Last night my daughter woke up about 12:30 am throwing up.I could not wake up no matter how hard I tried.I asked my husband to help her.She went back to bed about an hour ago.Fortunately it's not the stomach flu just a reaction to some medication she takes.But I feel so bad I could not help her.

Often I wake up and I can't get awake.I feel like I am awake but I'm not.I can't move.I try so hard to wake up.I dream while I am awake it seems.

I know my bloodpressure is low again.But my depression is much worse now.

I just want to go to bed and sleep but I can't .I have my daughter to take care of.She depends on my for everything.Not to mention I have my huskies that need to go out to use the bathroom.

And all I want to do is sleep.

I am so depressed over this.I don't know how to stop the cycle.

My husband works all the time so it is hard for him to be here but he would help if he could.

SO tired.Need support.
Sheila

Sheila,

I am so sorry to hear that your daughter was sick. I know how difficult it can be dealing with this horrible disorder we have and having children to take care of to. I have a 3 year old daughter that wants mommy all the time. Especially if she is sick. I feel depressed alot to. I was so active and energetic before all this stuff started happening to me.

I am sorry you are going through a difficult time right now and just know that I will pray for you and your family. I know your daughter thinks you are a good mother. As mothers we all need a little validation from time to time... I know I do.


Remember there is always support here.

Take Care,
Erica

Try not to be so hard on yourself. I have a 3 year old also and am always beating myself up for the things I cannot do. It gets me very depressed as well. I rarely get up during the night either, my husband usually does it. In the mornings it takes me a good 20+ minutes once I'm awake to be able to get out of bed w/o significant HR/BP issues. I have a good friend who reminds me most people don't get out of bed at all when they don't feel good....and we can do it everyday....no matter how long it takes us to actually get up.

I nearly passed out, literally, playing two games of hopskotch today, that's pathetic, but I did it. The small victories count.

Big hugs to you!

Thanks for the support.I still feel so bad.Everyday is the same.Never any change.We are both bored.She feels bad I feel bad.Sometimes it is just too much.

children even at that age they sense your torubles she is just too young to now how to help. that's why she want's you more when ur sick.she's worried about you. think in that terms and it may help. my 6yo has had a hard time dealing with it too. but she always wants to take care of me.
she is so cute, every night at dinner she looks over at me and says "momma did you salt ur food?"
how cute is that.
she has grown up with me having this, so as u can see the compassion from them comes as they get older. and believe it or not i think she understands it better than any other person in my life.
small victories are really small miracles to me.

Sheila, I am sorry to hear that you are having so much trouble, and your child too. When my youngest was sick on his stomach one night, and could not make it to the bathroom to vomit, he threw up on the carpet around his bed. I got up, although not very well, and put sheets around his bed to try to keep the smell and mess down. The next time he told me he was sick on his stomach, I didn't listen, because I thought he was just playacting. The next morning, there were sheets all around his bed. Poor little thing couldn't get help from his mom, so he took care of himself. My husband was seldom at home and I was working 3 jobs and was dead tired most of the time, but I felt so guilty about that. It still hurts me to think about it. We do the best we can. Sometimes its good, and sometimes it is not. Now he is the father of two, and the best little(big) daddy you ever saw. His wife works 12 hrs a day, so he has to pick the two munchkins up, feed them, bathe them, and put them to bed. It gave him something, even though at the time, I felt so guilty. Let it go, thank the Creator that it was no worse than it was and the wisdom your child now has for his children. That sounds cold now, but when they become parents, the grief and guilt leave, and the gratitude takes over. I love my sons, and this one is a really good father, and he had some rough times in his childhood.
Your buddy,
Susie

Oh, I almost forgot. Books are a great thing for bored 3 year olds. There are a lot of cloth books out there, and kids feel close to us when we read to them. My grandmunchkin got her favorite book(she knew all the animals) and she turned around with her little bottom in my direction and backed up until she was sitting on the floor in front of me and opened her little book and began to read to ME. Great memory.
Susie

If it weren't for books and a dollhouse, I don't know what I would do on my bad days.

My daughter is 16 and disabled.Developmentally delayed amongst other things.
She watches Tom and Jerry a lot right now and has an assitant that comes in 5 days a week to help her.
But Carrie,my daughter,has some endocroine problems going on and I am dealing with her dr.'s and my own at the same time.
Right now with Carrie we are about to do some more indepth testing on her adrenal glands.
She has already had half of her pituitary gland removed and she is not better.
Her moods are extreme at times due to her hormone levels being all over the place.
She has an anger problem and high anxiety but her testotorone is very high right now so know wonder.
When my husband is home he helps but he is a firemen and gone every 48 hours for 24 hours and then works a alot on his days off to support our family.
But you know no matter how tired I am when it does come to getting help for Carrie I am usually right on top of things.it's just the other night I think knowing my husband could get up with her I just let go and handed her over to him.
It still makes me feel bad.
I have to do a lot for Carrie.All her primary care is done by me.
But there are so many days I just don't want to bathe her,get her dressed or anything.But I do.She has meds. she takes 4 times a day that I have to keep on a set schdule.(sorry I can't spell).
I love my daughter so much and would do anything and everything to get her better.It has been 16 long years of surgeries, hospitals,dr.'s,mri's,ct scans,bloodwork.She has known nothing but suffering.And her I am whining and complaining about getting out of bed to help her when she needs me.I get scared that one day I will lose my strength to keep this up.But we try to make the best of each day.I just wish my mood didn't affect her mood some much.SHe is like a radar to my emotions and askes me what's wrong if I don't seem happy and upbest.Sometimes she gets mad.And she has been violent with me on 2 occssaions.Very violent.This was before the brain tumor was removed.

I'm sorry everyone.I just ramble on.But this is my life everyday.I am tired and so depressed.I hurt and feel sick all the time.

Today my husband is home.It helps just to know he is near by.I don't feel stable anymore.

I know we all are suffering in our own way and I am really sorry for bringing you all down but it just helps to write it down and let others know how I feel.My diary fills up really quickly these days.Writing helps.

HUGS to each and everyone of you.You all inspire me with your strength and encourage me to keep going on.I know one day this dark cloud will leave me for a while and I hope I can be of some comfort to you all.In the meantime thank you for being here for me.

Sheila

Wow Sheila, you are a really great Mom, I would never be able to do what you do. It's bad enough to be sick but, to also have a child that is also ill, is just hard for me to immagine. You should be very, very proud of yourself and never get down on yourself because you can't do everything. You are a wonderful mother and your daughter is very blessed to have you.

I am feeling a bit better today.Struggle though.Thanks to everyone again for the support.

Hi Shiela, just wondering what your condition is and the symptoms.. are symptoms progessively worsening?

Today I have been feeling ok.I have days that I have some energy .Had to take Carrie for some blood work and took her to wal mart to get a new movie.I went outside and did about 30 minutes of yard work.Last time I did this I ended up like I was earlier this week.My heart has been flipping and flopping a bit more.And all over body pain has gotten worse.I am in that dazw we get in.Brain fog.Afraid of tom.

When I have days like this where I have to run around and do things I will end up in bad shape for days sometimes a week.

1 common problem I have is having trouble with confusing.I think that blood doesn't circulate to my brain very well leaving me dizzy,lightheaded,and very out of sorts.Depression gets bad.I have a lot of trouble thinking.My mental state is real bad at time.Is this a real problem for some of you?

Thanks for asking Beth.I hope you are doing well.

I just wish I could get in to see the dr. sooner.I have so many questions.

HUGS,
Sheila

sheilia, boy do I understand what you are going through . My daughter is now 23 yrs old, and my son is 20. But raising them was hard, I was totally bed ridden to, I feel guilty alot too, but we can't help the fact that we can't help it.my son was two when I collapsed and was never able to get up besides a day here and there. My heart goes out to you

I'm gonna give a weird insight here--- When I was a child my mother was bedridden for a couple of years and near death. I was about 8 and 9 during this. She had fallen very ill with CMV. Before that she had had a lot of trouble with asthma (this was before some of the better inhalers were out on the market).

Did it effect me? Of course it did. I wasn't so much angry at her though as I was just very concerned and worried about her. I was an only child and mom & me lived with her father (who I always called "dad" because my dad left when I was born). I'd have to say I felt very responsible for taking care of her. But on the other hand the whole thing taught me to be a more understanding of bizarre illness, which of course now I'M the one with the bizarre illness.

But I'd have to say--- the one thing that I wish had been different with mom was this: she went through a period of time when she was very negative and even though she didn't necessarily say to me she thought she'd die, she exuded that feeling. She stayed day after day in a dark room with the windows covered up, with baby and toddler pictures on me on her night stand. She got sicker and more depressed.

When I started gettin like that with the dysautonomia I finally made the conscious decision not to be that way. Seriously, it helps so much just to go outside and sit in the sun for a bit. Open up those damn windows or something. And look ahead to "when" I get better NOT "if" I get better. Had she been horribly ill but let me help her hobble out onto the porch, we could have sat outside for ten mins together. Instead she let herself become cut off in a catacombs world. That's probably what hurt the most.