jenglynn Posted June 16, 2012 Report Share Posted June 16, 2012 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 :) :) :) :) :) Quote Link to comment Share on other sites More sharing options...
Katybug Posted June 16, 2012 Report Share Posted June 16, 2012 Jen,It's great that you felt well today. I wish you many more days like this.Katie Quote Link to comment Share on other sites More sharing options...
jpjd59 Posted June 16, 2012 Report Share Posted June 16, 2012 Jen:Hopefully this is a sign that more good days are coming soon!!! Quote Link to comment Share on other sites More sharing options...
puppylove Posted June 16, 2012 Report Share Posted June 16, 2012 Oh my gosh! That is amazing and awesome!!!! 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? Quote Link to comment Share on other sites More sharing options...
Relax86 Posted June 16, 2012 Report Share Posted June 16, 2012 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. Quote Link to comment Share on other sites More sharing options...
hholmes13 Posted June 16, 2012 Report Share Posted June 16, 2012 Yay!! That's so great! I sure hope that is a sign that things will start looking up for you Jen! It sounds like you've really been through the ringer over the last year. It would be awesome if you started improving! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted June 16, 2012 Report Share Posted June 16, 2012 That is wonderful, Jenn!! What a great feeling to feel "normal"!! Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted June 16, 2012 Report Share Posted June 16, 2012 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 Quote Link to comment Share on other sites More sharing options...
bellgirl Posted June 16, 2012 Report Share Posted June 16, 2012 Wonderful Praying for continued good days ahead! Quote Link to comment Share on other sites More sharing options...
songcanary Posted June 16, 2012 Report Share Posted June 16, 2012 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 Quote Link to comment Share on other sites More sharing options...
LindaJoy Posted June 16, 2012 Report Share Posted June 16, 2012 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 Quote Link to comment Share on other sites More sharing options...
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