Mito and Me

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My story condensed 

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I was born with this disability, didn't start walking till I was past 4 yrs, did I say walking , stumbling more like, I was a very weak and sickly child, my parents were told I would not live past the age of 20 yrs ... so what did they know I am now 67 yrs and still going ... just ... 

during my lifetime I have spent many years in hospital and had many operations, tests, biopsy's  etc.. but until 1993 nobody could tell me what it was I was suffering from, then I met  a Neuro surgeon who took  more interest in me and finally came up with a name for my malady, he said I have good news and bad news... the good news is, we now know what you have is called Mitochondrial Myopathy, the bad news is there is no cure for it at this time.

Well that was a double wammy for me as I always dreamed of them finding out what was wrong and then curing me, so to my shame I went downhill into the land of sorrow and depression, Thank fully for me I have one mighty wonderful husband who has always been there for me and he managed to bring me back to the real world. I was told this is a rare disease and only about 100 are known in England to have it and as every one I ever met has never heard of it they mostly thought I was "putting it on" or "being lazy"  as nothing shows to say I have a disability, how many times did I wish for something that showed so people would know.

I am amazed that I managed to have 2 children and they are both fine (thank goodness) but then again I am the only one in my whole family who ever got it. I thought I was alone in England until a young man named Rowland found me through an art site (something I am good at) he assured me that I was not alone and sure enough there are far more people out there with this "invisible illness" so called because we all LOOK NORMAL ...

 

Calling  Mito the invisible illness is so appropriate as I too look normal but inside nothing works as it should..

choking and difficulty swallowing, my digestive system, doesn't digest very well, (sort the right foods out and I'm fine, then my body changes the goal posts and it's back to trying other things) my eyesight gets very blurry, weariness comes on suddenly, breathlessness too, restless legs, sensitive skin, Lazy bowels, losing balance, sleepless nights, two heart attacks so far, feeling cold in 24 degrees is normal (did I just say normal !!!!!) ooops, 

 

 these are to name but a few symptoms I have ... so yes, whomever created this disease was having a LAUGH, and I have come to the conclusion, that is why we are all such a HAPPY lot of people, we have to have a sense of humour to live with Mito .... oh! there is one more thing I have discovered since being confined to my electric wheelchair, I can now go out side and look UP and see all the things going on around me, something I could never do when I could walk-stumble, because I was always having to watch where I put my feet so I didn't fall over.  by Carol williams