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Hi Everyone,

It seems as if I never have ANYTHING positive to share when it has to do with my poor body. After a year of this awful flare, and bed-ridden since November, I usually feel the same way everyday. My blood pressure is always low, tachy all day, all the bells and whistles, right? I have autonomic dysfunction neuropathy (autoimmune), EDS and P.O.T.S and a slew of other things as well.

WELL... Monday and Tuesday nights I did not sleep at all. So I think I was awake for 50 or more hours without sleep. This is not unusual for me and the oddest thing about it, is that I will be awake most of this time without feeling all that tired. Eventually, I will crash but it is usually for only about 6 hours.... then I am awake again sometimes for another full day- then I sleep a long time. Thursday I slept ALL day. Woke up last night at about 7:30pm and thought OH WONDERFUL, another night of being up... but by midnight I was exhausted. Fell asleep no problems and woke up feeling.... FEELING.... I don't know because I have never felt this way before. I took my BP which is always horredously low in the morning. Average is about 50/30 sometimes a little higher or lower. Today it was 100/80 HR 67. Thought- that cannot be right- did it again.. same results. Throughout the WHOLE day I felt.... WONDERFUL. I still didn't change anything because I know one day doesn't mean anything but I felt like I was a normal person. I have been bed ridden since November keep in mind!!!!! I never felt dizzy, tachy, NOTHING other than.... NOTHING. I thought to myself... is this REALLY how people feel? Normal people get to feel like this every day???????? I also had no pain. I don't even think of it as pain because I don't know the difference. But I just felt great. Nothing hurt. I have NO idea what happened. I did nothing different or abnormal. Now, I can tell its wearing off... BP dropping and tachy coming on... but what a gift. I could not believe it. I just pray this is a sign that this is the first day of others to follow. AND I am sleepy so that means I will most likely sleep tonight so maybe tomorrow my symptoms will be less as well. I am not counting chickens or anything... but it would be nice.

I realized how many people in the world take their health for granted and I know that I never will but what a great feeling that was. I am almost positive I could have done whatever I wanted today without syncope or any problems at all.... but with all of the issues... I didn't....but what a gift. HEALTH. My very first day of health that I can ever recall in my whole life. I am still beaming ear to ear because even if I never experience it again, NOW I know what it is like.

Just thought I would share!!!!! Happy Friday Everyone!!!!

Jen :) :) :) :) :) :) :) :) :) :)

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Oh my gosh! That is amazing and awesome!!!! :D Sometimes I like how unpredictable POTS is. Who knows, what if tommrow is the day it disappears completely and never comes back? Just wondering- do you think it's from the chiropractor you have been seeing?

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I had 2.5 days like that last weekend. I actually started thanking people in my life for seeing me thru the tough 6 months of my most recent POTS bout. It was really, really great. And I made sure I enjoyed the days - totally grateful. My symptoms did come back. But my hope is that my body is fighting for homeostasis somehow and these occasional good days are a sign of good days to come. Amongst my days of fighting to accept my symptoms and try and make peace with it - it never hurts to hope and believe that this continue to diminish or one day disappear. Jen ~ I'm glad you got the chance to have that day and while I vigorously scan this forum for answers and info it was nice to read your post.

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Jenn,

I'm really happy for you as I've been reading your posts and I know how much you've been through.

You have to keep your hopes up, more better days are yet to come your way!

Alex

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Jen,

This is what happened to me when I started to feel better. When I had the occasional good day I would say to myself 'Oh great, another one of life's little practical jokes'. But over a period of about a year, the good days became more and more frequent. I really hope that happens to you. Wishing you all the very best!!

Marsha

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Jen, I'm grinning ear to ear with you. Yes, what a gift!

When I first got sick, I used to have good days and bad days. I got to the point I didn't appreciate the good days because I knew they wouldn't last, and I wanted them to last so much, that I mourned all through them, not experiencing them at all, missing out on the good. I've learned that I'm never going to be "normal," so I have begun to appreciate the good moments.

I'm so glad you have had a good day, and I wish you many, many more. Thank you so much for sharing with all of us so we could celebrate with you.

Hugs,

Lindajoy

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