#EDSchat twitter chat ~ Monday 17th October

#EDSchat is a new chat to twitter and has been created for people with EDS (Ehlers-Danlos syndrome) and other connective tissue disorders. Whether you have had a formal diagnosis, are self diagnosed or believe that you may have symptoms of EDS, you are very welcome to come along and share ideas with others like you. Similarly, if you have any conditions that greatly overlap with the symptoms of EDS we would love to have you. Even if you have a friend or family member who has EDS, and you would like to learn more, please feel free to join us. […]

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#EDSchat twitter chat ~ Monday 3rd October

#EDSchat is a new chat to twitter and has been created for people with EDS (Ehlers-Danlos syndrome) and other connective tissue disorders. Whether you have had a formal diagnosis, are self diagnosed or believe that you may have symptoms of EDS, you are very welcome to come along and share ideas with others like you. Similarly, if you have any conditions that greatly overlap with the symptoms of EDS we would love to have you. Even if you have a friend or family member who has EDS, and you would like to learn more, please feel free to join us. […]

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#EDSchat twitter chat ~ Monday 26th September

#EDSchat is a new chat to twitter and has been created for people with EDS (Ehlers-Danlos syndrome) and other connective tissue disorders.  Whether you have had a formal diagnosis, are self diagnosed or believe that you may have symptoms of EDS, you are very welcome to come along and share ideas with others like you. Similarly, if you have any conditions that greatly overlap with the symptoms of EDS we would love to have you. Even if you have a friend or family member who has EDS, and you would like to learn more, please feel free to join us. We […]

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#EDSchat twitter chat ~ Monday 19th September

#EDSchat is a new chat to twitter and has been created for people with EDS (Ehlers-Danlos syndrome) and other connective tissue disorders.  Whether you have had a formal diagnosis, are self diagnosed or believe that you may have symptoms of EDS, you are very welcome to come along and share ideas with others like you. Similarly, if you have any conditions that greatly overlap with the symptoms of EDS we would love to have you. Even if you have a friend or family member who has EDS, and you would like to learn more, please feel free to join us. We […]

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Finding Dory: Finding Myself

As much as I adored Finding Nemo, when I heard there was a sequel out I had the usual pessimistic thoughts that involve hating on Disneys capitalist greed (with sequels and merchandise firmly at the helm), but whatever ‘corporate Disneys’ reasons for releasing the film, it really is a gem! Contains *spoilers* For those of you who’ve watched Finding Nemo, you’ll know that Dory is a lovable if scatty fish (she is a blue tang) voiced by Ellen Degereres.  In Finding Nemo she is an entertaining and supportive sidekick who helps Nemo eventually get back to his father. Diving into […]

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Me Before You: My Thoughts

Okay, so this is happening.  I am actually sitting down to write a post about the movie ‘Me Before You’ based on the book by Jojo Moyes.  What you have heard about the movie, and the opinions you have formed on both, will be largely influenced by your relationship too, or within the disability community.  What I am not going to do is write a very accurate and detailed dissection of all of the issues raised by this book and subsequent movie.  Many have done it better than me and I highly suggest you check out these pieces by Emily Ladau, Kim […]

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Tools for greater independence: bathroom edition

When you have physical limitations and specific needs, it stands to reason that you’re going to have to make some changes to your life and your home.  It’s amazing how many everyday tasks that most take for granted that myself and others struggle with on a daily basis.  I’ve written about adaptations in my home before and I did cast a little shade on my humble little wet room.  I feel bad about that.  The truth is I love a soak on a bath, and dream of a luxurious claw foot tub where I can soak my cares away while […]

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Where am I?

So, many of you have noticed I’ve been rather elusive of late and have, rightfully so, wondered where I’ve been and what I’ve been doing in short, where am I? The short answer: mostly in my bed, sleeping Check out my sexy fluffy hair The long answer: I’ve been around in the virtual world, on social media, and occasionally even out of my bed and my PJ’s and out in the ‘real world’…the one with sunlight and stuff, and having a stab at being present and accounted for. Despite this being, by my own admission ‘the long answer’, I’d like […]

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Becoming a wheelchair user

For some people wheelchair use is a lifelong thing, but for others there comes a point where everything changes.  Whether it’s some sort of paralysis or a degenerative condition, many of us reach a point where the choices are to sit on the sofa/stay in bed all day, or use a wheelchair and get out and experience life as a wheelchair user.  When I reached the point where I simply could not get out of my home any more, I cried and then purchased a wheelchair from a healthcare organisation.  After the grief came the big realisation, the ‘where have […]

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Different days out for wheelchair users

As a wheelchair user it’s easy to think that certain places are off limits due to steps, uneven surfaces and other such obstacles.  While some locations, such as beaches, will almost always need specialist equipment to access, do not be so quick to dismiss other places to visit due to access issues.  My advice is to research and to take venues on a case by case basis.  If you want to go somewhere, Google it and see how easy it would be for you to access.  Here is some advice on places to visit that you may have previously thought […]

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