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hi everyone,

i know that there was a post about this a couple of years ago. anyway, i'm 36 and still living at home. i know that i'm very lucky to have a place to live, but i still feel sort of embarrassed. now my dad is starting to have some more serious health problems, so soon he'll need me too. i have no idea how i'll help take care of him, since i can't even take care of myself. anyway, it is less lonely to live with him, but i also feel sort of resentful, because originally this was supposed to be my place, and then my dad moved in when my parents divorced. i don't know. either way, i dont' know how to explain it to other people. my friends are married with kids, and i'm regressing. before i was sick i was really independent. now my parents drive me to all of my doc appointments. i am lucky for that, but it's sort of pathetic too. just wondering if anyone was in the same situation.

thanks,

kit

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Yes, there are others on DINET in very similar situations. Hopefully they will chime in.

I'm sure it is very hard. I was dependent on family for months during a time of very acute disability, in my 30's. I do understand what you mean by feeling embarrassed. However please keep in mind that you did not bring illness upon yourself. Are there people in your life you can talk to about your feelings? Many people with chronic illness benefit from working with a therapist who understands the stresses specific to disabling illness.

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When I think about it, I know many people whose parent(s) live with them. I understand you'd like your independence, but it does beat living alone. If I wasn't married, I think I'd be begging my mother to move in. At least I know what it's like to live with her!!!

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Hi kit,

I am 37 and was happily independent and in my own place until Nov 2010 when my illness became so severe that I ended up staying at my mom's/stepfather's house. I have been back at my house for about a month (it started when the bad storm knocked out the power at mom's and we came over here with the pets until that power was fixed.) I decided to stay and see how it would go. I have been a mess and I am moving back to my mom's wither tomorrow or Saturday. I can make it here on my own generally speaking, but, if I need something, or have an appt., or my dog needs something (she was recently dx'ed with low thyroid so we're having to adjust meds and take blood every couple of weeks for her right now), then I have ended up having to call and ask mom to come help me. She has med issues of her own and is no spring chicken, so I just feel that it is turning out to be more of a burden on her for me to be here than to be at her house. It's not the way I want it to be, but, it is the way it is right now. I know things will be better one day, and in the meantime, I just try to make the best of it. My stepdad also is having med issues. They each have had to have a major surgery since I started living with them, and it turned out that it was lucky I was there. I was at least able to get them through those first few days home from the hospital with a little TLC. I think this is just what families do when push comes to shove.

I'm single and not in any state to meet and date anyone, so that hasn't been an issue either. I'm simply not well enough.

If you want to chat, please feel free to PM me. I know its a hard situation and I definitely went through a lot of emotional strife for a while due to this particular issue. Take care and be kind to yourself.

Katie

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I have been there, and am still partially there dealing with the remnants of these issues. Believe me, there are lots of people in your shoes who are perfectly healthy and just as many people with POTS in unhappy( even unhealthy) relationships or family situations, but that doesnt make it easier, does it? Most of the time i'm too busy trying to survive/push through to think about this, but i do feel sad sometimes. In fact i was just thinking about this and getting incredibly upset over the weekend. It's reassuring to know there are others out there. Thanks so much for sharing.

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I wish I had great words of advice, I'm sorry I don't but I'm in the same boat. I turned 27 this week and it was so so hard. It still is hard. I've had pots since I was 12 . I'm still living with my parents and I feel pathetic and emabressed. It's not that I'm lazy, its that my body is obstinant but I feel like others don't understand. Someone this week made some pretty harsh comments to me and they are hard to get out of my head.

I see people posting that there are many others in similar situations here, really? I had no idea. I feel so alone but its nice to know I'm not.

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Hi kit,

I'm 37 and single. I was completely independent and living far from home, working hard in my career until age 29 when I became too ill. I moved in with my parents for 6 years and was really quite depressed about it -- but who wouldn't be! Realistically, when you can't live and function independently like your peers are doing, anyone would be sad & embarrassed. Like you I've watched my friends all fall in love, marry, and have kids... as well as advance in their careers, and felt very left behind. It was so much harder before I had a dx tho - then I was afraid to tell anyone why I was at home & felt like I had to make something up. Now, knowing what I have, I simply tell people that I have health issues and need my family for day-to-day support. No shame in that. As MomToGiuliana said, we didn't bring this on ourselves! It's been a loooooong road, but I've inched towards caring less and less about what others think of my situation. Especially by our age, most people have had major life "bumps" whether it be parents being ill or passing away, or kids with health issues. Having said that, I do hate that I haven't been well enough to meet someone... like katybug, i'm just not well enough to date. stinks.

I moved into my own apartment in 2010 just 5 mins from my parents but I end up staying there whenever I have a crash. I just came back to my apartment after having to spend a month at their house! They also help me a ton with my dog, who I often don't have the strength to walk. My mom drives me to most of my Dr appts and buys all of my groceries... so I'm right there with you.

The biggest help to me in this situation (and I'm going to sound like Oprah here! lol! :P ) has been to "cultivate gratitude" as they say. I am so BEYOND grateful for everything my family has done for me. If you want to get me crying, just ask me everything they've done for me and it's waterworks! I feel very guilty for what they have sacrificed and put off "until I get well" (whenever that may be!). That immediately seems to throw any embarrassment aside. I try to focus on them and my support system. It's all a very hard pill to swallow... for sure. But I think it would be just as tough in any situation. If I was married I'd probably feel guilty about my spouse having to help me, etc...

Feel free to pm me anytime if you want to vent, commiserate, etc!

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I'm not well enough to date either. I hardly ever meet guys. Like I mentioned above someone made some pretty cold comments last week and part if it had to do with dating.... Yours 20s is for dating & experimenting, if you just got out there started dating it'd change your life. Uh, what if you can barely get through the day? She said i needed to figure out why I'm not dating. Oh maybe bc there are no guys knocking on my door at m parents house! I keep trying to tell her it's not my fault. But she wont take that. Apparently if multiple guys are askig for your number your worthless.

For the record, the other day I cut this person out of my life. She said some things that pushed me over the edge. So now I have my parents, you guys, & a few occasional email buddies

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Wow... bananas - that is way harsh! I'm so sorry you've been dealing with someone like that. And you have major courage saying goodbye to them! Go you!! I had an ob/gyn tell me I needed to get out there because "dating is good for you"... right AFTER I'd just detailed all of my dx's! I found a new doctor...

Maybe we should start a sick-people online dating service... illharmony.com? sickmatch.com? Find some hot guys who are also sick & understand?! Only glitch is that who would take care of who?? LOL...

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Lol on the dating site!

Thanks girls, she was harsh and that isn't even the worst. First, she has a disease herself, a form of mito. We met through a physical therapist. She's all about pushing through everything, I guess it helps mito. Like the more you do the more mitochondria your body will produce. The fact that I try to manage & pace doesn't set well with her and give me a hard time about it a lot. She told me heaven was weeping over my wasted life, That did me in, I don't need to hear that when I get up everyday and try to do the best I can with what I have. You'd think someone who struggles with their health as well would be more understanding but that isn't so in this case.

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bananas - It sounds like your former friend hasn't figured out that women shouldn't define themselves by whether or not they have a man in their life. That's a shame because I think she will end up being the lonely one. If she can't accept you the way you are, you were definitely smart to say goodbye.

And, yeah, where would I meet a guy right now...the doctor's office, the pharmacy? Plus, I don't really want to bring another person into this situation, when I'm not even sure what's coming next. I need to feel more settled with this disease and that I have run the full race for a dx and tx before I have to then support my half of a relationship. Plus, I spent most of my adult years (and even some of my teenage years) being the mature caretaker of all my friends and even at work, I was the manager that was the go-to gal. It's need to take this time to concentrate on getting me better and not worrying about someone else (I am not a selfish person by nature, but, I feel like I have to be right now.)

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Bananas, she probably feels bad about herself and is projecting it on you. Whatever the reason, it doesn't sound like a good person to be around and you'll be better off without her. Friends are people that make you feel good about yourself.

I had a close friend that I spent almost all of my time with that was poisonous to me I reached my breaking point and moved on. It was hard at first, I still miss her sometimes. Close friendships are hard to find/replace, especially when you are sick. It takes time, but it's also a relief to have a poisonous person out of your life.

And Kit, thanks again for the thread and sorry for hijacking it!

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bananas, that girl said the most ridiculous/rude things, that i don't have appropriate words to respond. everyone's life is worth something, and everyone deserves to be happy. you were dealt a bad hand. it's not your fault. you cant' control it. before i even finished reading your merssage, i was thinking that i was going to tell you to cut her out of your life. i am so proud of you for doing that. it can be very difficult to cut someone toxic out of your life, especially when it's hard to make new friends. i have probably kept people in who i shouldn't have, or missed people who left me on their own, who i shouldn't have. i expect people to be good, but not everyone is.

anyway, back to the original subject. i know that i'm very lucky to have parents around. i spend way too much time being terrified of what's going to happen wh en they pass away. i am definitly too sick to date, and would not want to bring someone else into this right now. i go to the doctor at least once or twice a week. i'm always trying and searching for something new. it's exhausting for everyone. and it is really wearing my parents down. my dad has always had a depression problem, so this certainly doesn't hellp. my mom who lives close by is around a lot, but i've worn her out by talking about my illness so much. right now, she is visiting my brother, and my brother has made it clear that she needs a break from my illness. i understand and agree, but it's hard. i guess that it kinds of scares me. i've been since since 1999, and i think that i just dont' feel safe in my body.

as for teh embarrassment, well clearly that is not one of my top problems. however because i have other health problems, like interstitial cystitis, wh ich is the most painful thing, and has trumped the dysautonomia, i am on heavy-duty pain meds, which happen to give me more energy. this was great until i went out and saw all of the years i had missed. plus i went to a knitting club, and i saw the looks i got when i said i lived with my dad. i felt like a freak. the truth is that originally i didn't need to lvie with him, but my parents were going through a divorce, and then as i got worse, i did, and so i probably have resentment. sorry this e-mail is all over the place. i think that i'm finally dealilng with the issues, rather than stating, "i'm tired". anyway, defionitely need a support group, so glad this one is here. anyone who wants to talk one on one, pm me. when i get a chance, i'm going to do that too. i find that to be a little easier.

take care,

kit

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