New Here Intro

[jdqm]

Hi my name is Joy.

i am 32 years old. i am married and have 4 children under 11 years old. i am supposed to go to my special ed childs school today to see what he has done this year. I have limited knowege of what goes on at class because he is essentially nonverbal.

today I am having trouble with my husband who wants me to stay home.

DH is convinced that is the only way we wont see the inside of an ER. he is holding over my head that he cant leave work so much. on this he is right. i have been passing out at least once a week this year. if only others wouldnt call the ambulance, but they always do.

HELP. i am crying and we just fought again while i was typing. what do you all do when someone tells you you are too "sick" (direct quote) to do things with your children or families. he has said i can no longer attend family functions unless he is there.

how do you balance POTS with family and daily life?

i am whining i know but this disorder is really messing up my life right now, and i guess i am feeling sorry for myself.

[MomtoGiuliana]

Joy

Welcome to the forum and glad you found us--although I am sorry for what you are going through that brought you here. I think you will find a lot of support here.

Many people with POTS are eventually able to become functional again--with appropriate medications and lifestyle changes. Do you have a specialist physician who is helping you?

Katherine

[ksibert676]

xxx

[labas_2u@shaw.ca]

Hi Joy and WELCOME!

You've come to the right place!

We are here for you!

Maggs

[Ernie]

Hi,

I would like to have a husband who acknowledges that I am too sick to do some stuff.

[Jacquie802]

Hi,

Welcome to the forum. I hope you find the site very helpful.

As for your husband I can see why you are upset, but honestly atleast he knows you aren't well. It's hard for people to see that we are sick, esp since some of us don't look sick, but feel sick..

Jacquie

[dizzygirl]

Hi Joy.. welcome!

sorry you have potsy.. but glad that you found us to help ya thruit and found an outlet to vent your frustrations!

about your hubby.. could maybe you try talking to him.. explain that while you often feel sick and cruddy.. that symptoms opften vary from day to day.. heck they vary from minute to minute sometime too.. my point being.. that while yes there are limitation.. that you would like to hang on to whatever you can still do and make realistic adjustments to what you have trouble with doing on your own..

i understand you hubby's "over protective mode".. but some times our men can go WAY overboard or just flat our not care.. its hard to find that balance... but talking with him might be a start...

good luck dear and no you arent whinning!! your are expressing how youfeel! you can do that here with no worries.. its a pretty caring and supportive group of folks here! so talk away!

Hugs

Linda

[jdqm]

hi all of you! i am so glad i found you all!!

Hi,

I would like to have a husband who acknowledges that I am too sick to do some stuff.

thats why i feel bad for whining, at least i know he cared, it is just so stressful when he gets so overprotective he mekes me really feel like an invalid. i know he means well, but i am not glass. i have good and bad days, and on my better days, i like to do things. he doesnt seem to get it.

[Guest tearose]

Welcome!

I think being a mom, having young-growing children, having female hormonal shifts and having POTS is a lot to deal with. Then add the hubby,the laundry, the homefront, the school and homework, the meals, maybe a team activity or two....you deserve a good pat on the back!

It is not easy but if you are willing, you will learn ways to manage your symptoms and have some better days.

Do some reading here and be gentle with yourself.

best regards, tearose

[taylortotmom]

Well, your husband might have a point. If you are passing out weekly, it is sounds like your symptoms are not under control. Also, do you drive? Very big responsibility there- driving while having uncontrolled black-outs is a big no-no. Do you have warning before you pass out? I apologize for sounding accusatory and I certainly don't mean to be- but, I have a history of syncope myself and two young children. Until I got some type of control over it, there were severe limitations on what I could do and what I was ALLOWED to do by my physician.

Now for the good news- with proper meds and management symptoms can often be controlled to the point you CAN do many of the things you want to do. It sounds like you have a lot on your plate with four children- one with special needs. I would encourage you to find a doctor knowledgeable about dysautonomia and its treatment to help you. Once your syncope is better controlled, it should be easier for your husband to understand how variable this disorder is- and unpredictable. It sounds like right now he is afraid and justifiably so.

I hope this does not come across as harsh- I'm tired as I'm writing this- but it sounds like you need more medical intervention. Good luck to you and your family.

Carmen

[Sophia3]

While you are indeed, blessed to have a husband that KNOWS you are sick, is he being over protective or demanding in you not attending functions? Or just more like "sorry, sweetie...you just need to stay home all the time."

have you any good therapist to talk with about COPING SKILLS for the chonically ill. With so many children and a house to take care of, I think it may help you to have some venting and learning of coping skills for YOU once in a while.

Please, if you do this, MAKE SURE to find a compassionate therapists who knows about quality of life limiting illnesses and most are open to learning about Dysautonomia.

Also, I have found a good therapists gives me assignments in between visits, though I am currently not seeing one now. It may be something like setting a date to accomplish a small goal for yourself, or to watch a certain movie that might relate to your situation, or to take a camera and take some photos to distract you, or to learn to LIVE in the PRESENT. Not tomorrow, or next week, but wherever you are, cope with THAT moment, or hour, or whatever.

Good luck and I hope you get support here and your faintiing under control. The more you know, the more your husband will feel better about you.

Sophia

[Guest sonotech]

I know how tough this is for you!! I also have 4 children. All I can say is that I did have to stop working back in Jan.2006. It was very hard to deal with at first, but I am finally starting to accept it.

My experience is..... once I had started staying home, I was able to do a little more for my kids. When you work, you are so exhausted by the time you get home that you don't have any energy left for your family. If your husband SUPPORTS you staying home, then it might be good for you. You would be more rested to be able to be there for your children.

I know it is hard when you don't have a supportive spouse. I think that it is hard on THEM as well because when someone close to you is ill and ther is NOTHING that THEY or ANYONE ELSE can do about it....it can be hard to handle, and sometimes comes out in the form of frustration.

Maybe you can give staying at home a "trial period" and see how you feel.

We are here for you, so vent, cry, whatever you need, but it might also be helpful to let your husband read some of the information (links, forum posts, etc) on this site so that he can get a better idea of how this illness DOES impact our lives and it ISN"T JUST YOU!!!

[BuddyLeesWife]

I'm a spouse who puts the same restrictions on my husband (at least I try). In his case, he doesn't always know when he is going to have an episode and since you stated that 'others have called the ambulance' it sounds like you might not always know either. I definately understand your husband's point as I live in panic, especially during periods when he is episodic and if we had kids involved I would be even more insistent that he stay home.

Is there someone else, a friend or relative, that can accompany you on your activities? Not only would your husband be calmed but you would be safe and probably eliminate those unnecessary ER visits. Just make sure whoever it is is knowledgeable on what could happen (better yet if they have actually witnessed an episode and know how to confort you).

[bttrflyamby1981]

Hi Joy,

Welcome!

I'm sorry you are struggling with your health. I understand how frustrating it can be to be limited as to what you can and can't do. I think that might be more of your complaint then actually your husband. (am I right?)

Just my opinion of course.

I would love for my husband to understand my limits, I am pushed to my limits everyday because the lack of support. Not that he doesn't care, but I think he ignores my symptomes as a way to deal with the fact I'm ill. I know that might not make sense, but that's what I have come up with.

Feel free to whine or complain about anything....even if you feel you shouldn't. We are all here for you!

I know it makes me feel lighter to get things off my chest, that's one of the best things about this forum.

I care about everyone here, and am greatfull to have found this forum. I hope you will feel the same way.

Amber

[corina]

hi joy,

just wanted to welcome you on ppforum! i found out that talking is the most important thing in marriage, especially when you have to deal with chronic illness (and have a husband, children, household and sometimes even a job!!!).

i tell my hubby when i am able to do something and let him know when i really can't. i told him that he has to trust me with that. i promised him NOT to overdo anymore as that is bad for all of us (bad for me but also bad for him and the kids because they then worry so much). it is very hard to keep everybody happy and live a happy familylife, but it's worth it to try the very best, so that's what we do!!!

good luck,

corina

[UnicornIsis]

If you don't already, try using a cane when you go out. I use on in the winter and the summer. It helps me walk longer and get less tired. Something that really helps me is that I eat between 5-6 small meals and snacks a day. And I have a salad almost everyday. Partly because I like salads, partly because I crave them -- my body does, and partly because at least that way I know I'm getting veggies in. Its also soemthing easy for me to make and it doesn't require cooking and heat both of which I have a lot of trouble with.

So since I eat so frequently, I take snakes with me and while I'm out if I need a pick-me up or are starting to feel down or if I know I need to be at highest attention for something we'll stop very soon before we get there and I'll get a large fry with lots of salt. The salt and fry works as a double help, 1 is food and 2 is salt to get my bp up a little.

And I sit most of the time with my legs up, either stretched out or indian style. This really helps, especially in the car. I also wear sunglasses in the car even if its not really bright, they still help my eyes. I also got a very large brim hat and wear it any time I'm outside, even waling back and forth to the car. This really helps.

Maybe if you adapt your going out time some and show him that you can take it sometimes and don't push yourself on the days that you can't he'll start being a bit more understading hopefully.

Also something I know from my parents dealing with my brother, you son should have and IEP. If he's at a special school as I think you said then I don't know if he still has one there. But either way it should be part of the IEP or it should be part of what his teachers do that they send home reports to you about what's going on with him. There shouldn't be no contact or no idea of what's going on. If the teacher won't agree, then go to the principle or whoever is over his/her head if he/she won't agree either. Keep going until it happens.

I hope this helps.

UnicornIsis

[AJVDK]

Joy,

I just wanted to say "Welcome", and I am glad you are here!