violahen Posted January 15, 2005 Report Share Posted January 15, 2005 Hi Everyone:I've been trying to get up the energy to post this because I know you will all understand and I need a boost. I have POTS and EDS. For a week or so I've known that I' was heading for a crash...Well I got there last night. (I am home alone for the next two weeks while my husband is out of town. We are both professional musicians and he travels quite a bit. I tend to stay ccloser to home for work.) Last night I dragged myself to an orchestra rehearsal which was probably my first mistake. I should have called in sick (but I have a concert tomorrow night!). I was feeling extremely weak, shaky, dizzy, the works...I got home around 11 Pm and went straight to bed. A couple of hours later I was dreaming that I was having horrible symptoms. I woke up and it turned out I was. I eventually stabilized somewhat and went back to sleep. A few hours later I was having another dream that I was having horrible symptoms....this time I was fainting as well....At this point I woke up and heard my youngest son who is 3 screaming for me. I guess he had a bad dream and was scared. I was afraid to get up to get him because I knew I might faint. (I am a fainter...even when lying down!) The cries continued so I got up and fell straight down to the floor. I was out cold. When I came to my son was standing over me now REALLY hysterical. Even though I desperately wanted to help him and comfort him, I couldn't move...I felt paralyzed. I tried to move and could not. Eventually I was able to get back into bed and allow him to jump into bed next to me. He seemed ok considering what he had experienced (by the way, he has experienced this before with me...both my kids have) I was not ok. I was a physical and mental wreck. All I could think about was "how am I going to get through tomorrow....and the next day and the next?" I spent much of today in bed...I simply could not get up. My 5 year old was at school for mucvh of the day, but my 3 year old just wandered around the house and played while I was "trapped" in bed. It is the most depressing and scary feeling. Whenever this type fo thing happens I tend to be a mess for several days following at least. I am still quite debilitated from it and I'm worried it will happen again.The worst part is that my husband seems to only be able live in denial about my illness. He is a great guy and loves me very much but he simply can't deal with this. He has had temporary moments of support and understanding, but only after Dr. Grubb has really kicked him in the butt about it. It has been very difficult, and a strain on me (and him, I'm sure). I feel like he has too much faith in me...he takes for granted that I'm going to be ok all the time, and I know that's just not true. I can't take the pressure of his expectations.Sorry to rant....I just needed to put it down in words...I don't expect any magical answers. Right now I feel like a need a hospital....I feel very vulnerable and weak. I don't want to call Dr. Grubb's office because he is so ill (and it's the weekend!) I'm not really sure what to do. I'm contemplating going to the Cleveland Clinic for fluids, but I have to go through the ER for that...that's a nightmare in itself. Oh well, I am going to try to sleep.Thanks for reading.Kristen Quote Link to comment Share on other sites More sharing options...
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