How do the people fighting chronic lyme undergoing IV treatment cope with signifigant others that won't:

Listen to what you have to say when you have been to the doctor-reply with things such as: " Looks like this isn't going to be over anytime soon, maybe you should stop wasting the insurance company's money--you are no better than you were 6 months ago."--"Just get off these abx and get back to work." That was my husband's reply to finding out I have to go another round of mepron for coinfections and still on two antibiotics.

I have invited him to my doctor and my psychologist appointments in hopes a third party may make him understand more, down loaded articles and his responce is,"I do not want to read anything or hear anything that is going to tell me this is going to take twice as long than it already has to go away." when I first went to the lyme doc(the one and only visit he has come to)_ they stated that the usual course is 6 months depending on the patient and how long they have had the disease. Those who have been infected longer may take a longer course of treatment.--he did not hear the later part. I have had this since 1990 as far as we can track it. I have babesia and erhicliosis as well. Not to mention fibromyalgia, IBS, Pelvic floor dysfunction, Intersticial cystitis, severe depression and anxiety, osteo artritis etc etc etc--the pain is unbearable at times even with pain meds on board.

When I say I cannot do things around the house--I get a lot of flack about making phone calls, cooking dinner, laundry and other household chores because," I am home all day doing nothing." Phone calls for particular things that need a brain to make them are hard at times due to severe mental fog--no sympathy there just "it is only a phone call!"

It is all about finances and the house not running smoothly--i was the one who always held everything together and my husband spinning his wheels and working his a** off and us being six feet under in debt with no light at the end of the tunnel. when turned down for SSDI-he said oh well-guess you are going to HAVE to go back to work. In my other ear is my doctor saying absolutely no working-not even part time right now.

Was told yesterday I must find a way to at least make some money under the table if I "insist on persuing disability"--you could clean houses he says--I cannot even get my own done

"If you would quit laying around and get out more you would feel better--go have coffee--do something! he says, mind over matter."--to some extent this is true but if I am running a fever getting out makes it spike. I suffer from severe brain fog and blurry vision which scares me at times to drive. when feeling up to it I do take walks and do some things around the house.

I do do the grocery shopping and pay the bills and clean when I can already--not enough--nothing is for him.

His body language is such that he does not want me around him--layed on his lap last weekend to watch a football game and asked for my heating pad to which he responded,"
The heating pad isn't going to do you any good--get up and move around and huffed--wasn't interested in cuddling with that attitude and went elsewhere in the house.

I acknowlege his feelings of frustration, give him foot massages, try and have dinner ready when he comes home--try and talk about his day--I get one work responces while he has his head in a book or on the television--don't even remember the last time I saw his eyes or experienced a real hug or kiss even on my initiation.

I am kicked out of the bed due to my restless nights when I toss and turn because i wake him up and he has to work. My new bed is the aerobed in the livingroom.

He will not shop, run an errand (such as picking up a perscription) on his way home from work if I need anything because I am too ill to get out. If I do ask, he gets insulted that I would have the nerve to ask him to do anything after working all day--he does work 10 hours most days and is tired, I know--but the shoe has been on the other foot and I would do anything for him. Does absolutely nothing but work--heck he does not even pick up his plate or glass when finished with it--nor do the kids because they see him doing it.

I have been advised to move out by many folks on another board I talk on and friends (what few I have left)--but where and with what --no income and no savings--absolutely no extended family-last living relative died this year--where am I going? To a shelter is some peoples suggestion--I do not think so.

So I try and not take these things personally, pray a lot for him and understanding.

My son is my biggest advocate--he has a project at school due called,"A different kind of Hero" he is taking pictures of me running my antibiotics and doing things like helping him with his homework to make a collage. When given the assignment he told me that I was his hero for fighting so hard to get better--so at least one is on my side. along with the cat and the dog.-LOL

Going out job hunting--I can see it now at the interview--I can only show up when I am having a good day--sometimes I can time them because they run in cycles. I can work 4-7 days a month but cannot tell you which 4-7 days until I wake up--but I am a great employee--LOL I have thought of crafts I can make and sell or consign I am good with my hands. On my good days I devise these plans only to fall off the cliff of recovery so hard that I am like the cyote in "Roadrunner" at the bottom of the canyon with my imprint of my body several feet under the rocks.

My job is to get well right now. We were a middle class family gone to the working poor and qualify for nothing as far as financial assistance.

I feel sorry for him and understand his frustration, prior to the collapse I had last January that led to the lyme diagnosis, I was out of work nearly a year for acl reconstruction that would not rehabilitate, the previous year, cspine fushion, hysterectomy the year before that--so he has compasion burn out, not to mention he himself has a new diagnosis of ASperger's with depression himself--asperger's inhibits folks from being able to have empathy and read emotions correctly or give support.

When I found out about the Asperger's Syndrome I did a lot of research because I wanted to know what it was because it was a part of him.

The bottom line is it hurts so badly--our marriage is dead in the water at this point.

anyway I have drone on and on--if there are any of you experiencing anything like this I would appreciate what you do to cope. I need help I am on my last nerve here.

Thanks for listening

Your post caught my eye so I read it and was moved to respond.

I'm so sorry that you're dealing with a non-supportive spouse at this time and he's making things harder on you. When you explained his mental condition it made him sound less of a jerk.

If you have nowhere to go for help besides a shelter I wouldn't advise it. Try as best as you can to hang in there. Think of your self first and getting your health back. Make that a number one priority.

I'm kinda in the same boat. My spouse has mental issues and when I became very ill last November he went off the deep end and did absolutely nothing for me. Wouldn't drive, messed up any errand, became a terror. His psychiatrist said it was for attention. I don't know if this applies to your spouse.

Anyways, I kicked him out and we're separated but still see each other. Now he helps when he can which I can't figure out.

On days that I'm really sick I regret having to be alone. So think long and hard about what to do.

Lately I wonder what role Lyme has played in my own inability to deal with my emotions.

i did leave for 6 months. at the point that i was absolutely DONE he came around. by the grace of God i wasn't as done as i thought and came home.

mostly it is very good to be home. just sometimes the resentments (from my illness) get the best of him. he gets over it. holidays have always been rough here.

i used to think it was a "build-up of poisons" in other words, lack of sex (;

at any rate cathy, you have to spend your energy healing. i know the emotional drain you feel. it takes a LOT of energy.

a dr suggested to me to keep a journal. fancy word for diary i guess. i'd reccomend lock and key tho.

lately i have been drinking a lot of yerba mate tea. the instant kind. i sweeten it with a little bit of grade b maple syrup.

i get both at the health food store. really seems to help with energy! and it tastes good.

more than half of my days before, it was about all i had to walk across the room and to cook dinner and do dishes. now i do better, and feel better attitude wise.

i drink the tea all morning and half the afternoon. if you try it, take it easy on the syrup, and use real grade b! it has more minerals.

maybe your hubby needs a hobby. i think that would help mine. got to be a drag coming home to sickness every day... not as bad as HAVING the sickness though!

good luck, hug your son for me (: i have one of those too!

Thanks for the tip on the tea, I will look for it.

Have a Happy Thanksgiving

My fiance ( now x fiance ) pretty much did the same things to me. I can give him credit though for never saying anything derogatory or downgrading to me BUT

He did:
watch me suffer and told me to exercise, tune me out when I was talking or complaining, and NEVER and I mean NEVER clean. He would do the same exact thing your husband is doing to you- let the dishes as close to the sink as possible,

put a new roll of toilet paper ON TOP OF the metal thingy that holds it, drop his clothes OUTSIDE of the laundry basket. He drove me nuts and ya know what? I Cared and ranted for oh

about two months. I then decided that the best thing for me was to just let it go. Thats hard to do, and again, he never said anything mean to me- that would have got to me. He never told me to get up and clean, etc. He simply just didnt do it and he surely never had dinner waiting for him when he got home!

Its tough. I have close friends that tell me to this day to leave the situation. My ex fiance still lives with me btw. And go where? To my mothers? Nah. I doubt her townhouse could fit me and my kids, and lets face it

as long as he is still here helping with the kids, Im 100 percent grateful for that.

In other words, I guess what I am trying to tell you is to get whatever you can out of him, don't drone on what he doesn't do and the next time he tells you to get up and do it yourself, vomit in his workshoes.

It took my exfiance OVER a year to be able to tell me what the bacteria that causes lyme is. Now that is just sick, therefore, I get all I can out of him

and ignore everything else. I gotta. Otherwise, I'd be nuts and no where near better.

I hope this helps in some way.

There will come the time that you are better again. I suggest you pack your bags THEN, laugh in his face and walk out the door if he doesnt come to his senses.

Your relationship sounds like it's currently in limbo. Instead of packing up and moving out, I'd sit tight until you feel much, much healthier. Sometimes things have a way of working out in least expected ways. And I have to question your husband's recent Asperger's Syndrome diagnosis. Doctors told us our little boy was autistic, had Asperger's (among many other psych. diagnoses) for 4 years. He was diagnosed with lyme and all of those symptoms disappeared within 3 months. He doesn't even take any of the 4 psych meds he'd been taking for years.

I don't know anything about your tick bite, or if your husband happened to be in the same area with you. But, I would see to it that he sees a LLMD to rule out lyme.

My husband is a good man, a very good man and he treats me with respect and compassion. But he'd sometimes push me further than I was able to go: make phone calls, work on our website, arrange this, arrange that. I simply wasn't able to and he was unable to figure out why I couldn't do these things while I was sitting to 'help out' at home. He underestimated the weakness, pain and confusion I experienced. Until I convinced him to see a LLMD and he was diagnosed with lyme. Now we're both on the same page.

I don't know the particulars of your husband's Asperger's diagnosis, but you probably should look into it here at lymenet.

The Crime of Lyme said it best. Hang in there and don't leave yet.

My daughter and husband have lyme and he's no peach either at times. I won't make any decisions until after I'm well.

Quite frankly, I don't need the extra stress right now.

I wouldn't be surprised if your husband has lyme or a co-infection.

Once I started to get better I could see the symptoms in my mate, but had no clue when I was my sickest.

Chris was very sick with babs, mepron is knocking it out of him. He laughs again and I see bits of the person I met 9 years ago.

There is hope. It did take almost a year from the time a mentioned lyme until he became too sick to function and go to the llmd.

quote:

---

Originally posted by griswoldgirl:
I do not want to whine that gets me nowhere, however it may start sound like whining before I am done--if so I appologize.

How do the people fighting chronic lyme undergoing IV treatment cope with signifigant others that won't:

Listen to what you have to say when you have been to the doctor-reply with things such as: " Looks like this isn't going to be over anytime soon, maybe you should stop wasting the insurance company's money--you are no better than you were 6 months ago."--"Just get off these abx and get back to work." That was my husband's reply to finding out I have to go another round of mepron for coinfections and still on two antibiotics.

I have invited him to my doctor and my psychologist appointments in hopes a third party may make him understand more, down loaded articles and his responce is,"I do not want to read anything or hear anything that is going to tell me this is going to take twice as long than it already has to go away." when I first went to the lyme doc(the one and only visit he has come to)_ they stated that the usual course is 6 months depending on the patient and how long they have had the disease. Those who have been infected longer may take a longer course of treatment.--he did not hear the later part. I have had this since 1990 as far as we can track it. I have babesia and erhicliosis as well. Not to mention fibromyalgia, IBS, Pelvic floor dysfunction, Intersticial cystitis, severe depression and anxiety, osteo artritis etc etc etc--the pain is unbearable at times even with pain meds on board.

When I say I cannot do things around the house--I get a lot of flack about making phone calls, cooking dinner, laundry and other household chores because," I am home all day doing nothing." Phone calls for particular things that need a brain to make them are hard at times due to severe mental fog--no sympathy there just "it is only a phone call!"

It is all about finances and the house not running smoothly--i was the one who always held everything together and my husband spinning his wheels and working his a** off and us being six feet under in debt with no light at the end of the tunnel. when turned down for SSDI-he said oh well-guess you are going to HAVE to go back to work. In my other ear is my doctor saying absolutely no working-not even part time right now.

Was told yesterday I must find a way to at least make some money under the table if I "insist on persuing disability"--you could clean houses he says--I cannot even get my own done

"If you would quit laying around and get out more you would feel better--go have coffee--do something! he says, mind over matter."--to some extent this is true but if I am running a fever getting out makes it spike. I suffer from severe brain fog and blurry vision which scares me at times to drive. when feeling up to it I do take walks and do some things around the house.

I do do the grocery shopping and pay the bills and clean when I can already--not enough--nothing is for him.

His body language is such that he does not want me around him--layed on his lap last weekend to watch a football game and asked for my heating pad to which he responded,"
The heating pad isn't going to do you any good--get up and move around and huffed--wasn't interested in cuddling with that attitude and went elsewhere in the house.

I acknowlege his feelings of frustration, give him foot massages, try and have dinner ready when he comes home--try and talk about his day--I get one work responces while he has his head in a book or on the television--don't even remember the last time I saw his eyes or experienced a real hug or kiss even on my initiation.

I am kicked out of the bed due to my restless nights when I toss and turn because i wake him up and he has to work. My new bed is the aerobed in the livingroom.

He will not shop, run an errand (such as picking up a perscription) on his way home from work if I need anything because I am too ill to get out. If I do ask, he gets insulted that I would have the nerve to ask him to do anything after working all day--he does work 10 hours most days and is tired, I know--but the shoe has been on the other foot and I would do anything for him. Does absolutely nothing but work--heck he does not even pick up his plate or glass when finished with it--nor do the kids because they see him doing it.

I have been advised to move out by many folks on another board I talk on and friends (what few I have left)--but where and with what --no income and no savings--absolutely no extended family-last living relative died this year--where am I going? To a shelter is some peoples suggestion--I do not think so.

So I try and not take these things personally, pray a lot for him and understanding.

My son is my biggest advocate--he has a project at school due called,"A different kind of Hero" he is taking pictures of me running my antibiotics and doing things like helping him with his homework to make a collage. When given the assignment he told me that I was his hero for fighting so hard to get better--so at least one is on my side. along with the cat and the dog.-LOL

Going out job hunting--I can see it now at the interview--I can only show up when I am having a good day--sometimes I can time them because they run in cycles. I can work 4-7 days a month but cannot tell you which 4-7 days until I wake up--but I am a great employee--LOL I have thought of crafts I can make and sell or consign I am good with my hands. On my good days I devise these plans only to fall off the cliff of recovery so hard that I am like the cyote in "Roadrunner" at the bottom of the canyon with my imprint of my body several feet under the rocks.

My job is to get well right now. We were a middle class family gone to the working poor and qualify for nothing as far as financial assistance.

I feel sorry for him and understand his frustration, prior to the collapse I had last January that led to the lyme diagnosis, I was out of work nearly a year for acl reconstruction that would not rehabilitate, the previous year, cspine fushion, hysterectomy the year before that--so he has compasion burn out, not to mention he himself has a new diagnosis of ASperger's with depression himself--asperger's inhibits folks from being able to have empathy and read emotions correctly or give support.

When I found out about the Asperger's Syndrome I did a lot of research because I wanted to know what it was because it was a part of him.

The bottom line is it hurts so badly--our marriage is dead in the water at this point.

anyway I have drone on and on--if there are any of you experiencing anything like this I would appreciate what you do to cope. I need help I am on my last nerve here.

Thanks for listening

Cathy

---

Yesterday I came up with a quote" I feel like I am talking sign language to everyone and no one on earth understands what I am saying" It is so lonely.

I have 1000 thoughts in my head at times but the lyme brain does not connect to my mouth correctly and nothing comes out the way I want it to.

It is really hard when they see me have a few good days and then end up in bed as I have for this entire week herxing--they do not understand why it waxes and wanes so much-heck I don't--I try and just hold on with both hands and ride the rollercoaster at the best of my ability.

It is nice to know i am not alone--I wrote him a extended letter the other day explaining how if he wants out to just let me know--I do not want him taking care of me out of some obligation or pitty, I want it to be out of love. He has been a little warmer since then-actuallylaid in bed with me and just held me the other night while I twitiched and sweated while herxing--it was the best sleep I had in a while-just because for a few hours I thought he actually cared.

again thanks for all your replies, keep them coming

If we were independently wealthy and did not have to work or worry about paying the bills/taking care of ourselves and our children, I bet those significant others would have been booted out a LONG time ago!

One thing that helped a lot was a woman from her reached out to me in email and we talked on the phone over the weekend--it was nice to talk with someone who speaks lyme. I am going to call her back and make it a habbit to do so and reach out myself.

I want to start a support group but I am too tired and sick right now to do so but when I get stronger I would like to.

I am doing what I can and have drawn the limits to what I cannot do. We decorated the tree this weekend and I have a ton of outside lights etc which are not going up this year because I am the one who has to do it and undo it and I am not up to it. Period!

The only thing I have to push to do is cook and shop because my teenager is on the swim team now and is not home until 9pm from school. The house shows it too, I have to hug her today when she gets home--I did nt realize how much she was helping. If I don't shop we don't eat--my husband will not do anything on days that he works and over the weekend he rests ie lays around and watches tv.

I am feeling awful today from mepron reaction and I have to push myself to get in the shower and to the store--it sucks but what choice do I have? The kids have to eat and so do I.

I will probably be in bed the rest of the day because of it--I cannot seem to find a balance with this disease. when I feel better and do anything at all it seems I am down and out again in the bed for anywhere from a few days to a week. Lovely rollercoaster ride we are on--huh?

Sorry you are going through this. This is the worst as I have experienced it, but not as badly.

I told my husband today, that family can do a lot of damage when it comes to this disease. My husband for a long time was telling me I didn't know I had lyme and has not helped me find help. I have had to do all my own research etc, when able and was asking me when I was dying on the couch and having seizures type episodes and stoke like.

It is hurtful and unexcusable. He is much better now, but has resisted me on getting my son tested as well. He works hard and does help around the house, but then, I have never catered to him and won't start now, as I am not like that.

It's abuse. Pain and simple and I think we have all expereinced it from one family member or another. But truly devstating when it is your spouse. My son gets me through this, and the fact that I beleive my mother had lyme and died 2 years ago.

My husband is on/off these days but much better than before. He is more supportive than he was. This happened b/c everything I have said and reserched as proven to be true in my case. I dont' think this will work with your husband from what I read, but you can just keep at him until maybe he understands. This was my case.

Your son sounds truly amazing. Aren't our children wonderful? My son is only 3 and should never have had to witness me go through what I did, and he tries to cheer me up and knows when I am feeling bad.

Wishing you luck. It is good therapy to vent like this, we need it.

What popped into my head is a back up plan. You might consider getting your name on a low income housing list.

I wasn't married when I came down with lyme but did need to downsize. I put it off for a long time.

I was not aware of low income housing nor that I could have moved in with no income at all.

Look into what your options are just in case you need to seperate yourself from the situation for a while.

I know waiting lists are very long so it is good to get on one as soon as you can.

I know stress makes things worse for me. I also know that I have to limit the amount of time I am around people for the most part and only be around positive, uplifting people.

I know I certainly miss my home, but I don't miss the stress that went with it.

I don't think it is good for children to learn it is OK to show disrespect towards females or males for that matter..especially when it is supposed to be your safe place.

I don't think it is good for children to learn it is OK to show disrespect towards females or males for that matter..especially when it is supposed to be your safe place.--THIS I TOTALLY AGREE WITH. I DO NOT LIKE THE MESSAGE IT IS GIVING MY 16 YEAR OLD DAUGHTER. THIS TEARS ME APART!!!!!!!!!!!!!

I AM LITERALLY STUCK IN A CORNER-NO MONEY OF MY OWN, UNABLE TO WORK, NOTHING, NO SISTERS, BROTHERS, AUNTS UNCLES PARENTS-OR EVEN CLOSE FRIENDS THAT WOULD TAKE ME IN WITHOUT HAVING TO PAY RENT--I MOVE, LEAVE THE KIDS WITH HIM AND THERE IS NO MONEY FOR MY HUSBAND TO GIVE ME--AND i CANNOT TAKE IT AWAY FROM THE KIDS.

i AM EXTREMELY UPSET, ANGRY AND FEELING SO CLOSED IN TONIGHT--THE HOLIDAYS ARE NOT HELPING AT ALL. i LOST MY MOM 30 YEARS AGO 2 DAYS AFTER CHRISTMAS AND THIS CHRISTMAS i REALIZE MY MARRIAGE IS DEAD TOO-BUT I CANNOT DO ANYTHING ABOUT IT--SOME FOLKS HAVE SUGESSTED A SHELTER--NO WAY WHERE AM I GOING DURING THE DAY--THEY KICK YOU OUT ON THE STREETS DURING THE DAY.

I HAVE GIVEN UP AS MUCH CONTROL AS I CAN AND PRAY THAT GOD WILL INTERVEIN AND SHOW ME WHAT TO DO.

I DO HAVE ONE FRIEND IN GREENSBORO--BUT AGAIN I NEED MEDICATION, FOOD ETC AND NOT A DIME TO MY NAME--SURE I COULD GO TO SSI AND UPDATE MY SITUATION--I AM IN THE APPEALS PROCESS AND DO NOT KNOW IF THIS IS THE TIME TO CHANGE STATUS--I DO NOT WANT THE PROCESS TO START OVER.

I FEEL SOME DAYS THAT i AM IN HELL ON EARTH, I PRAY AT TIMES FOR GOD TO JUST TAKE ME--I HAVE HAD A FULL LIFE--I HAVE HIKED THE at--RODE THE RAPIDS ON THE SNAKE RIVER IN CANADA, HIKED ON A GLAZIER, BEEN TO HONDURUS ETC ETC--I HAVE BEEN AND DONE MORE THAN A LOT OF PEOPLE DO IN A LIFETIME---THEN THERE ARE THE KIDS--CANNOT CHECK OUT ON THEM.

i NEED FRIENDS AND AM TOO DAMN SICK TO GET OUT AND MEET ANY HERE NEAR BY--FRIENDS FROM A YEAR AGO HAVE GROWN AND GONE IN DIFFERENT DIRECTIONS--I AM A DOWNER TO HAVE AROUND i THINK--THEY ALL TIRE OF MY ILLNESS.

I THINK IT MAY BE TIME TO TAKE A COUPLE OF WEEKS OR A MONTH OR SO AND GO TO STAY WITH MY FRIEND IN GREENSBORO--JUST TO BREAK AWAY AFTER THE HOLIDAYS--IT IS JUST THE ALMIGHTY DOLLAR IS CONTROLED BY MY HUSBAND AND WE HAVE A JOINT SAVINGS WITH JACK SH** IN IT BUT i AM THINKING OF HITTING IT AND JUST RUNNING AWAY FOR A WHILE TO CATCH SOME SANITY--I AM LOOSING IT HERE

i WANT TO WRITE A LETTER OF RESOGNATION--THE THINGS i AM EXPECTED TO DO-HOUSEKEEPING, ERRANDS, KIDS SCHOOL AND SPORTS ACTIVITIES, SHOPPING AND CLEANING WERE DIFFICULT WHEN I WAS HEALTHIER--THEY ALL LEAVE THEIR STUFF EVERYWHJERE-NO ONE PICKSUP AFTER THEMSELVES ETC ETC--I WANT TO WRITE THIS LETTER STATING MY DEMANDS AND THAT UNTIL THEY FOLLOW THEM I AM NOT COMING HOME.

SORRY TO SPOUT OFF-A BIT OF LYME RAGE--KAM JUST HIT A BUTTON THAT I HAPPEN TO BE WEARING VERY LARGLY TODAY!!!!

THANKS FOR LISTENING

cATHY

Hey is your name for the Griswolds of movie fame. I love those Vacation movies.

I have an idea for you, and no it is not a joke. I am serious. You need some help. The idea you had about going on strike is a good one.

I suggest since it is the holidays and you have no money, that you make a decree and wrap it up and give it to your less than stella hubby at Christmas.

Take some paper write it out in "HEAR YE" form and make it as fancy as you can with what you've got around the house. Write about being sick, and it has been 'decreed by the powers above that you can not go this trip alone'. Wrap it up and leave it from Santa for your hubby on Christmas.

The combination of it being Christmas, and your writing your decree pleading your case for understanding just might get through to him.

Either way it will make you feel better, and show him on this day of giving how he has given you no other options other than pleading your case in an official holiday decree.

I know this sounds silly, but I think it might get your point across in a way that talking about it couldn't.

I had a very resentful hubby myself when I was at my sickest so I can relate.

Good luck to you with whatever you choose to do. I'm glad you met someone here who has been able to be a friend to you. i wish you the best.