Mom Down N Out Kids Dont Get It

[Donna F]

HI everyone

I am very depressed today, I have been sick for yrs except until around 6mths or so, I was still able to work, etc. Now I am down and bedridden mostly. I am just wondering if anyone here is a single mom or dad and has kids who get angry or make u feel less of a parent. I think sometimes they use that to get to me. But today it hit home, I had to call in grandma, and I feel so lost, I think theyre afraid of losing me, as their dad isnt around, but how do u explain that u cant do as u use to and i do need help around here, and i can see that esp my 14f yr old, is very angry! It concerns me to no end, i feel so useless that like over the weekend i busted but and did all , extra kids staying, etc. and today i felt like i was hit by a tank. So when i ask for help, they say well u were fine yest. And i think lots of people feel that as well.

Have any of u had this, or any similar, I thought of counseling, cause there are deeper issues, but i do feel inadequate as i cant even clean house anymore, i try and make myself and basically crawl to the sofa. It is very depressing, although my kids already feel hurt and anger that they have a "deadeat" for a dad. But does anyone have anything similiar that theyve been thru or what to do to explain to people that I am not lazy i would rather work, god i am mad at the disease too i had to sell my house and everything goin on disability sure dont pay much!!

Not sure if this is exactly the topic for this forum, but hoping with all sick as well that someone had similar circ. and could tell what worked or even something to try.

Tired mom today/ sad

Donna

[Suzanne]

Hi Donna, sorry you are feeling so down. Kids sometimes can be scared and confused, so they show it as anger. They just want everything to be normal, so they feel safe. I have 3 boys and it has taken a long time for them to "get it". I have tried to explain it, but all they want is their mum to be like everyone else. I have also tried doing the housework and then collapsing so they could see what happens if they don't help. It only helped a bit. What I have done is spent as much time as I could with them. I sit on the lounge and am available to talk to whenever they are ready. I also have an open door policy when I am lying down. My youngest boy is 11 and he likes to come and lie on the bed with me and tell me his news. I have beat myself up for years about how I am letting them down by not being able to take them everywhere. I now believe that just "being there" for them is more important than "doing". I also insist that they help out in the house. They used to complain and whinge all the time, but eventually they realise that it just has to happen. It is tough when you are on your own (I have a husband who travels extensively, so feel like a single parent sometimes). It is draining, but i believe that my kids are better people due to my illness. They have more empathy and if nothing else, they are independent and can wash and iron their own clothes! Hang in there, talk to them as equals and explain how you feel and that you love them and hopefully they will support you. Be kind to yourself.

[Guest tearose]

I am not a single parent but I do want you to believe that your kids will be okay.

When my boys were very young my POTS had not yet been dx. my husband too was not around much. Now these kids are 19 and 21. They are happy and very fine young men. I think through the ups and downs of my managing my body and our family life with POTS my sons have learned to be resilient and compassionate and they know their mom is a "fighter" not a "quitter"!

Going it as a single parent is much different in ways I probably have no idea about and I do not compare to the strength you must have!!!

I do believe from deep in my heart that if you share yourself and your courage with you kids, they too will be fine!

It is okay to be sad. Please just don't be too sad for too long.

gentle wishes, tearose

[pat57]

Say, I'm sorry, I can't, to those things that are too much. I can't is an "end of discusstion" type answer- yet not harsh. Priotize your activities. Stuff is stuff, if your love your kids and they know it your almost "there". Disclipine yourself - you cannot afford to waste resourses. And do not regret doing what needs to be done. (such as laying on the couch)Go ahead and greive the loss of your health and previous strenth. You need to! For the most part a hug and saying "I wish I could............" will satisfiy a child---I think. I also suggest an approraite support group- for you. You can benifit in many ways.

It is hard- good luck

[mom4cem]

Try not to beat yourself up. You can only do what you can. You did not ask to have this go on in your body. Yes it is hard for an adult to understand this let alone a child. Especially when they rely on us so much, and it makes us feel bad to rely on them. Do they really know what is going on with you? Perhaps if they read something about it, they would understand a bit better. Plus you being out in the working world and all and now being bedridden, I'm sure they just don't understand how that could happen to someone.

Teenage years are tough. Mine have not yet reached that age, but my oldest being 11 is already starting with the attitude, the expectations etc. So mix in a mom who can't be at their beck and call they feel cheated and we feel bad. As you said you overdid it and now you are paying for it. Maybe if they understood that things like that can be done once in a while but when you feel like you are up to it. It may not be next week or next month but is not totally out of the realm of possibilities.

I wish I could give some great words of advice, but I don't have any. Please let us know how it goes.

[Donna F]

Thanks to all for your advice, I am glad to have joined this site, cause i am getting nowhere fast with family. Sad to say, like most people say unless i end up in a wheelchair, or having something worse i dont look anything noticeable besides the god awful weight gain on the florinef. But i do need a support group i think pat, not sure if anything here local, prb not, as i am in Ala. and have to go to florida to see a doc.

My boys love me no doubt, but they r afraid i think of losing me cause i use to be wonder woman and i carried all the kids and their friends everywhere and juggled managing a chain of hotels, but now inconsiderate as it is, their friends parents still manage to sit back and let me do the running or else they dont get to do anything. Although it angers me at times, and esp when they send their kids here then i get to do all the cooking and cleaning , so i feel like a doormat, parents it seems are childish as well and want me 2 have to do it. Although i have stopped a lot, but i can say i am angry about bein down. My boys had prob. before, they feel men hate them and not sure how to entrust that, i have somehow made terrible choices in men, and they see that men arent to be trusted, and i hate they feel that way.

But my boys have saved my life, really, cause i was depressed to the point i felt like taking my life a few wks ago, and I know it sounds like a cop out but, they give me strength and my dad did take his life when i was a teen, so i could never in a million yrs. do that to my kids.

Pray for me strength , as well as to feel better,lol, we all want that!!

If anyone knows of any support groups near Mobile, Al. or a way to find out let me know!

Thanks again for taking the time to respond

Donnna

[pat57]

http://www.uwswa.org/results/agencies.aspx

there is probaly more help out there then you realize. And don't let pride stop you from allowing people to help you. People WANT to help, that is why the organizations are founded. Good luck! I was "looking" for a support group and got side tracted by these helping orgs. But I bet they know of good support groups just right for you.

I was a single mom and have chronic illness, less delibating than what your faceing, but my ex tryed to ruin me financily, I made it, I saved the house we were in. He lost everything. I reached out for help,otherwise- things would not have come to this.

rushing. sorry about the sloppiness of the post!

[mom4cem]

Did you try the mvp/autonomic disorders center of alabama website? www.mvprolapse.com They have a listing of support groups, perhaps if they are not close to you they might know of one that is not listed. Though most probably have the marker of MVP.(I do) the symptoms are from dysautonomia so don't get turned off by it being a mvp group

[juliegee]

Oh Donna,

I don't have much practical advice, I just wanted to pass my love on to you. I, too, am the Mom who does it all. Not just for my child, but for anyone else's who happens to be hanging around. We are rarely without other kids to feed, house, etc. When I am well, it's great. BUT, when I'm not- it's so hard. Other kids and parents don't easily "get it. I really feel for you.

You are so important and valuable to your boys. They love and need you so much. Teens/boys have a hard time expressing that. Your boys just want you to be normal again- if it were only that easy. You sound like you are doing such a great job with them.

I have a unique situation as my 14 y/o son also suffers from an orthostatic intolerance and GI motility problems. If I feel like I'm going to pass out, he tries to give me helpful hints. He's as "sympathetic" as a teen can be. You need some of that from your boys!

Maybe try to see if you can enlist the help of a close friend or family member to try to explain to the boys your limitations. Let this person try to organize a chore schedule, etc. Then, when it's offered, accept help from those around you.

I'm keeping you in my mind and heart and will be thinking and praying for you.

Julie

[Donna F]

Hi everyone

Thanks to all of u for ur support!! I mean it I have to be honest, before i became sick i always made negative comments that we lived in a mean hateful world, with not many good people. And I am apologizing to all because even though i havent ever directed any of that to any of u guys, i think it makes me feel better to say i was wrong and people do care!! Understand that was for me all. Now as far as today well my youngest son just turned 13 in Jan and he has some disabilites, not like us, but he is legally deaf, was born early, and just isnt really as mature or nowhere near like dealing with my 14 yr old, u would assume there was years between them, although i wish sometimes the 14 yr old would be a kid and quit thinking that he had to be the man of the house.

And Julie just curious do u and your son have this or did i misunderstand, sounds like he understands although it seems as if ur plate is full too! I guess your son having prob himself has given him an understanding of this. My condition causes lots of prob however, i dont pass out my doc says he is clueless why but they just see me lying down alot, so they do need someway of understanding better. My mom is a jewel, she is a true christian woman, ifeel i run her down, i have scared her to death at times. She is there, and is trying but like most no one, not even me as this is fairly new to me, i just saw drs about this in Oct orig. although i have been sick for 6+ yrs. So lots of people has had the idea i was a hypo. , which to tell the truth never thought i would say this smiling, but i think the "crazy" diag. was better, at least i can get well with psych. drugs,lol.

Again I will keep all of u in my prayers as well, and will check into counseling of some sort, and this weekend is time to sit down and enforce chores, yeahhhh

Thanks again to all and god bless

Donna

[jhjd]

Did you try the mvp/autonomic disorders center of alabama website? www.mvprolapse.com They have a listing of support groups, perhaps if they are not close to you they might know of one that is not listed. Though most probably have the marker of MVP.(I do) the symptoms are from dysautonomia so don't get turned off by it being a mvp group

I'm sorry you're feeling bad- I feel guilty enough when I can't take my puppy for a walk- I know kids are a lot more demanding. But, from working in childcare, I'll say that, like my dog, they'll get all they need with you laying on the couch and throwing a toy (or whatever the human equivalent is) so long as they know you love them- and it will make the walks all the more special.

And the MVP/Autonomic Disorders Center in B'ham is great. Highly recommend them!

[Cheryl]

I don't have anything to add to the excellent advice above, but wanted you to know that there is at least one other POTS person in Mobile.

Just in case you don't already know, Dr Thompson in Pensacola is very good.

Take care.

[Donna F]

Cheryl

Funny u mentioned Dr Thompson, i saw him for the first time last week, he is wonderful!! So since u live in Mobile as well, if u dont mind me asking do u have any heart type symp. and whom do u see or do u see anyone local? Reason i asked i had a pacer put in in Oct when i was diag. after years of thinking i was going Psychotic!! But my doc here local is a jerk, Dr Thompson seems to think he has me on the wrong meds, and the doc here, is wanting to get a attitude about me changing, just curious if u had any luck with docs here

donna

Also every one thanks for the advice, and i will check into the sites u suggested and Birmingham is like 4 hrs from here, i have to say i have learned just by reading on here things i didnt know, and alot i still dont. But thanks to u all and i will go on the website that u guys gave me and nothing can hurt to research. Again thanks everyone

[Cheryl]

I get the usual palpitations and tachy, but for now, I don't need a pacer.

I'm still looking for someone local to use as a regular doctor. I refuse to go back to my former GP. She told me that I had used enough of the insurance company's money, and that I should just learn to live with "unexplained symptoms". Then she literally turned her back on me when I told her we had just verified that the plumbing worked, and that we should try looking into the control system. I left her office and started researching for myself. That's how I found this wonderful site, along with ndrf.org.