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UCTD-how does it affect your family?

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Nanna6
ynevar
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1UCTD-how does it affect your family? Empty UCTD-how does it affect your family? Thu Nov 04, 2010 5:49 am

ynevar

ynevar
New to UCTD Forum

I think this is the hardest part for me. I don't feel like I am able to do the things I used to, the things I want to Sad

I am frustrated with this, because just cooking a meal is really exhausting and very painful for me some days. Sure does change how we do everything as a family.

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2UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Thu Nov 04, 2010 7:31 am

Nanna6

Nanna6
New to UCTD Forum

Now that my kids are grown and I have grandkids, I can look back and see that I didn't do as bad a job as I thought I did. My kids were 3 yrs and 2 mns old when the drunk driver hit my car and started me on this new path. During those first years I just knew I was cheating my kids of the life they should be having; I always felt quilty on top of everything else. But as time went on, and I could step back and really look at the "whole picture" I realized my kids where great kids, both were "A" students, had good friends and seemed to be doing ok in their lives.
So I guess what I'm trying to say is that while you're right there in the middle of it, you can't see the good because of how bad you feel. When I talk to my kids now (both are parent's now) they thank me for raising them the way I did knowing what I was going through; how difficult life was for me.Basically, telling me that I did a really good job and they hope they can do as good a job raising their kids!
So hang in there . . it's not always as bad as you think it is. Kids understand a lot more then folks give them credit for . . and that whole "keep the house spotless crap" is just that . . as long as nothing is "growing out of the woodworks" your house is okay. The time you take away from spending it with your kids because you where cleaning and now you're in too much pain to be with the kids, is not worth it. Give the kids the time, the house can wait!
Just some advice from someone who's been doing this for the past 31 years . . . hugs from Caryn

3UCTD-how does it affect your family? Empty True--- Thu Nov 04, 2010 7:48 am

ynevar

ynevar
New to UCTD Forum

Nanna--

I sure don't have a perfect house, and realize that it's one or the other. Sometimes dinner is enough of a chore to beat me down... never mind the dishes and the rest of the house.

I do what I can... some days I can do more, others less.

Maybe I miss what I could do more than anyone else...

-Y

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4UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Sun Nov 07, 2010 4:47 am

Nanna6

Nanna6
New to UCTD Forum

Maybe I miss what I could do more than anyone else...

This I understand and it took me a long time to let go of that feeling . . but it does get easier. Some how, some time and I can't even tell you when it happens, you just begin to except and understand that this is what your life will be like. And for some reason, it's okay! I really can't tell you how it came to be, but it did! And I actually like the person I am now . . minus all of the stupid pain!!!!

You're still new to all of this, so I don't expect you to understand, or even get what I'm saying, but for me it's been 31 years. I was only 24 when all of this began for me and I've been through a lot. But like I said, I really am a happy person; I enjoy sharing what I've learned with others and hearing what others have to share with me . . some of the new stuff.

I do hope you can feel some pain relieve soon and get some sleep. Insommnia is still one of my issues and now I'm taking Lunesta to sleep . . that and Ativan (anxiety) & Tizandine (muscle relaxer) when it gets really bad. Without restoritive sleep the pain never goes away. So finding ways to sleep is one of the best things you can do for yourself.Good luck!

5UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Tue Feb 08, 2011 12:25 am

NoelR

NoelR
New to UCTD Forum

I don't have any children, which I used to think was a bad thing, but not I think it is fortunate because I can barely take care of myself with this disease! My husband is worried about me, but I don't think he really understands why I am in pain (most of the time I don't either.) He thinks that since I am taking meds, the pain should be gone. I am also frustrated because I don't feel like doing the things I used to. I feel bad for my husband because he doesn't get to live the life with me that we both dreamed of and used to have.

6UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Wed Apr 06, 2011 5:20 am

sistuh8


New to UCTD Forum

UCTD has completely changed me and my family. I love to play and be goofy with my children and most of the time now that is out of the question. I live in FL and outdoor activities are out of the question if it requires me to be out too long. I get so fatigued and then the pain comes and I have to lay down. I feel awful because they are doing so much on their own. For example, we have the go to meals of sandwiches and soup when I am having down days. My daughter who is 11 handles it a lot better than my son who is 6. She is so helpful and it makes me feel so awful. She shouldn't have to do some of the things she does and I feel like she is growing up so soon. My son is a indoor child because I just can't run around with him like he wants me too. I used to play basketball or have a foot race with them but now those days are rare. My husband left. I truly believe he just can't handle my illness. He can't deal with the inactivity and depression. It took us so long to get a diagnosis of any kind. For years we've known something was wrong. We are both nurses. I think the stress of watching me suffer for so long and then dealing with the household being a mess and things not being done took a toll on our marriage. I would pretend to be asleep just so I didn't have to tell him how bad I felt when he touched me.I have to say this is definitely not for the weak.

7UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Mon May 02, 2011 4:52 am

Admin


Admin

Sorry it took so long to get back to you, and everyone. Been a rough couple of months.

Hope that this message finds you in a better place.

https://uctdsupport.forumotion.com

8UCTD-how does it affect your family? Empty Re: UCTD-how does it affect your family? Sun Jul 31, 2011 11:58 am

neveragain444


New to UCTD Forum

It really messed things up in my life. I ended up divorced. I had two young children, and they grew up resenting me for being sick.

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