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DYSAUTONOMIA

An illness of wealth- because with all the money sufferers have to spend getting diagnosed, it’s bleeding our pockets dry!

An illness of taste- because the people it targets are amongst the nicest, kindest, strongest most compassionate people I have ever known!

LAURA POSTING 🙂

There’s a lot of information out there about dysautonomia IF you know where to look, so I’m not going to regurgitate that here. I’ll just provide some links that you can follow/read at your leisure- that’s assuming you don’t already know about the demon that is dysautonomia from personal experience!

Dysautonomia Information Network one of the best sites about dysautonomia.

My own personal dysautonomia awareness site. I created this to explain it to people (such as friends) who DON’T know about it or understand what it’s like to live with it.

DYSAUTONOMIA IN MY OWN WORDS…

Well, ironically enough, this illness has stolen a vast majority of my ability to be eloquent. BD (that’s before dysautonomia) I was an aspiring author, writing novels for fun, because the creative process gave me fire and passion! I’m sure that fire and passion is still in there, somewhere… but thanks to the brain fog dysautonomia causes, the writing process does not come as naturally and that’s the biggest sadness I have about being ill- because what with the fatigue, the fuzzy thinking and the aches and pains dysautonomia causes, that novel is still only I dream I am not yet walking on, and I fear I am only talking to myself..*

(My boyfriend would like that line, it’s referring to one of his very favourite songs: Walking on a Dream. Thanks to Brain Fog, I couldn’t tell you who sings it).

The tendancy to go off on tangents I had way before dysautonomia, but thanks to the brain fog it causes, I’m like a de-railed train, way off track and often unable to find my way back. It makes for some interesting mental ‘journeys’ that’s for sure.

DYSAUTONOMIA: TO ME

It’s like the thief that comes in the night, you just don’t know what it’s going to have stolen from you come daybreak.

It might be your ability to stand up without feeling dizzy and nauseated: for some it’s stolen the ability to stand up at all.

Or it might have GIVEN you things you never asked for. Things you didn’t expect to feel until you were at least 80 and hopefully never because you don’t think about getting old thanks very much.Things like aches, pains, problems with your water-works (aka peeing a lot because your bladder has suddenly become like a thimble) or gastro-intestinal system. A whole host of things that make you feel old WAY before your time.

What doesn’t kill you makes you stronger, so they say. But what about things that kill the very things that made you who you are: your dreams, your goals, the very essence of you? Dysautonomiacs have to forge newfound strength: adaptation, survival of the (un)fittest. Remember that proverb: Tread lightly, for you step on my dreams? Well, dysautonomia is like an angry Mammoth stamping on all your dreams and just when you thought you might have had it tamed, it stamps on YOU.

This all sounds very depressing and yet it comes from the heart of someone who is feeling emotionally happy and well. If I’m describing it this way when I’m in a GOOD place emotionally, you have to believe me that it really is an evil, vile thing that deserves locking up in an insane asylum for Manic Mammoths.

Having your dreams trampled on, feeling old and in pain before your time, having to adapt to a new you, having to fight to be believed, having to fight even to find out what you’re fighting (thanks to the medical professionals ignorance of dysautonomia)… these are all things that dysautonomia teaches us ‘dysautonomiacs’.

So, believe me when I say we are some of the strongest people invented. And together, I really believe that we are going to (eventually) get the medical profession to stand up and take notice. Because, we may be suffering, but no longer are we suffering in silence.

Laura ~

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