posted
I just had a quarrel with my husband last night,he told me that he doesn't believe all my physical sickness is lyme,he thinks it's mental or stress related and he thinks even it's lyme,it's not a big deal,like most of people think I guess.
I sometimes just feel so lonely,I have been sick for 2 years and it's myself to find Igenex lab and found out it's lyme,it's myself to find a llmd and all kinds information by myself,Im not a native english speaker and I always have to put a dictionary next to me to check some vocabulary that I don't understand.
My husband's english is very flurent and he never really wants to involve my stuff,its sad.
I just need his support,that's all..
Posts: 158 | From pittsburgh | Registered: Aug 2009
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I can sympathize with you.. If it's any consolation some of us are doing it on our own too..
posted
I am sorry you are not getting support from your husband.
Has he seen Under Our Skin or read Cure Unknown?
Some of my family/friends were unwilling to even do that and I just had to accept that. Some did watch the movie or read the book and now they understand so much better and give me much more support.
Posts: 186 | From colorado | Registered: Jul 2010
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posted
Feelbetter, you have all my support and prayers. Even the best of spouses/partners sometimes just don't get it. Like motherhood, I think you have to have it to get it. So many of us are dying on the inside but look pretty well on the outside; that's the problem. That's why so many people think it's in our heads. It was only after I had to use a wheelchair that my loved ones seem to get it. And even then . . .
We are here for you. What is your native laguage? Maybe someone her speaks it and can help.
Posts: 43 | From Florida | Registered: Jun 2010
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posted
I can relate. My husband of 9 years took care of me for 15 months when I was bedridden with pain: now I am able to get to work, and go back to graduate school, but that takes all my energy and when I ge home I pretty much collapse: I think he is feeling very neglected, and like I have made a conscious decision not to have more to give him: I am really afraid he will leave, and am prety distraught. I have terrible anxiety and depression (don't know if it's Lyme Bart, or just a reaction to my situation) and am really struggling: I love him but I do not know how at this point I can be a full partner in a relationship and still 'survive' in terms of work - money - and all the other stuff. I do not know how we can get them to understand what it's like to deal with this illness, day after day. PM me if you want to talk more. Pam
Posts: 360 | From New York | Registered: Oct 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Hi Feelbetter, You're not along!!! I've had no support for more than three years now.
I never talk about lyme disease anymore to family, friends, etc. there'll never ever get it. Unless you have a supported wife/husband/family/friends, when it comes to Lyme Disease it makes its that much harder/longer to get better.
I truly believe "most" Lyme victims that are married, only share a home, and that's all they share.
I have learned a lot about diseases and how people react to sickness when one can't be curled with a pill or two. O-well, that's life.
I'm lucky to be ably to workout at the gym, I know a lot of people can't with Lyme. Try to keep yourself active, maybe join a gym, or anything outside of your home that makes YOU FEEL better!
Not having support has delayed my well being, but I'm going to keep fighting as hard as I can, and I would suggest you do the same. Don't ever give up, WE know how hard it is, you have to keep trying to go forward, and you will.
Remember, you will always have us here at "Lymenet" - we're all friends!!!
Feel free to PM me anytime you need someone to talk to.
Hang in there, you're get better, Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
Thanks everyone~ I just hope my husband can show his care more,I will be very happy if he will check the lymenet with me together and try to understand,learn more and fight with this disease with me.
That is all I want.
Posts: 158 | From pittsburgh | Registered: Aug 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
feelbetter,
I'm sorry that you get little support. It is all too common.
We are always here for you.
I am praying that you will find the strength, support and resources that you need to get through each day.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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I always try to stroke my husband ego, make him feel like king of the world, (etc. etc.), make lots of time for him, have lots of sex with him , or very intimate times, feed him great food or make sure there is great food available in the house. Or I just outright bribe him with pizza.
When I have done all these things, he magically becomes the most affectionate, loving, supportive , caring , tender husband ever.
Then we usually end up having great sex after that.
I don't always start out great. Most times he is either annoying the heck out of me, or hurting my feelings, but I don't tell him that.
If I just keep telling him that he is amazing, and I just don't know how he manages it all. I tell him that I understand that his life is so tough and I am just so impressed by his ability and maturity. etc. etc. etc.
Men need lots of attention and wanted to be the centre of our lives and really babied.
That is why prostitutes and porn is such a profitable industry----in my opinion.
I always think "What do I need?" and "How am I going to get it?"
"What do I need" support and love from my husband
"How do I get it" by doing the above---boost their ego, they are just sensitive little boys.
I know in advance that my post will offend some but it really works for me and I have been married for 22 years.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
To all of those feeling isolated, please consider joining or starting a Lyme support group.
I belong to two Lyme groups. Our support group meets monthly at the public library. Our social group picks an activity for each month, and anyone can attend.
I was completely isolated, for all the reasons mentioned above. Nobody "gets it." Now I hang out with people who completely get it.
I know it sounds impossible to manage your illness and join or start a group, but people with Lyme have pretty low expectations. No perfectionism, and you never have to be at your best!
Please think about it. The isolation is as bad as the illness itself.
posted
To missing: But I think if a person said to me it's too tough to read is a excuse for me.
In my opinion,if you really care someone and want he/she to get better,Im sure you will put effort do to research,learn...etc,right?
Do you agree?
Posts: 158 | From pittsburgh | Registered: Aug 2009
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Feelbetter, I totally agree with you. People that love you family/friends should take the time to learn more about why you're feeling the way you are.
With that said, I wish I had a wife like ("Missing") LOL...
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
We are all lonely people fighting a lonely aweful
disease,that The Medical Field has turned their
backs on.(with the exception of a few)Thats why
we come to this site.Dont be angry with your
Husband or Families,most of them just dont get it
They see us sick,tired and struggling they want
us better too,but they really cant help us.We
help each other by reaching out.Thanks to the
Internet.Lets keep our sense of humor too.
Steve loved your wise crack.LOL
Posts: 72 | From illinois/wisconsin | Registered: Sep 2010
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littlebit27
Frequent Contributor (1K+ posts)
Member # 24477
posted
I read the original post but that was it.
I can relate completely. I still do all my research and stuff on my own, I still have to remember my meds and supps on my own. I still have to control myself with food.
My husband told me it was all in my head one night and it hurt me to my core.
See we had been seeing all these non LLMD docs who kept saying it wasn't Lyme or I had Post-Lyme Syndrome and since he hadn't done any research he started to believe them.
Well I finally found an amazing LLMD who told him this is REAL. And it is devestating. So now he believes me but still doesn't do a whole lot.
He has started helping more with cooking and dishes which is AWESOME. And he has also started helping with the kids more than he did.
I'm so thankful for my LLMD. Because before her...Lyme brain moment, I completely forgot what I was about to write.
At any rate. I tried having him watch UOS, he fell asleep, I tried to tell him stuff, I tried to read him stuff. He would just get annoyed and say I was consumed by all this, and I told him no Lyme consumed me and now I have no choice but to learn as much as I can about this disease and it's treatments. Because one day I want to live without pain again. Pain in tourture.
I read something someone wrote one time: "They don't get it, until they GET it" and it is soooooo true.
posted
Hang in there and have courage. you know what you know! i had to do alot of teaching to my husband at first because people don't get it. hope he comes around, hope you find support here.
-------------------- sprite8 Posts: 38 | From MA | Registered: Sep 2010
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posted
littlebit27: My situation is like yours a lot,my husband beleives doctor's word a lot and I was seeing a not llmd before,so my husband doesn't trust me.
He always thinks I spend too much time on lyme stuff or talk about lyme but I truly know if myself don't help myself or learn and nobody will help me,I will stuck this forever,I need to help myself.
Posts: 158 | From pittsburgh | Registered: Aug 2009
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I am not sure if this will help you or anyone else, but this worked for me and our marriage.
My husband was just too devasted too read more about it,
It broke his heart, especially at the thought of all the kids that are sick.,..
but do you know how my husband expresses all that ? with lots of anger and frustration,,, and confusion,,and lots of emotions,,,,
guys just deal with things differently,,,
it just may be so difficult for your husband to face the fact that the women he loves dearly is so sick.
HE is grasping at straws,,,begging God that you are wrong. Not so that he can be mean to you,
but so that he can see you well again, because he loves you so much , it causes him great pain to see you so sick.
then we discussed our entire 22 years together and realized that I had a milder type of Lyme but it had really affected our marriage.
Also, when my husband does read stuff, he gets a massive migraine, and the words go all blurry,
He has just started treatment for Babesia, and Lyme. He has a whole list of symptoms.
Also, he was working 2 jobs, doing all the house work and errands, all the yard work on our 2 acres with no complaining.
So I really cut him some slack when he said he just didn't want to read about it.
It is also his way of trying to stay calm and gentle. He also knows if he does all that research, he will get infuriated and start to rage himself. And that has happened when I did push him to read about it.
He started to rage against government, doctors, and against God. He just can't understand why God would do this to all of us. THen he just gets way too upset.
So, it is much better if I keep him out of the loop. He doesn't mind if I talk about it a little, but if I can't get out of bed, then he really takes on the role of my personal nurse.
He has no social life and he never does anything fun. He is completely devoted. I am very blessed.
But I developed this type of relationship by listening to him, and being there physically for him as much as he wants, even when I am sick, we "do-it" constantly.
I also take Amytriptaline for him as well. Our marriage is so much smoother and happier, when I am on some type of anti-depressent. I have no idea why, I am not really that grouchy,,, it is just something that we noticed,,,,so I made that sacrifice for him.
If he is going to be my personal nurse,,,, he sure deserves many rewards and paybacks. I don't want him to be my slave,,,I love him dearly.
Sorry for the long post, but Lyme can destroy marriages and I want to help save some.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
I am sorry you don't have your husband's support. OF COURSE you need it! He's the person closest to you.
I feel very lucky..my DH doesn't quite "get" it all, but he tries. And he's willing to do whatever I need.
I sometimes worry that someday it's all going to be too much for him, but he says he knew going into this that I had problems (I have devastating back issues that predate Lyme) and this is just one more issue to deal with.
I do the best I can with what I've got. There are days when I'm able to cook supper, so I cook supper.
There are days when I can get more done in the house, I get more done in the house.
There are days when I can't do ANYTHING, so I don't do anything. I'm trying. Really.
I can still listen to him when he's had a hard day at work, and he needs someone to vent to. I can answer the phone when he calls at lunch b/c he just needs to hear a voice from someone who cares about HIM, and to know that someone who cares is axiously awaiting his return home.
It's the little things. Right now I can stand to cuddle into his arms at night, which is comforting to him and myself both.
I keep trying to remember the little things..things that are important to him.
Posts: 624 | From Oklahoma | Registered: Jun 2010
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
When I first came down sick so did others at work with the same bizarre symptoms.
One woman concluded that it was taking her so long to get well because she did not have a spouse at home helping her.
I told her it would be worse to have a spouse at home who made this worse instead of better and not all spouses are supportive.
You sound very strong in that you are looking out after yourself and doing what you can.
STress does cause this to be worse for me and many others.
Hoping you can find a way to cope and adjust with doing this on your own and still have a spouse in the house.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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