FAQ: Is it terminal or Degenerative?

Screen Shot 2016-07-06 at 10.20.46 PMI truly truly don’t hate my life but boy I hate this condition… and yet for the most part I am content with my lot in life and I don’t know any other kind of life than the one I have. I have never known life without pain (since I was twenty), and for the most part I just try and get one with it. But now and then I get fed up… like today…

I popped my hip ten days ago, and thankfully it popped back in about ten minutes later when I bent down to take my shoes off, but it has been very sore ever since and I am being very good caring for it. But part of caring is that I shift more of my weight to my left foot which is the one with the permanent Lisfranc Injury, and therefore more of the weight onto my crutch which means weight on my shoulder. It is a fine balance which I have at last started feeling like I am vaguely winning (I think)… that is, until this morning…

I drop things. I drop things a lot because my hands are weak and floppy. Which sounds totally incongruous seeing as I am an artist and have pretty good control of my hands. But the reality is that I have always dropped things, and in doing so, over half of the damage to my feet has been done by dropping things on them… from full flasks to rocks! Then this morning my breakfast bowl. The bowl didn’t break, but as it fell “sideways” it flew down like a guillotine with that sharp edge and landed EXACTLY on Frank….

My word it was agony! … and it still is, and will be for a loooong time to come, and I can’t compensate with the other leg because of my hip … etc etc…

IMG_0406While is this par for the course for me and I push through and try and have a good day anyway …which I did. (I even painted shelves in the morning and sanded them with an electric sander as I sat on a banana lounge – that’s rest right?- I LOOVE the outcome and am so looking forward to putting them up tomorrow so that I can have more things by my bed which I spend so much time in). But it is a good example of how this works.

So…. EDS is not degenerative in and of itself, and nor is it terminal. Few people actually die from EDS, but some die from complications. But as with all those like me who suffer from our Eeds, over my adult life I have collected so many injuries from falls, dropping things, twisting the wrong way, ignoring the pain, incorrect treatment etc etc, and as the big injuries (even though they are all from tiny things) never heal. Not at all, not ever. They eventually after literally years sometimes reduce in severity but they never totally heal. So that collection of brokenness is permanent and growing, and I am running out of limbs to compensate for the damaged ones. Hence the crutches and wheelchair, which provide me with some new “limbs” to keep me mobile and to compensate for all the bits that are too damaged to work properly.


2 thoughts on “FAQ: Is it terminal or Degenerative?

  1. Another one here having a flumpy day but trying to see positives. Even if that positive is going to be staying awake at my desk today!!
    I do like the idea that the chair is just an extra limb ๐Ÿ˜Š


    1. I’m sorry you are having a bad day … Hope it improves soon! I was having quite a good one but I tried to move a box by myself and burst a blood vessel or two in my hand .. And of course it’s my good hand … Grrrr


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