...

Social Media and EDS

July 02, 2020

Social Media and EDS Sunday, 19 February 2017 Since being diagnosed with EDS (Heds), I’ve found the greatest support and education from others with the syndrome, via social media. In particular, I joined Instagram for the first time and found that, to be the best medium of social media for my needs. It's far easier for me to navigate Instagram and interact on it and I find it far less negative than other social media platforms. Facebook, for example, is a far more 'personal' platform and affords unlimited access, to provide feedback, opinions and sadly, also, negativity. I took great comfort, from joining many EDS support groups on these platforms and following other individuals in a similar situation to myself, sharing information and support - we're a community... right? Not that easy, in practice though. We’re a community alright but it’s like a community governed by a corrupt, twisted, uninformed, faceless entity, that constantly contradicts itself, cannot...

50 Shades of EDS

July 02, 2020

50 Shades of EDS Tuesday, 28 February 2017 The day the hit, chick-lit, mucky movie '50 Shades of Grey' was released in Cinema's, my OAP Bed Raiser arrived from Social Services. 'OAP' is not actually part of the name, I just add that in the same manner I call anyone under 20 years old, a 12 year old. I exaggerate, its one of my things but men love it. Eventually, Id need the raiser to help me get in and out of bed, but so far, I'm managing to do that myself. It does help that I've a four poster bed, so can hold onto bedposts when needed. At present, I mainly need the raiser to stop me choking to death during the night. After waking up many mornings, with blood on my pillow and a mild panic that someone had got in during the night, hurt me, then politely locked up again, so the place was safe and secure before they left. These bizarre thoughts often pass through my mind but even Arthur Conan Doyle would admit, the reality of my situation/life, is ...

‘A Therapists Guide to Deshielding’ By Lorna Stewart, Psychotherapist.

July 01, 2020

Firstly, for safety reasons, you’re going to put away your sword. Then bending at the knee, place thy shield on the ground. Gently, step away from said shield 😂 Remember the world has changed, whilst we’ve been shielding. There are new systems in place, that will be something of a shock to our system and will require practice, in order to get the hang of. Remember we’re 3 months behind the rest of the population here. So, prepare, practice and give yourself time. Ask friends and family (non sheilders) what it’s like, ask them to take videos next time they’re out or in a shop etc. There are people on Social Media sharing these posts already, so you can be better informed. Going out for your first walk Take it slowly and in stages. If you have severe anxiety, panic attacks or a touch of agoraphobia, its best to reintegrate yourself slowly, incrementally. Practice your breathing before you go out. Try to regulate it...

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