Do you fight through your pain/fatigue or do you let it get the best of you and let it make you feel like your 150 years old can no longer function or get up out of bed 1/2 the time, like I do? Is it because I know I can get by with living that way and survive? Many people who are sick get out and live a normal life, and hold down a job. So what is wrong with me? My son has done more over the past few years for this world than I have done in my entire life.. Kinda makes me feel a bit disappointed with myself. My daughter needs a mother who can be a good mother. I am not that person and it's not because I don't want to be. But I just physically am useless. I've had one down in the dumbs day today, stressful, I think maybe I am going through that thing men go through, that mid life crisis thing. And feeling sorry for myself.
i do not fight it nor do i lay down with it. i adapt each day to the way i am today. plans may fly out the window or may be fulfilled. while i may not be able to do what i used to do i can still function and i make the most of those moments. my children understand, tho they are grown, i am still a nana, so i have 12 children to consider daily.
no illness can touch love. love is what all children want. love, kindness, a hug. it's not about time and going and doing, it's only about love. fibro cannot touch love.
we all do the best we can each day. it is all anyone can do, healty or not.
I guess I was functioning okay until recently, even if tired, at least I was able to move around the house and get things done, but then I got really sick and broke out in fever blisters, and even though that's healed up, I still can't snap myself out of this exhausting overwelming fatigue. It is worse than usual and it makes it tough for me to deal with. I have kids to think about. That's why I don't hang myself. I'm useless to them but they still want me here. But I don't feel like it anymore. My body is too sick to want to function or live or do anything, it's too much! I can't keep pretending it's okay, it's not okay. It is nothing but misery and I hate HATE living like this. I don't know what degree of fatigue the pain causes but UHHHHHHH! I wish they'd make me comfortable like someone dying where I could just lay around in bed dosed up on strong pain pills and not feel a darn thing and just lay there and never ache from laying around too long and just sleep as long as I wanted to and forget I'm in existance with the rest of the world.
I have failed so poorly with one of my kids. She has anxiety like I do and I couldn't keep her in school and the work I get done with her teaching her, only half the time, it is not enough by far, her education is shot, because I am sick and can't accomplish anything, I have ruined this child's future.
Neveragain, my sister-in-law ended up real sick like you during the middle of home schooling five kids. Her oldest had a learning disability they never knew about. Anyway, like you they couldn't get to it some of the days. Finally, when the oldest was high school age, they put her and her brother in public school, and not in a real great section of town either. The school picked up on the disability immediately. That daughter, which my s-i-l always thought she'd failed ended up making straight a's in high school and college. The school got her caught up very quickly and she's now a teacher herself. The anxiety is probably not as easy to work with; I wish it were.
I can't say anything about the rest of what you are feeling right now; I feel the same on many a day. I'm sorry it is so hard right now. I wish I could give you a week in a hotel alone!
I couldn't get my daughter into junior high, and then when I finally did get past the anxiety with her, and back in school after 2 years of being out, it was problem on top of problems. This is just part of why, but the people in the office got really mean with her for going to the nurse's office and she had a fever & respiratory infection, instead of believing her, she's accused of not wanting to be at school, principal gauked at her like she was some kind of weirdo, really made me mad. How are you going to feel when your child's school has your kid in tears treating her like that? All they had to of done was take her temperature! Her friends from this school, one came to my house and stole all her new school clothes and I didn't know she took them, same girl told the principal my ex asked her to go to a hotel with him, claimed I even heard him say it. What it was, was the girl was talking about having her & my daughter's b-day party at a hotel and he was joking saying he'd wish they'd all go to a hotel as to not have to put up with them. Then there's where one of the kids pound her in the head with a big rock. Then there's these boys at school that kept saying nasty remarks to my daughter and even one was putting his hands on her. Reported it time after time, they moved him from sitting beside her in class and ended up putting him right back beside of her. He was also reported by other girls. The school wouldn't do anything. So I got fed up and took her back out of school, and knowing I can't do this homeschool thing well with her. Now if she went back to school, she'd have to go back to junior high and all of her friends have went on to high school and she won't do that. And I can't say it's because I'd let her tell me what to do, but you can't even imagine what it is like trying to get her into school if she doesn't want to be there. You mind as well lock her up and forget it. There's no way I can do that. I have no support from my family, her dad doesn't even try helping with this and he is perfectly capable. I guess I was trying to protect her. I don't do well with the homeschooling with her, I just wish my illness wouldn't screw up her future. I did have her in therapy with the whole anxiety issue. She was diagnosed with oppositional defiant disorder (though she's a near perfect kid), and with school phobia. She wouldn't exactly talk to her therapist and we never did know why this happened, but I would bet knowing what all went on in 8th grade, that some boy put his hands on her in 6th grade, and scared her from going back. Even to today, she hasn't told us why she reacted that way.
Last edited by neveragain444; 03-13-2010 at 04:41 PM.
I have been told by my chiro, that I am the only fibro patient she has who ignores the pain and keeps on going. I don't know if that was a compliment or not. She is correct however. I do have a pretty busy life and yes sometimes I have to just give up and take a day of rest. I don't always feel the greatest, but I take each day as it comes. I check my calendar and plan in advance when there are things I have to do, to make sure I can get them done.
I live by the expression, 'fibro is what I have, not who I am'. I won't let it interfere with my time with my grown children, or those beautiful grandchildren or for that matter any of my family. Time with them is too precious, like blue said it is all about the love. Fibro cannot take the joy of life away from me unless I let it.
Neveragain, you may feel like the fight is all out of you and none left for your daughter, but that's not what I'm seeing. I'm seeing someone like glojer, someone who's still heavily involved in her family's life, still searching out a way for her daughter's best (I've recently changed my login; I've watched glojer awhile and you have a lot of her same positive qualities). Talking here is one way you help your daughter.
Junior high is a horrific place for anyone new or different. I think you saw wisely that support (at school and at home) was not sufficient for the transition at this time; in fact, it was opposite of support. I remember when I first got this stuff and was in the middle of three huge traumas--one physical; other two, deaths. I got no support for my oldest at school and part of his makeup today (12 years later) still contains the fury from that year and a half of neglect and meanness that met his fear. My youngest got all the support in the world at school and his upbeat attitude was born then. I think you acted wisely on your daughter's behalf. We live in a top notch school system, but I've known principals here who have left their kids at home to get schooling for reasons like yours.
You can't do anything about what has happened before now, but grieve it accurately and figure out what you/she can have from here. No apologies. Life happens. You can't do a miracle whirlwind for the future either--not in your condition and with so little concern from hub yet. The psyciatrist is full of it if she puts your daughter down for any phobia related to school as far as I am concerned. The US school system was created for those in the middle of the range of normalcy--this situation is a reflection of that fact, and not any "fact" concerning your young child. Your child is just outside that range of normalcy given her awful experiences with school to-date and her situation at home with the highly concerned parent being sick and the dad not having caught up to the reality that he's needed.
You can't fix the past, but you can take one small step each day to get this fixed. Only you know what those steps are, but you can take one each day if you just set down that huge guilt burden. You have a leukemia-type health problem. One thing a day is enough and will help.
Just asked because another sister-in-law has been heading up one in her town for 10-15 years--they have over 200 students now and she helps them get scholarships and colleges. Another local church has a big networking group as well--it's just a given no one person can do it all so they pick up each other's slack as needed. I know some home school for better education, some for religious reasons, some because there just is no choice given unhealthy school environments. Hope this week is a good one for you.
Hi Neveragain444, I had the same problem with my daughter when she transitioned from Middle to High School. She like myself had anxiety disorder. I managed to get the school to come to the house and tutor her. Granted I was working fulltime at the time. You have an illness that is very unpredictable. Your daughter has been seen and diagnosed. I don't know why with both your condition and hers being documented that you cannot go to the school and ask for a tutor. My daughter has since gotten her G.E.D. because she did not do the work required. But since being out of school she has significantly lost most of her anxiety. She is now 29 and living in Florida and managing a veterinary hospital office.
I think you will feel much better if you get on the phone and explore these possibilities for your daughter. It will also take some of guilt you are carrying off of your shoulders and maybe help you feel a little better about yourself. You can't help her if you are constently putting yourself down.
NOW CUT THAT OUT!!! DO YOU HEAR ME!!! Sorry did not mean to yell...lol I know you can get to a better place with this. We are all always here for you.
Hang in there Kiddo,
I don't always put myself down. I think I was depressed again.
I have had my daughter tutor'd at a library before, if that might be the same thing, I personally haven't heard of them coming into your home and doing it. But that tutoring was meant for a temporary situation.
She wants to go to cosmetology school which would take no genius to pass, but I think she would need her GED or high school diploma to get in. I don't think they are going to accept a homeschool diploma.
I'm thinking of holding her back a year because of where she is behind. I just don't think letting her go on is a wise choice. Though it's all my fault that she'd fail.
I am going to explore my options, hopefully find something that works for us. Maybe even some online tutoring if I can find it. It wouldn't be so much on me having to just sit down and help her with her work, that's no problem. It's making the curriculum day after day I just can't keep up with. She has quite a few years left to learn, I'm sure I can smarten her up somehow, so she doesn't turn out like me. Maybe I could get her in a course or two at school, and do the rest at home.
My hat is off to anyone who home schools. I could never do that, never! Oh, I guess if I absolutely had to, and it would be an absolutely case. My kids would want to go have some fun and I would want to go with them and school would go right out the window......giggle! Seriously, it does take courage and determination to home school your children, my hat is off to all who do it, with or without fibro.