Narcolepsy Forum Posting

Posted by Sleepy-head on November 22, 2002 at 13:53:11:

In Reply to: Re: Anyone know anything??? posted by SleepyScotland on November 22, 2002 at 10:02:27:

Please ask your boyfriend to give you the biggest possible hug he can, from me.

You replied so fast, and it sounds just like what I experience, the only difference seems that I’m aware that I’m uncomfortable, but I can’t do anything about it, then I have the aches and pains to deal with afterwards.
I would think your boyfriend must have left you rather like a rag doll, in a position, where your gravity was well enough balanced for you to stay like that.
If I’m likely to hurt myself really badly falling, can sometimes maintain a position, I just can’t change it.

When this started off, I mostly went stiff, and got spasms if I, or anyone, else tried to move me. Maybe that would explain the bleeding hands. It must have looked hilarious, I would be stuck in whatever position was in when the Attack started. Assuming it wasn’t a dream, my kids would remove a book out of my hands and replace it upside down. They certainly occasionally move my lips and face into funny positions, but they do put it all back as they know I’d be mad if they left me like that.

My family can sometimes relieve it, if they massage me, starting at the extremities. They always ask me first if they should, My jaw is nearly always clenched tightly shut so and I answer with mumbled Ummm or uh ummms

I was getting really desperate as it happens to me most days, and in bad phases it gets to be a semi permanent condition. I would explain it to the Docs, and they never seemed to believe me, until they saw it. It was a relief to finally have a Doctor tell me he hadn’t a clue what it was, nor what to do about it, rather than to give me the usual totally unusable, inappropriate advice.

It is just so boring, I try to station myself at the Computer, I can mostly keep 2 fingers of my right hand moving just enough to surf the web, which explains why I pick up so much information. When I’m OK enough to write, I pass it all on to you lot. Sometimes it’s really slow going but it’s some consolation to think I might be helping some of you
Reading books is more difficult, as if I flip too many pages or drop the book, I’m stuck.

The Neurologist said he didn’t think it was C. neither did I, until I found a very brief mention of rare patients having longer than usual C attacks and being all floppy, pity it didn’t say how long, Do you have any better info? How long does I last with you and how often does it happen???

You say you never mention it, because people will think you’re insane. I’ve found that as no-one knows anything about N anyhow, and find it so unbelievable that they either don’t believe it, or they assume that everything I tell them is typical. I do admit that I leave them with this misconception.
If I give then enough information, most people accept I have a rare disorder, no matter how strange it sounds, but they don’t want to accept that there is something that batteries of Specialists haven’t a clue about. I guess it’s nicer to think the (wo)men in white can fix everything.

Unfortunately I have to mention it to everyone as I have so many attacks, that way I can somewhat minimise the fuss and I’m terrified of someone calling the Ambulance.
I joined my boyfriend in Germany for 6 days last month, we had to eat in Restaurants everyday and it happened 5 times. He takes it calmly, but I can’t stand being stuck in inconvenient locations. I even started thinking of getting a wheelchair, so he can wheel me out and home. It looks like that, or never going out until I can grin and bare it again.

If anyone has any more information, please share it, as soon as you have the time and energy. If not, it is such a relief to know I’m not the only one with this. I’d really appreciate knowing who has it.

Thanx 1000000 for your reply(s)
Sleepy-head

Follow Ups:

• Re: Anyone know anything??? SleepyScotland 16:55 11/22/02 (0)

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