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Wufflebear
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I am sorry that you arent feeling well. and hope that you feel better soon!!

I too agree that G-d doesnt give us more then we can handle... but what about what we can tolerate!! LOL...

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LOL.. I guess so! we have tremendous strength..willpower and determination..and all other things that i cant think of right now that somehow keep us going..

:(

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wow. it is amazing to me that you still work.. considering how nasty your pots is!! (i read you web page.. god bless you girl!).. Major Kudos for you.. wow..good luck and hope that you feel better soon.. be careful driving tooo..

LOL about holding down your own bed..LOL.. shoot.. some nights I try and lay down.. and I kinda end up doing a body slam into the bed..LOL my boyfriend is always like what is wrong w/ you!.. hey cant help it.. I get excited to see my bed! knowing that I can sleep and not feel like horrible b/c I sleep..its relief for me!!

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LOL ha.ha. YES TOTALLY!!!!!!

My mom and now my husband and countless other people have always chided me for falling heavily onto couches and beds...but they just dont understand how freaking happy I am to be on it!!!!! lol

Yes, sleep is a majorly good thing. Probably I am so tricksy today because this whole weekend my daughter got up at night, came in at 6am and made it otherwise impossible for me to get a nap in the afternoon... ah well.

Yea, I will be careful driving... and keep up keeping up. lol But e-gads I wish there was a darn cure for this.

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Hello all,

Yes I made it home safely. My daughters ballet was canceled and I was not sad about that! I curled up in bed and after two hours still and in the dark got my pulse down below 100 so I could sleep. chest aches, stiff body etc. etc. etc. Had kind of a yucky night and this morning I was late to work because I started to grey out when I stood up (2 times) :D . The third time I was ok and got ready for work. My pulse is still shooting up to the stars periodically, but I think I have an uneasy truce going. lol

I really do appreciate all of you and this place. It does a world of good to be able to vent and be understood. (-;

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the bladder is affected by the vagus nerve, which may explain why you felt odd. I can't hold me wee- if I do I fall over or pass out! when i have to go, i really have to go!

Also--> I had exactly the symptoms you describe wit the tachy and the tingly lips and the shakes after I rode my bike to class- it got my pulse a bit excited and took about half an hour to slow down. people must think i'm a psycho because I just sit jittering and unable to sit still while it's so rapid.....but once it goes, I'm fine:D

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LOL ha.ha. YES TOTALLY!!!!!!

My mom and now my husband and countless other people have always chided me for falling heavily onto couches and beds...but they just dont understand how freaking happy I am to be on it!!!!! lol

Yes, sleep is a majorly good thing. Probably I am so tricksy today because this whole weekend my daughter got up at night, came in at 6am and made it otherwise impossible for me to get a nap in the afternoon... ah well.

Yea, I will be careful driving... and keep up keeping up. lol But e-gads I wish there was a darn cure for this.

i am actually new to dinet and i have only had pots for about a year and a half. you say that you still work! that is awesome. i am about to lose my job so i was wondering what you are doing and how you handle your job and the stresses of it. anytime i experience any type of pain at all i been to get flushed and so weak that i can't even hold myself up or consentrate on anything. especially to keep holding the phone and make any sense to the other one on the line. i can't wait to get another job though! i am not okay with just satying at home. i think i am also going to go back to school. thank you in advance.

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Dionna-

that is a tough one. Everyone is different and I have had it for so long (since the age of 3 or 4, first faint at 5 years old, first doctor round at 6 years old). Half the time I don't know what is normal and what is dysautonomia. I have lost jobs before because of this syndrom. I have gotten warnings, bad reviews...you name it. 10 sick days in a year?? yea right... I take a lot of unpaid time. Then add in family vacation? Religious holidays I don't get off from work. (I am jewish..we have a ton). leaving early on fridays for sabbath.... They told me to work more earlier in the week. This has never happened... in my entire life. (-;

This job, it is hard to say. It seems like at about the 2-3 year mark they figure out that I am not going to straighten up and fly right like they want me too, cause I can't, and then my job is either made miserable for me or I am fired or I quite and go somewhere else to start the process over.

This job is a sit down job. We structure our own day more or less, somedays less than more. I have a boss w/ Chronic Fatigue but the people further up the food chain do not get it, and likely never will.

I had never told a boss about my problems till about a month ago (we had rolling lay offs and a pay freeze and lots and lots and lots of talk about Max output and working hard and documenting every second of our time.) EEEEEEKKKKK! (so what do I code, staring at my computer as? How about putting my head down on my desk?? err....how about 'organizing workload'.

So I fessed up. I don't know if it will backfire on me or not..I have never done it before.

I just keep checking in with him. LIke every 2-3 months I shoot him an email asking how I am doing....Are my priorities for work tasks in line with his? Are there any stresses or workplace issues (w/ co-workers getting nosy or gossiping) that I should be aware of. If there are I typically go directly to that person and try and understand what is going on. Usually, they just feel they are the only one who is truly working yadda yadda...So I sit there and ask for an hour to learn something from them....Sometimes I have to think hard for something I could beleivably learn from them...but either way it is usually productive on one level or another....and it buys me more time. Maybe another month before we start again...

I dunno.

Listen to your body. Don't overtax yourself for anyone..it is not worth it and besides it happens anyway all the time without us doing something we KNOW will be a trigger... lol

I know staying home is not so cool. Besides I did that for two years in high school...bed ridden...wheelchairs and honestly, I think it made it worse.

I would force myself to stand for a minute, then two to see how far I could push myself using my tricks to keep myself stable... Now I know that there is a threashold...I can push myself to a point and all will be well...it will just feel yucky. Then there is another point that I can not allow myself to pass. Usually if I do, I develope a new symptom or an old one worsens and then that too becomes a regular thing...Not cool!

I guess I feel like a lot of time I have about 40% or less energy to go around. (divided a zillion ways..work, children, husband, me (dont forget yourself), religious stuff etc. etc. etc.)

I keep lists and schedules.

8.30 arrive at work (hopefully)

then 8.30-9 read emails...just read and respond.

9a-10a quiet tasks...project or something

10a-11a give online trainng session

11a-12a quiet tasks....projects alternated with staring at the computer hopelesly lol

noon -12.30 lunch

12.30-1.30 you get my drift???

It can be altered w/ a boss' imput. I have to stay away from jobs where there is standing or stress. I have to stay away from jobs that have vague daily repsonsibilities or changing responsibilities, or unfixed work hours etc... I have to know what I need to do when at all times, so I can live thru it.

I hope this rambling post helps. (-;

Edited by hmichel
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