A blog about being too bendy. To raise awareness of Ehlers Danlos Syndrome.
My name is Ceri Teasdale. I have hypermobile Ehlers Danlos Syndrome, a genetic connective tissue disorder and also, as a consequence, Postural Orthostatic Tachycardia Syndrome. – Did you catch all that? There’ll be a test later. 🙂
Connective tissue supports and binds different tissues and is found throughout the body, particularly in skin, tendons, ligaments, the digestive system and the cardiovascular system. So a connective tissue disorder can cause very varied problems. I’m not sure what my strengths are as a person, but my achilles heel is my entire body.
Hypermobile is the most common form of Ehlers Danlos Syndrome but also the most disabling, due to widespread pain, frequent joint dislocations, soft tissue injuries and the most noticeable symptom, hypermobile joints. Commonly known as being ‘double jointed’, hypermobile joints led to the name of this blog – ‘A Reluctant Contortionist’.
I’m not an expert on Ehlers Danlos Syndrome (EDS), far from it. I’m just someone with the condition who wants to learn how to manage it more effectively and hopefully help a few other people with EDS too. I’ll try to keep this blog whinge-free and ideally make it fun when I can. But it also needs to be honest, and my circumstances are difficult and generating quality of life is a challenge.
Thankfully I lived very normally until I was 22. I showed many signs of EDS growing up, but was able to lead a healthy, happy life, and play sport several times a week. However after a long gradual decline I’m now mostly confined to a wheelchair due to joint pain. For the last few years I’ve been unable to eat normally, so I’m now fed slowly through an enteral feeding tube into my stomach, and also by a Hickman line directly into my cardiovascular system. I miss food every day, but I’m lucky to still be around. Plus I don’t have to cook or wash-up anymore. So like they say, every cloud…
I manage to live alone and still have many happy moments in my life. I’ve retained the same interests as in my early years, although I don’t home brew beer anymore and spend less time in nightclubs. By far my favourite hobby these days is being an over indulgent uncle to my two nieces.