Lyme Disease Support Group

JoMama, I am going to work on that. I know that with most men, they respond well to praise. I read your post this morning and went back to the bedroom and tried to tell him how much i appreciate him. We did have a better conversation about some of our issues today, but he still refuses to talk about the lyme. I told him how I felt, but he didn't care to respond to the lyme topic. Thank you for replying <3

Thanks a lot but it what makes me happier is that you could find some wisdom within it.

There comes a point where you have to realize that whether or not you have the support from the people around you, your obligation is to get your health back.

You can't force someone to listen to you if they don't want to. All you can do is respect their choice.

Regardless of how someone feels about your situation, the Lyme will continue to to do it's damage so it only makes sense to carry on with or without them.

Every true fight in this world we fight alone.

I hope some of this makes sense because I am having major brain fog right now and I feel so dumb

I'm sorry you're dealing with the brain fog right now. I think that has been the worst part for me, because I can deal with the pain and nausea, but I don't know how to function when I feel like an idiot and can't formulate my thoughts .

today I feel okay as far as the brain fog goes... I'll be thinking of you!!

Thank you for your kind words.

Amanda, I know your feelings so well. Even if your hubby does not see the efforts you make as enough, keep up the good feeling about yourself and what you do accomplish! I will be thinking about you with this issue and hope things improve between you and him.

I was just staying with a friend in New Mex. at her house for the last month with another lady, and had to be once again in a roomate situation that I have not had to be in since that time I mentioned.

Thank God these two women were Christians, as they were much more understanding of my being on disability and not working, even though they both do work. I also did what I was able to around the house, and felt good about what I did.

But I also make sure now, that I dont stay in any one place too long, to become an obsession for someone around me. This seems to be the key. And, I also dont need them to become my obsession! I can relate to your hubby having OCD. Big problem for me since getting Lyme.

I will PM you about the disability. I really feel for you in your situation. You seem like a really sweet person, and I hate to think that anyone is making things even harder for you at home.

Our home should be our one place to find some peace and rest when we are sick. I really pray that you can find this Amanda.

Sorry my responses to posts are so delayed. I am always moving about now.

Post edited by: VicMac, at: 11/06/2011 02:38 AM

I am able to talk to my hubby about Most things to a degree... He is scared (my hubby) & I guess maybe if we don't talk about it he won't have to confront the fact that something major is wrong with me.

Try talking to us about most of it & keep him in the loop, but lean on us who do get it for most of the support you need.

Unless I am really bad I try to bring him a snack in bed before we go to sleep, & in little ways cater to the things I know makes him feel special & then over time from me doing it he became more receptive.

We all deal with things different & if he is a good man other wise there are ways for you to remind him he is a good man & you love him & need him with out you being needy, if that makes sense.

In box me if you ever need to talk! My hubby has Lyme & he still can't handle me being sick, he needs me & loves me so we can talk to a degree

In regards to your spouse and the idea of support.

My wife, bless her heart, refused to believe I was sick with anything serious until the Lyme test came back positive. After that she was more understanding of the Tiredness and general malaise. But that was about it.

She fully believes that I should be able to fight through all the crap and live life like she does. I simply can't do it.

It wasn't until I had actual physical manifestations of disease that she finally go that I was sick (My feet and knees swelled up to ungodly proportions about 3 weeks ago...and now the skin on my feet is peeling off)

Now she seems to be on board with fighting the illness, but this doesn't mean she is completely convinced. CAtty comments can really cut one to the core.

I also notice that if I show any sign of improvement, she will use that as a reference to suggest that I am now all better and I shouldn't be tired/sore/gimpy/muddled. In other words, if my hands stop shaking for a day, if they start shaking again I must be faking it.

I guess she's just as desperate for a cure as I am. But it definately is a kick in the teeth when it occurs.

Im a 15 yr old girl living in Canada and ive gone through the same nightmare. I went through every specialist in the hospital and back again and no one would help me. I was diagnosed with Somatoform with conversion disorder. They tried to say that my mother was crazy, that my father and brother were abusing me. We got so worried because the hospital had taken away other teenage Lyme patients before. After that diagnosis we kept searching and found a Lyme doctor in San Francisco. My family had to pay for all of my medicine and flights straight out of their pocket.

After all of that, i can barely look at a hospital without feeling sick and angry. And even though im just a kid, ive gone through the same things. I have friends who say "You dont look sick," or "Well you went out on halloween, but youre too sick to go to school?" Ive had teachers tell me that im lazy. Everyone around me is trying to tell me im not sick, and how i should live my life.

but here is my advice to you- Forget them. We are fighting something here that no one will really be able to understand. I have this wonderful psychologist, and he told me something that really did change my life. He said that school and work didnt come before your health. And i agree. Tell your husband whats happening to you- maybe show him some research. but most importantly, your happiness and health are the most important things. hang onto that.

I hope you found this helpful, and thank you for reading all about my story.

We have all been there with the depression. the thing that used to stop me every time was my family, and how i couldnt hurt the people around me. but the way to take back control is to give yourself a reason to live, not a reason not to die. it makes all the difference.

Keep Fighting