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Really bad night

Dizzy Dame

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Hi all,

I'm sorry I haven't posted lately like I would like to, I've been very busy with the move from Hawaii to Maryland. I leave on Tuesday, and tonight I guess all that stress finally broke me.

It started with the sudden realization that over the course of my illness, I've lost all but two of my friends (both of whom live overseas). I'm leaving Hawaii, and no one has called, or come by to wish me good luck. This thought crushed me: this illness has not just stolen my health, it has stolen my friends. Of course, I understand why: I mean, who would want to hang out with a girl who can barely get out of bed?

I guess my sadness and anger over this spilled into unlikely places, because a few hours ago my boyfriend and I got into a huge fight. I ended up getting so angry that I tried to run out of the house (keep in mind that I can barely walk to the bathroom and use a wheelchair whenever I'd need to walk more than 100 feet). Of course I passed out before I got to the front door. I fell and hit my head, had a seizure, woke up on the floor and then threw up on myself.

This was the first time I'd passed out like this--usually I grey out and fall, but I'm aware I'm falling. This time I was paralyzed. I could feel myself shaking, but I couldn't open my eyes, or move (on my own).

I can't believe that I tried to run, but want's more depressing is that I couldn't even make it out of my apartment-- had there been a fire, or a burglar, I would have died. I've really truly realized that I utterly depend on other people for my survival at this point.

I sometimes wonder why I do it. It feels horrible to depend on people to eat, and get to class (if I can) and I can't even wash the dishes. I've become a parasite on the kindness of others and I don't know when, if ever, I will be able to fend for myself again.

I'm sorry for rambling, I feel better having gotten all of this out. Thanks for reading.

- Lauren

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Sorry you're having such a rough night, I hope the rest of the move goes much better then that. I hope it goes smoothly!! Make sure you get plenty of rest! I've moved alot before but never had to moved so far like that before.. wow.. Just wanted to let you know that i was thinking about you.

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its always better to talk about it. i had a rant earlier this week and felt so much better afterwards. the disease for me isn't as bad, but i can understand the passingout part. i sometimes get up and stretch my back and when i do i lose all feeling in my body and fall back... hopefully. i've hit my head and different parts of my body on various things when i lose complete control. thats terrible that you're moving from hawaii. if anything people would want to move to there, not away from it. i feel terrible hearing about this. but just remember, no one thinks you're a parasite. they like you because you are who you are, not what you are. and the friends that you do have left are your true friends, never let them go.

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Oh wow lauren..

I'm so sorry that you are having such a rough night.. and sorry that had an arguement with your boyfreind.. and such a scary passing out.. that really bites the big one..

I wish I had words of wisdom for you... just wanted to let you know i understand what you are going through.. and can relate to things..

will you be living with somebody once you get to maryland??

I hope that you will have people to help you there..

take care lauren!

HUGS ~~ HUGS ~~ and more HUGS!!


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Hi Lauren,

((hugs))) to you. Hope you are doing better now. Surely having an argument pushed you over the edge and made your reaction worse. You are doing whatever you can do for yourself. You nor anyone else asked for this illness. True friends I believe will always be around. Even if in the beginning they do not understand and stay away, they will come back once they do understand.

Will you be living with someone or have someone nearby when you are in Md.?

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I am glad that you posted for support on this. I find nights to be the hardest, especially when I can't sleep and things just swirl in my mind.

You have given so much to this site already in the very short time that you have been here. I always look forward to you bright, smart, funny, compassionate, wise posts.

Being dependent on others for everything is very hard and very frustrating. And I have yet to figure it all out. It's especially hard when your caregivers are burned out or grumpy--and I feel like I can't grump back b/c I am dependent on them. It exhausts me just to have to ask for what I need.

I, too, have been very debilitated by this illness. I hope that b/c you are still fairly early on in the process that you will begin to find some things that bring your quality of life back. I have been struggling so much lately with this issue.

As far as being a parasite--you are so much more. I have been doing a lot of soul searching over the past 8 years...and one thing I have really truly learned (but have a very hard time holding onto) is that I do have worth and I do have things I can give to this world. I also truly believe that those who are worth holding on to, will love us for our essence.

I have truly found many of those people in my life. Friends who have really stuck by me. Others haven't. But, in the end, the ones who have stuck by me are the ones who are worth it.

The sicker I get the harder it is for me to do the things that make me feel of worth. The primary thing for me is simply being a good friend and support. And, when I am able, I very much love being on this site and connecting with others.

I don't know if I am making one bit of sense. Except to say that I have had some dark, dark times...and I think this is normal given how much this illness can take from us. That being said, if you are a threat to yoruself...please seek help.

Will you be living with you parents in Md? And will you still be able to see your boyfriend, or is part of the pain for wondering what will happent now that you are leaving Hawaii?

I am so sorry that you have to leave your beloved Hawaii and come back to the snowy east coast here!

Will you please check in after you arrive safely back home?

I was drawn to you post and needed you to know that you are not alone.


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Hey Lauren, sorry you had a crappy night. I'm not sure if you posted before about why you are moving, is there family in Maryland? Please be sure to pack along your computer with you!! I always look forward to your posts and you give really great advice, and I believe I speak for all of us when I say that you are our friend. So don't ever think that you have no friends left, because you have plenty of friends here :) I hope the flight goes smoothly for you and you like your new place in MD. Keep us updated. Goodluck!

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I am soo sorry to hear about your horrible night. The passing out and fight with boyfriend. I hope your move goes more smoothly and you start to have better days soon.

Depending on people is the hardest part of this illness for me so I understand why this would be bothering you. Don't let it cast a cloud over you. It is what it is and for now you need the help. Hopefully you'll gain some independance in the near future.

You in my thoughts and I hope the best for you.


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Just hang in there. You will get moved. You will get settled. It is too bad that is has to be such a rough trip!

I have chosen to end some friendships because of my illness. A few years ago, I took a close look at everyone in my life and got rid of any that seemed poisonous. Then I went out and looked for some new ones. I have wonderful friends now and those friendships are truly 2-way streets. My friends are very loyal and they like me, dysautonomia, and all.

There are lots of friends who will like you, and accept your illness as part of who you are. You just haven't met them yet. They are waiting for you in Maryland.

Michigan Jan

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Thank you everyone for your kind words and support (your posts have made me cry). And Emily, to answer your question, my boyfriend is coming with me back to Maryland, and his family will be living near us, but my family mostly lives in Europe and New Zealand, so they'll still be very far away.

I do feel a little better today, but I have a giant knot on the back of my head from where I fell, and I'm black and blue all over. Physically I feel like I've been drugged and run over, but emotionally I feel much better.

Thanks again everyone, I don't know what I'd do without you guys.

- Lauren

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lauren -

just wanted to send some more (((HUGS))) your way. i so wish that i was still in maryland so that i could be there to welcome you. i might not be of much help physically (er...might not?? more like definitely not) but wish i could still be there for you otherwise. i haven't been AS far from family as you are but i have been far enough and it's definitely tough. and losing friends is tough...i've dealt with a lot of that myself & while it's true that the best ones stick around or make their way back it doesn't make it feel any better in the moment. and moving takes SO much energy - physically and emotionally - so don't forget that. i'm still not unpacked from my move five months ago & i had to start packing months in advance b/c it took me so long...such a difference from my previous moves when i could be all gung ho. i'm rambling and not necessarily offering much of use but just wanted to let you know that i'm thinking of you. and hoping & praying that your move is as smooth as it can be.

hang in there....

:) melissa

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