It's Starting Already!

[lieze]

For those of you with POTS and children how do you do it?

I need ideas for how I might best manage this.

Right now I'm at my mom and dads.

My situation at home was bad-my husband has not been supportive. Yells at me does not help as much as I need.

I need a lot and have four kids who need a lot.

My mom cannot take the stress of four kids.

She is limiting their fluids with the excuse of it's sugar...well all they have has is a drink of milk with their meals and that is not enough.

It is summer....they are playing outside...they are going to get dehydrated.

They are children and they are going to play and have excess energy.

It's what I live with and deal with and it's why I get exhausted.

I obviously cannot do it on my own.

Both home and here have their issues.

What can I do???

Why did I have to get sick?

If we could hire someone? Would that work?

I don't know if we could afford it? To shop cook and clean?

What are options?

It seems worst case scenario the kids would go to foster homes-I don't know where I would end up?

My head just spins-this is too much to figure out.

I need to gain more weight but already this is why divorce does not seem like an option for me.

He does help some.

I am desperate to find a way of life.

Can anyone relate to this?

[Sallysblooms]

I am SOOOO SORRY! My hubby works but also does the shopping, laundry and cooking. We have someone to do the cleaning.

I still don't understand why the kids cannot drink, not even water? Can't they get get water at the sink? That is scary. I am just so sorry.

[lieze]

I am thinking I need to force them to drink water if nothing else.

I am trying to advocate for the children and I am not fighting her on the sugar.

I do not give my kids pop unless it is a special occasion.

I will negotiate again tomorrow what are approved drinks and we will make sure we have then but that is just the start.

Today I needed meat. She let me know it was an inconvenience for her to go get it and she froze half of it.

At the same time she is calling friends and telling them she wants to do all kinds if things for them, shopping, their laundry, taking meals. Why am I such an inconvenience and she let's me know it-but wants to do for strangers?

When I call her and feel bad she tells me to push on that it is just stress. Well I pushed on all the way down to 86 pounds!!! How do I sort this out?

I end up in this situation where supposedly my husband is so bad I get here and she turns out to be also an issue.

I just don't get it. Why does life have to be this way?

I guess I can ask in the future if it's too much to ask for meat? If it is I can try to ask someone else?

I don't know-this really does seem like an impossible situation. I don't really even know what my prognosis is at this point.

I have worried so much what if something happens to me...what will happen to the children?

[misstraci]

I'm so sorry to hear what you are going through both with POTS, your husband, and now at your moms. Why won't she give them water/drinks? How old are they, if one of the older ones can manage to get a glass and share with the others. I think a good option would be to hire a high school or college kid (because honest but true, that would be good an cheap) and just like they do "babysitting", have this young person just help out a little, pay them to do your grocery shopping or help at the house for a little bit. I have two kids and it's rough but luckily I have a lot of help and so far, they don't mind helping out. We pay an outrageous amount for two kids to go to daycare. Let's say one kid costs 200/week, well for half that, say 100/ week have someone come to your home several hours a day, tidy up/laundry, do little chores, help kids with homework/snacks, etc.

[lieze]

When I was home I did most of the cooking-I tried to do simple things.

I was expected also to do laundry.

My husband does do the shopping and he works.

My mother in law came to lecture me about my goals.

She wants me to get up and stay up all day...for one.

I would do simple errands to the meat store.

But I just felt sicker and sicker...now here I am back at my moms.

We're back and forth like a yo yo.

I don't think I really recover before I go back for one thing.

And then my work load when I get back is too much.

[lieze]

That is good advice miss Traci.

My kids are in a day camp this week and I think that is helping-but my dad is doing the transportation for me.

[songcanary]

Lieze,

I think you are exactly right; not enough recovery time. I quit work for one whole year and then I felt almost normal; went back to work. Now six months later I have a relapse. So it takes time, apparently more than even I thought.

If you could hire some help maybe it would alleviate some stress for you. And also, a complete stranger is not going to have a history with you. It could be very refreshing and a good thing for a lot of reasons.

[lieze]

My kids are 12, 10, 6 and 4.

They are big enough to get their drinks she is not allowing it. She said no juice-they could only have cereal.

I am worried about my four year old he is asleep and he never goes to sleep this early.

I have a drink here beside me and if he wakes up in the night I'm going to get him to drink it if I can.

I'm afraid he is dehydrated.

He cried at lunch when she told him no juice.

They are used to drinking it all day long.

I feel really bad and as if all of this is my fault.

What can I do?

I am just a burden on everyone and my kids are paying the price.

[lieze]

This is crazy cause now I'm starting to wonder if she did this stuff with me.

Only milk is not enough.

Three drinks one with each meal?

Oh my.

it scares me that she thinks she needs to take some kind of measures to change who my children are and the reason truly is she cannot deal with the task load.

Instead of accepting that and letting some things go-she penalizes them in a scary way.

[lieze]

I'm sorry to hear you had a relapse songcanary.

I'm not sure what the answer is....whether we just have a limit? I'm not sure I can fully recover at this point.

It's just going to take time.

[sue1234]

Leize, easy for me to suggest, but...can you just tell your Mom that the kids can have x, x, and x to drink. Compromise some, as sometimes things are out of our complete control. But, like with the meat issue, just say, can you please pick this stuff up at the store, and if she gripes, just let it go in one ear and out the other. It's not important at the moment how fictionally inconvenienced she feels, so as long as she gets the food. Accept it and don't feel guilty. Some people are just like that. It sounds like your Mom is alot like my MIL, with the need to do for others so that others can see them do it. Yet, I am never on the receiving end of a decent meal, etc. You just have to see people for who they are, and realize that we may be weak in health, but others are "weak" in other areas, such as compassion and empathy. Being ill has opened my eyes to some people's true selves--and I've learned that emotionally I'm alot stronger than I realized.

[lieze]

That is along the lines of what I'm thinking too.

I have to find a way to make this work to negotiate.

And yes even though she let me know it put her out...thank God I had meat today to eat twice!!!!

I had both a little hamburger and 1/2 of a pork chop.

I did not realize these things about my mom before so it's hard for me now and it emotionally hurts me.

I try to let the words go in one ear and out the other with my husband-but people call that living in an abusive situation and bad for the children.

How to process it all?

Then I get here and a version of the same thing is going on which maybe why I chose the husband I did.

I think I'm getting a headache.

How in the world do you just accept all these realities and go on?

It seems I either get too upset or I do not react at all to situations I should and I have actually wondered if this imbalance is the source of my ANS imbalance.

Like I just do not know how to process any more literally.

Too many confusing messages.

I do like all the feedback-it is helping.

I think I should focus on my breathing so I don't go into an adrenaline surge.

I worked so hard to just relax today.

[sue1234]

Like I said, it's easy for me to say. Probably hard for even ME to do! I really wish we could just pitch in and help, through the computer! When I came down with POTS, I saw a side of my parents I had not realized before. They seem to think people are hypochondriacs if they can't "see" their illness. So, as you can guess, I got thrown into that category. So, I don't talk with them as much as I used to do my whole life. I understand how it feels to be around people that "don't get it". It's uncomfortable.

I can't imagine not helping my child if they were ill!! Even though I can't do much, I have already told my grown kids that if anything like POTS would happen to them, that they can come home and we'll figure something out. They WILL NOT be left to fend for themselves.

I hope things even out for you tomorrow. Maybe some kind of routine will settle in for everyone involved.

[stacdliw]

lieze, I take it that if you don't have a formal diagnosis that you are not on disability. It seems to me that your first step is to get a definitive diagnosis so you can get your health under control. Once you get a definitive diagnosis, you need to apply for disability. If you get approved for disability, you will receive a monthly check that will allow you to live without being so dependent upon others.

To ease the stress of childcare, perhaps you could talk to your husband about him taking the children several nights a week and/or for the weekend. Those children are his responsibility as well.

Are your parents on a limited income? The drink/food issues may be due to fiancial concerns. Adding 5 people to the food bill can add up. Is there any way you can contribute the grocery bill and specifically buy the food and drinks that you and your children need. That way your mother can not complain about you and your children are eating and or drinking.

Lastly, ask your mother her suggestions of how to handle your situation. Explain everything exactly as you have told us-- an unsupportive husband, how sick you are, how you keep losing weight, how overwhelmed you feel, how you feel that your mother is willing to help others but not you etc... Then ask her directly, how should you handle the situation that would be in the best interest of your health and your children. What do you think she will say?

[lieze]

I love your ideas Bev Ray!!!

I'm going to work on those things just as you laid it out.

The money for food drinks wasn't an issue-she is trying to tone down the children-in doing so we can't dehydrate them.

She fought them every time they went for juice and told them they could not have it.

I will get it clarified tomorrow and I agree we will make sure we have a good supply of whatever drinks I can get her to approve of for the children.

[lieze]

Okay so what I'm getting here is as things come up that seem impossible-they are really just issues that need to be resolved.

[Lovebug]

Hi Lieze,

I so hope things get better for you. Can you talk with your dad and see if he can help with your mom? Maybe he could reason with her when it comes to drinks and food. Also, you really need to gain weight...were you able to tolerate Ensure? I wish I could give you some of my weight!!!

I'm keeping you in my prayers!

[Noreen]

Lieze-

Regarding the juice issue - it is possible that your mom has their best interests at heart. Many doctors say to eliminate juice and only allow children to drink water instead. Juice has a lot of calories and sugar; it is felt that the children would be better served by eating fruit. Get water bottles for all the kids and have the 2 oldest in charge of one each of the youngest. At 12 and 10 they can certainly keep water bottles filled. The water bottles will cut down on dishes, as well, as I know you complained about the number of dishes they all go through. Having some responsibility at ages 12 and 10 is a good thing for the kids.

You may want to contact your local county regarding getting SSI while you are going through the disability process.

[Sallysblooms]

Water is the best thing to drink for sure. They need to drink. I hope you can get more help. Do you have a church family?

[lieze]

No I personally don't have a church family.

I was feeling very down in the dumps this morning but I am hanging in there.

I have no clue what direction this will go in.

My mom is being very quiet around the house today-doesn't seem like she wants to speak to me.

Maybe she just needs some space?

This is a huge disruption to her and responsibility to take on with all of us here.

[lieze]

You know the thing is-if she wants to have them drink more water...and also choose drinks with less sugar. That is not such a huge deal. Part of it is the way she goes about things that is so upsetting and stressful.

The kids run into to get a drink and she just screams at them no juice. They don't know what to do and turn around and go back outside still thirsty.

They need help-with her suggesting here have some water or even give them watered down juice or koolaid to wean them off what they are used to.

She just decides she can't deal with them.

Decides sugar is the reason and she's cutting it off.

In the process they did not get anything else to drink and we were all confused as to what was going on.

I asked my daughter and all she had since lunch and this was at 8 pm was one 4 oz glass of milk.

She is used to drinking 5 times that amount easily.

It's so hard to come here for stress reduction and then be met with more stress.

There just is no escaping it.