gertie Posted June 29, 2009 Report Share Posted June 29, 2009 Now that I'm old I don't gets as upset as I used to knowing I've missed out on approx 25 years of life because of all the problems that go with dys. My DH & I get on each others nerves to the point I would leave but I have no strength or resources to do so. In my family no one ever gives a second thought to my illness probably because I never mention it anymore. I know no one wants to hear an old person complain, besides they wouldn't listen. I'm expected to perform like any normal person. I'm not having a pity party here just stating the truth. I think what bothers me the most is at my age I know things will only get worse. Nursing home will be the next stop when I get where I can't do for myself.Does everyone feel trapped as if you are not in control of anything? The things I used to do to keep my house presentable I can't do anymore. It seems to take all my time trying to keep meals prepared & the basic household chores done. I can't remember when I've gone shopping or to church. By the time I get dressed to go I'm pooped. I've had 2 migraines in 2 days so I guess that's why I'm feel down. Thanks for listening. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted June 29, 2009 Report Share Posted June 29, 2009 I understand perfectly. It's a catch 22...it we go around saying "I can't do this or that" then we're written off as chronic complainers. However, when we don't, well, it feels like we get little or no consideration. Overall, my family is great. I don't know what I would have done without my husband. I'm sure when I'm not saying anything about how I feel, though, they are all hoping against hope that I'm really "better", whatever that means. I guess I can't say that I blame them.Over the last decade and more, I've lived in ways that I never thought I would. I've raised my kids, especially the younger ones, far, far differently than I ever imagined. I've had to rely on all of them, which I absolutely hate doing. I hate relying on anyone. Ofcourse, when I say this, my family thinks I'm just being ******, and frankly, I can understand why they get their feelings hurt by it. And crazy as it is, often I'm my own worse enemy....I'm really good at talking myself into the idea that I can do things beyond just existing. Like you, if I get dressed and putter around for just a bit, well, I'm done. Heck, I haven't cooked a meal in a week, and my husband and son did the grocery shopping this week. I went with my husband a couple of weeks ago, but that's the first I've gone in a couple of months. Even knowing this, I constantly fall into the trap of thinking "oh, I'll do this, that, and the other thing tomorrow"....ofcourse, I can't, so I'm frustrated all over again. Trapped? Sometimes I'm terrified. I'm terrified of something happening to my husband. So terrified that we're currently risking a lot to buy investment property so I'd have some income should he die before me. Yeah, I'm only a few years away from being able to collect his Social Security should he die, but I'll need more than that. We're doing term life insurance policies to insure that our investments would be paid for should the worse happen and we carry some policies that could just be used for me to live on. This still doesn't answer how I'd actually take care of myself day to day. I suppose I just can't quite let my mind go there.Oh, and my story today? My daughter was working really hard to clean up the basement and she wanted her siblings to help. She wanted me to yell at them. You know what? I can't yell. It literally makes me ill. This is my life. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 29, 2009 Report Share Posted June 29, 2009 Oh alicia, I understand! It's so hard to be dependent on others. I'm sure they want to be there for us, but they tire of the burden as well. May I say a prayer for you, to get you through? Please god send alicia someone who has an open and caring heart and ear! Please help her to find a way to not be totally spiritually and emotional isolated in her home! Perhaps someone from her church! Please give her the energy to at least go be with her church community for services! Amen! My best to you!!! Quote Link to comment Share on other sites More sharing options...
gertie Posted June 29, 2009 Author Report Share Posted June 29, 2009 Thank you both so much. I know what you mean about yelling making you ill. My DH & I had a yelling match today over nothing (as usual) & when it was over I had to take a sedative & sit in a quiet room for a few hours to calm down. I'm still weak & shakey. I think DH & I should both grow up. Quote Link to comment Share on other sites More sharing options...
erikainorlando Posted June 30, 2009 Report Share Posted June 30, 2009 Its hard on everybody...really. You replied to my post about being irritable. Yes....I don't even know if it is the meds or not....but yes...when I was so irritable this morning I had just taken a shower and dried my hair....I was shaky and dizzy and angry that I was so dizzy. Then my kids (and I love them so much) keep talking...loudly! They go go go....I can't keep up. So maybe I am just irritable!! Anyway.. I totally understand. And yes..i think at least for me I have to try to accept that I have to accept the unacceptable at this point in my life. I don't have the energy to fight (sure can't yell and feel alright after!!). I just have to accept help and say thank you. And let a lot go!! Perhaps in many many ways we are trapped at this moment. But life changes....it never stays the same. A few years back i nenver thought I would walk again (due to a different illness) but yet I was able to snow ski...... then of course i got POTS....but my point is we just plug along and post. Your posting has helped me so much. I totally relate. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 30, 2009 Report Share Posted June 30, 2009 When Im bad, yes. When Im feeling well i always look back on the bad times and tell myself that I let it dictate how I ran my life too much and that I should have pushed through it, but then I relapse and I realise that it isnt that easy Strange things set me back. Quote Link to comment Share on other sites More sharing options...
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