Mrs. Glass Posted December 27, 2005 Report Share Posted December 27, 2005 I woke up on Christmas Eve and I felt better than I had in months, so I decided to clean a little and do a little cooking. I didnt do much but evidently it was too much! On Christmas morning I felt worse than I had in months. I could barely walk to the bathroom by myself and as the day rolled on I couldnt. I tried to play monopoly with my grandsons but I couldnt keep my head raised for very long, and dinner was a disaster. I tried to sit there and eat with the family, but I finally gave up and just told everyone that I was full. I cant even eat anything anymore without getting waves of nausea. My gallbladder has been checked and it is fine, so I dont know what is going on. Every morning since Christmas Eve has been a struggle and this morning I get up and I feel horrible. I just want to scream. I even tried to post words of encouragement to others hoping that it would help me to feel better, but sitting here is making me feel worse. I am so tired of laying down all of the time. And to top everything off we have been invited to a New Years Barbecue! My husband really wants to go, because he is really close to the people that invited us. I dont know if I am going to be able to sit up long enough to go, but I know my husband. He will not go if I cant. He will say that he really didnt feel like going either, to save my feelings. I am so sick and tired of all of this. When is it all going to end? I want my life back, I want it the way that it was before! Where I was independent and if I wanted something done or wanted to go somewhere I just did it. I didnt have to ask someone to take me, or have to ask someone to do everything for me, I did it myself. I am used to being the one helping others. I cant take this much longer, and my therapist is out of town until the first of the year, so you guys are all Ive got right now. This is even affecting my Grandsons. The 12 year old is a nervous wreck, he always wants to stay with us, so he can help with me. His grades are falling, and I talked to him, he said that he is afraid that I am going to get sick or fall and no one is going to be there. (my daughter is packing up her house to move so I am alone alot now) I told him that I was going to be fine, but he said that he didnt want to lose me. This broke my heart. My grandsons are very dear to me and I cant bear to see them suffering. It is tearing me apart inside. i dont know what to say to them to make them feel better. Well my eyes are just about gone out so I better stop for now. Thanks for letting me vent. It has got to get better. I dont think that I could take it if it got worse! Vanessa Quote Link to comment Share on other sites More sharing options...
Guest Belinda Posted December 27, 2005 Report Share Posted December 27, 2005 Vanessa- I am so sorry to hear your ordeal..I am not very experienced in all of this but soemthing that i noticed was that maybe you just overdid it a little on Christmas Eve..when I mean overdid it I mean in the sense for POTS patients.I see that you have been recently diagnosed with MSA or PAF.. I am sorry to hear that ussually that happens around middle life to later from what i have read although I am assuming your not in your twenties due to having grandkids.Bless their hearts for loving you like they do..even though it tears you up inside..My thoughts are with you and hope you have some better days in the near future!!HUGS to you- Belinda Quote Link to comment Share on other sites More sharing options...
taylortotmom Posted December 27, 2005 Report Share Posted December 27, 2005 Vanessa, have any other your doctors discussed saline iv therapy with you? This has helped me get through the times that you are describing. I have a permanent cathether which may or may not be appropriate for you. I would pursue iv treatment if you haven't already. It takes a lot of it to make a differrence in me- but it definitely works. Good luck!Carmen Quote Link to comment Share on other sites More sharing options...
Jacquie802 Posted December 27, 2005 Report Share Posted December 27, 2005 Hi Vanessa, I wish there was something I could say or do to help more. It seems like bad days happen more too often then good days. It's touching that your grandkids worry about you and they are soo young. I'm not sure what more I can say to you, except that I am here if you want to talk, feel free to PM me anytime.Jacquie Quote Link to comment Share on other sites More sharing options...
Radha Posted December 28, 2005 Report Share Posted December 28, 2005 sorry to hear you are feeling so fed up, i have alot of experience with those feelings! and i understand how frustrating it is when you cant do what you want by yourself and when you want to, i am totally dependent, need help for every little thing, and i feel like i will explode with anger sometimes at the injustice of it all, but those moments of despair and hopelessness do pass, even if the physical symptoms dont, so i hope you can feel alittle reassured that at least these terrible feelings will pass, hang in there, and hope you get some relief soonradha Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 28, 2005 Author Report Share Posted December 28, 2005 Hi Carmen, No my doctors have not mentioned it. My PCP is letting my Cardiologist do everything. My Neurologist doesnt seem to be doing anything. I think all of them are afraid to commit to anything. The only thing that my Cardiologist is concerned about is my b/p and the way my heart is acting, so Im all alone in the rest of this mess. I have to see my PCP on the third and I will talk to her about it, but she will probably want to send me to another specialist which will probably do nothing. Thanks for the advice though. VanessaVanessa, have any other your doctors discussed saline iv therapy with you? This has helped me get through the times that you are describing. I have a permanent cathether which may or may not be appropriate for you. I would pursue iv treatment if you haven't already. It takes a lot of it to make a differrence in me- but it definitely works. Good luck!Carmen Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted December 28, 2005 Report Share Posted December 28, 2005 Vanessa, I truly feel your frustration. I have mornings when I get out of bed and feel good... But then by 10am I am absolutely shot. Have to take a nap. A couple weeks ago I decided to vacuum, by the time I moved the vacuum from one room to the other I was worn out - and we're not talking about a huge machine here! My 13-year-old son worries about me, too. I have my cell phone programmed to ring at 5:30 every afternoon to remind me to take my meds... Victor has been getting them for me because he says that way he knows what all I take so if I have to go to the hospital he wll be able to help me. Our doctor (he and I have had the same PCP for the last 10 years) told me it was better for him to be involved so he didn't feel like we were hiding anything from him. We are belssed because he feels quite comfortable talking to our doctor.I spent several months at the beginning of this thinking that I could rest and be fine... It has been a learning experience for the whole famly! Quote Link to comment Share on other sites More sharing options...
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