Well.....It's because I am quite poorly and most days, this is exactly where you will find me. I have a number of illnesses that mainly come from one overriding condition - Ehlers Danlos Syndrome.
It is a rare genetic disorder of the collagen in your body, which means it affects all the connective tissue with varying symptoms and conditions. I am yet to be "typed" but I am going for a blood test soon at the Geneticist Laboratory to confirm which one I have. It can affect almost all of your body, from your heart to your skin.
So What is Ehlers Danlos Syndrome?
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| Freaky stuff!!!! |
Symptoms
There are two more common types, and as I don't know which one I have yet, I'll just cover that. General symptoms:
- loose joints
- highly elastic, velvety skin
- fragile skin
- skin that bruises easily
- redundant skin folds on the eyes
- muscle pain
- muscle fatigue
- benign growths on the pressure areas (such as the elbows and knees)
- heart valve problems
Symptoms of hypermobility EDS are:
- loose joints
- easy bruising
- muscle pain
- muscle fatigue
- chronic degenerative joint disease
- premature osteoarthritis
- chronic pain
- heart valve problems
Symptoms of vascular EDS are:
- fragile blood vessels
- thin skin
- transparent skin
- thin nose
- protruding eyes
- thin lips
- sunken cheeks
- small chin
- collapsed lung
- heart valve problems
My Symptoms
Well....I probably have nearly all of the above but I also have problems with other conditions as a direct result of Ehlers Danlos Syndrome but I won't bore you with them......yet!As I progress with formal diagnoses, I'll update the page in more detail.
My general outlook on life is positive. I try not to take myself too seriously. I do the best I can to slow things down by doing my bit, physio, wearing glasses and other preventative stuff but it is getting worse, and there is no cure, sadly.
So....as a result of this condition, I suffer with an awful lot of pain and that is why I blog from my bed. But don't feel sorry for me because I'm one of the lucky ones. I have friends and family on board that help me lead a pretty independent life. But there is support out there too, which helps:
So, this is a rough guide as to why I'm in my bed, I hope you find it insightful and not too whingy! lol
Emma xox
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