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» LymeNet Flash » Questions and Discussion » General Support » dying marriage! (Page 1)

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Author Topic: dying marriage!
Gisele
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I was told 3 days ago my husband hasn't loved me for 18 years. He only stayed out of duty. He then found a email he wrote on my behalf 3 or so years ago and realized how much he did love me.

I am just shell shocked that he has very little feeling for me. 4 days ago I thought he would be here forever. I knew he couldn't deal with how bad the disease was, but i should have less than 1 year left.

My world is upside down. I had no idea. I feel like everything I think must be so wrong to be so off. We've been together since we were 19 & 20. We were even disowned to be together.

This is not the worst thing in our lives that ever happened, at this point of my recovery. He has had no affairs.

Also my parents and sister don't even believe I'm ill & are useless.

I am all alone, except for 2 special needs kids luckily 19 & 24, but still need attention & managing.

Any words of encouragement? How or why to continue the IV therapy?

I feel he is the biggest loser ever who never faced anything hard he hid & I took care of it. After 5.5 years of the disease you treat me like crap no warning nothing. I am truly lost & numb. [confused]

..............................................

Breaking up your post for easier reading for many here -

[ 01-30-2015, 02:34 AM: Message edited by: Robin123 ]

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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poppy
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So very sorry. One of the worst things about this disease is what you have experienced. The people we were counting on for support, family and friends, turn out to be not very supportive. And we are left alone. It is always shocking to find this out.

Please do continue with treatment until one day you find you still want to live and get better from lyme disease. We are here for you and understand this pain.

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randibear
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I am so sorry you are going through this. I've been through a lot myself.

be strong. you can do this.

--------------------
do not look back when the only course is forward

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LabRat
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It will get better, just a bump in the road. You won't believe how much better life will become! Been there and done that, several times.
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Gisele
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I just am in so much pain. I will love my husband to my dying days. He still cares. But to throw at me I haven't loved you truly & it has been only a year & I'm almost done.

This disease is hell he has been through the worst part dragging me to mayo 2x & countless Dr's & hospitals.

How can he throw a switch & nothing about us matters, like it never happened.

It is just everything I have & own was bought with him in mind. I said I don't want anything & I will sleep in my 13 year old car in the garage. Because seeing even my clothes is so painful for how deep our relationship was.

We have brokered some peace for the moment,but how long? His parents love us & help me a lot when they're here. What happens when its done. They are from the middle east. Do I loose any love from his family.

My only grace is he promised to take care of me for the rest of my life, he will never divorce me. This is not a very unusual idea. I have no way to care for myself I have bad arthritis on top of this.

I just said just don't talk about the future. I will keep the Jeannie in the bottle for now. He thinks it is so easy. People will not respect him the same way for leaving a very ill wife.

He is hanging his life on work contacts he entertains & some friends he has. He only has less than 10 years left to work.

I said once you retire this life will never be the same it will fade away. People will retire with there families & your expense account will be gone.


I feel bad because we had no support. He assumed it all. He even took things away from my son who was getting the groceries.

We have no consistent family here. If we do split I may never see them again they will all go home. How do I live with the fact I may have no family left than my children.

I still can't drive. I have been bed bound trying to beat this thing for 5.5 years. I have no skills. We have a very nice life. I'm just so lost.

I asked him today if I was ever attractive. He acted like i was crazy, but he said yes. But when someone throws you away & you had no idea. I am so so lost & confused.

Please tell all new lyme patients to seek out services they are there. I just called the social worker where I have my IV done. There is help, but 5.5 years later stings. That much more could have been done. This might have saved my marriage.

I am so grateful for your site. I just was so sick I was unable to use your site. This still gives me migraines, but right now you are the only people who truly understand. My birthday is only a few days. What a horror it is!

................................................

Breaking up the post for easier reading for many here -

[ 01-30-2015, 02:39 AM: Message edited by: Robin123 ]

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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-
It's hard for me to read but I did bits here and there and as trite as it sounds, I can really feel that you are in deep pain.

I can't possibly say anything that will make this all better and can't even write well enough to make this flow like it should. Still, from my life experiences some things that were hard to learn, put into practice but ultimately saved me:

First, you say " But when someone throws you away . . ." end quote. He is not throwing you away. Nor what you both once had. He is - finally - coming around to being honest in how he has changed.

And, you say that today you asked him "if you were ever attractive."

Please. Do not go there. It does not matter. It does not matter.

I'm sure you were and are attractive. But that is NOT what this about. Trust me. It's just not.

And you give away your own personal power and owning your own beauty when you ask such a question, like a bargaining chip in some ways. Own your beauty. It's yours. And it matters not what others may see or not see in you.


1. HONESTY matter the most. Even when painful or seemingly against us. But, like the weather, it is what it is. We just may not want to acknowledge it or deal with it unless - until - we absolutely have to do so.

We can't really want others to live a dishonest life if they have experienced changes within themselves.

To hide those changes is dishonest and some just get to a point where they can't do it anymore.

But, IMO, too many don't talk about important issues / feelings all along the way. If he has kept all that secret from you, he either may not have the tools (counseling would be helpful) . . .

or may not want to. And we can't make someone share / talk.

And we can't always know, predict even promise what our feelings will be forever and ever.

on the practical / promise point . . . the promise to look after one another, well, he has promised to offer financial / practical support as best I can read this.

That is honor in way, even if not the full on honor you so desire.

2. Be wise. Don't go off and sleep in your car.

I know you don't want to see reminders of your life together but be smart about this. Those are just things.

Clean house if you like but keep what items are of practical service to you. And get counseling so that you can break the emotional connection between things and memories. Rearrange, redecorate as best one can do on a dime . . . etc.

3. You are no less a valuable and loveable person just because your love is not receprecated. (sp?)

4. He really just may not have the internal capacity to deal with all that life with you entails, health & finance wise.

I don't want to actually say it's not his fault, but really, some people just can't be there for the day in and day out of a chronic illness. Their own body / brain may just not have the ability. And it really may be no one's fault.

4. B. Or -- This may have zero to do with chronic illness. Really. It may be the smoke screen, though, that hid issues for years.

5. People change. And this goes back to: Living honestly. As hard as it can be to let go, we can't really live an honest life if we want to hold onto someone who is no longer able to be in the dance. (I cannot phrase this right at all!)

Our love has to be able to know when to let go, too.

6. We may be alone but we can still harbor immense well of light & wonder within ourselves. And there are so many avenues to explore . . . .

I have to stop for now. Most important, though:

please seek out a counselor, one who is LL would be best so that they really understand the complexities here.

Go first for yourself . . . and then ask about a path for couples' counseling. You may learn some fabulous survival skills and also communication skills that none of us learn early on that can help in so many ways.

If he does not want to go or says it won't change things, I would propose that he owes you this much:

Go to at least help you / both of you process this change in the most healthful ways possible. This really matters. Big time.

Practically, legally . . . it's also important to sit down NOW with a legal advisor of some kind to work out matters. You might start with a MEDIATOR who will help advise on banking matters, etc.

This can still be done even if things are in LIMBO. It is a protective action.

Nourish & Nurture
-

[ 01-29-2015, 07:21 PM: Message edited by: Keebler ]

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Keebler
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You may need to find a whole different kind of music to listen to during your days and, especially, during the evenings.

When I was still able to listen to the radio, and my life turned upside down, I could not bear to listen to popular songs on the radio.

What helped was exploring instrumental music of various genres. That opened me up to a whole new world in various ways, too.

You may need to rotate the bed, get new sheets, different colors, etc. Make your room your own.

AIR OUT THE PLACE.

When you find emotions kidnapping you, get practical. Repeat. Rinse. Repeat.

When you find emotions kidnapping you, get practical. Don't discount your emotions. Give them a minute and take a breath and change focus.

When you find emotions kidnapping you, get practical. And hold on through the ride. You will have some sunny spots ahead.
-

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Keebler
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Backing up to try to read more there are three more statements that can cause you so much more turmoil:

"My only grace is he promised to take care of me for the rest of my life, he will never divorce me."

A. As mentioned, his promise to provide support shows good honor.

However, to not divorce is further extending the lie. For so many reasons, that may not be the best way at all. He's now forcing you to live in a lie. This can cause you great damage on many levels.


"I will keep the Jeannie in the bottle for now."

If this about not telling anyone and hiding the truth, it's not going to be very helpful to you at all. Yet there are many ways for the two of you (preferably with a counselor) to work out how to move on from here.

Give yourself time to absorb it before making any broad statements to others, of course. But don't live in the shadows.


"People will not respect him the same way for leaving a very ill wife."

YOUR LEAD matters greatly. If the two of you present a united front on how you are going to handle your transition - in mutual respect, and ask that they do the same.

Mentioned above, this may not have anything to do with illness but even if so, he has still offered to support you so that's to his credit and your relief.

Well, if others think less of him (or you) that would be a shame, really, for both of you if that were to be the case.

This is between the two of you and, hopefully, you can both respect each other as individuals during the process.

Surely, others will (or certainly should) know it's

a. none of their business

b. beyond their comprehension as these are matters that your own private business

c. this is about living in truth. Even if the past has not been all we might have thought, taking on truth as we move forward can give us new life.

as long as there is civility. Please seek out advice of a good family therapist as there are so many ways you may not even know about in how to approach all the huddles ahead . . . in a way that may be refreshing, actually.

I know you may be spinning from what I say it may not be clear. Please trust me on this. Don't let anyone make either of you out the be the bad one in this. How you each work together on this transition . . . and how you keep your sense of self is so important.

I hope this will make sense some day. It may take time, though. It's a process.

Feeling a surprise "hit" seemingly out of nowhere naturally has us sort of wanting to hit back and blame. Do acknowledge emotions. Be careful though in keeping them separated from blame.

We come out stronger, though when we can shift that to wanting to understand and then wishing the best for each other.

I guarantee there will be some good chapters again.
-

[ 01-29-2015, 09:00 PM: Message edited by: Keebler ]

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Keebler
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-
Sorry to go on and on here. It took me so long to learn some of this and there is one more consideration that comes to mind.

About physical connections. I apologize for such a personal note . . . yet this is something that would appear in many women's health articles, too. It's very tender issue and the light of day on such a topic can help.

Not sure if he has moved out but that would be proper thing. At least, assuming you are no longer sharing a bedroom. And, it seems that it would be proper thing for him to get out of your space now . . .

although some couples have amicably split actual houses into two separate spaces due to practical necessity . . . it is not ideal and could be very unhealthy given the circumstances when you need a fresh space.

of course, you still have talking to do but that needs to be within very clear boundaries and definitions.

I don't need or want details but do want to warn you. You are in a particularly vulnerable position now. And he likely, too.

Do not share physical intimacy. It can be so confusing right now and so much can be misread into that. Keep the boundaries very, very clear.

Humor can help here, too. If you start feeling a signal coming your way, in a light but firm tone of voice

(I hear an Irish accent here for fun) . . . "oh, but, . . . boy . . . that would be behavior only for two who love each other!" and just get up and get busy with some task.

If you sense yourself getting weak, remember the same from your imaginary Fairy Godmother: "Oh, Darlin' girl . . . but that would be misleading to your tender heart, now, Deary."

Keep your heart protected. Keep your integrity. Stay strong.

I hope you have a good friend you could ask to come and stay for a few days to help you through this time.
-

[ 01-29-2015, 09:16 PM: Message edited by: Keebler ]

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Keebler
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Triage Plan.

Adrenal support is vital now due to the shock you've had.

You say that your "birthday is only a few days."

and we have that annual duo delight of love or torture in two weeks: Valentine's Day.

How can we help you to plan something new & different that can celebrate - or quietly honor - you as the good, intelligent woman you are so that you have something of interest / fun / exploration to experience - somehow?

Your kids? Friends?
-

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Robin123
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Hi - thanks for sharing with us here what's going on. I broke up your posts so that people here can read them easier, so if you could do that, you'll get more responses sooner.

Yes, this is shocking to go through. It's hard to go from thinking you're a couple to finding out you might not be -

I would venture to say that honest communication has not been happening for awhile. I think successful marriages build that in, so that both know where they stand with one another and they work things through.

And any chronic illness would tax a marriage, which means a lot more effort put into communicating, because it's not as easy as in a normal life where people are able to function as they want to.

While this is very hard for you to take in right now, one possible gift you might get out of this situation is to ask people to be more real with you along the way and deal with differences and work them out. Everyone is different and those differences need to be known about, respected and worked through so that people can still enjoy being with one another.

When we do ask others to be real with us, I don't mean that anyone should make you feel bad about yourself. It's their perceptions, not yours. Your job is to internally support yourself for being the person you are, as Keebler is saying. Each of us is our own integral self and no one should be able to rob us of our self esteem and self beauty.

You say it's your birthday in a few days. You did not know your husband early on. I suggest you take this opportunity to return to the girl you once were and check in with her. I bet your child self enjoyed your birthdays.

I suggest making an alliance with your young self and see if you can reclaim some of your original sense of celebration of yourself and your life. If that works for you - it's just a suggestion.

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Keebler
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Gisele,

You've been on my mind throughout the day. I hope that you are taking care of yourself and are finding your footing, so to speak. Remember to focus on the practical for now, one foot in front of the other . . . two steps . . . time to rest sort of thing as I hear you must do.

A sunny say predicted for Chicago skies tomorrow, and clear. That bodes well, although snow the next so be sure to focus on the practical being sure you have in stock what you need, etc.

Your local library may be a resource for all kinds of new books to divert your attention. They may have a delivery system for you. Here, someone will bring books / DVDs / CDs right to me.

Picture books, National Geographic magazine, etc. are all great diversions. No matter what kind of interests you may have, my bet is there are some great photo books just waiting for you to explore.

What these have done for me (and travel DVDs, cuisine, too) is open up my window to see a bit of the world out there. I'm hoping you can find something to give you some fresh air. Take care.
-

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Keebler
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Gisele,

So, Today is Your Birthday (or close) . . .

remember that the wonder of you will always be with you

what your physical body deals with / carries is not who you are

nor are the yardsticks, accomplishments that we may have thought in our youth a true measure of a person. The yardsticks, picture of what an accomplishment IS grows as we grow

we are very tender as human yet also very strong

when human tenderness magnifies our insecurities, try to turn the mirror around so that we can see our innate goodness and strengths

promise yourself for this birthday that you will seek out wonder & enjoyment each day ahead, somehow, even if just to acknowledge beauty in one element of nature or humankind, art, music . . . .

since we all obviously have to muddle through the rough patches, we should not forget that we also deserve to enjoy the good, fun, funny, sublime, ridiculous whenever it presents itself and it's good for us to go looking, too. But often the goodness starts right there inside of us.

Take care, do something brand new to you
-

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ralphi
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Gisele, is he willing to go to marriage counseling? Do you all have a faith group (church, whatever) you belong to? I'm hoping you both can find some outside support.

Emotions are not "love"; actions are. I've noticed that if a person starts with the actions, the emotions often follow. Perhaps you both have tried this already, though. It is good of him to offer to stay, even if out of "duty."

I've never been married, but have had a lot of relationships end (romantic and otherwise) because of this disease. It weeds out the faint of heart, for sure.

Please take care of yourself during this time. You are WORTH adoring, whether you feel like it right now or not. It's not your fault that this has happened to you.

Prayers and hugs.

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Gisele
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Thank you for all the great replies it is so amazing. I have only one friend with a very busy life. All of you have given me reason to takekeep fighting this disease.Thank you for breaking up my message.

I am in no shape of caring for my self. I can hardly read. I cannot drive, cook, even caring for myself is difficult. The only place I go is the doctors & rarely anywhere else. Anywhere else is too stimulating & brings on horrible migraines. The migraines is what dictates my life no music, little sun, little sound, little computer time, little physical activitiy, cognitive functions, or stress.

I have been living in our guest room for the past 5 years. Last time we had had sex was about a year ago. I read last night on Facebook last year. I've gained little ground in my Lyme recovery this past year. Mostly in the cognitive area and tolerating a bit more motion. I used to scream anytime the car wasn't going straight.

For me this illness is very hard prior to getting neurolyme+, we had rekindled our marriage. Our kids needs had lessened & we have a cabin not far away. It became our love shack. I came to the point in my life where there were lots & lots of pain & hurt feelings from my workaholic husband. I loved him very much & decided to remember the man I married.

It took time and I took all the pain & sorrow. Put it in a book on a bookshief in my mind. I've been in & out of therapy for several decades. This was my own idea. I hadn't been to therapy for several years. I was just sick & tired, of being sick & tired. My children's special needs were less all encompassing.

Why waste more time stuck in the past. I became very very clear & I moved on. This helped my marriage tremendously and it flurished for a couple years. It was fabulous! Then I got sick very sick. I went undiagnosed for 2 years. He spent every night looking on the computer for answers.

My clarity and extremely strong resolve didn't work well to diagnosis my Lyme plus all its other gifts.
When I got diagnosed thank you to lymenet I knew the treatment was bad. I did oral for 1 1/2 years before the last almost 2 1/2 years IV.

The main thing is he has never given me really any emotional support. He hates hospitals, my IV, injections. I never have told him a lot even when I coded in the hospital. I love him too much too cause him that much pain. I thought, he had promised to be there in the end. I wasn't always thrilled, but I held on to our dreams. Moving back to Chicago. We spent years looking at condos.

My only way I'm dealing with the bargain I struck is the hope he will come back, my best friend and even my therapist think I have a good chance. Stop the crying, grilling,screaming, & making him feel bad. If anyone can give me any ideas of how to not be devastated, hurt, pissed and be down right mad as hell; after all this. Please help. Everywhere l look he is there. Hanging up my clothes makes me cry, because everything I have was bought with on my mind.

He doesn't love me anymore. It is so hard. He read old love letters 32 years old & nothing. He is out a lot clients and friends. He came home at 3:30 am last Thursday and Saturday. He is 54 not 34. It makes it hard not too text & be upset. He has always said when asked it is his fault.

I need to let things lie, but can't. It makes me so mad & angry leading to poor self control. I gave my life up for our boys. I lost almost all my friends since one of us had to be the adult. I have to find a way too deal or there will never be a chance for any future. I've eaten almost all my xanax for the month.

He has like 5+ vacations booked with clients. He is like a drug addict to me. Any offers a wonderful trip for free he can't say no. Before you feel sorry for him, he is out 3-5x/ week and asked me in the hospital if he could go out of town. We used to take 2 trips a plus a weeks+ at Xmas. In 5.5 years he took one son 1 night to the Wisconsin Dell's.

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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LisaK
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Gisele,
don't worry about us feeling too sorry for your husband., I don't think most pepole reading your posts would think this.

I feel so bad for you. I have been through very similar times with my husband. there have been times wehre he wouldn't talk to me for months, and he would blame me for everything.

I have been sik for long, but not really sick as I was this past 1.5 years. I(I was undiagnosed for ever) . I also have neuro lyme and yes, this is the hardest thing for my family to deal with.

people get so impatient! and my husband has come out and told me many times how hard this is for him this past year "dealing" with me. I live in fear that he will leave me too, even thought he has told me he wouldn't. who ever knows the truth?

when you said you have "only less than one year left" what do you mean?


this stuff is hard on everyone. you need to not blame yourself at all. it is what it is.

Go ahead and cry.. it is good to cry. let it all out. so what if somehting reminds you of him. let it out. get it out. one day it will get easier. less and less each week. you CAN do it.

I have had a few huge heartaches from men. times I couldn't get up off the floor or go outside into the world. I thought I would die. but life goes on. and like someone said, it may get better for you in other ways too.

Did you mean he is leaving? or staying in the house with you? will he not help you at all any more? if he is saying that, maybe he is just totally burned out?

who helps you when he goes on all these trips!???

sounds like he has been trying to escape for years but finally had enough. that is not your fault. he is weak. he is weaker than you are!

you are strong. you came here and asked for help. deep down you know you can do this without him, but you are scared to be alone and afraid you cannot get help you need. I have experienced these thoughts a lot lately. what if , what if....

on losing frinds, if your friends left you becasue you decided to grow up, it means find new friends! I know that is easy to say, as I am in the same boat, but just rest assured good people await you somewhere. that will come , but focus on the most important things now.

I would say- crying is good - do it as much as you can to get this all out of you. you have had a big punch in the stomach and you are justified in your feelings of swarming uncertainty and fear. this is all natural. just tell yourself it is typical and you WILL get past it!

when You start to have moments of clarity in between cries, make a list. list all things you NEED to do without him now. check it many times. re-write it if you want as many times as it takes. feel free to wrtie your anger down too.

go throgh the list and put them in order of greatest concern to you. whatever that is. it is all perssonal and there are no right or wrong.

in the mean time , try and open up to all those relatives that like you, even his parents, etc. tell them how you feel frantic that you can't do this without help. find out what they think. don't just wonder forever. you may be pleasantly surprised. it does happen to people. I have seen it- divorce doesn't always mean divorce from his enitre family/friends.

don't worry about how long any of this takes. everyone is different. right now it looks like a drastic storm covering your life. one day it wil llesson and lesson and as time goes the strom will be just some dark clouds, and then one day they will be just a light shower now and then and one day you will think of him and this time and realize you haven't thought of him for a time. this is how it goes.

and try not to think about what ifs. likewhat if he change shis mind? or what if he really does leave forever? try to only focus on yourself right now. I know it's hard, but you need yourself. you need to be focussed on you, not him.

he may also be sick with this disease and that could be affecting him too. but , you need to still focuss on you now. get well, then fix other things.

that's all I can write right now. I have terrible migraine. I will be thinking of you today. I hope you can read what I wrote and it makes some sense. I really feel your pain. relationships can be the worst .

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Gisele
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One big thing I did not add. Our plan is simple he is home more, he calls once a day, and keeps his promises. I will stop crying, asking tons of questions, no sex and making his life miserable. To get him to agree when he said no to 1 year and then 6 months. I put no time limit. I wish we did counciling years ago, but I was too sick. Would it still help?

I then stupidly enough asked if he prefer if I not say I love him or text it. Quickly found out it was like asking me not to love one of kids. He agreed since it tearing me apart I could say I love you.

The biggest is I could not sleep. I kept thinking he could leave tomorrow ,next week, next month. He was taking me for bloodwork Saturday. I WILL STAY UNTIL YOU ARE BETTER. I couldn't believe my ears.

I wish it was several days as ago. Before the nightmare kept going. It doesn't mean it will be easy or work. Any thing I can do to get me to stop asking questions or making him feel bad? I need alot help with self control. I also wrecked about half my first floor before he told me because how angry I am. My therapist was shocked I didn't do more.

As the layers peel away, as I'm slowly getting better I was unaware of the mild neglect, level of rejection, lack of dignity and little respect. It was making me crazy. It is OK to have an answer, but it made me believe all my thoughts & feelings were wrong. Now I know they're not that wrong. But learning to accept his belief for our marriage is still like a kick in the gut. The nightmare I wakeup to everyday.

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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The reason I made our plan was too give me some security & I focus on me & he gets to focus on him. I just have to get over the fact at the moment he is gone & done, perhaps forever. This is my giant hurdle. I reached out to my parents they don't care. Thanks so much for this site and posts.

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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Gisele,

Certainly, this is very intricate. I wish I had the magic words or perfect recipe.

I would suggest that you find a different counselor. One that is a certified marriage & family therapist but also with a Ph.D. in psychology.

If at all possible, one who is fully lyme literate as well.

There are so many dynamics involved in the history here and absolutely loaded "bargains" that have been made and it seems that a fresh look at this could be some much needed fresh air.

Trying to help with a metaphor here, an example there for you takes me back through so many years and so much heartache.

Expectations, assumptions . . . can't say enough about "reframing" - and reassessing - but also can't think of how to really address that so will move on.

One of the things your therapist said is very puzzling and, really, not something a well trained therapist would even suggest. While they may be great with empathy, their projection regarding the outcome seems skewed. Therapists do not project the chances of outcome like that.

Several counselors were just not good at all at their job. When I finally found one that was just so on target, I began to understand how to make changes in myself.

It was a major learning experience and taught me how to find my way to my real / better self and how to navigate the dynamics of various kinds of relationships.

I'm not sure of the lyme support group for the Chicago area but I hope you can connect and find someone who is well educated and also LL,

as you mention " I've eaten almost all my xanax for the month" that is of concern because that can really boomerang and cause deep depression. It nearly killed me.

The kinds of anxiety that go with lyme can be very rough. ADRENAL SUPPORT, FISH OIL, MAGNESIUM worked so much better for me than any drug.

Of course, don't just stop but - please - do not exceed the recommend dose. It can hurt you and incapacitate you in ways that you might not even be able to imagine.

Xanax is also very ototoxic. It can cause tinnitus & hyperacusis and impair balance, reading, and so many other things.

The anger response of property damage is of course also a red flag. You ask for help with better self control. Didn't sound like the therapist had much of a plan but increased Xanax can make that so much worse. Be careful. Hit a pillow instead of things that will break.

The therapist seemed to not get into an anger management plan or communication skills?

With practice in those "communication skills" you can give a good and proper voice to your anger. With a good therapist, you can sort out feelings from facts, etc.

AND a LL therapist would have suggested that you ask your LLMD about BARTONELLA. That seems to greatly affect anger & mood. Be sure to mention this to your LLMD because if bartonella is in the mix, and if it can be treated, so much of this could be a major storm lifted and could better then move forward.

Take care.
-

[ 02-02-2015, 04:10 PM: Message edited by: Keebler ]

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Robin123
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I echo what Keebler is saying here, all of it. Re getting a good counselor - yes, it can help, even now, very much. It will help you sort out your feelings and what you want to do, what you can do, options, etc.

When you say, only one friend, start thinking of people on Lymenet as Lymenet friends, now - we will help you get through this - I think a lot of people here have been through this scenario before.

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Keebler
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Start here, don't let the date of this book fool you. This is just as important and up to date today as the day it was written. Basic to all human relationships and communication, key to awareness & respect for self & others:


www.amazon.com/Im-OK--Youre-OK-Thomas-Harris/dp/0060724277/ref=sr_1_1?s=books&ie=UTF8&qid=1422911998&sr=1-1&keywords=i%27m+okay+you%27re+okay

I'M OKAY, YOU'RE OKAY – 1969

by MD Thomas A. Harris - At Amazon for $12.

Your local library will have this, too. As you say you are homebound, you likely qualify for some kind of delivery system assistance.


www.amazon.com/Im-OK--Youre-OK-Thomas-Harris/dp/0060724277/ref=sr_1_1?s=books&ie=UTF8&qid=1422911998&sr=1-1&keywords=i%27m+okay+you%27re+okay#customerReviews

Reader reviews are also very helpful
-

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Keebler
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I do not want this to get lost. You have about another hour in your time zone before your LLMDs office closes, likely.

If you are not currently treating for BARTONELLA:

Think about if you've been properly assessed for BARTONELLA. And you may need to be reassessed now.

The anger outrage and physical property damage (even if your own property) . . . having "wrecked about half my first floor" really could be a sign that Bartonella MIGHT be at least partly connected.

MOVE ENERGY

you might also explore ways to "move energy" within yourself. Being homebound, in a condo, in winter . . . well, there are some constraints.

If at all possible, get outside. Every day. You likely have some kind of deck, maybe a bit of yard. Just get outside and breath, take in some trees, even if just for five minutes sitting a chair or the steps. Please. Get some natural day light into your eyes, no glasses.

But, somehow, some way, find a better way to move energy for a release. Dancing seems the most logical. Easier on you and the furnishings. A good therapist can also help you explore this idea of "moving your energy" . . . channeling it . . . transforming it.

Mediation also a consideration. Ommmm.
-

[ 02-02-2015, 05:29 PM: Message edited by: Keebler ]

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beaches
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I can't read through all of this. All I know is that the vow of marriage is sacred and is a sacrament in my religion. My husband has stuck by my side through thick and thin. It has not been easy for him especially given the fact that our children have been very ill as well. My takeaway is that real men suck it up, stand by their women, do what needs to be done to keep the household running.
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beaches
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And if a man doesn't live up to his vows, it's time for the woman to call him ouf, legally and/or whatever other way. Consulting an attorney is a logical step. Wives have legal rights:
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Robin123
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Beaches, I think you have a special partner. I have seen it go both ways, with marriages - some partners are fantastic, and some split. I think you have a real person there and congrats on that. And so are you, I might add!

Seems to me that Giselle has something going for her here - she said her husband is not going to abandon taking care of her needs, which is something. However, as you say, there is still a world of difference between your arrangement and hers.

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LisaK
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of course none of us know the situation totally here except the 2 people involved. my grandmother always said: "3 sides to every story: his, hers, and the truth"

that being said, I can't help but hear in some of the words you are using GIsele, that your husband sounds really burned out.

Counselling would be great if he would go , but when I was in my throngs of sx and didn't know I had all this crap, and my husband (unknowningly sick too) was not in a place to talk to anyone let alone some stranger, we tried counselling and it always ended with me crying and feeling hopeless because my husband wasn't ready to make changes or even thnink rationally becasue he was so burned out (this was a life-long struggle with him).

to me it sounds like Gisele's husband needs a break. not planting any hope here- just saying that maybe he needs to distance himself right now. setting boudaries. "I don't love you, but I won't desert you" sounds to me like some kind of love. most people don't even know what love means.

this is only my opinion of course.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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jlcd1
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Im so sorry you have to go through this on top of everything else we have to deal with. Praying for you.
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Keebler
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Gisele,

As you say you haven't even any items of clothing you did not buy for your husband's taste rather than your own.

Since it's the beginning of the month, maybe there would be a little money to buy at least one or two items - of your own taste - for yourself. JC Penney has some good prices on soft cotton tops, for instance.

Same with items in the house. A poster, maybe. Do not think of what anyone else will think of it. What do you like? What "fits" you?

Usually most couples will have a way they negotiate such purchases / placements. But I've never heard of anyone who did not have some things that were just of their own taste. I think it's important. Art, color, texture is very personal.

As for the financial situation most of us are in, consider thrift & consignment shops, too. They make good sense. I don't suggest charging anything, though. And if nothing is in the budget now, maybe your friend can help you do some make overs on what you already have.

It's important that you can look around and see some things of your taste. This is for yourself and it's nice if others can also appreciate but this is for your to let your own individuality come out.

You might want to start creating art or clothing designs yourself, for yourself, too.

Actually, thinking back, you say you bought everything with him in mind. Not quite the same as (just) to his taste. If you were drawn to these items yourself - but then attached some goal to them for another person - go back to your initial interest in them - for yourself.

Still, I find it helpful being homebound and feeling ill so much to have posters from nature. Bridges, rivers, vistas where I can look out, far and away.

You may find your tastes vary but this I know: art matters. It is food for your soul. It's for no one else to determine how you feel or what you think when you go into a work of art. It's a place for you to be yourself.
-

[ 02-03-2015, 04:52 PM: Message edited by: Keebler ]

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seibertneurolyme
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Gisele,

So sorry you are dealing with so many issues.

I think one of the issues is that you and your husband are from different cultures and backgrounds. Men and women are obviously programmed differently, but when different religions or cultures are added to the mix it complicates things one hundred fold in my opinion.

You also seem to have some issues with self esteem. You have talked about buying clothes to please your husband for example. All wives do things to try to please their spouses, but that does not mean being totally subservient to your husband's wants and wishes.

Marriage is supposed to be a partnership. And that means respecting each other.

Coming up with a 6 month or one year plan seems like it could be a workable solution. But as part of that plan I think counseling would be beneficial. If your husband is unwilling, then go by yourself. It could still be productive.

Good luck and keep posting on lymenet. There are many here who can offer advice and support.

Bea Seibert

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Keebler
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It can be hard to see truth. Maybe looking at things from a different perspective will help?

I was searching for a mirror so I can actually see better to cut my own hair . . . this was in the mix (with tiny mirrors inside, I guess).

How this for some fun to brighten any day?

www.worldmarket.com/product/national+geographic+wild+chameleon+vision+goggles.do?&refType=&from=Search

National Geographic, Wild Chameleon Vision Goggles
-

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Keebler
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Gisele,

You've been in my thoughts. Hope life is somewhat balanced for you with all that's on your plate. No matter what, be sure to keep some kind of humor (although when that's at a low a good appreciation of irony can also help).

Hope you are making some new connections for support in how to address the many facets of the situation . . . and also finding some beauty & joy around you each day.

With Valentine's Day next week weekend, please be careful. Avoid the common tendency to mold it to any kind of wishes when we want a specific scenario to play out (regarding the actions / behavior / feelings of others).

Don't get caught up in all the marketing of this day.

However, there is love of many kinds . . . and more and more are finding that by expanding the Hallmark holiday to include all the love, it's a much richer experience.

Or, some choose to just ignore it. There is also a lot of space in between. I like to be mindful of how the world is turning and can put on just about any event my own perspective that works for me to appreciate beauty & light. And it can shine from some unexpected places.

Life evolves. Really. There is every reason to believe that your life will move forward in good ways even if it's just not quite clear how. The process, itself, the journey is usually full of surprises for everyone. Just be sure to take notice of some wonder where you can all along the way.

Take care.
-

[ 02-05-2015, 08:15 PM: Message edited by: Keebler ]

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Robin123
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Keebler writes well here - life is a learning experience, believe you me. Please have some patience with the experience of the change you're going through. It can take awhile to readjust.

I do think, though, it's important to think about who we were before we met our partner(s) in life, because that person is in us and waiting to reemerge.

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Keebler
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http://www.npr.org/blogs/allsongs/2015/02/07/384342060/the-good-listener-how-can-i-avoid-love-songs

The Good Listener: How Can I Avoid Love Songs?

by Stephen Thompson - NPR - February 07, 2015

Excerpt:

. . . this week, thoughts on how the heartsick can avoid songs about love, sex and desire.
Brittany writes via email:

"I love music. But 99 percent of the time, music is about love — or, worse, its absence — which becomes grating when whatever love/sex/relationship situation I'm in inevitably implodes.

Where are all the great songs that aren't about love, sex or desire? They can be about anything else. I just want a killer playlist that doesn't make me constantly relive my failed love life while the wounds are so fresh." . . . .

[Full article and audio at link above. Many good suggestions here.]
-

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Gisele
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I cannot thank you all enough for your comments both good & bad!! It is nice to know other's are out there suffering or who have suffered through the same thing. Especially those whose husbands did stay!! HURRAY!! I was worried they didn't exist. Those men deserve metals!!! Any one married knows it takes real work to have a successful marriage.

It is also so hard to be a caregiver, especially when there is no one else around to help, except for our children. He even took back some of their chores things like grocery shopping that my oldest son was trying to do. My yougest asked me in the beginning if I was dying. I was devastated that even my faking it looked that awful. I knew they were too close & they needed to be more focused on themselves, right or wrong that was my choice.

I'm sorry I sounded pathetic. When I said I bought things with him in mind. I meant especially since I gained weight. I had to buy some new clothes that fit, it would help me feel better first & he might think were cute. I would think most women would buy things that men like especially their husbands?!?!??

We started dating at 19 & 20 got married at 23 & 24. We had no family around to guide us after my parents retired to Texas after 7 years of marriage. They did help us focus to buy a home. It very hard to be a man when you left home at 17 and never went back except short trips. I was well prepared to have children I baby sat since I was 11 years old & baby sat a lot. We were everything for each other for many years. We met 33 years ago yesterday & have been married for 28 years.

My husband is not very religious or we would have never meet. I realize now that my pushing, crying, & yelling every 2 to 3 times he came home or called, has finally broken him. He was even ready to get me a condo and he would rent an apartment. He was avoiding hurting me because he couldn't deal with it or me. I only see him, since our son left in August, my doctors and rarely anyone else.

I became more needy and he could never fill my emotional needs before the kids left. Thus it was the perfect storm. I pray I will stop being angry. But he was already done & I was deeply in love with him. It was such a shock. I would've believed he had 3 affairs going on more than this.

I know some where he still loves me because he still cares. Hopefully in the time it takes for me to get better. He will remember what we had & in this time what we will lose. I hope & pray this is our future. He has stayed for 5.5 years. He will stay until I am better. It is not perfect, but it is all I have right now & I have no other alternative until I can drive or do much more for myself.

He said we could go out to dinner when I'm up to it. I believe & pray it will start something better after some time passes from there nobody really does know? If anyone has bothered to read this. I really need to know is couples counseling helpful now or is it better to let things rest before bring it up right now???

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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I'm also puzzled many bought up music. I suffer from horrible migraines brought on by physical, emotional, or intellectual stimulus. It made me crazy until I discovered Lyme & I met the one & only person yet worse than myself, at the first Lyme support group meeting. She was in a wheel chair prior to her getting diagnosed. Now she runs a welliness center. I had lost feeling in part of my foot & in back of my calf. She suffered horrid migraines & told me what helped, but I could only get those meds from my Lyme doctor. Perhaps its just people with neurolyme.

Anyone else have the inability to lay on their left side? Other people in our support group have this. I found this symptom so weird & specific? It was one thing besides having over 90% of Dr B list of symptoms, but when your mind doesn't work. It all is hard to explain & understand.

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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I also feel stupid, when we were fighting he said he would have left me if this was the other way around years ago, I find this shocking. We put our marriage back together in the 2+ years before I got Lyme. I makes me so mad if I never got ill I wouldn't be in this mess. I put up with so much.

I felt when he pulled away about 1 1/2 years ago we wanted to get our dream condo downtown Chicago. I looked on the computer for years, but when I admitted I could not go & see them because I don't have the strength. This rocked his world.

I went & read his old love letters some before we were married & how much he wanted to be with me, love me & chased me. I let him have a lot of freedom because I knew how hard his job was & entertaining clients 1-3 nights a week. We never put our relationship first since our second child was born due to his inability to speak & his abnormal at times behavior. This is when my husband pushed away & then about 8 months later I got diagnosed with significant arthritis condition which he blames.

Anyhow how do all the adult things, give up almost all of your friends, & dedicate yourself to one kid with Asbergers & the other with a significant speech and learning disabilities. He didn't want to make certain sacrifices so I did. Everyone even my therapist who knows this much more indepth say he will come back. He owes me our dreams.

I took his brother in for 2 years instead of 2 weeks
in Italy. I feel like a fool, but he is such a good person accept towards me & the kids. I know he is still there I just hope there is time. Sorry for writing so much. I don't know to have hope or am I just plain stupid.

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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Gisele,

With limited energy, only a couple of things for now.

1. Music. Well, the trouble you have with music is not uncommon. I have severe hyperacusis myself and rarely can listen. Still, many with lyme can still "do" music to varying degrees.

I'm sorry to hear that migraines are involved. Be sure your magnesium levels are up to speed. That might really help.

But the reason I mentioned music was that, at least before hyperacusis, and when I went through some very hard emotional turmoil, music was just so much of a part of every waking moment. For many, it's layered into their lives.

Were this to be the case for you, I just wanted to help you find other good music. Music without lyrics, or to focus on other than romantic love. Especially now with Valentine's Day here.

But, besides music . . . shifting focus from romantic love gone haywire to other experiences is often a nice relief and new window to the world.

2. clothes. Sure, everyone has bought some clothing with another's eye & heart in mind.

You has said that everything you owned clothes and everything you saw when you looked around had been purchased with your husband in mind. And that when you looked at nearly anything, it was hard.

That is why the suggestion to find a way to shake that off was made. To have some clothes that are just for yourself and you don't think of how they might be seen to a particular person.
-

[ 02-12-2015, 06:12 PM: Message edited by: Keebler ]

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Keebler
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A couple things that catch my eye. You say that you:

"really need to know is couples counseling helpful now or is it better to let things rest before bring it up right now???"

"Everyone even my therapist who knows this much more indepth say he will come back." and

"He owes me our dreams." (end quotes)


Yes. Not just couples counseling but also individual. You mention anger issues. Understandably based or not, this would be one major focus of counseling for yourself and a therapist to explore the underlying aspects and build a communication options.

As a couple, yes, too. However, his statement of love not being there does deserve to be minded. That does not mean you can't still process this and build on communication . . . to whatever kind of relationship evolves.

You will always be a family as your two sons are now entering young adult lives and will still need you both.

Mentioned before in a reply and I just have to say it again. The therapist you have is not a proper therapist. I don't mean to sound like this and it may hurt but there is no good therapist on this planet who would say that he will come back.

It's against their code of ethics to make such a statement. Something is not right about that.

They do not know, cannot know and would never ever instill possible false hope in a client. Please find someone who is a certified marriage and family therapist, a Ph.D. in psychology and who is at least familiar with chronic illness.


A LL therapist who would understand possible connection of BARTONELLA to the kinds of outbursts you've described would also be a plus.

and be sure to talk to your LLMD to explore possible BARTONELLA. It can cause such anger outbursts. This is so very important to consider.

(segue glitch as I just edited in that Bartonella detail)

Now, that does not mean that the two of you might not be able to work to some degree of a redefined relationship.

But be very careful about thinking or feeling that he "owes" you your "dreams."

That can be a time bomb.

I know that all this is painful. At this point exploring all this is best with a really good marriage & family therapist. I'm not a professional, obviously. Personal experiences over the years took me for a series of tumbles and I'm sharing some of the things that tripped me up.

To really get to a good new foundation - first just for yourself - a change in therapists may be the best first step.

From there, no one can say what the outcome will be. The goal, however, is for you to become as emotionally strong as you have within yourself to be, regardless of physical health.

By exploring different processing and communication styles, our relationships also then can shift toward health. No one can say exactly how that outcome will look yet . . . .

Sorry, I have no way to wrap this up. And that is rather appropriate, I guess. It's all a process. We never stop learning, even about ourselves and how to communicate with others --

- and in that getting to really see who they are and listen to what they are really saying. It can be so painful if what they say they feel or what they want is not what we want to hear.

Still, my view is that we just can't go wrong by getting expert counsel on how to see ourselves and others in true light -- and how to talk together.
-

[ 02-12-2015, 07:03 PM: Message edited by: Keebler ]

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Keebler
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You are very strong, by the way, and it shows that you have navigated the waves of parenthood with your two sons who have no doubt grown into strong young men in their own right.

When faced with tough times in a relationship and things are not going as we pictured, we can forget that we do have inherent strengths.

One aspect to emotion is the way that we are not always loved in ways we would like. That causes everyone heartache at various points in time. Everyone.

Another major obstacle is that the "gods" of language played a joke on us.

Like in an ancient Greek play, or even more recently as Shakespeare has shown even up to our time . . . we have all the words, thoughts & desires. Sometimes like a farce, though, we just don't quite know what to do with all that and we can stumble all over the place.

As humans, we think we've "got this" since we know the words. We just haven't been told what a puzzle it all is and it's so often far into life when that becomes clear.

A quote (from who knows where) is that God gave us one mouth and two ears so that we can listen twice as much. But no where in my education was I taught to really listen without agenda, without expectation. Times have changed in recent years, I hope but still . . . .

To really listen is actually the first step to good communication. It comes before talking. And that's a major skill and excellent therapist can teach us to hear ourselves . . . and others.

If we don't really hear them (and there are so many layers to this part) our words don't stand a chance.

A good therapist - again, best if LL so they really understand the challenges with energy, sorting and talking -

can help us find our voice - in a way that works for others to better hear you. I really hope your husband will join you in this effort as you both explore how to really find your own voices and honor each other's (where to put that apostrophe?) as well.

And, as for emotions, well, that's another whole world. Sorting, expressing, letting go of some while claiming others . . . . human psychology is a maze, for sure so find a good guide.

As for how I'm putting words & thoughts together with intent, it's sure not going like I wish. But the web has major limits with this kind of tender territory. And so do I. Part is due to lyme, fatigue, dizziness but my intent is to try to help you see that there is every hope that - somehow - your life can be emotionally rich again.

It just may not look as you thought it might. It might take a few off road jaunts. Yet there is every hope. At this point, finding a very good therapist as your teacher and guide can save you a lot of fuzziness. Best word I've got. So better stop.

Remember, that you are strong in the ways that matter as you sort through it all. Nourish your body and nurture your spirit.
-

[ 02-13-2015, 12:12 AM: Message edited by: Keebler ]

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Robin123
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Good for you, Keebler, I agree with what you're saying here. Therapy should be for Gisele right now, and no, we cannot know what the other person is going to do. It's about empowering ourself to take back what we can of our life.

Also, be careful about what someone "owes" you - they may not see it that way.

I think what happened is your illness wore him out.

Now it's time for you to get you back. Believe it or not, you can find personal happiness again, within yourself, not at the effect of someone else.

I too think you're strong to have raised two health-challenged kids.

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Haley
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Gisele,

So sorry you are going through this. I didn't read all of these posts, but my heart bleeds for anyone going through divorce or break up. The only thing worse is going through it while you have Lyme.

I highly recommend a book entitled "Love must be Tough", by James Dobson. I wish I had read it before I begged and groveled when my former spouse told me he was leaving.

And don't tell anyone you are reading it.

http://www.amazon.com/dp/141431745X/?tag=googhydr-20&hvadid=32621797351&hvpos=1t2&hvexid=&hvnetw=g&hvrand=10452514979606980858&hvpone=&hvptwo=&hvqmt=e&hvdev=c&ref=pd_sl_3qf9xk0cjk_ e

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Gisele
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I love your statement "groveled". I groveled at my husband feet, begging him to tell me what I have to do for him to come home & spend time with me. Oh I freaked him out.

I went on & on for 7+ hours asking why won't you come home. I walked barefoot into the snow I snapped. That's when I snappeaid you should go I didn't mean it & he upped & went the gym.

Thats when I through all my shoes in one closet in the garbage followed by my laundry he does once or less a month. Threw all clothes out of my small closet (glad I couldn't go up stairs) what know one gets is my husband (jackass) doesn't argue. He doesn't discuss anything difficult.

I have been arguing & yelling at walls until I realized I realized it didn't matter. So how to deal with a 54 year old 12 year old. He just runs away.

So that's is the idiot I married, but he became very successful don'task me how??!? By the way I was going through the medical bills for flexpay dollars. He told me,after I begged him while I was ill,he went to see a therapist. I was shocked this was end of nov

.................................................

Breaking up the post for easier reading for many here -

[ 02-13-2015, 04:49 PM: Message edited by: Robin123 ]

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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I love your statement "groveled". I groveled at my husband feet, begging him to tell me what I have to do for him to come home & spend time with me. Oh I freaked him out. I went on & on for 5+ hours on Jan 23 & 7+ hours on the 24 & threw my clothes & shoes in the garbage because I felt like garbage & he just took them out of the garbage.

On the Jan 25 I snapped & broke & messed half the house when he left. The amount of pain & suffering I have been through over the decades. He wanted to call the police & have me locked up. I said its not the problem I you don't get it I said this about a pinkie's worth of all the pain you caused me.

I kept asking why won't you come home. It was hell weekend. After 3 days of it & he snapped. I walked barefoot into the snow I snapped. He grabbed me like I'm crazy. No know one gets is my husband he doesn't argue or talk nothing!!!!!!!!

He doesn't discuss anything difficult unless absolutely necessary. I kid you not, he says nothing. I have been arguing & yelling at walls until I realized I realized it didn't matter.

So how to deal with a 54 year old who acts like a 10-12 year old. He just runs away. So that's is the idiot I married, but he became very successful don't ask me how??!?

By the way I was going through the medical bills for flexpay dollars. He told me,after I begged him for years, he went to see a therapist at the end of Nov. But I found bills from the beginning of Sept. Why is he lying about something I would be happy about.

After a few visits he was like this guy was telling him he never loved me from the beginning since he didn't want to come home.

My husband has never done any therapy. He doesn't know how to process this stuff & is very suggestable.

He went when my son went to scoohl. Thats also when he started staying outmore.So he started with another one both not in our plan. I get to see my therapist every other week. He went when things were bad 4 days out of a week.

I know he is devastated by some of the horrible ways he treated me. I lived them.

He couldn't take my "garbage" analogy, so I said I'm like your dog. I have a nice home, you feed me, take me to the dr, help somewhat with my meds, but even a dog gets petted. I just wanted to bring to his level of what he has done to me.

He has not touched me in a year or so. Sometimes I don't have food easy to get too. He would never ever treat his mother this way.

...............................................

Breaking up the post so it's easier for others to read here -

[ 02-13-2015, 04:53 PM: Message edited by: Robin123 ]

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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Gisele,

1. Does either son live with you now? [I think you said they are now between 18 - 21.]

2. Have you practiced for how to react when you see ads, signs, news articles, sky writing across the sky or whatever sort of kooky displays might pop into your awareness today / this weekend?

Desensitize yourself to bright pictures of hearts, flowers, people smiling (they are paid actors, remember) . . . and the very sight of the word:

Valentine.

It may be important to actually make some kind of "breathing" "go to your nice place in the forest" or a "warm turquoise pool in a red rock canyon" in your mind.

Giving some thought to this -- not expectation or plans even for you and your husband as that sounds off plate this year -- yet it is important that you not be caught off guard. That might take some thought, like being on your "tennis toes" just in case a commercial or web ad bounces your way.

3. Then, I hope you can go a step beyond and just sort of put aside personal romantic thoughts around this "holiday" - for this year. And that might take some thought, some pain and some letting go. Just let all that drift up to the clouds. Breath and divert attention to a travel DVD, etc.

Call your sons, close family / friends and tell them how you feel about them (well . . . that sort of depends, maybe ? Smile here, intended!).

If one or both sons live with you, if they have significant others, I hope they can share some joy in their plans with you. If no significant others right for them, and they are there . . . plan something fun. Maybe a particular ethnic food and movie from that country?

This is really important. Reframe.

Stay out of the past . . . and don't jump to the future, either.

Those neighborhoods can be a bit tricky on this particular holiday, especially.

4. You say that there is often not food within your reach. that implies your husband (?) has been preparing or bring home food for you to have, at your bedside? Or in the fridge. And that is often now not happening?

If that is the case, well, whatever the case, there has to be a better way to plan for food delivery, etc. Other people, other ways.

Call the information number for your local chapter of United Way to connect with volunteer groups.
-

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Keebler
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http://uw-mc.org/get-help/

United Way of Metropolitan Chicago

GET HELP

City of Chicago, proper . . . call 311 for information / suggestions for agencies to connect.
other number at link above.

United Way of Metropolitan Chicago supports services in education, income, health and safety net through our agency partners. We do not provide direct service to clients.

Ask them how you might connect with any volunteer grocery shopping / delivery agencies in your area.

Also check online to websites for your favorite groceries, etc. They may have a delivery service of some kind. Talk to them.

For dry foods, many gluten-free and many without additives: VitaCost & iHerb carry a good offering of things like Black Rice, Beans, spices, etc.

www.vitacost.com & www.iherb.com
-

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Robin123
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Communication needs to be very good for marriages to thrive. When marriage partners do things behind one another's backs, that's not being present in communication to each other.

He may not have learned how to communicate well.

Ultimately, I think your marriage can only be saved by some work together in couples counseling.

But I think it's fair for you to go to therapy by yourself first to talk about how you feel and what you want.

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Keebler
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Gisele,

I'm trying to think of a way to respond to your posts above. I'm rather at a loss. I have a few thoughts but just cannot put all the background, understand or logic with it. No energy for that. Please read this I a very neutral, caring tone.

Try to look at your behavior patterns from outside of yourself. I can see that anyone else would be frightened and then not know at all how you might react / act in any circumstance in the future if you became upset . . . regardless of "fault" because

"fault" for triggering a volatile response sort has to stay out of this for a minute. Look at physics: For every action, there is a reaction.

When a bottle on one end of the chemistry lab blows up . . . all the other bottles are going to keep their distance. How that bottle can win back trust from others is quandary.

I'm not very good with metaphors and trying my best to have this read very neutral. So, stick with that physics "action; reaction" thing as you move through and also the concept of proportional.

That your husband has sought counseling is a very good thing. And I can see why he needed to keep that to himself for a while. As with you, individual counseling for himself. It's a healthy step.

He may have been scared at the reaction you might have that he needs this just for himself right now. He needs that space, just as you do.

There may be a time when the two of you seek couples therapy but each of you has to first find your own footing.

On behavior patterns.

It's unclear just when volatile behavior begins. For some, it may be learned through parents, grandparents, etc. and just passed down.

Not so much as genes or even "well, we're a demonstrative family" but as "okay behavior" when it's not really. But if that what someone grows up with, they may not know.

For some, volatile behavior may come later and a reaction to a situation in which they feel hopeless in being heard, understood . . . or if their dreams are not fulfilled (and that covers so - so - much territory). To ramp up a response from another person.

Despite that pattern being funny in far too many movies, it never plays well at home. We might get one "free pass" for a major slip up. However,

The repetitive behavior patterns that you have highlighted in various posts here are of great concern.

I don't know how, when, where, how that all started but it really does not sound at all that the therapist you've been consulting with is doing their job in really looking at this with you.

Mentioned before, Bartonella, often a tick borne infection but not necessarily, can cause a person to change in ways that include outbursts. I can't say if the outrage you've experienced might be due - at least in part to possible infection or not. Your LLMD is the best to consult on that.

However, if this behavior pattern has just sort of been with you before illness, that's another matter.

First matter may be dropping all expectations of others for this point in time, as to any connection between their actions and your happiness.

Just don't let that come into the room right now, make it sit outside, down the block, out onto a boat in Lake Michigan. Get the picture. If it creeps in, mentally, put expectation back on the boat in the lake.

Figure out how you can best take care of what you need - for today, this weekend. Stay present. Take in beauty where you can. The blue sky, the white snow, it's there somewhere. Beauty in nature is key right now for focus.

Please connect to a better qualified therapist who can help you find your foundation, within yourself.

Volatile behavior, what's behind it, how it seems to kidnap you (and then scare others around you and maybe even yourself) should be the first matter of concern. It has to start there. It's more than just anger management and not all therapist are really experienced, educated or skilled in this area.

If this seems more than just thought process, learned habits or behavior acquired for whatever reasons . . .

If it had a sudden onset, look at possible brain reasons and get a brain scan - seriously . . . &/or nutrient deficiencies, while not likely the basis, they can also have some part to play, even low blood sugar. To know that we aren't going to run off the road, that's a good place to begin.

My hands and loss for other clear suggestions are telling me to stop. Take care. Breathe.

Take care. That's the goal for now.
-

[ 02-13-2015, 06:28 PM: Message edited by: Keebler ]

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Gisele
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I'm sorry I keep writing but I really need your help.

People have to get I was the reason he could be successful & had the time. Until I got my arthritis in my mid 30's all he did was roll out the garbage once a week. He know's I am a big part of his success.

While all this is going on my asberger's son's living with his girlfriend at their own apt lives are falling apart. Ive been balancing trying to help them & it's bad. I have spent many hours today & several hours yesterday.

My other son can't do basic stuff got contacts, can't use them I had to call all over to fix that. Oh I forgot he lost his wallet. It goes on & on,but he is succeeding at university in Ohio. We live in near Chicago.

I spent last Sat entertaining his family I said nothing, he did all the cooking & cleaning. I was at our cabin (old love shack). After waking up the next morning next to him I felt awful.

This place I had redone, & almost lost my mind, with a bit of his help. I thought it would bring me peace like it used too. He left me there Sunday then I learned he was taking our son to a hockey game on Monday so he would be late.

By the way he must have let something slip about us since he parties until 4:00am at times. Now my son thinks he said something like I cant care for mom anymore. This to me, our asbergers son, IS ABSOLUTELY THE WORST EVER!!!!!! Worse than him telling me he doesn't love me!! He swears oh no I would never! He forgets what he tells me. Who knows but it will hurt my son in ways he cant feel!

He knew i was falling apart, but promised to be there early the next day. He showed up at 1:30am. I said I don't ****ing care. I need to go home. I was so out it I lost a day. A whole day!

I was stuck falling apart on a bed that causes me great pain for two days eating skittles(my bday gift) & a couple breakfast bars. I didn't even know!

I have shared only a tiny part of my life as it is full of all kinds of pain,but it is like it's always something. My therapist can't believe how it just keeps coming. All I know is when I'm better I want a full life & was planning on doing charity work. Guess no one should plan for future so it can't be shattered.

I swear my crappy young life. I couldn't deal with for a decade has prepared me for the hell I'm in now. My young prehusband was the kindest & gentliest man I had ever met. He was amazing & kind. I helped wreck it because it felt icky & so uncomfortable, that I couldn't be adored.

I never knew he would choose money over his family. I even said those words to him before we married, because I wanted a partner. He is so easy going. He is charismatic & that gets him far.

By the way he has not been home on time even one time since we made our plan. He says he will be home, but chooses to go meet up with someone else. I just reconfirmed he has a lady friend. I know it hasn't progressed to physical, but I am no fool. No one knows because even his confidante did not know.

How do you teach an idiot to grow up. He just wants to have fun, fun, fun! He is in insane & now his kid might deck him when he see's him. I warned him! That's a sampling of my past few days!!! Oh & he is leaving sat to take client's skiing for a 8 days.

He has never been gone this long, but he is filling in for the divorced owner who is banged up alone after surgeries. He will be on that plane no matter what, he leaves!

--------------------
Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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Possibly all the injuries I've had from falls and seizures color my visceral reaction to this part but this one key point of safety jumps out, when you say that:

"my son thinks he said something like I cant care for mom anymore. This to me, our asbergers son, IS ABSOLUTELY THE WORST EVER!!!!!! Worse than him telling me he doesn't love me! . . . " and

you told him that "his kid might deck him when he see's him. I warned him! . . . " (end quote)


Well, of course, it's good if both parents talk to their kids (even if adults out on their own) from the "same script" and "on the same page" so to speak. Sometimes, opportune moments present themselves off script.

And, that your husband seems to have tried to coordinate pages, but that's not quite worked out so that you both speak about this in one voice, he likely felt he needed to clear some air with eldest son.

Point of safety, though:

That your response is that you "warned him" seems to imply you would be okay with your son assaulting his father?

I really hope you stopped any idea of that. Sure, we all may feel that impulse and it's good to talk it through yet it sounds like you might actually expect that to happen (?) or am I reading that wrong?

It can be so hard in our pain to step outside of it.

This may sound like a defense. Please, please. Read it in a neutral tone. Don't teach your son to give into impulses. Don't either of you go over to the "Dark Side" -

The time father & son had together may have been a short window of time and father may have just felt it best to honest. He may not have planned the conversation.

By all accounts, he cannot care for you anymore. He's told you that. I take it to mean physically, emotionally.

Any 21 year old is likely smart enough to have figured out all this long, long ago and likely glad to have someone be honest with him. Kids know when parents are in troubled waters, even if they no longer live at home.

He's in a relationship of his own, living out on his own.

Those with Asperger's can be much more intuitive. Yet, no matter what, hearing actual words from a parent can cause one to be a bit shocked, and with all kinds of emotions to process after that conversation.

That you have warned your husband son might deck him does cause some concern as to the likelihood of that set-up.

After about the age kindergarten, everyone should fully realize that "Decking" someone can result in serious life long injury on both ends and, and maybe jail for one (your son).

If for no other reason than that your son will need his hands to make a living . . . remind him of that.

Just talk to him about how to process his emotions in a good way, please suggest that he consult a professional who can help him work through this.

How you talk to your sons matters so very much in all this. You can set the tone.

Hard? Absolutely, when in denial / shock / emotional turmoil. Really, though, it's a good way to move through it.

Try to envision in your mind how you might carry all this with as much "style and grace" as possible. I know that might bring a laugh and you can be light at times about "just how in the world can I do THAT?"

Not faking or acting. Just try it on in your mind for a little bit. Then a little longer. For a start.

And, really, there are other avenues to shift some practical errands, food, etc. so that you can be more independent and that can actually bring some relief so you can organize and arrange what you need.
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[ 02-13-2015, 08:44 PM: Message edited by: Keebler ]

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Gisele
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I CANNOT THANK YOU ENOUGH !! WHAT YOU LADIES GAVE ME ALONG WITH MY BEST FRIEND,IS A BIT OF PERSPECTIVE. I know there are so many others struggling. This process of writing & reading writing & reading due to my Lyme brain. Has been very therapeutic. Thank you for this vehicle!

Please understand I only acted reacted only this one time after having no answer for why or what reason he wouldn't come home for years & decades. I needed an answer any answer. That is why I went that far, because he would say nothing other than it's all my fault. Ive heard this for years. My self respect needed an answer & deserved an answer.

After just shy of 3 weeks I was truly just in search for the truth & now I know some version of it. I don't hate him. I still love him. I drove him away, but leaving me sometimes with no real food, letting me live in disarray & uncleansingness is not right, kind or love. I didn't understand. My enormous love for him & our family blinded me.

Because my reason for fighting with no support at all was for the love of my family. It was all I had & all I needed. He had not the constitution to know the real truth, deal with my excruciating pain, be a real support for me, or even hold my hand. I choose to let him keep some part of his life, because if he ended up with a nervous breakdown or worse. I would've never forgiven myself. When he removed himself & left me with just the kids. I was very justifiable at feeling like my world exploded around me.

I still have hope for my marriage because I have time. His infatick No he would never tell our son we are struggling. Is telling. If I leave him be & go back to respect, no one knows any of our futures. If he see's old me functioning, the person he loves. He may fall back in love. Who knows?

I apologize if I write a few more times if I need too. Perhaps it could help someone else.

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Robin123
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I still think you need to find the old you in you before you met him, hopefully when you knew how to live your life without checking in with someone else. Did that time exist for you? Then no one can take away your self esteem and self respect. When you find your own center, someone else's whirlwind can't get to you as much.

He appears to be living his own life now. I actually think it best if you not put demands on him, but meet your own needs as much as you can.

And agree with Keebler - no hitting!

No need to apologize for writing here - it's a process to get through this and get stronger as a person again.

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Haley
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Gisele, have you bought that book yet? There is still time, trust me, it will change the way you handle the situation.

"Love must be tough"

It may change the destiny of your marriage, but if the marriage does end you will walk away with self respect and dignity.

Please buy it.

I will buy it for you if you send me your address.

[ 02-14-2015, 06:24 PM: Message edited by: Haley ]

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Gisele
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The social worker from the hospital is working on my case.

I'm sorry people don't understand many people with asberger tend to be

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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My son can be impulsive. He is very protective of me. He doesn't like how his dad treats him. If you thought your parents marriage was fine & his relationship, where he has proposed to his girl friend, is falling apart.

I was warning my husband, because he would not call or text the misunderstanding he wanted to see him in person. He wanted to discuss it personally. I was just trying to protect them both!!

We finally had a normal night when I helped him pack. We've spoken he is better with a more normal relationship. After 33 years together we fit together well.

Our plan of he gets no more crying, sobbing & making his life miserable. I will not tell anyone except my best friend, therapist, & you ladies. In return we will respect each other, be kind & have serenity. I get a husband who will be home at least 4 days a week afterwork,call once a day, & keep his promises.

These last things are issues he has let go especially doing what you say & say what you do. Pretty shocking with 1 therapist visit, my best friend(who would talk many times a day until late in the night), & you ladies I understand many of the core issues within 3 weeks.

I was so worried about him breaking down from my illness. I even kept what most of these disgusting diseases were doing to me. He is a gentle man. Seeing the pain in his eyes is to hard for me to take.

The doctors were like where is your husband I said he cant take it. I couldn't be the reason for him falling apart. He had already given me peace, love & tranquility that I never received from my own family.

I can understand why he points at when I got arthritis as when things changed. He forgets about 5 months before, our second child was 20 months old & was tested by the state special educational program

His diagnoses were so significant. He couldn't speak for quite a while. I had to learn sign language. He had processing issues, severe sensory issues,& was already 2 1/2 years behind with most skills at 4 year old.

I was devastated. This is when my husband pulled away. He couldn't deal with it. How do you learn 2 sign language words thats it. I learned a few hundred after a couple months. I thru myself into my child issues & I mistakenly gave him little attention.

Then my other child had similar issues just not so bad. I had to fight the schools, the insurance, & face their futures may not be so bright. All the therapies & specialists. It was a nightmare, but I was going to do anything possible to help them both.

Thank God my husband was successful. What a realization. I needed that to get them more therapy than the school system provided. Without that they wouldn't be the successful young men they are today. Wow here is something I needed to figure out!

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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No prior to meeting him I was in college where we met & studied together. I had no self esteem. I found out a 2 decades later that I had borderline personality disorder. I was trying to commit suicide & I was in & out of hospitals. I was a giant mess.

He was crawling thru my windows to see if was OK. He was there! But about 10+ years ago I had been off all psych meds for a few years & I wasn't seeing my therapist. My best friend & I helped each other almost daily thru very difficult issues.

I became so clear after a few years. My marriage was healed & they were some of the most amazing years of our marriage. Then I got sick. It was horrible. At first thought I might have something possibly terminal.

The pain went up everyday. He was scared & I was terrified. He has trouble dealing with difficult things even with his parents. He did the best he could. Our plan. Now that I know he isn't falling apart. Gives me the power to enforce our rules.

Those rules force him to think of me in a respective manner. I realized with my 5.5 year Lyme timeout. I only wanted to love him & he didn't see it. He was hurt that I pulled for our kids. Our relationship before my son's diagnoses was good.

I have always been sick here & there. I had no energy left for left him. I begged him to get his own therapist for himself. I knew this was devastating to him. We have no family. He also protects me from things that he know will hurt me.

I know sounds it bazaar. I accept he is not in love with me now, but he loves me in a certain way. If we come back together no one knows. My therapist has met with him 6 - 8 times throughout a 13 year period.

She always says he really loves me. This is why she & even best friend. Say I have a chance a good chance. Even when I couldn't see it. We have both been thru so very much you have to understand there are so many other issues.

I am no fool I know I could also end up alone. I asked him when this all fell apart if I should go on a dating site. He said NO!

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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randibear
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I really dont know what to tell you.

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do not look back when the only course is forward

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LisaK
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Haley, that book looks interesting. my sister is going through something similar to what Gisele is and I am passing that book info onto her, as well as considering reading it myself! ALL marriage is very hard. very very hard work.

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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LisaK
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GIsele,

I cannot read everything here, but I tried to read most of what you wrote.

I will tell you there are many similarities between us in our relationships with our men.

my husband used to be sort of like what your is doing.

First of all-- I really think tick disease plays a bigger part than you may realize. your husband probably has it too. the way you say he is acting sounds like it to me.

and your actions/words are saying to me that a lot of what you are experiencing is from the tick diseases too.

my husband and I went through years of torturous arguing and battling.

we also have kids with learning disabilities. all 3 were dx with dyslexia and ADHDI and all kinds of other things.

it has been no picnic! life is very tough, and throwing kids that are not typical into the mix really can rock yor world. we heard more than a few times from drs that 1 kid with LD is like having 5 normal ones. !!

and just when you think you've made some headway, someone in the family circle starts acting crazy and messes it all up just when you thought things were getting evened out!

my DH was similar to yours in that he seemed to not be able to make contact with his feelings in a communicative way. it was like talkking to a wall or a pile of rocks for me. blank blank blank.

some people just don't know how to relate to others.

I used what you are- that is giving comparisons that HE will understand and relate to.

it is good you started that and I say you should keep it up. use it every chance you get. this is what started to break the barrier between me and my DH. It really eases his mind when I use comparisons. it makes things real for him

I say, "when you do XYZ it makes me feel like (insert something he can relate to )" very simple and then let it go. I can really see his brain churning when I do this. but keep it to the point and very plain and simple. and then walk away, or look away or whatever.

I think this is what really saved my marriage. other than non stop prayer, or course.

we tried therapy. it was always horrible because I forced him to go.

I went for myself some times but never found a therapist that I could much relate to.

my DH used to hang out in the basement (unfinished) and did whatever down there and sometimes I would hear him cry out in horrible anger, like he was really struglling with himself.

honestly I think he was on verge of killing someone. that is how angry he used to be and how crazy it was here.

it is hard to keep things giong in an even way when we are sick.

now that I finally was dx and so were the rest of us , we are starting to heal. 2 (out of 3) kids are away at school now too, so that makes it a little easier to work on each other. rekindle lost love, etc.

I agree with Robin I think who said you need to find your own self.

you and your husband both do, I think. it sounds like he may never have even met his true self? that was my husband's thing. raised by 2 very dominant parents , the only son in an Italian family, there were many many expectations.

he was pretty much forced into the life my inlaws wanted for him. he was young, just 21, when we married (I am 6 yrs older than he). there are many variables......

I think the bottom line here, in my opinion, is to get yourself as well as possible first. put your energy into that. you have lots of energy and it needs a better direction than worrying about how he used to look at you with nice eyes or whatever.

we all had the best Romeos before marriage or early in marriage or none of us would be married, right? haha.

after you get your mind in the righ t place for you to heal the best way possible from your illnesses, *then* focus on other people.

I know this is very hard to do . you sound like a giver, like me. give give give.... that is what we live for, but as it was hard for me to hear a couple years ago too, it will make a differnce later and you will see.

if you can keep on track with personal healing, the rest will fall into place.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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Editing out some previous thoughts because this just comes back to my mind, often, and it's the most immediate matter to consider:

So, please ask again, for your LLMD to be sure BARTONELLA has been assessed.

And be sure that your LLMD is fully "bartonella literate" so to speak. Tests are not always going to provide the answer so an experienced LLMD who has studied bartonella well is important.

This is so very important for brain & mood issues. Could be THE most important question to pursue right now.
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[ 02-18-2015, 12:36 AM: Message edited by: Keebler ]

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Robin123
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Re Keebler's last line, and your statement about having had no self esteem early on, I'd like to say that anyone who's done battle for two sons with schools, insurance, etc is one strong person!

Also that you said you learned some sign language - to me that shows communication resourcefulness.

You may be in the midst of trying to get what you need, but I think you are also someone who could be proud of what you've accomplished so far.

You could try doing this -

take some slow deep breaths and then say to yourself:

I am strong
I am resourceful
I can get through this

I think it's a good idea to start building some positive self talk.

If you like doing this, you could do it throughout the day.

if you find anymore phrases to add, like "I am doing the best I can" is a good one, then you can add them. It would be good to grow a list. People with self esteem like themself and are supportive of themself. It's good to be on one's own side!

And many would say it doesn't even have to be conditional, that everyone is deserving of internal good self regard.

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Gisele
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I am grasping at why he cannot be kind to me. When he was skiing for 7 days & added a day. All I asked was for kindness. My husband is kind to every one except me. Everyone in my family treats me like I am my old self. I feel so much like a fool. I let my husband and kids drift away due to their huge anxietis over illnesses. I have paid a very very large price. I have faced neurolyme plus all the other infections alone. He can't be kind to me because he just told me he feels nothing for me.

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Keebler
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If he actually says he cannot be kind to you because he feels nothing for you,

please inform him that kindness is still important. You will always be the mother of his sons and although they are now out on their own & even if your relationship shifts, you will all be family, moving forward.

This part may be hard to hear - and in all kindness and tenderness -

if you "hear" that his no longer having feelings for you is unkind in and of itself, that may not be the case [of being unkind in tone but the information may just be too hard for you to hear.]

There is also the nuance that he may feel some need to don a sort of persona of detachment in the need to re-establish this new "place" in the relationship between you.

It may take some time for you each to find your new "voices" here.

There are many variables here. Communication, as usually, it very involved.

You can certainly ask him if he might soften the tone, even if the bottom line information he is trying to convey is painful for you to hear.

You deserve a kind tone and - even if the honest truth hurts - there should still / always be a respect woven into talking.

[ 02-24-2015, 11:56 AM: Message edited by: Keebler ]

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LisaK
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sounds like he needs a break.

is it fair? NO

but it is a reality in many relationships when big stressors are present:
death of a child
illness
alcoholism
drugaddction
to name a few things that throw a marriage into dsruption.

may people feel they can't take any more when dealing with someone they love feeling sick - emothionally or physically sick

my husband told me other day that I need to not complain. I need to cope. I was so upset as I really don't complain even 1/8 of the amount I really would like to complain!

it is hard when everything in your body hurts all the time and then people expect you to have a smile or be chipper!

I have a ahard time with that. I am a *real* person and I express my emotions outwardly. if I hold them in I will kill myslef. just can't do it. tried to for years as a teen and almost killed myself many times.

So I asked DH about if he doensnt believe how sik I am sinc ehe told me to suck it up. he responded that he does know I am sick, but that it just takes so much out of him to see me or hear about it all the time because he feels so helpless and can't stand for me to be like this for my own sake.

well, that may be something likewhat your husbnad is feeling???

mine told me his true feelings after I asked the simple question of what he meant by what he said .

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Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Keebler
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Lisa,

It seems that few can't connect when others are in pain. I wonder if it might help if you explain that you just need to "exclaim" not "complain" and that you don't expect him to do anything about it. You just need to state - at particular times that you are in pain and then move along.

This seems to work for me with certain friends if I need to explain why focusing is hard, etc.

Like being outside in the bitter cold. A lot of folks are more exclaiming the fact - the real bitter fact - it IS cold. The facts are just so strong that putting a voice to the situation is needed to expel some of that pressure.

Our tone of voice, though, can make a big difference in this. And when someone is tired and ill, they just can't "do" a neutral exclamation and others may "hear" their weakness as whining.

I even had a doctor say this about those with fatigue. He just hated hearing their "whining voices" as he actually called it. He should have chosen a different field of work if he could not understand that even in a tired voice, someone just needs to put a voice to what's going on.

When we can, we might try to shift our voice or breath (and still be real) so that we have more freedom to simply exclaim when we need to do so.

Yet, the action of listening - the desire for a spouse to WANT to know how "it is" for the other . . . well, that's very nice when it's there.

Even among strangers, a person wanting to know "how it is" for another - even if it's not all happy times and cheery talk . . . well, not everyone is taught this. My hope is that more will learn it, though, because it's so very important to be able to connect on levels that really matter.

It can be impossible to be a good friend (let along a good partner) if one is not able to be a good listener. No connection without that. Good thing it's a learned skill . . . always hope.
-

[ 02-24-2015, 02:04 PM: Message edited by: Keebler ]

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Keebler
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Gisele,

Similarly to suggestion above with tone and intent of message, while it is very hard to hear the content of his message,

ask him to work with you so that you both can give some thought to the way you both talk together as you go through this shift -

with the tone and manner grounded in respect. With a kind smile, just add "because that matters so very much."

[ 02-24-2015, 02:02 PM: Message edited by: Keebler ]

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Lymetoo
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Lisa, I can relate.. Just tell him sometimes "May I just express what I am feeling right now because I hurt very badly? I don't expect you to do anything but listen."

Tell him what you need to ..
and finish it off with "I love you!"

--------------------
--Lymetutu--
Opinions, not medical advice!

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Robin123
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I think a dialogue still needs to happen while you are in this shift phase -

One way to approach it is to say, "Well, I am ill (that's in case there's any doubt about it) and I would appreciate some kindness. What would you like?"

Then listen to his answer. You don't even have to answer it, just listen. And maybe say, "I'll get back to you on that one."

Ideally to have both of you talking about what you each want from the other. Of course you may not be able to give what the other wants. But the first step is just hearing what each wants.

Because the solutions may come down the road, after both of you have thought about it some. Sometimes you have to give some time to figure the new way, and that's ok.

Same deal with your family, who you said doesn't think you're ill? Same opening statement with them. You don't have to like what you hear, but it's important that you and they hear, so that the relationships can begin to be better negotiated.

No, people may not get what we're going through. However, we can change the manner of the interaction with them.

I think it's also important to grow a sense of self that is not a reflection of what someone thinks about us. It means to know that you are a worthy person in your own right.

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poppy
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Some people, especially men (sorry to generalize, but it is true) cannot deal with bad situations that they are powerless to change. They don't like the powerless feeling. Perhaps women are more accustomed to feeling powerless! And more often than not, men run away from such a situation. I feel that in this way, women are the stronger gender. Recognizing that some men and women will not fit this characterization.

And I don't get the part about not being able to be kind because he feels nothing for you now. WHAT??? We can be kind to strangers for whom we have no personal feelings at all. Kindness is not conditional.

Whether religious or not, read 1 Corinthians 13:13. Love is not restricted to romantic feelings.

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Keebler
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Stumbled upon this today . . . a very nice video.

Other than examining, exploring, altering communication techniques & honing interpretation / clarification of messages of yourself and spouse . . .

in addition to trying to look at the mechanics of all that in a rather matter of fact way [so that it may not hurt so much (?)]

for your heart, your feelings, your future:

Emotional First Aid

http://www.ted.com/talks/guy_winch_the_case_for_emotional_hygiene

Guy Winch: Why we all need to practice emotional first aid

TED x Linnaeus University (Sweden) · 17 minutes · Filmed Nov 2014

Do watch from the start, so that it will all make sense. He has some very good examples.

Excerpts:

(11:00) Rejection . . . Self Talk . . .

(around 15:00) . . . Protect Self Esteem . . .

Ruminating about upsetting events - dangerous, damaging - putting ourselves at significant risk.

This urge to ruminate can be very strong. . . Even a 2 minute DISTRACTION can break the urge to ruminate. . . .


http://www.amazon.com (search by title)

BOOK - Emotional First Aid: Healing Rejection, Guilt, Failure, and Other Everyday Hurts

by Guy Winch Ph.D. - see 38 reader reviews, 4.5 av. stars

- Paperback, Kindle or Hardcover – July 29, 2014
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[ 02-25-2015, 01:19 PM: Message edited by: Keebler ]

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Keebler
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A little diversion that I hope you enjoy. Lake Tahoe is first on the list today - I replayed the sunny ski run 3 times ! [in last third of film, you might want to turn down volume as they move in to a dance bar for a bit].

A nice link to keep handy:

http://www.nytimes.com/video/36-hours/

36 Hours In . . . [so many great places]

Six-minute travel videos - The New York Times
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Gisele
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Yes my husband needs a break but from what?? He is living his life already as a single man while I am still so very very ill. He sleeps upstairs & I live downstairs in the guest room. He has not done what a grown man should have done much less a husband.

I have lived these past 5.5 years in so much pain & dysfunction as you all know. When my husband said he didn't love me anymore it was such an immense blow. I love & loved him so completely I couldn't see what was going on. He has never given me nor has anyone else given me much emotional or physical support.

It was the love for my family, just the 4 of us, that was the motivation for me to keep going. He has now altered that idea. I find the fact that I was so sick & unaware, he couldn't deal with my illnesses, thus he developed another life without me in it.

Now that I am becoming more aware of what is going on he seems unaware or unable of how to be kind & respectful or how to be a husband again. It is so painful that he was there for me, so little of the time.

I knew he couldn't handle it, but that doesn't mean he gets to be ugly to me. I don't understand how someone loving can do this. He still cares or he wouldn't be here anymore. He admitted that he said he didn't care anymore out of anger.

I feel it's unfair that he came to a place of not being in love with me, while it gets thrown in my face, while I'm fighting to get my life back. I deserve time to reflect & definitely get some couples counseling. Not sure if we should wait or not for counciling?

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Gisele
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Lisa it is nice to know someone else who lives with a man who won't respond. No one know's how truly difficult that is. My husband was also the oldest child, very important in his culture also. He choose to stay in the states. I was willing to move there for him but he decided to stay.

He is also rarely home. Not much time to talk or remember what to talk about. The kids always have issues I usually have to fix or work on. He says just let them work it out. How do kids on the autistic spectrum just work it out without causing problems somewhere else in their live's.

They both have great futures they are working on & can't be left to drown in needless issues. He doesnt know how to deal with his own kids because he could not deal with their issues. I get it, his coping skills are lacking. He is 53. He needs to learn how to cope better than his own children.

I'm sorry raising our kids took every fiber of my being. I should've been able to depend on him then. He focused on his career instead. I know watching me go thru this illness has caused him great pain & sorrow. I rarely speak of my illness. We both live in some state of denial.

I just expected more from the man I married. We have been thru so many hurdles in our lives. I never ever thought when I needed him he would bale. This was the first time in 33 years I was so broken but his love & care would have meant the world to me.

Fortunately he will never ever know how horrific this illness really was. I feel that he owes me. The only thing I did was get sick & he says I did nothing. He says it's his fault. Where to go now? [confused]

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Homebound with Lyme since Nov 1, 2009. Diagnosed with Lyme & confections in July 2011. IV antibiotic therapy for 4 & 1/2 years still on oral. Originally ill in '97 with arthritis that quickly spread to all my large joints, then CFS & fibro.

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Robin123
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Where to go now? Reclaim your life! The way you want to live it. You may need to think about that, what you want, and how you wish to go about getting it, and who may be allies with you. And yes, I think a good counselor can help you sort through this and be on YOUR side!
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Keebler
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-
Just keep in mind that a good counselor, who will be on YOUR side will help you be strong in your own right, given whatever the circumstances may be.

A good counselor is there to listen to us - to really hear us.

Yet, a good counselor does not so much take sides in that they tell us what we want to hear. They can reassure is in how they guide us to open our eyes and hearts.

They help us sort out the sometimes rough realities, help us build skills in managing emotions & practical matters and help us get stronger. This, over time, helps those rough realities not be really so rough at all.

Much is done though sharpening listening skills - cutting through to the real issues

and also how to organize the major points of our action plans (or inaction where that is appropriate).

How can we learn the difference in talking to air emotions . . . and then talking to solve differences or listening to hear others' needs? Is the signal coming through clearly? How do we ask for clarification to be sure we all understand each other?

Communication skills are very complex. And it can take a lifetime to learn some of this.

No one can change certain facts - or how others around you may feel or what they need.

How to figure out what you need - and that is not always what we might first think.

A good counselor can help you sort out, go deeper yet develop a method / a template to see things in a clearer light, with a lighter heart

and help you see various ways to think / feel about all this, to reframe,

and find various ways to work out what will best serve your sense of peace & inner strength as you move forward in life.

In addition to counseling, it seems that some kind of fun is long overdue. It may be tricky yet I hope you can find some degree of fun, laughter, enjoyment, appreciation . . . if you can't get out to play, bring play into your life somehow.
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[ 03-07-2015, 02:22 PM: Message edited by: Keebler ]

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Robin123
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What Keebler and I are saying is, it's about finding you again, and not dependent on someone else's opinions of you. So I think it takes a little exploration to do that, and perhaps best done with a counselor's assistance.
Posts: 13047 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
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