posted
hey guys, i hope you are having a good day. i wanted to get some advice or thoughts from you. having a relationship to me is a very good experience. but i think it is very difficult to be a partner in a relationship and deal with the cognitive symptoms of lyme. when i know i cant think then it is no problem, i ask for help. but there are times that i think i know what i am reading. so i stand adiment about what i believe. this can cause chaos and arguments. have you guys found any good ways to deal with this stuff????? thanks. b
Posts: 112 | Registered: Jun 2004
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Oh geez! At least you know you have a problem!!!!
When I didn't know about Lyme or what was wrong with me....... The cognigtive problems really played with my mind. No pun intended!
My husband and I would argue about facts, times, dates... blah blah blah. I was becoming paranoid and had panic attacks.
Now I just answer w/ my generic, "I don't remember".
I have good days and bad days cognitively. Lately mostly good and getting better.
Sending you peace of mind,
-------------------- HEATHER
Posts: 1974 | From ABERDEEN, NJ 07747 | Registered: Jan 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
In my house, we've really turned it into a joke.
I've put the remote in the refrigerator, rented movies I just saw two days earlier, completely forgotten things I was supposed to do (absolutely off the radar!). I'm always losing my words and then trying to overcompensate.
I left being right a long time ago. We have a saying: Would you rather be right, or would you rather be happy?
By now, I should be downright joyous!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
When I was in a relationship there were Lyme issues and moments. I'd have to go through something point by point. It was Friday, right? It was 2 pm, right? You had on a red sweater, right? You wanted eggs, right?... Always saying it quietly and from my point of view, of course.
If I ever have another relationship he will have to be LL.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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partnerinlyme
Unregistered
posted
I'm on the other side of the fence. I am the spouse of a lyme patient who has had lyme for over 20 years, undiagnosed and was diagnosed a year ago and has been on meds since then.
It is very hurtful when my spouse talks down to me and says that it is my imagination. Now, the major depression has set in and has started to see a therapist and psychiatrist which I guess is good but I knew it would stir past hurts up.
I really don't know what to do. Now my spouse says that might want to move out for a while. Doesn't know where our relationship is going to go. We've been married for over 20 years.
What ever I say is wrong, I don't know what to do.
posted
thanks alot for taking the time to respond. i appreciate it. heatherkiss, i am glad your days are getting better. andie333, i like that attitude. thanks, vitch. partnerinlyme, i don't know what to say...i hope seeing the therapist will help you guys deal with lyme and ways to deal with eachother in a positive way. b
Posts: 112 | Registered: Jun 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Partner, I'm with B -- hopefully, therapy will help your spouse get some better perspective and will also provide a place to vent.
I've experienced the Lyme depression you mentioned, and it can be really rough. I have to keep reminding myself it's a symptom of the disease; that's the only way to stay sane.
I'm also seeing a therapist, just so I don't have to saddle my SO with all these sometimes irrational, nutsy feelings.
I was undx for 9 years. For the past 4, my health has been steadily deteriorating, and I've been sent from one specialist to another.
As the exhaustion increased, so did my frustration and sometimes my anger with myself for not being able to do so many of the things I used to do. I know there were times I projected those feelings on my partner.
Projection is a powerful thing.
Plus, once I started abx, a lot of the neuro/ psycho stuff kicked in. I was an emotional wreck, uncomfortable in my own skin and really p+++ed that this was part of my forseeable future.
I also hated (and still do) putting another person through this. I had never been sick and didn't have much tolerance for it. As our lives got smaller and smaller, I found this all more and more difficult.
We have a pretty open relationship, so we were able to talk about a lot of these things. But there have been moments (there was one today, actually) when I found myself picking a fight... I have no idea why, really. Feeling sorry for myself? Trying to drive this person away? Just being emotionally immature? Maybe it's a combination of all those things.
I do know this is tough going. I had first gotten the therapist, because I figure we would be in couples therapy. After one session alone, I knew this was mostly my problem.
Conversation, prayer (if that works for you), laughter. They all help.
If you'd like to talk, send me a pm. I don't know if I can help, but I'd be happy to try.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Guys, please forgive this long post. This is a very relevant topic. Cognitive problems and relationships is something I've thought about a lot (when I can think). ANDIE, you sound like you've adjusted amazingly well.
VITCH, I relate. I have my family do that. I say, "I'm trying to internalize it, process it, so it's WHAT date?..." If they get frustrated I say "I won't remember." (HEATHER's thing.)
BLUEOCEAN, I hear you! This month I was disowned, for a thankfully brief period, by a son and his family over being adamant. I, too, study a lot, have experiences behind me, excellent logical reasons for what I believe. It takes a lot of good data to convince me otherwise, but I don't mind being convinced. It's very hard to maintain a sense of integrity and still to let go. I learned that the relationship (in the case of my son) was everything; any relationship worth maintaining is.
A wise person told me "Next time you have something to say on a sensitive issue, write it down, print it out and save it, but don't say it; that way you've said it and you can let go."
I hope by posting here, it'll give someone HOPE that a relationship can survive...despite the rocks in a REALLY rough river. My husband has stuck by me for all these years of uncertainty, of others (including himself many times) thinking it was all in my head, of the ravages of the illness, of the "I'm worse...again" thing, of the "seeming to be well but so very ill," of the "one-sided work situation at home and financially"...
It seems very one sided, all give on his part, all take on mine. Sometimes it has seemed all the suffering was on my part, Hell at times, so lonely, and no one can/could take it away or do anything about it (didn't even know what I had for years). But who can measure the suffering of either?
I can never be sufficiently grateful to him, but it's been REALLY hard. If we hadn't been very good friends to begin with, and hadn't worked through so many other issues, our relationship wouldn't have survived. Friendship is what we can fall back on. And on commitment, BIG time! It seems I have nothing much to give him in return. Except maybe the same intangible things: committment, faith, not giving up in hard times; and choosing, again and again, still to love. And to keep finding common ground.
PARTNER, I'm fairly sure my husband feels a lot of what you feel, partly because he's said so -- usually when we're in a "I feel..." "Well, I feel..." back-and-forth backlash of feelings.
It's amazing to me the things that pop out sometimes, in the stress of this illness. We had a crisis big time a couple years back, when I was extremely ill and the stress was tangible, like flame. If he'd only said, "I'm sorry" then, it would have blown over, but he didn't... It still hurts a bit, but he really had no way to understand, to know, what torture my body was to me. And I could only begin to understand what it was like for him. Surprisingly, our crisis brought us closer, though that seemed impossible at the time.
I had to give up wishing to be understood; Lpkayak on the "never posted before" topic said that sometimes the other person has to be in denial, for his or her own sanity. And, despite cognitive problems, WE have to believe in our own sanity (see "brain messed up but mind sane" topic). Both the person with Lyme and the Lyme partner have a different, emotionally true, perspective. It's hard to build a bridge between them.
I've met a few therapists. One wanted to convince me that I wasn't ill, that I didn't "have anything." (Idiots are not rare.) The profession is, I think, ill equipped for dealing with the cognitive and relationships problems of Lyme. Psychotherapy helped me most with loss, with letting out the grief of losing my abilities, my hopes, oh, a thousand things. Losses piled upon losses. But I clung to my identity; you have to, I think.
Something that helped me (because my husband and I are, in some respects, so opposite in the ways we think and see things, so there has been friction off-and-on for years, and a kind of intellectual rivalry) is to be able to say to myself, and him, "It doesn't matter." I would chant it, sometimes. Most things, in the long run, don't.
We've been married 30 years, now. Neither of us has wanted just to "bag" that. I've always known he was worth sticking with, and, I believe, he's known the same about me. We began as friends, so that's something we can always fall back on. Sometimes we both just want to escape, you know? He in his way, I in mine. But we keep trying. We have to keep re-deciding not to give up. I think it's no one's fault if things don't work out. But it doesn't hurt to believe that maybe you're both handling things better than you think you are. Cut yourselves some slack.
My ganddad used to say that, on driving a car, if you come to a corner and you have the right-of-way, it's better to yield than to be "dead" right. I never thought about this with "cognition and relationship" problems. But I REALLY hear you! Lyme is murder on relationships for this very reason. I could tell you tales! So could my husband.
I'm still afraid of losing words. It's still a little hard to say, "I don't remember." I think we're beginning to get to the joke-about-it stage. We are, on both sides of the fence, very vulnerable. Done cautiously, patiently, joking is better than hurt.
I hope this helps a little. If someone wants/needs to correspond more (with me or my husband) please send a private message, K?
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![[Eek!]](eek.gif)
I was becoming paranoid and had panic attacks. ![[bonk]](graemlins/bonk.gif)
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peace of mind,
![[Wink]](wink.gif)
![[hi]](graemlins/hi.gif)
Guys, please forgive this long post. This is a very relevant topic. Cognitive problems and relationships is something I've thought about a lot (when I can think). ANDIE, you sound like you've adjusted amazingly well. ![[loco]](graemlins/loco.gif)
The profession is, I think, ill equipped for dealing with the cognitive and relationships problems of Lyme. Psychotherapy helped me most with loss, with letting out the grief of losing my abilities, my hopes, oh, a thousand things. Losses piled upon losses. But I clung to my identity; you have to, I think. 
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