Why From my Bed?



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?

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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