posted
hey santa! yep there are probably many...maybe do a search..there is one right now..in general
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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What is the name of the thread going on right now here in General?
And ....um.....how do I do a search?
s_pax
Posts: 58 | From Planet Earth | Registered: Nov 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
s_pax ~
To do a search...
near the top right of the page there's a line of links. It looks something like this:
my profile | directory | search | faq | forum home
Clicking on search will bring up a form to fill out. You can fill in what ever you're looking for and pick which forum (or all) to be searched.
Sometimes I have difficulty figuring out exactly what to ask it. (simpler is better for me) It should bring up a list of threads where the key word(s) have appeared.
HTH
ps. I think this is the post on lyme and relationships, now, so go for it. (I don't think the thread from medical ever made it over.)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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posted
OK so what you are telling me, is that to do a seach, I click on "search"?
Hmmmm that should be simple even for a Lymie and yet I missed it....
Thanks, Trueblue!
Well if this IS the thread on relationships and Lyme.... basically I am wondering if and how anyone has managed to maintain relationships despite having Lyme disease.
I find that with the exhaustion and chronic pain, I rarely have the stamina or the mental focus to socialize or even to be "nice".
Even a brief chat or a telephone call totally exhausts me, and at times is too mentally challenging.
The symptoms, along with very poor sleep, leave me feeling like a snarling beast. I dont want to harm anyones feelings so often I simply withdraw.
Also, I find it takes every shred of strength I have to merely survive this illness, leaving precious little left over for other people.
To top it off I have a young partner who likes to do fun young things, which I can no longer do, as I am pretty seriously debilitated. He isnt ready to live the "old person" lifestyle yet.
Also I think my partner has alot of feelings about my being sick which dont get explored and just come out as anger and frustation.
I think he feels he has been cheated out of a partner by the illness but there is no-one to blame. Im sure he also feels alot of helplessness, loss, and loneliness.
I try to be there in whatever capacity I can, whenever I can, and even over-extend myself doing so. But it doesnt ever seem like enough, as it falls soooooo short of what "normal" people are able to do.
What are people experiences? How do people manage?
santa_pax
Posts: 58 | From Planet Earth | Registered: Nov 2005
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Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
You and your partner need to be careful--a lot of couples both get Lyme. Many people think that Lyme is a STD--I do.
My husband has Lyme and I gave lyme to my children at birth or through breastmilk.
My husband is sicker than I am--and even though I have Lyme I get frustrated with him. I go to bed at eight o'clock every night and he has to drag me out of bed in the morning as I hang on with my finger nails!
We pulse antibiotics and so we are never feeling good at the same time.
On the weekends he is sick I am well (sorta) and vise versa. We time the abx that way so that we don't miss so much work that we lose our jobs (it's happened before).
It really makes it hard to have a decent conversation besides anything else...
It sounds like you need to talk, talk, talk--try to figure out when you will have a good day and schedule a good talk.
I understand both sides frustration.
linda
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
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hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
i so totally agree with linda that you might think about protection. no one is completely sure, but it is very likely that it can be sexually transmitted.
there was a recent thread on sexuality and lyme. you might want to do a search for it.
as far as being available for relationships, it IS very difficult to get other nonsick people to understand that no matter what you may wish to give, the vessel is pretty empty.
i use up a lot of energy at work, so when i come home, the last thing i want to do is call someone on the phone or reach out.
tired. tired. tired.
can't walk fast, so mostly everyone passes me by when i'm walking around work.
every so often someone will understand the frustrations of a chronically ill person and it feels like such a gift.
posted
Wow interesting responses thank you Linda and Hopeful.
RE: possible sexual transmission of Lyme.....yes, this is indeed a concern of mine.
RE spoons.........did that ever ring a bell. I have in the past tried to explain my situation to my partner using a similar analogy.
I called it my "energy dollar", and how showering costs maybe 30 cents, dressing could cost ten cents, doing laundry, 40 cents and so on. Look how fast one spends their dollar and becomes "broke"! And I do mean BROKE! Kaput!
I hope to hear more on the relationship issue. Is anyone able to successfully adapt their relationship to this disease? How does everyone cope?
santa_pax
Posts: 58 | From Planet Earth | Registered: Nov 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Santa,
For me, this has been one of the most difficult aspects of being sick.
In my case, my disease really took a downturn in Feb 2005. From that point through this past fall, I was unable to do anything...not anything.
I did work part time, but that was it. For four months of that time, we had NO idea what was wrong with me, only that I seemed to be sinking quickly. Some around me were concerned; others were impatient and seemed irritated.
That eased up a bit once I was dx, but after starting abx, my symptoms got worse. Trips were cancelled, phone calls went unreturned, engagements came and went, things started to pile up.
My SO once said, "I feel like I've lost my best friend and playmate." I wanted to cry.
Now that I'm getting a bit better, there's so much that accumulated to do, so many people to see. I have to pull in the reins and continue to do things slowly. That means most of the time, my SO still ends up going places alone.
Yesterday was a rare free afternoon. We went to see a movie then went to dinner -- an early dinner. Okay, a VERY early dinner. Neither of us is young, but we were joking that it seemed we were suddenly in the midst of the geriatric set. Not the first time.
The conversatiohn ended up being about Lyme; it seems it always does. That's so tedious and hard to be around, I know, but I don't know how to change the subject for very long.
I do see anger in my SO. Plus grief, frustration, and a look of someone completely overwhelmed with all there is to do.
We've recently started therapy. I'd actually been in therapy all along, but it's different together, and the first session was REALLY hard for me. It's one thing to "sense" these feelings in a person you love; it's another to hear them articulated.
What we came away with was a renewed sense of uniting against this common enemy (Lyme) instead of taking things out on one another. That seems to have helped ease things up a little.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
about sexual transmission...i thought if one partner was on abx it couldn't be transmitted...am i wrong?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Andie thanks for sharing your experience and thoughts on this.
BTW you really hit the nail on the head with "completely overwhelmed"....Id say that sums things up.
Posts: 58 | From Planet Earth | Registered: Nov 2005
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posted
Hey Santa(where are my presents? I've been waiting and waiting)
I'm not feeling well the last two years off and on, and boy people DO nOt understand this...
THey say "so it's the Lyme?" And you get better and then worse? THen some collegues of my husband just ignore me if I happen to see them...like I am a nut or something..
mind you i am pretty normal but people don't get why your home alot and don't think you could eveer be that sick or that tierd so they rationalize it..
I am not depressed I am physically worm out!
I hate that!..I hate it when people assume..sorry to vent but I am herxing a feel a little misunderstood..
Ugh...I'm going to do my B-12 shot hopefully it will perk me up..
sorry again to vent..lol
daniella
-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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Although chronic pain and debilitation make me pretty darn sad at times, I am not "depressed" either. I am TOTALLY WORN OUT.
Soooooooo back to the original dilemma...how does a totally worn out person have relationships?
Even my family thinks I am just a nut case, or making this all up, and that this Lyme stuff is a bunch of hooey. For the most part they just pretend I dont exist.
This disease seems like one huge heart-break after another Posts: 58 | From Planet Earth | Registered: Nov 2005
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Santa- i dont have any answers for you. I am single, so i dont have to deal with a relationship with a significant other.
I also get worn out taking a shower, doing laundry and cooking myself meals. ( i wish they would invent meal pills for us to take so we didnt have to cook)
One friend said to me today 'i thought you said you were getting better' I had to explain the lyme concept once again...ugh...on how you get worse with abx. Normies just dont get it.
Another friend thought i should take antidepressants or go out drinking since nothing else is working.
Its very frustrating.
I dont have the effort to reach out, most of the people that i talk to are fellow lymies.
Like Andie, somehow the conversation with non lyme patients always turns to lyme,,,,,how can it not though..it is our lives.
I agree, that you should have a talk with your partner, maybe buy one of the books on lyme disease, if you think they would read it and might help them understand you a bit more.
Is there a support group in your area that maybe you can both attend?
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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-------------------- ~Things may happen in my life time to change who I am but I refuse to let them reduce me...~ Posts: 968 | From private | Registered: Jan 2005
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posted
My partner was just diagnosed with lyme disease. That's a proof to me that it is sexually transmittable. We was told to rinse with hydrogen peroxide before kissing and to use condom and even we both have it, otherwise we will be passing it on each other forever.
Posts: 8 | From TAOS | Registered: Jun 2005
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sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
I know what you'all mean about how lyme affects relationships/marriage, and for those of use with children, that bond too. No getting around that reality, and everyone here has been so eloquent in discussing it, more than I can be.
For myself, I am also very interested in hearing about practical things couples can do too about specific realtionship stresses that are inevitable.
n case it helps anyone else, I'm passing along one small idea that has helped my husband and I reduce what often seems to both of us-and i see many of you- to be a ceaseless and sometimes suffocating flow of lyme-talk.
I put up a bulletin board in our room, with 2 wipe-off "charts" -- one has a list of my standing symptoms- i check off for him every day which ones i'm experiencing, so he doesn't have to listen to a daily itemization , but so he get this info, which he wants, when he is mentally geared to see it.
The second gives him a gauge of how I'm likely to relate to him. Example- a GRRRRRRRRRR up there kinda speaks for itself, you know? HAs the added benefit of sparing me having to explain my feelings if i just don't have the energy or inclination.
Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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And I do mean BROKE! Kaput!
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