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Posted 10/23/2011 2:53 PM (GMT 0)
Hi Everyone,

Just having a rough spot with this subject and needed a place to land. I have 2 boys 24 and 16. I feel like they expect me to be the same person I was before I got sick. I find that I push through a lot and try to continue to keep up with their expectations. I am finding though that I am beginning to resent it a little bit? The longer I am ill, as the years are going by I am finding that I do not have the patience I used to have.

Does anyone find they also have similar feelings? What do you do? How do you balance?
Posted 10/25/2011 1:37 AM (GMT 0)
I have three kids 17, 14, and nearly 12. My diagnosis is recent so I'm still teaching them my limitations (and learning them myself) so this might not help you. Your boys are old enough to do everything on their own. We live about 1/2 drive out of town. My 17 year old doesn't have a driver's license yet (his own fault, too lazy to read the manual before taking the written test) so when he wants to go into town he rides the bus. If I need his sisters in town so I don't have to leave work as early to go get them then it is his job to bring them on the bus.

All of my kids know how to do their own laundry. They know how to cook dinner. They know on the bad days when I come home from work and go straight to bed that they are on their own for dinner.

If they want to go to school functions they know to contact friends and try to negotiate the ride at least one way (I'll reciprocate and bring my kids and their kids the other way).

I've been in so much pain that I'm crying, and I've let them see that. Kids at this age are very selfish and have a hard time seeing anyone else's pain. If I don't tell them that I'm in too much pain to drive them to town to find a new shirt for picture day, then how will they know? I don't talk about my pain all the time, but I won't hide it from them.

When I was first diagnosed I sat them down and told them what I had and how this might effect me. I told them that I won't be able to do everything I used to. i also told them that I'd be counting on them a lot more.

I don't know if this helps. I think your boys need an adjustment of their expectations, you don't want to resent them.
Posted 10/25/2011 10:20 AM (GMT 0)
Hi Springsun,

I can fully understand how u feel and i can get that on some days your patience just runs out. Your kids are at an age that they should be adult enough to understand, however they are also at an age where they are mainly concerned with themselves, teens can be selfish at times, i know.

My kids are still a lot younger my oldest is 11 and he knows whats wrong with mummy, i've sat him down after i was first diagnosed and told him that i would be more tired more often and that i'm sometimes in a lot of pain and that he should try to be considerate of that fact. I also told him that he needs to be a little bit more independant and that for instance he has to pick up his clothes on his own, vacume his own bedroom etc....

My daugther on the other hand is only 7 so she doesn't comprehend fully what is going on, she does know something is wrong but not in great detail.

There are days when i feel they aren't making enough of an effort but there are also days when they warm my heart by beeing such great little helpers.

So i guess my advice to you would be, talk to them again and again and make them understand. Try to forget the bad days, and cherish the good ones.

Fiona
Posted 10/25/2011 3:43 PM (GMT 0)
Spring, one of your sons is an adult and the other is nearly an adult.  They know you are dealing with chronic pain, right?  Do they know a lot about fibro?  If not, educate them.  There are several good things in Fibro 101 that you can print out and have them read.  Then sit down with them and have a little discussion.  Chronic pain is difficult enough and getting older adds to the mix.  So, they need to start pitching in and helping you out and not expecting things to be the way they used to be...because they aren't!  They definitely are plenty old enough to understand.

 

So, don't be hard on yourself.  You have cared for them through all their illnesses and have been there for them through their school years so now it's their turn to help you!  A big help would be not expecting you to continue to live up to their expectations.  Just do what you can and don't blame yourself for what you can't do.  People who don't have chronic pain can't keep up like they used to as they age.  I'm not saying you are old but I couldn't do things in my thirties that I could do in my teens, etc.  Just do your best, enjoy your life, and love your sons.  Above all, be good to  yourself.

 

Sherrine

Posted 10/26/2011 2:03 PM (GMT 0)
Thank you to all of you for responding to my post. I found all of your replies helpful. There were great suggestions and most of all your understanding of how I was feeling was comforting. I felt validated. I think I needed this the most!

My children do know I am ill. Neither of them (especially my older son who lives away from home) have seen me on a really bad day. My younger son being a teen, is gone a lot. He does see me more myself though. On a really bad day, I will usually stay in my room. My biggest complaint with my older son, and I have talked to him about this several times, is he does not try to get together with me on days I am feeling up for it. He expects he can pop in and out whenever and that I should be always ready for this. This is what I sorta resent. He lives with his girlfriend and she and I are not on the same page. I am quite uncomfortable around her. For instance, last Saturday evening I was very tired and not up for any company. My son text out of the blue and said he was stopping by after work. Well he doesn't just stop by. This means they will expect dinner. My husband does all the cooking, so this is not an issue for me, but it is for my husband! We did not plan dinner for them that night and there was not really enough. On some occasions recently I have tried to tell him - no I am not able to go out to lunch today, or no I am not feeling well enough for you to come over. But then he will throw this in my face on a later date and say I try to spend time with you and you say no. So he blames me if we don't spend enough time together.

I have tried to get my entire family, Mom, children to read about Fibro. My husband understands me better than anyone. He and I went to counseling together to learn how we can let the Fibro monster into our marriage without destroying it. Fibro monster was trying... When I forward friends and family information about Fibro, by email I don't hear back from them. Handing my sons articles to read is like asking them to walk the plank.

I have asked my younger son to begin to do all his own laundry. He is trying to do this. He does not have his license yet either as he is to lazy to study as well. He rides a Light Rail Train all over and this is his transportation. It works well for him and he is happy with the way things are. I am sometimes glad he isn't driving! But there are times when I have to take him places because he doesn't drive and this isn't always easy.

I guess I should have a talk with them again soon. Explaining how I feel. You all have given me some good ideas and thoughts. I love them so much, my husband and sons are the most important people in my life. We are a happy family I don't mean to say we aren't. I just think all of them forget a little from time to time that I am ill and just because I am sitting here dressed in something besides my robe or sweats and I have my hair fixed, jewelry and makeup does not mean I feel good. I actuality I never feel good. 5 years ago was the last time I felt good.

Bless you all.
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