DSM3KIDZ Posted December 6, 2005 Report Share Posted December 6, 2005 I knew there was going to be pain and suffering in everyone's life but I never knew it was going to be on a daily basis. I heard your never given more than you can handle. Well I must have been confused with someone else because this is more than I can handle....more than my family can handle.I'm not depressed today or sad I just don't know how I can wake up another day and feel so physically horrible and watch the disappointment in my families eyes.When I was first sick I would get a week of feeling good and a 2 bad ... now it's constant for 2-1/2 months. It starts to wear you out. Do you guys feel sick everyday? Sorry for the pity party but this just feels like a horrible nightmare and i'm not waking up! Well for my kids I have to keep fighting but this is the hardest challenge I've ever faced.I don't think it's normal to be sick everyday. I personally don't physically know ANYONE who is sick all the time. Trust me I know alot of people and families and only 1 person had a chronic illness and she's only sick few times a year. So I find this hard to accept. Are you guys in this alone too?Thanks for letting me vent..again!Dayna Quote Link to comment Share on other sites More sharing options...
BuddyLeesWife Posted December 6, 2005 Report Share Posted December 6, 2005 Please keep faith that things will get better. My husband had a 4 month period when he was diagnosed with Epstein-Barr Virus on top of this stuff where he was mostly bed-ridden. It was awful and he suffered greatly and was very depressed - it was also during the holiday season in 1998 which added to his guilt. This was before we had a diagnosis of NCS and I stuffed him with every type of food/vitamin/supplement that is supposed to support the immune system. Who knows what worked (probably the 16 hours of sleep a day) but he did improve and has not had a similar period since. Could you have picked up some sort of bug/virus/infection that is causing this to be an everyday thing? We were actually lucky that his throat flared up or they probably wouldn't have found the EBV. Quote Link to comment Share on other sites More sharing options...
LisaColumbus Posted December 6, 2005 Report Share Posted December 6, 2005 Hi Dayna, I understand what you are going through. It has now been 11 months of feeling sick almost everyday. Every couple of months I will get one day where I feel almost like the old me. I am thankful for getting those days but it also makes the other days that much more difficult. Have you spoken with a therapist that specializes in chronic illness? I am in the process of trying to find one and am not having any luck. Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 6, 2005 Report Share Posted December 6, 2005 (edited) dayna-i wish i had something better to add but for the moment i'll just send some great big (((HUGS))). i honestly feel like i'm in a similar place right now. i definitely feel sick every day; the only difference is the degree, and at the moment it's not heading in the right direction. and the only people i know that truly can "get it" are folks on the forum....not any other people in "real life". so you're not the only one who is going it alone in that regard. it's easy to say the "hang on it will get better" line but i know that for me, while i have to believe that (at least to a degree) it's hard when for me that hasn't generally been the case so far. but enough about things on my end. just wanted to let you know that i'm thinking of you. and hoping for the both of us (and everyone else) that some magic pills come along real soon....lisa - i too had a super rough time finding a therapist with any bent toward chronic illness but eventually did...twice in fact. although one didn't really specialize in the field but was willing to learn & for other reasons was a good fit. that doesn't do me any good now as i'm 400 miles away but keep plugging along...you WILL find someone. i know it's tough though when energy is so limited to begin with...:-)melissa Edited December 6, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
sally Posted December 6, 2005 Report Share Posted December 6, 2005 Dayna,I'm sorry that you are having a tough time and hope you feel better soon. Symptoms do wax and wane for most people although for alot of people symptoms are there everyday. I think it's the hardest on people who were feeling normal before this hit and who were active and full of energy. There are those who have had it pretty much a life time, myself included. For me, it is an everyday thing with the once in while normal thing, I just don't discuss it with anyone outside my own family or physicians because people just don't understand. The adjustment periods are rough for sure. What I did when things got really rough at one point is, I cried (mourned) for my self, my expectations for things and the whys, etc and then let it go. I stopped trying to keep up with everyone else which made things worse for myself in the long run. I didn't give up things but I learned to adjust. Give yourself permission to have a feel bad day and give your body what it desires which is rest that day when you need to. With this type of problem it is truely all about balance in your life, which is the hardest to learn for most of us. Good luck and feel better soon Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted December 6, 2005 Report Share Posted December 6, 2005 I went through a period of several months when I was very sick. POTS can wax and wane for many patients. You have every reason to believe that you will improve again. Try to keep that in mind. But, I know how hard it is, especially when you have people who rely on you--like your children.Do you have new symptoms or have they just intensified? Have you gone off any POTS meds, that maybe you should try again--maybe they were helping more than you realized? Do you have a specialist you can see to talk about these worsening symptoms? There are probably some things you can try (medicines or other treatments) that could possibly help you to feel better.Let us know how you are doing!Katherine Quote Link to comment Share on other sites More sharing options...
morgan617 Posted December 7, 2005 Report Share Posted December 7, 2005 You are not alone. I have not had a decent day since August. I have to lie in bed and think of one reason to get up before I can. When you have fair days interspersed, it makes it a little more manageable, but I don't even post anymore, I feel so crappy all the time, don't email my friends as much. My therapist says she thinks I'm more depressed,....duh do ya think....morgan Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted December 7, 2005 Report Share Posted December 7, 2005 Dayna, no, it's not normal to feel that awful every day. It can take quite a toll on one's morale...Some have done well by using a therapist that specializes in chronic illness, and/or terminal illnesses. Personally, I went through several years of therapy and found it really helped me to cope--can't say it helped me to cope with illness, but I did better with all the other crazy stresses with family, friends and work. It also helped me to be more assertive when it comes to getting medical care.I hope you are feeling more centered and hopeful soon. Nina Quote Link to comment Share on other sites More sharing options...
JenniferInOhio Posted December 7, 2005 Report Share Posted December 7, 2005 I'm so sorry you are feeling sick everyday. That has to be so tough. I hope you are feeling better soon. (((HUGS))) Quote Link to comment Share on other sites More sharing options...
Dizzy Dame Posted December 7, 2005 Report Share Posted December 7, 2005 Dayna,I feel for you. I too feel sick everyday, but some days I'm "less sick" than others. But I usually have to spend a great portion of my time in bed, and I have to use a wheelchair when I leave the house. I don't even remember what it feels like to not be dizzy...I think it would feel very strange. I know this is going to sound trite, but I've managed to cope by keeping my mind off of it. I've learned to like activities that require no/little physical exertion: writing, reading (when I can), watching t.v. I've even started a blog to pass the time. Filling my life with things I can do in bed makes it feel like I "want" to be here, or at least I don't notice all the other things I'm missing out on. Just try to take things one day at a time. I'd probably throw myself in traffic if I thought I'd feel this way forever, so I don't think about it in those terms. I hope you begin to feel better emotionally, even if you aren't feeling better physically. (((((HUGS)))))Lauren Quote Link to comment Share on other sites More sharing options...
Mrs. Glass Posted December 7, 2005 Report Share Posted December 7, 2005 Hi Dayne, I know how you feel. It is getting to me too. Sometimes I wish that I could just sleep all day just to pass the day away. But I cant sleep very much at all. I wish that I had some great words of wisdom for you. I read all of the other posts sent to you, and they are great. I could not add anything else. They are a great bunch of people here. I agree that you need to find a therapist that specializes in chronic illnesses. My therapist is good, but she specializes in family problems. But in my area there are only 2 therapists in my insurance network, and she is one of them. Hang in there. Mrs. Glass I knew there was going to be pain and suffering in everyone's life but I never knew it was going to be on a daily basis. I heard your never given more than you can handle. Well I must have been confused with someone else because this is more than I can handle....more than my family can handle.I'm not depressed today or sad I just don't know how I can wake up another day and feel so physically horrible and watch the disappointment in my families eyes.When I was first sick I would get a week of feeling good and a 2 bad ... now it's constant for 2-1/2 months. It starts to wear you out. Do you guys feel sick everyday? Sorry for the pity party but this just feels like a horrible nightmare and i'm not waking up! Well for my kids I have to keep fighting but this is the hardest challenge I've ever faced.I don't think it's normal to be sick everyday. I personally don't physically know ANYONE who is sick all the time. Trust me I know alot of people and families and only 1 person had a chronic illness and she's only sick few times a year. So I find this hard to accept. Are you guys in this alone too?Thanks for letting me vent..again!Dayna Quote Link to comment Share on other sites More sharing options...
DSM3KIDZ Posted December 7, 2005 Author Report Share Posted December 7, 2005 Thanks everyone for posting. I guess I have to keep fighting in hopes the future will be better. I'm sick again this morning so it's easier said than done but I'll do it for my kids. I do have a therapist who works with chronically ill (usually AIDs patients) but unfortunately she's not that much help. She lets me vent but doesn't offer much for strategies to help cope.This site seems to be the one thing that helps. When I'm feeling overwhelmed I need to express it or I bottle it up than lose control. Thanks for letting me lean on you guys.Dayna Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted December 7, 2005 Report Share Posted December 7, 2005 Dayna..I'm late here.. but just wanted to say that i hope that you feel better soon!!sending some HUGs your way..Linda Quote Link to comment Share on other sites More sharing options...
Jersey Girl Posted December 7, 2005 Report Share Posted December 7, 2005 Dear Dayna,I'm so sorry that you are feeling so miserable. I know that when I get really, really in bad shape it usually seems to be from hormonal fluctuations or weather low pressure systems and it doesn't seem that there's too much I can do about it, but wait it out or take Xanax for me. I hope this finds you better. Martha Quote Link to comment Share on other sites More sharing options...
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