Motherhood and illness

[DSM3KIDZ]

I am really going through a tough time down in the POT HOLE. I just got sick in Aug 2004. My pattern has been sick for 3 months , normal for two weeks. Well during those long sick times I have a real hard time being a mom. I love my kids with all my heart but feel they are suffering from me not being happy. My nausea gets so debilitating that just standing up or changing a diaper makes me want to puke! It's like a 3 month flu. I don't have the energy to be the mom I was.

My friends don't understand so they turned away. My in-laws are workaholics so they don't help. The only help we get is from my mother who lives about 50 minutes away. I know that's not far but it's alot for her to drive back and forth few times a week. I am so blessed for her , she is my angel.

I am at a cross roads, My husband is a firefighter and works 24hr. shifts ( has to live in the city)so I usually could use the help on those days. We could move to kenosha were my mom lives to make this easier on her and so she's closer for the kids. I don't know what to do. If we move my husband loses 10yr. senority and I know he will resent me.... but if we don't I'm going to exhaust the only help I get.

I love my house and neighborhood what if this illness gets better? What if it gets worse? Have any of you had to make a decision like this?

If we move I'm also scared my children will not view me as a parent because they already listen to my mother better. I try real hard to be consistant kids 6, 3 & 1 like to push my buttons when I'm sick because I'm not as quick to punish...... I punish them with love....

I'm not looking for you to make a decision for me just any imput would be good. Like I said before my friends turned their backs so I'm alone and can't call anyone for their opinion. I am so thankful for all of you. I don't know where I'd be without reading the couragous stories of my new internet pals.

One more question why are there mostly girls on this site? Where are all the POTS men? Is that uncommon?

Goodnight

Dayna

[Guest tearose]

Hi Dayna, I am sorry you are dealing with this. I am not as in my groove as I'd like to be but I will do my best to share from my experience what worked and just give you some of my thoughts.

I realized I could not change how my children would eventually perceive me so I had better learn to accept that they would have memories and images of a "mommy who didn't always feel well". I had to teach my two young boys that I was not dying but just having problems with my "energy". I would save all my energy for the moments I could sit with them and read or play a game. Toys would pile up, dishes would pile up and laundry too.

It seemed never to end. But it DOES change! Until it did, I took shortcuts. I brought prepared food in, used paper goods for dishes and taught my children to help sort the laundry...my mother lived 3 hours away so she would come infrequently but be sure to bring homecooking and stock my refrig and freezer. I remember laying on the sofa for weeks letting the kids watch "educational tv" and videos and only opening my eyes to lovingly tell them to behave and get along with each other. I dragged my body up only to dispense food, wash them and their clothes and gave them limited but my best quality attention I could. As I look back, they learned from me that someone can be really, really sick and then can get better. They also learned to be compassionate and work together. Now, 14 years later, my two sons have a super relationship with each other and have an enormous respect for me as they now understand what it took to mother them and be so ill.

As for what to do when you MUST have an extra set of hands...I did bring in a mothers' helper and once when I had the flu on top of pots, I had to hire a nurse for two weeks. I also had help from a local religious group where I had volunteered for awhile before I became ill. ( I also found a little pre school for them to keep them busy during the school year and a day camp morning program for the summer. Your local town program may offer these.)

I would be concerned for you to move and have possible employment problems for your husband. Also, your mom may one day be too tired to help or have other needs to attend to and then you are in a new environment with no familiar faces, doctors, schools...

I too felt some friends drifting away because they did not want to believe I was still sick after so long! Look into other support resources locally.

I just realized I have a morning planned with a friend and I'm still in my jammies...I'll get back to this later Dayna...you hang in there!

Your kids are going to reflect what you project to them! Let them feel your love and your hope that one day...you'll be outside playing with them in the yard!

mother to mother, with support, tearose

[Ernie]

Would it be a possibility that your mother moved closer to you or that she slept overnight part of the time?

Ernie

[Guest tearose]

Hi Dayna, I'm back just to add that since you mentioned your loss of friends a few times...try to address your need for a new bouquet of friends!

See if the local hospital has a self-help chronic illness group or something like that. Some people find that speaking with other people with similar challenges helpful during really rough spots. And you always have us!

I can reassure you that if you are giving your children love they will NEVER forget that you are their mother! No one will replace you, they will love you forever...

best regards, tearose

[Ling]

Tearose your advice sounds wonderful. I am just repling to wish you well and hope all works out for you. I am not a mom yet and can only dream of how hard it is for you. Just fight it with all you have. It is the only way I know how to get through this life. I agree with Tearose I dont think moving will be such a good idea for your family as a whole.

[MomtoGiuliana]

I feel for you and what you are facing. Yes, the future is unknown. But, since you were just diagnosed not even a year ago, it is definitely very early in the illness, and very hard to know where you will be--even at this time next year. For that reason, my "advice" would be not to make any major changes--like moving. Particularly if that puts your husband's income in jeopardy. My mom moved in with us for months. I don't know if that is a possibility for you and your mom. Since the summer is coming, maybe you would be able to hire a young teenager as a part-time "mother's helper".

No matter what, you will always be mommy. Children are incredibly resilient--especially when loved, as I know your children are. I think having a parent challenged with health problems, can only make a child grow up to be more compassionate and mature, personally.

Hopefully you are going to find a treatment regime that works for you, and/or POTS will get better over time, like it does for most people (apparently). I know that when one is down in that hole it is hard to believe at times.

As far as loss of friends--I can only say--I have also been there. It is sad to learn that only a few of the people you spend time with are your true friends. I hope you can find some kind of support group locally.

POTS seems to be primarily a female condition. But, there are a few men on this site with it.

Katherine

[corina]

Dayna,

this is something I?m struggling with very much. I can?t take my children to the beach anymore, play tennis or football with them or go skating. In fact I can?t take them to their sports or their friends because I haven?t been driving for 1,5 years now. I sooooo much wanted to have children and I sooo like having them. But boy did or lives change in the last 5 years. At first they kept on aksing me if I was going to play with them or do something nice which I hated because I had to say no all the time. After that they didn?t even ask me anymore because they new I couldn?t which I hated even more. Nowadays they are 5 years older and are a great help for me. We count the things that we can do together like watching a movie or )sometimes' play cards. I cherish every moment with them because they grow so fast. I tell them I love them and we all accept that we can?t do the things we were used to do. But deep inside it very much hurts me. I also notice that I have a hard time raising them, it costs a lot of energy, but it?s sooooo worth it. I?m glad they?re 10 and 14 because I wouldn?t have known how to raise little ones.

Like Ernie, maybe your mom can stay overnight once a week or maybe you can get some help from volunteers.

Wishing you all the best,

Corina

[DawnA]

Dayna, you may find a treatment that works well for you. It takes time. You may be able to function better in the future. Don't give up hope! As far as the friendship thing goes, I am having the same problem so I can relate. It is so hard...someday we will make good friends. That is my hope. Take care, DawnA

[DSM3KIDZ]

Thank you sooo much to all of you for your replies. It's true when your in the hole it's hard to get a perspective. That's where you gals come in. I'm going to give it some more time before I make a decision. I met with my neurologist yesterday and she's from Mayo and sound knowledgable so I'll give her a chance. I'm not on any meds yet so maybe they will help when we do treatment.

There is going to be a POTS group getting together in my area May 10th. That's exciting.

I do need an extra hand but need to do some research because I only have my mom. She works and goes up north with her husband all summer on the weekends and they both need that for themselves and their marriage. I have to see what someone charges per hour. I'll have to make room in the budget.

I'm extremely tired today to I just wanted to thank you all for the replies. I'll check back soon!

Have a great day

Dayna

[Eli6596]

HI

Boy, can I relate. Having POTS makes being a mom so much harder for me too. My children are 9 and 3. You have already received so much good advice.

My 3 year old has been wearing me out due to discipline issues. I just bought "1,2,3 magic", a book about discipline, and it has already helped me. I have more energy if I am not yelling at him to stop hitting his sister, etc.

You are Sooooo lucky to have a POTS support group where you are. A neurologist trained at Mayo really should be knowledgable about POTS because of Dr. Low's influence. Medicines could completely turn around your life. If I was not taking my medicine regimen, I would be bed bound. With medicine, I have gone to bedbound to working 9 to 5 plus taking care of 2 kids. I still have lots of symptoms so I have cut back on at least half of my pre-illness work/family duties. Figuring out what can slide is important. My husband stays at home which helps a lot too. I know I really am lucky, especially when I read about many other situations on this website.

Karyn

[ariella]

Hi Dayna

I can definitely feel with you. I'm the mother of 5 children, ranging in age from 3 to 13. My POTS seems to be getting progressively worse over the years. I've been in and out of a wheelchair, often i'll go for a walk aound the block and have to call one of my children to come "rescue" me. I throw up often, am very dizzy, have shockwave chills, and it feels like the blood just isn't getting to the right side of my body. very painful. But one thing that I've learned with time is how to manage the symptoms better, even if they're objectively worse. So I'm functioning somewhat better even though I feel very very miserable. I've learned that I have to force myself to do some kind of activity because it builds tolerance. Forcing myself to take walks helps a lot. Especially when I can't walk, I force it along a little. I also started to get a feel for what triggers make it worse and try to avoid them.

One of the biggest gifts a very close friend gave me was to teach me not to judge myself by whatever expectations for myself i'm not fulfilling. The kids just need to know you love them. Sure my kids complain that we don't do things they'd like to do. So here again is my friend telling me that all children complain, and parents can't take it personally, and for me it's absolutely dangerous to take it personally. But really a person can only give real love if they can make a space to love themselves, for me if I don't keep my personal headspace good, I can get really cranky with my kids and let my exhaustion take over. It's so hard. The mental exhaustion is the worst. I try to avoid negative people. I've begged my friends to laugh at me, isn't this ridiculously funny how I can't walk? (nobody ever thinks it's funny) but it keeps everyone including myself from feeling sorry for me.

Hopefully..and likely..your symptoms will improve, but I think as your kids grow it's going to be really important that they see your husband being supportive. It's going to be so important in how they're going to view helping you out when you need it.

Sending you lots of love,

Ariella

[Roselover]

I found this article that I thought might be helpful. It's written by someone who has MS, but the ideas could be adapted to Dysautonomia I think. It's called "Explaining your illness to your kids". It's on a website that is called Rest Ministries, christian based, but the artilce doesn't have anything religious in it so I hope no one minds me sharing it.

Here's the web address:

article

~Roselover

[morgan617]

Dayna, I didn't really think this would apply to me as my kids are grown, but I guess it does in a way.

I have 2 boys. ONe is 28 and one is 23. My 28 year old has never really understood my being ill, because I don't "look" sick enough to be like this. It is a very big struggle for him, however I believe some of it is fear that I really am sicker than he wants to believe. MY 23 year old, bless his heart has been sick with arthrits since 11, inflammatory bowel disease, hyperparathyroidism, anxiety, you name it. He TOTALLY understands. But I almost wish he didn't, because that would mean he was well!

We were never able to do vacations and things and I never had the energy to play a lot with them, but guess what, they both survived it and they both love me and neither one sees that there was any lack in their lives, even my older one. They say I was always there when I was really needed.

The reason I am writing this is to encourage you, as mine are grown, I have never felt well, and neither has suffered any mental damage due to it. I used to spend a lot more time with my grandkids, but even they understand gramma can't do all the things she wants to and they accommedate me. Man I used to win spelling bees, how annoying. Just a sidebar.

We have had a lot of financial difficulties due to my illness and in fact we are getting our house appraised this morning trying to refinance. We had to move from a house we had just totally remodeled into a house my age with no remodeling ever, and trade in our great car for a much cheaper one and have gone into a great deal of credit card debt. If this guy doesn't appraise our house well today we are pretty much s**ewed. And I know it's due to my health issues.

We have met our out of pocket catastrophic every year for the past 4 years. That's 4500 out of pocket per year towards medical bills alone. So trust me, I totally understand the financial part. My husband works 60 hours a week, so I never see him, and I think the least I could do is have dinner waiting and that happens about 50% of the time, let alone a sparkly clean house for him. He gets to do that too.

We did not make any of these decisions until there was absolutely no other alternative. I am so sorry, I will be so glad when these steroids are out of my body!

My whole point I guess is, I do understand and I've been sick a really long time and your kids do adjust and they are okay, and it does work out, sometimes with lots of finessing, but it does. So don't worry, your kids aren't going to resent you, they are going to love you no matter what you feel like or are up to. argh, someone stop me.......morgan

[DSM3KIDZ]

Thank you everyone for all your responses I would be lost without this forum on friends. Everyone has given me alot to think about and I truley feel my kids are going to love me regardless and that's ALL I want.

Evjoy the day

Dayna

[ethansmom]

I just wanted to add that I also understand where you are coming from. I have a 2 year old and am pregnant and due very soon. I am nervous about what it will take to have two children and what kind of life I will be able to give them. I've managed okay with my son, but I do take naps with him every day and as he gets older it's easier for him to understand my limits. I worry about having two and what dynamic that will bring to my well being...but all the hugs and smiles and cute things are so worth it. Being a mom gives me a reason to keep plugging along when I just want to quit! And as was mentioned previously, you are still very early in your illness. There is a very high chance that you will reach a more functional level in the future- you can only hope and look that direction When I first got sick there was no way I could've taken care of anyone else- I couldn't even get out of bed by myself. But that only lasted a short time before I began to improve, slowly, and I have been fairly steady (with a few bad days here and there) for the past 3 years. A lot of us have found that this is a typical pattern..and I wish the best for you too! Meanwhile, treasure the little things that you are able to bring to your family- love, compassion, and strength will be qualities that you can instill in your children no matter what your physical limitations are. I think it's great that your mother can help out- I also have a mom who lives about 2 hours away but she comes and stays overnight about once per week or every other week to help me catch up on laundry, chores, etc...when I am having it rough. Even good times for me can be exhausting, and it's nice to have someone here so I can just rest and recooperate.

I have also hired people on and off to come and play with Ethan while I am home to give him outside time (like, in the summer when it's too hot for me, and right now when I am 8 months pregnant it would be great to have help!!). Moving is NOT something I would recommend until you are feeling a little stronger. We moved twice this year and I haven't been able to bounce back from that very well- all the stress and physical work has worn me down- we moved to our current home on March 1st and my mo mis here this weekend helping me try to finish unpacking!! My house has looked like tornado alley for 2 months...plus it sounds like your hubby really likes his job.

Best of luck to you and your family!!!!!