# How do you deal with the struggles of health issues?



## Nifty (Jun 10, 2013)

How do you manage when you have no the time for each other? What if one or both partners suffer from fatigue? How do handle resent for situations that are beyond ones control? The fighting over decisions concerning the children's health or school.

What if you feel you have lost yourself in hours of homework or fighting with the school for IEPs to be followed?


Are there any threads here of those with children that have health needs? Spouses having serious chronic health issues?


I feel that my own needs in the marriage have been unmet for so long that anger and disgust quickly appear. I wonder if I am meeting my spouses needs...


I am sure some will mention, rely on family. That is not an option, they are in the area and tied up with babysitting for other family. I find it so frustrating but accept it. The most I can get is bus pick up two days a week.

Lacking money and going out and paying babysitters is not really and option. Do not know of anyone else to swap the kids with for date night.

I feel so angry that I amin this predicament and I feel like I am powerless. Sometimes I think of divorce but I think it would devastate the kids and would I be any happier? I am not interested in another relationship ever and I would be doing it all alone and now with a small amount of money. I think we have maybe four hours a week together and I often feel the time together is a chore for my spouse.


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## MSP (Feb 9, 2012)

It is hard, that's for sure. It can help to have understanding friends (male for him, female for her) that you can spend time with, talk to, and who can babysit from time to time. I also recommend Googling minimalist lifestyle blogs and following some of the tips there. Modern life is hectic and stressful, but it is possible to scale back and be happier.

A few blogs off the top of my head: 

Man vs. Debt
The Great Jollyhoombah
Zen Habits
Miss Minimalist


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## Nifty (Jun 10, 2013)

If anything there will be les time now since I am looking for full time work. I worked part time from home but we need more money and if I could get some benefits that would be nice. 

I have so much resent for the years I felt like I really could have leaned on my spouse but he was not there for me and worse, in my opinion, he treated me poorly.

He feels I hold on to stuff and I need to move forward. I feel like when times are at their worst I can't depend on him. I feel like now as soon as I get slightly upset with him a flood gate of paste hurts tidal in.

Plus with my kiddos and hubby's health issues I have no idea how life is going to be in the future. There will be more problems along the way. I need to get my youngest in to the cardiologist for some testing for low blood pressure (common with his genetic disorder and I am seeing signs with him). My youngest alone has three really serious health issues. My hubby needs to get tested for the more fatal variant of this genetic disorder since the group leader in our area (she is a nurse as well) feels strongly that he has it. If he has it than the kids have it. I want this blood test done ASAP. I get angry that he is not aggressive with his healthcare.


There is just so much and I really do not get emotional support from our families, severe dysfunctions abound. I mean I was literally stuck at home for years since my youngest was too sick to go out much. I always was canceling plans, it was very frustrating.


I used to feel like you can control your outcomes in life and I feel like I am powerless in life. Bad stuff keeps happening.


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## Anon Pink (Jan 17, 2013)

You can't control what happens. Bad stuff happens, sometimes it happens a lot. most times, it is absolutely no ones's fault.

You have been zeroed in and totally focused on meeting the immediate and urgent needs of your kids. You have lost yourself in parenting, in trying to keep them healthy and alive. You have, without thought for yourself or your marriage, jumped to patterns in which you must stay one step ahead in order to attempt to control what is uncontrollable. Your marriage has suffered because you and your husband cope very differently with the curve balls life throws at you.

You want to suit up and be prepared to catch it, respond to it and knock it out of the park. If you remain ever vigilant, you have a measure of control.

Your husband doesn't work this way and has willingly taken a back seat. This has left you all alone in the front. You are not only driving this bus, you are all alone in navigating this bus. This causes a sh!t ton of resentment. 

Your husband's passivity is seen and felt by you as lack of caring, lack of sharing, lack of emotional investment in the outcome. Your husband, meanwhile, is thanking his lucky stars his wife is so on top of things because he simply doesn't have what it takes to both keep a job AND deal with navigating through all these health crises.

Stop. Just step back and try very hard to imagine what this looks like in his shoes. he has no idea how to support you other then get his ass to work everyday and keep that paycheck coming. This is something he knows he needs to do and he can do. Anything other than this is something that simply isn't on his radar, he is totally unaware there are other things he could do to be supportive. Getting his blood work done is a separate issue here so don't lump it in with his lack of support.

Your H sounds like mine, passive. I hate his passivity and what it communicates to me. So I feel your pain sister!

You have to identify exactly what you need from him and HE MUST RESPOND. Once he responds, YOU MUST ACKNOWLEDGE positively. You are teaching him to meet your extraordinary needs. And yes, they are extraordinary because of all the crap you are dealing with. So Don't feel like your being too needy.

You need to find some things you can do for yourself, to recharge yourself, every day. You need to reorganize your priorities, what can you ignore, what MUST you deal with?

You need help, you can't refuse help. Support groups for parents of medically fragile children can save your mental health and even your marriage. Check with the hospital to find one. ATTEND WITH YOUR HUSBAND!!!!!!! You aren't totally comfortable leaving you kids with family, do it anyway! Unless you think your kids are going to be beaten, they will be okay for 2-3 hours!

I'm no stranger to special needs kids and I have seen how difficult it is to get help. I have also seen how easy it is to get so wrapped up in meeting their needs you no longer have any idea how to meet your own. "Put your mask on first, then attend to your child's mask." You're getting ready to pass out still trying to get your child's mask on. You must get yours on now!


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## Nifty (Jun 10, 2013)

Hi Anon,

Thanks for responding! No, he is very active and awesome with the dishes, dinners, etc however we fight constantly over care decisions, whether one son needs OT or not (hubby feels he is lazy). 

The worst of the worst is over- the severe constant illnesses, requiring specialists and even hospitalization at one point. However they have left me drained, frustrated and resentful. I am still not out of the woods. I have additional specialist appointments to take my kiddos every once in a while to, no longer the frequent blood tests (hubby did go for those) and frequent 1/2 day events at various MD offices. I do wish he would be more involved with school issues and he actually did show up to the last school meeting for one of my children (there were problems and I was prepared for a fight).

We had serious problems in the marriage. I begged for marriage counseling- then mentioned maybe divorce eventually. He then did finally agree to go. Only to vent about me every single time and then quit proclaiming he is done, he will live with me and but he has zero love for me. He was mean, unapproachable, negative. I meanwhile, kept going and was dealing with so much other stuff. After a year of this behavior from him, while I was in the hospital with my son (who they thought has cancer), my hubby hugged me and said ILY but then added I only said it because of the situation. Then he left. I was so very very pissed. I was completely 100% dependent on him b/c my youngest was so sick. I could not leave- with what health insurance? How could I work out of the house? I was 100% forced to depend on him and take his mean sh!t. 

And this was years ago and the resentment is still there and some days I hate him. And he still is not meeting me needs. I would like dates and it never happens. Then he yells out why don't you schedule one and I say well, it is obvious to me you are not interested since you never ask me. Why would I force you to do something. Seriously, 10 years and I have had 4 dates- mostly because of my intense badgering on the issue.

We also disagree vehemently on money. If I spend a dollar and he disagrees- I know about it. He has wanted me to return stuff to get back a dollar or two. I tell him no. I am not wasting my time return something little to save almost nothing. Plus I bought it because I think we needed it. Then there is that at well. I was completely dependent on him financially for years. I worked part time from home but it was very little income (he feels I has lots of income). Trust me, I had little. I suffered two layoffs. After one he said something snarky that he was the only person earning money (just after my layoff!). And I reminded him I was getting unemployment.


This stuff is years old- why can't I let it go. In my heart I think he is a total jerk and he is trying to be nicer now but I have so much hate for the man. He is like- get over it! I am of the mindset of how? You have not made enough amends. Even now, if I "upset" him too much he feels justified and going off on me. I am not ok with that. 

Even if I can get full time work- why divorce- then I have the task of raising the kids alone. There are times he has really helped out. He has stated home if I was up all night due to one of them. I mean he does help out around the house. As for being a husband to me- psst... I think it would be a very long time for him to make things up for me. He feels he "love me again" and I should now get over it all. I feel that during the years I really needed emotional support the most he was not there for me and worst treated me poorly. Even now, I do not feel he really is there for me.


I should add I gained a lot of weight and he really hated that. He claims now not to care but I do not believe him. He was very upset with me for letting myself go, I think that is where some of his justified anger comes from. 

Despite his now being significantly nicer and more understanding. I feel this huge urge to 1. emotionally hurt him 2. just walk away. However, this would not be beneficial to the kids and myself. Plus he is now trying to met me needs, however I am dissatisfied with his efforts. 

Was I perfect- far from it. I was whinny, angry, fly of the handle- always TIRED. At times extremely depressed. I had health issues of my own (which he did not believe). So I was not the best wife. I had untreated heart trouble that the doctors first dismissed and he kept saying how "crazy" I was and just get some anti-depressants because I was "crazy" and not normal. No, jerk, I really did have heart trouble- once I finally got some meds I was fine. Health took a nose dive again and and again I was "crazy"- no, I was not. This time my fatigue and "laziness" was due to another health issue NOT being depression. Anytime I needed him, he was a jerk.


It was so long ago. I can't let it go. I have wished him dead and told him such (how mean could I be?). Perhaps the issue is mine to resolve.

I have attended the group meetings locally for one health issue. I am in contact with the head of the group for another health issue and the third health issue I am in a online group. I feel like no one really has that much on their plate compared to me and then I give myself a reality check- there are many, many kids way, way sicker than my youngest. With life and death issues. So I don't have it so bad. 

I am just so angry. Angry at life but more at my husband who I feel has not fulfilled his role and I feel it is too late for him to make amends. The word @sshole screams loudly in my mind. But perhaps I am this big jerk that needs to stop the anger and hate towards my hubby (I rarely show it, I bottle it in) and move forward.


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## Nifty (Jun 10, 2013)

Just silly memories keep coming up, like recently I remembered how we were fighting years ago and I said I was so embarrassed to live in this apartment and that angered him and he said that he was embarrassed to have my father's ashes in the living room- people ask what that box is. My father had been dead for just a few months. The pain of that was unbearable. He did later apologize but to aim to hurt someone so badly. I took those ashes and put them in my babies room. I really wanted to end it with him at that time but during that time I was having the undiagnosed heart issue and was completely homebound. I could barely drive, walk up stairs, stay awake for an entire day. I was really trapped. Or my hubby's version I was an annoying mentally ill ***** and my health issues were in my head.

It was so many years ago but when I remembered it I was so very upset again. he apologized and said he wanted to win the argument and it was wrong. Who acts this way? How can I stick with a man that is such a jerk? No matter how much better he is now, I feel that so much of what he has done in the past is unforgivable.


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## Anon Pink (Jan 17, 2013)

The past is forgivable! You have to do that work, not him. It takes time to let go of past hurts, but you have to make up your mind to actually do it.

When you talk about your comment, being embarrassed about living in an apartment, then he threw your fathers ashes as a counter point, you focused on how bad his actions hurt you but you failed to focus on how bad your actions hurt him. Do you realize what your comment did to him? You essentially told him he was a failure as a provider, as a husband and as a man.

Stop focusing on only your feelings and understand that you also play a role in bringing out the worst, or the best, in your husband. Not that you are responsible, just that you can make it easy for him to behave in positive ways toward you, thus strengthening the bridge he is trying to build. Or you can cross your arms and glare at him as he tries to make things better.

Get your resentment under control by recognizing your role in all of this.


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## Nifty (Jun 10, 2013)

We had agreed to buy a house, the apartment was temporary. The apartment was next to a toll booth (smelled a lot of diesel) and was infested with bugs. He changed his mind and decided he was content there. I was very upset. I was desperate to leave the apartment- it was not meant to be long term, that is what we had agreed to.


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## Anon Pink (Jan 17, 2013)

So it's okay for you to say something hurtful out of frustration and anger, but not him?


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