Phyllis Griffiths

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How Bad Can it Get?

Oh, how I would love to be able to say that I know the answer to this one. The way the DD operates, the worst for one person may be a remission for another :-(. But this is an honest question, and one that everyone I've ever talked to is afraid to contemplate.

I know it is of little comfort to throw out the old line of... "everyone is different." Some folks feel it is too morbid and depressing to start talking about just how bad it can get.... and some folks get very frightened and even despondent when faced with just how ill some of us have been or are. It's not an easy thing at all.

The plain fact of the matter is that it can get so bad that you cannot get out of bed without help, cannot dress or bathe yourself, cannot brush your hair... you won't be able to read a book because the words will not make sence and you won't be able to follow a sentance through to the end without getting confused. You won't be able to watch a TV show because the words will be all jumbled and confused, and you won't be able to hold one on one conversations of any depth either. Your short term memory will be stuck on 'on' and nothing will get shuffled into long term memory. You will be able to go into a room, like the bathroom, and by the time you get there forget why you are there.

You can forget the names and faces of your friends and family, even those you see every day.... forget what year it is... what day, what month, even what season.

You can get small seizure like occurances... where you zone out and loose time. Or you can have muscular spasms where a motion will repete itself like a robot with a stuck gear.

You may fall down... just suddenly... wham... you fall down. Or your hands can let go....

Your insides can rebel, the muscles of the gut and reproductive system, the diaphram... all these can spasm just like the arms and legs can.

You can spend days at a time when sound and light hurts, or having the world about you move endlessly in random swirls and swings...

Your hearing and vision can go wonky and distorted...

I know that all of the above can happen... because it has all happened to me.

I know of other who have had all this and more.

The only comfort in the bad times is the knowledge that they will pass, as they always have in the past. Yes, you can get worse... you can also get better. Maybe not cured, but better than you are today.

I firmly believe that if the world really knew just how bad it can get, and just how many of us that really do get that bad... that maybe they would be so frightened and appalled that they could no longer just deny the reality of our suffering.

But its a funny thing. Some folks react by saying that we are on a pitypot trying to do a 'sicker than thou' trip when we start to try and find out just where that bottom limit is. I don't know about you all... but I want to know what may be in store for I can see it when it comes and not spend months in needless suffering. If I know what is due to the DD, I can also know what isn't... and again avoid months of needless suffering for something that can and should be treated and cured.

If as a group, PWC's don't know how much worse it can get... how can we expect any one else to know the answer to the question... how much worse can it get?

© Phyllis Griffiths, 1997

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