cvincent Posted February 9, 2009 Report Share Posted February 9, 2009 I really dont like complaining and most of the time I have a hard time expressing how I feel, but I really just needed to vent/ know that someone cares.Lately, well for like the last two years Ive seriously had no social life. Most days I'm lucky if I feel well enough to do chores around the house. When I do get out of the house, like today when I went to church, I feel awful. I have a hard time being around a bunch of people. I dont know if this is overstimulation or what but it always makes me feel worse. Also I cant handle not being able to lay down or lean back in a chair when Im feeling bad. I can't go to town with my mom anymore unless Im sitting in the car for the majority of the time because standing for more than 5-10 minutes wears me out too much. So when I do actually get out of the house and go somewhere, Im usually sitting by myself in the car. I feel like no one cares that I'm sick, like no one cares about what I'm going through. I mean, I know that people do. It's just, when no one acts like they care its hard to know that they really do. The only people outside of my home that I socialize with are an older couple that I lived with for a couple months last year ( they are old enough to be my parents ). I love them to death and happen to be pretty mature for my age so I do really enjoy spending time with them. It's just that I see all of my friends that are around my age having a life and its like they all forgot about me. It's like its easier for them not to talk to me than talk to me knowing that Im sick. Like they would rather not deal with it or something. I feel like I could drop off that face of the earth for a week and no one would notice. Sorry, I guess I just need to get used to it. I've been thinking about maybe seeing a counselor or someone to help me deal with being sick all of the time but I don't know. Well thanks for listening. I just really needed to tell someone who understands what I'm going through. Candace Quote Link to comment Share on other sites More sharing options...
all4family Posted February 9, 2009 Report Share Posted February 9, 2009 Hi Candace,I am so so sorry for how you are feeling. I completly understand what you mean. I can't tell you how many events in live I have missed. And I know the pain of sitting in the car. You feel like why not me. Why can't I do those things? I have spent countless times sitting in the car where I wanted to be doing things. And it is more painful than someone who hasn't done it can imagine. Please don't think you are complaining. You are just saying what your heart is feeling. Complaining is the person who gets to do those things, and still finds something wrong with it. Like "I don't want to go HERE". I want to go anywhere I can. I think I get along so well with my grandma who is 82, and has emphazima because we can relate to not being able to do what we did before. I would like to have friends over and play cards or something, but we do not have friends anymore. I lost my last friend because I couldn't go to her baby shower,and she told me I wasn't a very good friend to her. I think it is hard for people to understand why you can't do the things they want to. But that doesn't make it easier when you feel left behind. It always makes me think of the young child who wants to be invited to the birthday party, but didn't get an invitation. How sad that is. Your body just forgot to get the participate invitation. I am so sorry for that. On the bright side I have learned more creative ways of participating with the family that is willing to make accomidations. Like laying in the livingroom and playing games. Instead of sitting. I hope things turn around for you soon. And here is an invitation for you to complain all you want. From me to you. take care Suzy Quote Link to comment Share on other sites More sharing options...
cma Posted February 9, 2009 Report Share Posted February 9, 2009 I can relate to you also. This post is very similar to one of mine. This is exactly how I feel regarding my friends. If you haven't read my post, please do the Earth mother wrote such a funny message it will crack you up.It is the same with me I can officially say that I have only one true friend left who is not scared of what I am going through and supports me in every way possible, it's my fiance. I find it even hard to be with my parents. I think that my mom still can't accept that something is wrong with me. I am longing for my old life so bad, and I still can't get used to this one with so many restrictions. I don't go anytwhere alone, I am afraid to faint and be alone in that situation. But I miss that independence so much. My fiance knows that I want to go everywhere so the other day he took me to Dublin. He let me know in advance that if I won't feel like it we will stay in the car and just drive around to see the town. I didn't feel like taking long walks around the blocks so we just drove around. I enjoy these trips, but at the same time I hurt so bad when I see all the ppl walking around shoping, going to jobs, restaurants etc. So at the moment I am just trying to get used to the fact that I have to lead a different kind of life. Maybe it will be temporary or maybe this is the kind of a life that I will have to live for many years to come. Quote Link to comment Share on other sites More sharing options...
hollie Posted February 9, 2009 Report Share Posted February 9, 2009 I think there are SO many of us that feel the same way. Most of my friends have gone their own ways too. For a while, I tried to convince them of how sick I am. I think that just pushed them farther away. I've just recently come to the conclussion to be happy for what I do have and try not to dwell on what I don't. I would get so down, even I didn't want to be around me! It stinks... I know. It's hard... I know that too. Trust me, I still struggle daily with what I used to do and who I did it with. I miss my friends. I miss my old life. I took for granted what my body could do back then. I think that's where a lot of people are. They don't realize how easy they have it, how easy their body works. They will never understand unless they go through something like this.I mostly do things with my family. I'm lucky enough to have a VERY understanding and helpful husband. Find someone that will love you unconditionally even if it's your mom or dad or sibling or even someone here on the forum... someone that truly does understand. They can help you through the harder days. Plus, never forget that we are all here for each other!! I've come here so many times feeling down and just venting here makes me feel better. Then I see how many people are going throught the same thing. It makes me feel not so alone! It's my own personal theropist!! Hollie Quote Link to comment Share on other sites More sharing options...
momofsara Posted February 9, 2009 Report Share Posted February 9, 2009 Just adding another voice to your post. Sara has experssed the same feelings to me as you. She has lost all her "so-called"friends, who at the age they are, have moved on with their lives, are out there having careers, going places, traveling, having families of their own. She feels so left out at times. I try so hard to fill as many needs for her as I can, but there is still a void I cant fill. When I take her to the doctors, it ends up being an exhausting outing for her and she is almost always bedridden for at least 1 or 2 days. If you read my post a few days ago, you know that we had a small family birthday gathering for her and it put her to bed with exhaustion. But it was worth it to her. I'm happy you have the older couple you mentioned to spend time with. Many times, older people are more understanding of medical problems than young folks. Spend as much time with them and your family as you can. Please know that we are always here for you and we do care about you. And this is one place you can come to be completely accepted and no explanations are needed. Sending you warm, healing hugs,Susan Quote Link to comment Share on other sites More sharing options...
cvincent Posted February 9, 2009 Author Report Share Posted February 9, 2009 Thanks so much everyone it's such a relief knowing I can come here and be accepted. It's really nice to be able to talk to people who truly understand. Thanks again Candace Quote Link to comment Share on other sites More sharing options...
rymac Posted February 10, 2009 Report Share Posted February 10, 2009 Hi CandaceI'm sorry to hear of your struggles and at such a young age. As you can see you are not alone. I've found nothing but kindness and understanding from the people on this forum. If only the rest of the world could understand. I'm in my 30's and have lost touch with a few friends. The ones I still keep in touch with try to understand but don't know what to say. Life has not turned out as I expected.I hope you find something in life that makes you happy. Take care of yourself and be thankful your family is there for you. It's good to vent once in a while and even be angry. Then look for things in your life that are positive.Take carebluesman Quote Link to comment Share on other sites More sharing options...
cvincent Posted February 10, 2009 Author Report Share Posted February 10, 2009 Hi CandaceI'm sorry to hear of your struggles and at such a young age. As you can see you are not alone. I've found nothing but kindness and understanding from the people on this forum. If only the rest of the world could understand. I'm in my 30's and have lost touch with a few friends. The ones I still keep in touch with try to understand but don't know what to say. Life has not turned out as I expected.I hope you find something in life that makes you happy. Take care of yourself and be thankful your family is there for you. It's good to vent once in a while and even be angry. Then look for things in your life that are positive.Take carebluesmanThanks bluesman Quote Link to comment Share on other sites More sharing options...
Radha Posted February 11, 2009 Report Share Posted February 11, 2009 sorry to hear you are feeling so down, i can totally relate, i havent been able to leave my home at all for years, cannot even sit up long enough to go outside and get fresh air, and too many years since i had any friends over or even talked to them on the phone because i cannot even talk loud enough and get so out of breath, my mom is my best friend, caregiver, my whole world so i thank God i have her, i also cannot lean back, cannot lean my head back at all or get very dizzy and blood starts pumping harder in my head, very painful! so i am constantly leaning forward, and cannot stand at all, i really hope you find some relief soon, but dont expect too much since this is all so complicated and no easy fixes, but i do hope your loneliness and sadness gets better, all we can do is find support in those who are willing to listen, most people just cannot handle all our stress! we are always here, Radha Quote Link to comment Share on other sites More sharing options...
cvincent Posted February 11, 2009 Author Report Share Posted February 11, 2009 sorry to hear you are feeling so down, i can totally relate, i havent been able to leave my home at all for years, cannot even sit up long enough to go outside and get fresh air, and too many years since i had any friends over or even talked to them on the phone because i cannot even talk loud enough and get so out of breath, my mom is my best friend, caregiver, my whole world so i thank God i have her, i also cannot lean back, cannot lean my head back at all or get very dizzy and blood starts pumping harder in my head, very painful! so i am constantly leaning forward, and cannot stand at all, i really hope you find some relief soon, but dont expect too much since this is all so complicated and no easy fixes, but i do hope your loneliness and sadness gets better, all we can do is find support in those who are willing to listen, most people just cannot handle all our stress! we are always here, RadhaThanks so much Radha. It sounds like you have it pretty bad I hope you are able to feel better someday. I'll be praying for you.Candace Quote Link to comment Share on other sites More sharing options...
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