erikainorlando Posted October 21, 2009 Report Share Posted October 21, 2009 I have been adjusting to my recent breakup (not without some tears...ok a lot of tears) but I invited a good friend over for dinner tonite. He has been a great friend for years. I have told him how sick I have been. But I am not sure anyone besides you all get it anyway...So I had an appointment this morning and then I layed down and tried to go to the store in the late afternoon to get a few things...so by that time I was ill...very ill...my "sick spells". So then I reclined for about an hour...and he called and said he was on his way...so I hop up and start trying to get dinner...I cna't even see straight during dinner....can barely function..I just get too embarrassed to say I can't...I don't want to seem like a pain. I was sweating so bad and in weird spots by the time dinner was over. I cannot even pretend for a night that I am like other people...if I say something too...I feel like a complainer...or they say let's reschedule but the truth is I ALWAYS FEEL SICK...sometimes better sometimes a lot worse...but ALWAYS sick...Thanks for letting me vent....Erika Quote Link to comment Share on other sites More sharing options...
shadesofgrey49 Posted October 21, 2009 Report Share Posted October 21, 2009 Oh, Erika...I understand so very well. It's just so hard sometimes. It's hard to say no. I feel terrible when I have to break plans. But for some people, I'm saving them the hassle of having to hang out with a downer. For others, if they're really your friend, they'll want to keep you company while you feel like junk. Because even though we feel like we don't want to do anything, having company is nice, especially when they can help us with things like cooking. And food is really important for me, so I really appreciate that. I'm sure your emotions are adding to not feeling up to anything. When I'm upset and crying, it makes my POTS go nuts. So sorry about your breakup. Everything's going to be OK in that respect. The right person is going to come along who can make you feel like you can get through anything. They'll support you no matter what state you're in.It's not our fault that we're different. Sometimes we just have to tell people that we're not up to going out. Or if they come over and we're having an episode, sometimes we just need to tell them we need to lie down and they're welcome to stay and watch television with us. And throw salt and water at us. Hugs! Quote Link to comment Share on other sites More sharing options...
fighting4health Posted October 21, 2009 Report Share Posted October 21, 2009 Having this disorder has been very humbling for me. I have learned to accept that modifying plans and being creative about my options is a must to live a fulfilling life with dysautonomia. Ordering takeout or delivery and lounging on the couch or renting a movie might not be what was planned but can be a fun option that everyone can enjoy. Respecting your body's needs and focusing on what you CAN do can make a positive difference in your physical and social health. Hope this helps. Quote Link to comment Share on other sites More sharing options...
Mrs. Burschman Posted October 22, 2009 Report Share Posted October 22, 2009 I'm sorry, Erika. It's difficult to feel "different" sometimes. It's especially hard sometimes, it seems, because most of us look so "normal."Just know that we understand.Amy Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted October 22, 2009 Report Share Posted October 22, 2009 Hi Erika,I am not up to a long reply this morning, but I understand and I am SO sorry for both the physical and emotional pain you feel. One of the hardest things for me everyday is that I feel so poorly that I can't care for myself, let alone others. As a person, I am very caring and altruistic, and it makes me feel awful that I can't share this with others. Don't be embarrassed though. You know that you are trying harder than anyone else on the "outside" could even begin to comprehend... and more importantly, (if you are religious) God knows. I know it is just a verse, but try to believe in the promise in the quote at the bottom of my posts. ~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
potsgirl Posted October 22, 2009 Report Share Posted October 22, 2009 Erika,I can completely understand. I struggle with these feelings a lot, too. I used to be so active, like so many of us were, and now am pretty content to hang out at the house, although I miss social activities sooo much! Everyone wants to go to lunch, or for a drink, or have some of us couples go to dinner, and 98% of the time I'm simply not up to those things. I'm happy to get out 4 days a week to walk and perhaps run a couple of errands and make a doctor's appointment.I got ill soon after I moved to Tucson, and hadn't been at my job too long, so I was unable to establish solid friendships before I became mostly home-bound. I would love to go out and do 'normal' things again, but just don't have the energy. And then I feel guilty because my boyfriend ends up staying home a lot, too. He feels bad leaving me home alone...but I encourage him to go. At least we have this group that understands very well what we're going through. My best, and take care!Jana Quote Link to comment Share on other sites More sharing options...
tilly Posted October 22, 2009 Report Share Posted October 22, 2009 Hi erika ... why do we feel embarrassed about being ill ... i know what you are saying i too feel this all of the time ...... being constantly dragged down by this horrid illness like you say ( no one gets it) who would beleive! only us who know how hard it is every day to struggle to care for yourselve let alone try to entertain or help care for anyone else .....and to try and reshedule it is going to be the same senario again ... take today for instance i had said i would visit my son but you can not plan one minuite you maythink you have the capability and the next you have to lay down before you fall ...( tiresome ) this is my catch phrase for it .......like Mrs bursham ( amy) say's "we look so normal" some of us positivly healthy ..... i would like to hear if anyone knows why we feel embarrassed at being ill with this condition, Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 22, 2009 Report Share Posted October 22, 2009 Is it possible you are embarrassed for feeling the need to lay down? Why are you hiding your problem? Are you afraid someone will like you less because you are not feeling well?Imagine this.......a friend of yours just had back surgery, and you know it. After standing, or eating for a few minutes, your friend says, "I'm going to have to lay down for a moment. My back is acting up."Would you get mad? Would you be upset? Or would you be glad your friend feels comfortable enough with her disability and with you that she says something instead of hiding it?As difficult as this is, having a chronic problem is humbling. It is important to accept what is wrong without feeling the need for self-pity or pity from others. It is the way it is. You have not chosen your predicament in order to be "more difficult".I've decided after having this for years, to become more comfortable with my limitations. And that means, I can say out loud to someone, "I need to lay down for a minute," or "I can't stand up this long," or, "I'll need to bow out of the get-together."It's taken a while to adjust to stating my needs without worrying about the repercussions to others. Would it be helpful or loving to them if you said nothing, and then fainted, scaring them silly?You're going through difficulties on top of dealing with your medical condition. Be kind to yourself. Respect your need for assistance. Be honest with others when you are with them if you are having problems. Wouldn't you expect the same from them? Really, now wouldn't you expect others to be honest with you?Take care. We are here for you. Quote Link to comment Share on other sites More sharing options...
futurehope Posted October 22, 2009 Report Share Posted October 22, 2009 Tilly,I can be embarrassed by this condition because it is not visible to others, and my pride wants me to "keep up the fake front" of being okay, when I'm really not. Obviously, if I were in a wheelchair or in a cast, I could not "hide" and "pretend" I'm okay.Like I've said before, having an invisible illness is humbling because in order to function more easily, you have to swallow your pride, accept your limitations and be willing to state your needs to others. No "pretending" I'm like everyone else. I'm not, no matter how good I look on the outside. Quote Link to comment Share on other sites More sharing options...
persephone Posted October 22, 2009 Report Share Posted October 22, 2009 Futurehope: possibly the most inspiring message I have seen in 5 years of DINET. Thanks for sharing. You should write more often. Quote Link to comment Share on other sites More sharing options...
Maxine Posted October 22, 2009 Report Share Posted October 22, 2009 Big Hug to you Erika, This is such a difficult thing to try to communicate about. Look at my signature line------- How do you explain that? Thankfully I'm married, so my husband has seen everything step by step. Sometimes he doesn't get it completely, but he does a good job faking it. LOLI can only imagine what it's like for those of you who are finding new friends or in the dating world. This is such a difficult disorder to understand--------the medical profession doesn't even understand.Maxine :0) Quote Link to comment Share on other sites More sharing options...
Brye Posted October 22, 2009 Report Share Posted October 22, 2009 My 1st thoughts when I read your post is that you shouldn't be emberassed and my 2nd thought was take out food. I guess maybe just be prepared with ideas that you feel like your body can handle. Someone suggested hanging out and watching a movie. If you're self conscious about always feeling sick just tell him you're really tired this eve and pull out your list of things you could do! I'm brilliant with suggestions but I also am famous for hosting a playgroup and in the end thinking what the heck was I thinking. I do love having friends over though and I don't want to isolate myself either. For me though having friends over also means more eyes on my kids and playmates. I understand feeling sick though and still not wanting to admit it. I admit it I guess but I still beat myself up trying to do the things I would normally do when I was healthy. So in the end I guess no great advice from me but I totally understand what you're saying!!Brye Quote Link to comment Share on other sites More sharing options...
tilly Posted October 23, 2009 Report Share Posted October 23, 2009 Tilly,I can be embarrassed by this condition because it is not visible to others, and my pride wants me to "keep up the fake front" of being okay, when I'm really not. Obviously, if I were in a wheelchair or in a cast, I could not "hide" and "pretend" I'm okay.Like I've said before, having an invisible illness is humbling because in order to function more easily, you have to swallow your pride, accept your limitations and be willing to state your needs to others. No "pretending" I'm like everyone else. I'm not, no matter how good I look on the outside.Futurehope .. thanks .. i see what you are saying ... i am definitly not like others anymore, i have felt alone and lost with this illness, and the done thing is to say "yes im fine" when asked how are you ... i do not think there is any other conditon that is so so difficult to talk about to anyone friends family even the doctor ..... no understanding when you try to talk about it, frustration may have been a better phrase for it .... Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted October 23, 2009 Author Report Share Posted October 23, 2009 I love you Futurehope said about pretending. And it is my pride...and I guess I dometimes want to hide it from mywelf too. I also know the tendency of others is to say..."oh, let's just wait until you are feeling better"...but you all know I just don't usually feel well. Right now (at this moment) I am feeling ok...but this last for only a few hours a day...and the hours I feel ok are not consistent!! No need to explaint o you all....I know you get it!! I am used to being able to force myself to do just about anything...but this one I can't force....try as I might.....Thanks for all your kinds words and support.Erika Quote Link to comment Share on other sites More sharing options...
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