long term family suffering needs to heal

I think my family would be better off without me and my illness. I want to suffer alone because my pain hurts them. They try to help, but the circle is broken. My husband thinks i am controlling him when i am on AB and ask him not to put an ingredient in the food that makes me naseuous. He is feeding himself and the kids and really tries to please me. But whenever i tell him what i really need he takes it as criticism, lack of gratitude and controlling. We did family counceling, but im too far down to get back to driving or add to schedule therapy or anything. My tone of voice is angry because it is hard for me to talk in a house of people who arent listening. I try to be nice and pray every night that i will be sweeter to my family, focus on loving them. I do not shower much at all. I pray in the morning for strength, and then sleep all day until the whole family comes home from school and work. Then i am bombarded with them and their needs and i also ask my husband this or that and he is immediately mad.
I want hm to just tell me that h doesnt want to be honest with me about how miserable. Make him because of illness. I dont want to be with me either. If we face the truth, maybe we can move forward together in acceptance. I want to know what his secret methods of handling stress are or not. I think he needs antidepressants because he is a tyrant. He thinks if I didn't do this or that then he would be nice. But he doesn't reach out to love me in a wa that heals. He is focused on survival and is missing th spiritual component. We aren't healing together. We are getting sicker.
We have 3 boys and married. Was very a active career an mother. Built our house milled our own wood. I got diagnosed in 2009. The year prior i had a successful. Surgery for breast cancer. Total reconstruction and ovaries removed. That was age 37-8. Now i am 43 and have no had my body for some time. 3 rounds of (n home iv's, given only after two years plus, on tons of different oral ab's, herbal, detox, etc. I have a LLdr in NC and was so glad when i finally got the IV. I herxed for three years and got to a plateau in year 4. In 2013, my Dr. Told me that due to the bart, bab, scar tissu, and symptoms. Had years prior, i was not responding as well as his other pati. His outlook for me is chronic mantenanc. Since then, i have declined. I sleep more, do less, and become hopeless during times that are not as bad as the first 3 years. My prognosis is chronic. This is a struggle, but i find a way to live. I am overwhelmed by the house and failure.
Beibg my own nurse is not working there must be a way to get the team to rally, but as long as. Am miserable, no one leads in a positive direction. I know my husband and kids are trying, but we fight more than ever and are losing our reason to live. We still have sex, but i do it to be closer to him, as my sexual function is gone. I am afrsid he wants a womn who can climax anytime, full of life, really nice, useful around the house. Instead he jas me. Although we do enjoy each othet very much and like to be together un general, The joy evaporates more quickly as my reserve dwindles over the years that are meltng as i spend my time trying manage pain and fatigue, symptoms, treatment, and parenthood.we cannot afford help. We spent all our savings on the IV'S.

Post Edited (carolinalyme) : 5/19/2014 3:37:02 AM (GMT-6)

Hi Carolina,

I'm sorry you are going through all of this...

I'm almost 35 and even suggested to my husband that it would maybe be better if we each went our own way. We don't have children, and I don't want him to miss out on children because of me. I was never in a good enough shape to have children, too tired and too many symptoms. He says I'm crazy.
He is still standing by me, but it is difficult. I sometimes just want to be alone, and left alone. These infections take so much energy that nothing seems to be left. I am not always the nicest person when Bartonella is flaring.

On several occasions I thought it would be better to continue on my own, but I'm glad I never took such a decission while I'm at my lowest point. I personally think it is not adviceable to take such a decision when you are at your lowest, unless there is a matter of abuse or so, that is something entirely different.

I read you have Bartonella. This infection can really mess with your mind: anger attacks, crying, anxiety, depression. It can get really tough. I sometimes can't controll myself, what comes in my mind needs to be said, I can't hold back. Husband says he doesn't listen to me when I'm like that, he knows it's the disease speaking. And then I get mad, because he is not listening, although he is just trying not to get angry because of my temper. I'm not all the time like that, thank God for that... My 'natural' character is calm and relaxed. very hard to see myself as another person.

It is very normal to loose your libido. I'm there too, it's very frustrating, I do my best, but it's just not there. I guess that it isn't a priority when your body is in fighting mode trying to beat these infections.

I was attracted by the title of your thread 'long term family suffering needs to heal'. Maybe another healed member can help you with practical advice on that. I'm still not at the point of getting better, but we will certainly need some healing once this is over. Even my husband is feeling that, if you knew my husband, you would know that that means something. He even suggested we should get remarried once this is over. I wrote this before in another thread: hubby is as romantic as a floortile, so him saying this means that he knows we need something to get over this once things are better.

You wrote that you had IV abx treatment, can I ask what treatment you are on now? Maintenance treatment is what exactly?
Cause you are still having all of these symptoms, you can get better than this. Like Achievinggrace suggested: you could go the herbal route?

MarieLS

MamaV -

What a long road you've been on. Through all of the challenges, and there are countless challenges every day, you are fortunate not to be alone - you do have a family (as difficult as that can feel sometimes - some people have no one) and you have many people here who know exactly what you are feeling and thinking. That can be empowering.

Sometimes it's nice to have something all to yourself - but it also might help your husband/family to understand a little better if they read some of the discussions here on the forum...?

-p

THANK YOU EVERYONE. I will be sharing this with my husband.

My doctor studies under horowitz and all of the big guys. Goes to conferences. I have some permanent dammage documented by nerve studies. I require pain medication and antidepressants.
Had depression before.
I grew up on a farm in Chatham county.
I have had well over 200 attached ticks plus seed tick attacks.
The timing and depth of my infection is not determined, even by my doctor.
At his last conference, he brought back grave conclusions on cystic formations in scar tissue (last infection was at site of breast cancer surgery).
He said the TOP doctors are still learning more and that maintenance treatment is my best option. However, he does not think that blasting me with more IV's will change the CYST FORMATIONS. I dont know what to believe because there is no imaging.
I have been trying to learn to live as things are, because my last appointment gave me little hope of full recovery.
I have done much research on doctors and treatments.
This is by far the best east coast doctor.
I was much sicker before this. Much much much much sicker.
But, somehow, I haven't been able to recover spiritually.
about church, we have fellowship. The issue there is travel.
that is why I turned to the internet.

Doctor Does a heavy line of HERBAL.
I have done much herbal. Along with AB.

Suggestions appreciated.
with so many supplements that I have purchased and tried,
the ones that seem best are the Bab1, Bb1, Bar1 liquid in small brown glass bottles.

I just read your post about scar tissue...and it's got me worried (I should say more worried as I'm already worried)

I just had a breast reduction 4 weeks ago...and so far things are healing nicely...But I never even thought that the Lyme would attack that area...I just thought I might suffer more because of my body's immune system being suppressed - but not in that area particularly.

So do you have a lot of pain in the area of your breast cancer surgery?

Carolinalyme, I'm so sorry you have such a weight on your shoulders. It's so hard to deal with family problems when you're dealing with bad health. I was very ill before we had kids, so it would've been harder on my hubby, but now he has me and my daughter and we had some problems before I was diagnosed. We still do on occasion and it's hard. Those who are healthy just can't understand the depths of this illness and it's tough for them when they can't help more.

I agree that it might be worthwhile for you to look into some alternative care, whether it be a home protocol or a naturopathic doctor.

Would your husband join this forum to get some support for what he's going through with you? It might help him understand it better and know he's not alone. It seems he still cares about you. Maybe schedule a movie night each week where the 2 of you could be alone for a couple of hours. It would be restful for both of you.

Don't let the illness take you away from your family. You can get better and be yourself again. Keep on fighting it. (((((HUGS)))))

I failed to say something that may need to be heard here - I've had those same feelings of my family being better off without me. Please read on though:

My kids, who I raised while sick and sometimes bed ridden and who are now adults themselves, have told me over and over again that they didn't miss out on having Mom and that's what was most important to them - not that I didn't do 'everything' with them, but that I was there and (emotionally) active in their lives. I supported them in their lives and decisions. My kids did not know me as a healthy person until they were in their late 20's and I in my late 40's - just a little over 2 years ago!!

My current husband - who married me when I was the sickest I had ever been back in 2000 and has seen me through all my treatments and even my treatment failure back in 2007 - doesn't wish for a thing to be changed - other than of course he wishes I hadn't felt so bad. He doesn't feel like he missed out on anything either with me having been so sick for so long. He tells me he fell in love with the person, not the body.

So please, please don't assume your family or children would be better off without you, that you are a burden or any other thing that might be said here. Chances are pretty good that they will take you any way they can get you in their lives! Seriously - you are Mom or his wife (or husband), not the body that is ill. There is sooo much more to us and to life.

Thank you all. Really getting me on the positive track.