MomtoGiuliana Posted April 27, 2004 Report Share Posted April 27, 2004 I think it is due partly to being sick with a cold and not sleeping well, but I feel awful this PM. Very tired, almost feel like I am having an out-of-body experience, feel weak and like I have poor coordination. Also, a little bit dizzy and shaky. This also happened after I had a minor surgical procedure several months ago. Anyway, I'm at work right now, and supervising staff b/c our director is out. Also ran a meeting this AM. Pretending I feel fine, when I really feel like I am going to keel over. How in the world do we do this?! I'm trying to keep up the fluids.Hopefully I will make it somehow thru this day, and I'll feel better tomorrow! Of course, I can't rest when I go home b/c my 18-month old ball of activity needs attention!Is this a common thing with anyone, to have days like this, where you wake up feeling remarkably worse? And has anyone had a sudden relapse that is debilitating?I get scared when I start to feel worse. I am terrified of going back to being as ill as I was last year!Thanks for listening Katherine Quote Link to comment Share on other sites More sharing options...
purplefocus Posted April 27, 2004 Report Share Posted April 27, 2004 Hey Katherine, I am so sorry you are going thru this. I understand about your 18 month old, I have a child 2 1/2 and regardless of how we feel they always have a ton of energy. About the feeling worse when you wake up. That is happening to me also. I feel like my health is just declining down and down. I really don't know how you are handling working. I admire that. I feel like I have ran a marathon if I just make it to the bathroom to brush my teeth. But like ya have told me on here this is only temporary. You are very strong Katherine and we know this is only temporary. Paige Quote Link to comment Share on other sites More sharing options...
migraine Posted April 27, 2004 Report Share Posted April 27, 2004 Oh yes, I get migraines fequently as well as bounce back headaches. I always feel like I am on the verge of getting a migraine and imagine that I am seeing the telltale eye auras that come with it. I almost feel like I am making it happen by thinking about it so much.I work as well and have 3 kids and one on the way. At work I dream of my pillow. I lay on my couch or floor at home to play with the kids or have tickle fests. I feel like my little engine is just winding down slower and slower.I get a little snappy with people at work sometimes. I think it's because I'm tired and they have no idea about the pains going on inside my mind and body. I work in a college and I very much envy the youth and health of my students. I am also not very patient when it comes to their woes because I sometimes think they have no idea what it's like in the "Real World" or to have health problems.Once I make it through this pregnancy I hope to start experimenting with new medications that will help with my energy level and POTs symptoms. Is there any one drug out there that is giving anyone a special boost (That's legal:) Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 27, 2004 Author Report Share Posted April 27, 2004 Thanks for your response, purplefocus. Being a mom of a toddler and working when you aren't exactly well is very difficult. Actually being a mom of a toddler without working might be even more challenging! At least at work I can sit down when I need to. I can't always at home, b/c my child of course doesn't understand. Migraine--I know what you mean about finding yourself being snappy with people. Ugh, I do that too, too much when I don't feel right, and then feel bad about it. I think I feel resentful, too, like you mention, that others just seem like they are floating about effortlessly, while for me, simple things take effort. So I get easily aggravated with mediocre work performance, for example.I have gotten much better than I was a year ago, so I need to be thankful for that. I just ate a bag of sour cream potato chips from the vending machine--isn't that wonderful--to get some more salt into my system!One of my work mates, who is understanding, mentioned that today is the time of the moon cycle when the pull from the moon is at its lowest. So, in other words, the effect of earth's gravity is at its strongest today. Maybe that is playing a role, too. It sounds crazy, but we dysautonomics are so sensitive, it could be a factor for some of us.Hopefully it will be a better day tomorrow! Quote Link to comment Share on other sites More sharing options...
denabob Posted April 27, 2004 Report Share Posted April 27, 2004 Just when you think you're doing better POTS rears it's ugly head!Refering to the cold.... my Dr says that something as simple as the sniffles can completely decondition our bodies because we dont have the resources to balance BP and HR and fight another sickness at the same time!I hope you feel better soon! These setbacks are hard because when they appear first thing in the morning it feels like we're back at the starting point all over again!At least we are strong people and we always seem to make it one way or another!I commend you for working at all. A couple of you have mentioned being jealous of co-workers for getting by effortlessly and I suppose I'm one of us who can get a little jealous of you for being able to work at all. But as they say "the grass is always greener on the other side of the fence" my ending to that saying is "until you have to mow it too!" Feel better,Deanna Quote Link to comment Share on other sites More sharing options...
migraine Posted April 28, 2004 Report Share Posted April 28, 2004 Deanna:Yes, as a new member I feel like I have taken every opportunity to vent about my own problems. I'm hoping to come around to the side of a supportive member soon. It's just that every time I read something I go, "Oh that happend to me too" and so on. I have also taken notice to so many of you who can't work or have needed pacemakers or can't even walk across the room. I have to admit that that scares me, because that could be me some day. I feel so guilty, like my little problems are nothing.I do hope that you can work someday. And with this forum I hope to learn what seems to help everyone, medication updates, and so on. Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted April 28, 2004 Author Report Share Posted April 28, 2004 I also do understand, everyday, how fortunate I am now. I was very sick a year ago with POTS. I couldn't stand up some days. For months it was a huge effort just to eat, let alone shower and walk from the bedroom to the living room. I couldn't work for about 11 months. My symptoms now, most days, are mild. I so hope that every POTS patient here who is as sick as I was will get to the point of functionality I have now. It's frightening to have really bad days, because it brings back all those memories of feeling so bad.I'm so glad we have each other for support, to share information, and to rally together to demand better care and understanding of this condition.Katherine Quote Link to comment Share on other sites More sharing options...
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