Do your spouses get involved here on the Lyme Support BB?
I'm looking for something like that for my Wife Joann. It's just as frustrating for the other side, maybe even more so.
So, I was just wondering about spouse support.
Thanks
Steve
Posted by randibear (Member # 11290) on :
steve, i'm sure there are a couple but can't think of them right now.
my spouse is anti-lyme, anti-medical, whatever.....so no help there.
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by randibear: steve, i'm sure there are a couple but can't think of them right now.
my spouse is anti-lyme, anti-medical, whatever.....so no help there.
Hi there
That's too bad, I'm sorry for you.
A lot of the time it is very hard on the spouse so they just go into a state of denial. Maybe some counseling?
Steve
Posted by cootiegirl (Member # 3216) on :
Spouses either support/don't support their sick partner. I know that's a no brainer observation, but unfortunately it appears that the non-supportive spouses tend to outnumber. Not only is this disease hard on the lyme patient, but very hard on the spouse.
Coming from a situation where I have been blessed with a lot of family support (my family, not the 'outlaws'...that's another story ), it saddens me to see the people that are closest to you not being there for you - whatever happened to 'in sickness and in health'?
This is simply my observation - no quantitative data to support it - but husbands tend to be less supportive than wives. This tends to be the norm really with any chronic illness. Men typically don't handle illness as well and are a bit bamboozled about how to be supportive. If you read past posts, you will find a fair number of women reporting that their spouses just don't 'get it'...they get little support for their dr's appts, help around the house, help with children, etc. Many marriages are in jeopardy.
While there isn't anything here for the spouses to connect, I have seen some come on and post. My husband has talked to a few other husbands and 'set them straight' as to what he feels their obligations are to their families. Another good option is the Saturday night lyme chat. Spouses can talk to lyme patients and other spouses in real time.
cootiegirl
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by cootiegirl: Spouses either support/don't support their sick partner. I know that's a no brainer observation, but unfortunately it appears that the non-supportive spouses tend to outnumber. Not only is this disease hard on the lyme patient, but very hard on the spouse.
Coming from a situation where I have been blessed with a lot of family support (my family, not the 'outlaws'...that's another story ), it saddens me to see the people that are closest to you not being there for you - whatever happened to 'in sickness and in health'?
This is simply my observation - no quantitative data to support it - but husbands tend to be less supportive than wives. This tends to be the norm really with any chronic illness. Men typically don't handle illness as well and are a bit bamboozled about how to be supportive. If you read past posts, you will find a fair number of women reporting that their spouses just don't 'get it'...they get little support for their dr's appts, help around the house, help with children, etc. Many marriages are in jeopardy.
While there isn't anything here for the spouses to connect, I have seen some come on and post. My husband has talked to a few other husbands and 'set them straight' as to what he feels their obligations are to their families. Another good option is the Saturday night lyme chat. Spouses can talk to lyme patients and other spouses in real time.
cootiegirl
Hi there
Yep, you make some pretty good points and I have seen the same thing too. It is sad and I always say the what happened to in sickness and health thing too.
So.. A Saturday night chat sounds interesting, my problem would be how late it is. I'm good till 8:00 or so then I'm totally wiped.
I can say this, my Wife has been 100% supportive to me and was since day one. We have now been married for almost 20 years with at least have of that with me havng Lyme.
It's sad, tough and just so many things. I'm at a loss for further words. Must be past my bedtime.
Steve
Posted by cootiegirl (Member # 3216) on :
Steve, The chat usually starts around 8pm eastern time. It goes on till all hours since lymies sleep at different hours LOL. Now if you are one of those that goes to bed early and stays put all thru the night, my suggestion is to take a nap so that you can stay up maybe a half hour later or so. If you have insomnia, chances are someone may still be on at 1 or 2 in the morning....
It really is a lot of fun to talk to people in real time. The topics are so varied - from serious to just fun.
There are a few spouses who come on here regularly. One is Bea Seibert, who posts under seibertneurolyme.
Her hubby as very ill and they are far from good health care. Right now she is trying to get him straightened out so he can come home from the hospital and remain there!
I know there are others as well. As you are around more you will notice them.
My ex was among those who seemed to forget the part about "in sickness," "for worse," etc.
At the time we didn't know I had been ill since childhood. I think he is finally beginning to recognize that I am truly ill, it's not "all in my head."
That being said, I am much happier without him than I was with him. It was a toxic relationship for me. Posted by bettyg (Member # 6147) on :
yes, there are perhaps a dozen;; most recently is MRSDOCDAVE !!
docdave is our resident DENTIST who had to leave his job due to lyme. he was going to take a leave for now from here as there has been so much lyme rage fighting going on.
here''s how to find mrsdocdave,
type her name SUPPORT body text
leave membership no. blank; hit enter;
it should bring up her posts and her introduction to the group; she joined TO HELP SPOUSES and have them have someone to talk to ..
dave hit bottom last year, and then came out of it doing so much better for himself and their marriage.
otherwise, go to top and click on DIRECTORY under new post
type in her name above; hit enter, and it will bring up MY PROFILE, you can send her a PM, private message from there.
but i'd just post a note to her in GENERAL SUPPORT; show her name in subject line ok.
steve, you do NOT need to quote folks and then show their entire post; just show their nickname, and then YOUR comments.
if you want to use the quote, then i'm asking for a personal favor; go to the 2nd line when the "" page comes up and DELETE BOLD CODING MARKS !!
[QB] just delete the 4 things; will delete entire bolding that gives my lyme eyes SO MUCH INTENSE PAIN. thanks my musician friend.
i just loved listening to xmas song that tutu mentioned earlier elsewhere;; wow, have you got a WONDERFUL VOICE TO LISTEN TO!! thanks for sharing your gifts with us SICK lyme folks!
beasiebert is the most involved spouse we hve here; she has educated us all on all they continue to go thru.
most of her posts are over in SUPPORT but she has one in medical bringing us up to date on steve's health and his LATEEST HOSPITAL episode!
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by cootiegirl: Steve, The chat usually starts around 8pm eastern time. It goes on till all hours since lymies sleep at different hours LOL. Now if you are one of those that goes to bed early and stays put all thru the night, my suggestion is to take a nap so that you can stay up maybe a half hour later or so. If you have insomnia, chances are someone may still be on at 1 or 2 in the morning....
It really is a lot of fun to talk to people in real time. The topics are so varied - from serious to just fun.
Ok, I'll try to get to that chat but probably not this Saturday. Just starting new meds today so very soon now I will be very messed up.
Really with all the pills I take 8:00 pm is really late but I'll see what I can do.
Steve
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by bettyg: yes, there are perhaps a dozen;; most recently is MRSDOCDAVE !!
docdave is our resident DENTIST who had to leave his job due to lyme. he was going to take a leave for now from here as there has been so much lyme rage fighting going on.
here''s how to find mrsdocdave,
type her name SUPPORT body text
leave membership no. blank; hit enter;
it should bring up her posts and her introduction to the group; she joined TO HELP SPOUSES and have them have someone to talk to ..
dave hit bottom last year, and then came out of it doing so much better for himself and their marriage.
otherwise, go to top and click on DIRECTORY under new post
type in her name above; hit enter, and it will bring up MY PROFILE, you can send her a PM, private message from there.
but i'd just post a note to her in GENERAL SUPPORT; show her name in subject line ok.
steve, you do NOT need to quote folks and then show their entire post; just show their nickname, and then YOUR comments.
if you want to use the quote, then i'm asking for a personal favor; go to the 2nd line when the "" page comes up and DELETE BOLD CODING MARKS !!
[QB] just delete the 4 things; will delete entire bolding that gives my lyme eyes SO MUCH INTENSE PAIN. thanks my musician friend.
i just loved listening to xmas song that tutu mentioned earlier elsewhere;; wow, have you got a WONDERFUL VOICE TO LISTEN TO!! thanks for sharing your gifts with us SICK lyme folks!
beasiebert is the most involved spouse we hve here; she has educated us all on all they continue to go thru.
most of her posts are over in SUPPORT but she has one in medical bringing us up to date on steve's health and his LATEEST HOSPITAL episode!
Hi Betty
I want to reply to you first here before I forget.
I have to use the quote so I can go back and read what I'm replying to. I have to read things many times before I remember what I'm reading, that's why I do quotes. No problem on the bold text. That's an easy one for me. I'm no stranger to BB'S as I was an Admin and Director of Marketting for an online radio station at another board.
Thanks for all the info and thank you for listening to my music. Everything on my music site I wrote except for "O Holy Night"
Steve
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by lymednva: There are a few spouses who come on here regularly. One is Bea Seibert, who posts under seibertneurolyme.
Her hubby as very ill and they are far from good health care. Right now she is trying to get him straightened out so he can come home from the hospital and remain there!
I know there are others as well. As you are around more you will notice them.
My ex was among those who seemed to forget the part about "in sickness," "for worse," etc.
At the time we didn't know I had been ill since childhood. I think he is finally beginning to recognize that I am truly ill, it's not "all in my head."
That being said, I am much happier without him than I was with him. It was a toxic relationship for me.
Hello!
That's too bad about your spouse but from what you said, looks like you are better off now.
My Doctor thinks that I may have had this since childhood also.
I went form doing three jobs and playing in a Band to no jobs and very little music. I was mad for a long time then sad, then mad again. Now I'm just me.
Steve
Posted by sixgoofykids (Member # 11141) on :
My husband is very supportive, but he simply would not have time to come here .... after all, he has to make up for all that I cannot do.
I think it is just as hard on them .... in fact, I'm sure of it.
Posted by MusicMan (Member # 11966) on :
quote:Originally posted by sixgoofykids: My husband is very supportive, but he simply would not have time to come here .... after all, he has to make up for all that I cannot do.
I think it is just as hard on them .... in fact, I'm sure of it.
Hello
Well, maybe I'll get there, maybe not. I never know how I'll be from one moment to the next anyhow.
I think it is very hard on the healthy spouse also. I know my Wife has told me many times how helpless she feels and wishes there was something more she could do for me.
I always tell her that she is more help then she will ever know. But I'm also glad it was me that got this instead of her. I could not stand to see her in such agony, so I know how she feels.
But at the same time if the roles were reversed I would support her in any way I could. We have a great relationship before and after Lyme and I thank God for that.
Steve
Posted by POP (Member # 4111) on :
For anyone dealing with this disease that has a supportive spouse consider yourself lucky. I was infected right after we were married 15 years ago and this women has done everything to beat me into the ground.
I`ve been asked to leave on so many occasions knowingly I have no where to go and no one to turn to, she knows this and uses it as her power play. I know it`s usually the male that`s non supportive when it`s the female who is infected but it does work both ways. Trust me. Scary thing is, she`s a nurse.
Crazy is it may sound my ex fiance whom I have not spoke to in 25 years tracked me down through a reunion site. I`ve had more support in 3 weeks from this women then I`ve had with nurse Rachett in our entire so called marriage.
If you are suffering from this disease and have a supportive spouse, count your blessings and don`t let go of them. Be well. Pop
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by sixgoofykids:
I think it is just as hard on them .... in fact, I'm sure of it.
I think it is too. My husband is supportive but has no desire to learn very much about Lyme. He has learned enough to have a VERY healthy respect for ticks, believe me!
He came here once two years ago when a hospital infection nearly did me in. I think he was pleasantly surprised at all the support here!
It was a good thing for him to learn. He's also met quite a few Lymies here!! So now he knows it affects real people in real ways.
He now knows that others "look well" too even though they are sick.
Posted by Geneal (Member # 10375) on :
My husband has Lyme and is not currently treating (by choice).
If you think it is hard having someone support you who doesn't know how Lyme feels,
I think (sometimes) it is even harder to have a herx when someone is herxing
Along with you. Talk about no support.
With my husband it usually becomes a contest. The "I am sicker than you are" one.
Wait. I also have children who are herxing again now that flagyl is in the mix.
I think someone should just come along with a white jacket, zip me up,
And take me away for a nice long vacation.
I am glad your wife is interested in how you feel.
Hugs,
Geneal
Posted by kbholley (Member # 12938) on :
My husband is very supportive and has been with me from the start of this lyme in 2001. And he is as angry as anyone about the ducks in Florida thinking it is everything but lyme.
Posted by bettyg (Member # 6147) on :
pop, sorry to read about your situation! at least you have someone else to talk to now for MORAL SUPPORT. best wishes; it's note easy!
Posted by POP (Member # 4111) on :
Thanks bettyg for your kind words. She`s been a lot more then moral support, she`s been a blessing to me.
I am in the midst of another replase, I have been out of work for a month now and inquired into permanent disability. I was told by my wife some time back if I was to go out on disability that I was no longer wanted here, nice huh?
Again, that was part of her power play, she knew I had no one to turn to or no where to go. Things have changed for me now, a door is open in N.C. for me courtesy of my ex fiance.
This women is willing to except me no matter what the heatlth situation, our love for each other never died. I prayed and prayed that someone some where out there would save me from this toxic relationship, my prayers have been answered and I`m forever grateful to the Lord. It`s truly a miracle! If all goes well, I hope to be in N.C. very soon God bless all who suffer from this disease. Be well, POP.
Posted by Andie333 (Member # 7370) on :
My SO has been there every single step of the way--supportive beyond anything I could have imagined
but never goes on Lyment.
Posted by bejoy (Member # 11129) on :
My husband really could have used some kind of support about a year ago. He felt so alone in what he was going through.
Friends and neighbors just can't understand how hard it is, becuse they don't understand lyme, and I look "just fine."
I tried to get him to do a lymenet post about what he was going through, but writing is just not his thing.
I'd suggest having your wife get her own screen name here, write a post about her experience, and post that she is looking for feedback from spouses.
She can ask lymies to please put their spouses on to respond.
My husband would have at least read some posts like that, and it would have helped.
Posted by AliG (Member # 9734) on :
^ for DH
Posted by CaliforniaLyme (Member # 7136) on :
There USED to be a fledging effort at a spousal support group years ago on sci.med, but it didn't get off the gorund really. This is the old SOLD FAQ if people wanted to start a new one!!! It was actually not just for spouses but for other close family members as well- here that is- if someone wanted to start a yahoo group with the same name it sounds as if there is a great deal of interest in it!!! ************************************** * Significant Others of Lyme Disease * * SOLD * * LISTSERV Support Group FAQ * * (frequently asked questions) * **************************************
------------------------------------------------------------------------- Initiated: March 26, 1996 Last update: April 05, 1996, FAQ sheet put into HTML format, editing changes, additional thanks. April 02, 1996, First published
Send additions, corrections, comments, etc. to: Mark Shives [email protected]
Many Thanks to: Scott Fosseen for his efforts to help get this listserv started and finding it a home!!! (The almighty negotiator!)
Donna Herrell for her inspiration, support and editing talents to correct all my spelling, grammar and inaccuracy in this FAQ.
Geri Fosseen (yes, she's Scott's wife) for kicking me in the bum to get serious with this list. -------------------------------------------------------------------------
1. What is the purpose of this list?
SOLD (Significant Others of Lyme Disease) is designed for the spouses, significant others, family members and friends of Lyme Disease patients. Its purpose is to exchange ideas, comments, coping strategies, as well as, gripes and fears related to the disease.
The list is not moderated. It is designed as a support group and to promote open communication between members. It is well recognized that the healthy loved ones of someone with a chronic or unpredictable illness are affected by disease, as are the patients themselves, albeit in a different manner.
As stated, Lyme Disease affects more than the person suffering with the disease. Things such as misunderstandings, bitter words, hurt feelings, divorce, marital or financial problems and legal hassles are not uncommon. These are but a few of the effects considered and discussed.
We don't always have an outlet to voice our frustrations, fears, anger, guilt, etc. in dealing with the changes and problems that occur. This list is intended as a place to come and talk with others who know, understand and are more than willing to give support.
2. What kind of information can I expect to find here?
Expect to find lots of "real world" accounts about living with and caring for persons who suffer with Lyme Disease. List members may sometimes post reports about Lyme Disease research, but posting hard scientific information is not the purpose of the list, though persons interested in such will be gladly helped as able, and directed to the proper resources.
We exchange a lot of information about every aspect of living and caring for those with Lyme Disease. We also realize that everyone is an individual, therefore different ideas and opinions will be represented here. Some may be very conservative while others very controversial. Disagreement is okay, *ridicule* is not.
Other topics such as ideas and recourses for financial assistance and counseling, legal recourse and treatment regimens will be posted. Because this list is a support group, expect to see lots of supportive messages. If you have a question, please post it. You will probably receive answers from several people. Please remember, however, that you still need to discuss your concerns and with your physician and/or other professional where applicable.
3. Why is there so much non-Lyme Disease chatter?
Because this is a support group, and we get to know each other. Caring for our loved one with Lyme Disease is only one aspect of our lives, and we frequently discover common interests and concerns that may not be directly related to Lyme Disease or our loved ones. If someone has a bad day, they know they can get support from people on this list. If someone has a reason to celebrate, they know that people on this list will be happy for them. These types of posts appear frequently, and some people may consider them frivolous. However, "we need to specialize in moral support and caring about people."
4. What if I don't want to read all of those chatter posts?
We instituted a convention in an effort to make it easy to delete the chatter postings, if that's what you prefer. A post that contains only chatter should have CHAT in the subject line. However, some mail systems won't allow the user to change the subject line when replying to a message. In that case, you can start a new message, or you can insert a "CHAT warning" for the first line of your message.
Because of the possible volume of mail, it also helps to make your subject lines as descriptive as possible.
You can suggest that people stop chatting so much, but that would defeat the need that some people will want to use this list for!
5. What do those acronyms and abbreviations mean?
ABX Antibiotics BTW By the way digest A collection of the last 50 (more or less) posts DOD Date of diagnosis DX Diagnosis DXed Diagnosed EMT Emergency Medical Technician ER Emergency room FAQ Frequently asked question(s) GP General Practitioner IMHO In my humble (or honest) opinion LD Lyme Disease LDF Lyme Disease Foundation LYMIE Person who suffers with Lyme Disease MD Medical Doctor OTOH On the other hand ROTFL Rolling on the floor, laughing RX Treatment/Prescription SO Significant other TX Treatments regiments(IV or oral) YMMV Your mileage may vary.
6. What are the guidelines for posting?
SEND SYSTEM COMMANDS TO THE RIGHT PLACE: [email protected] is the address for subscription and mail on/off commands; [email protected] is the address for posting to the list.
TO GET ON THIS LIST: send a message to [email protected] and leave the subject line blank. Put JOIN SOLD in the body of the message and send it. Each time a message is posted to the list, it will be sent to your email address.
TO GET A DIGEST OF DAILY POSTS: send a message to [email protected] and leave the subject line blank. Put DIGEST SOLD in the body of the message and send it. A single message will be sent each day containing an indexed summary of all the messages that have been sent to the list in the previous 24 hours.
TO GET OFF THIS LIST: send a message to [email protected] and leave the subject line blank. Put LEAVE SOLD in the body of the message and send it.
THIS IS A SUPPORT GROUP, not a source of hard scientific / medical / financial / legal information. If that's what you're looking for, post your questions and we'll try to refer you to an appropriate source. Our specialty is what's NOT in the books, the nuts and bolts of daily life as affected by Lyme Disease.
POST YOUR QUESTIONS! This list may generate far too much traffic for browsing to be an effective way to get specific information.
KEEP TO THE SUBJECT LINES, OR CHANGE THEM. If you can't change them, originate a new message with an appropriate subject line. Don't simply "reply" unless your message is CLEARLY on the same subject. Put the word CHAT in the subject line if the message isn't mostly about caring for those suffering from Lyme Disease.
WHEN IN DOUBT, USE PRIVATE E-MAIL. Is your message of general interest? If not, send it privately. This goes for test message confirmations, too -- only the person who needs the confirmation should get it.
BE CAREFUL ABOUT VERY SHORT MESSAGES AND EMBEDDED POSTS. If you've already seen a couple of congratulatory or condolence messages to one person, send yours by private e-mail. Also, don't just add a one line message after embedding a whole long post -- if you don't have time to edit, don't embed.
PUT YOUR E-MAIL ADDRESS IN THE BODY OF YOUR MESSAGE. Some mailers don't provide full headers and signature files. Also, in your first post to the list, please tell us a little about your experience with Lyme Disease. Who (name may be withheld) you are caring for, how long, is the Lyme chronic (in most cases it will be), is treatment still happening, do you have a doctor who will treat for Lyme, is you insurance covering it, do you have insurance, etc. This helps us answer your questions more accurately. We are also interested in your geographic location. It will also be helpful if you can tell us your guesstimation where your significant other contracted Lyme Disease.
DON'T POST TO THE LIST TO ASK IF THE SERVER IS DOWN. Instead, find a buddy who is not on your leg of the network, and send private e-mail to find out what's going on.
BE TOLERANT. Lots of different opinions on treatments, financed and legal actions are used successfully by list members. It's okay to disagree, it's NOT okay to attack other members personally. Be polite even when you're angry. If you're too angry to be polite, don't post or send private e-mail.
USE "EMOTICONS" TO SHOW EMOTIONS IN YOUR MESSAGE. These make it easier to gauge emotion in small samples of text; it's better to be explicit than misunderstood. Two common systems are words in brackets, such as (often abbreviated to ), and "sideways smileys." Some common smileys are: :-) (regular happy smile), ;-) (winking sly smile), :-( (sad frown), and :-| (grave concerned look).
KEEP YOUR SENSE OF HUMOR. A post that LOOKS offensive might actually be an ongoing joke between list members -- don't jump in with criticisms until you're sure what's going on. Remember that topics will shift if you're off the list for awhile; use private e-mail to catch up.
BE CAREFUL ABOUT THE ACCURACY OF INFORMATION YOU PROVIDE -- someone's life may depend on it. Make it clear when you offer an opinion, and cite your sources when you quote them.
7. Why a list instead of a newsgroup?
As the internet reaches more and more people around the world, most of them will have "email" access to the internet. Access to newsgroup servers will not be guaranteed. We want this list to reach as many people as possible. The more we can support and educate each other on how to care for our loved ones the more we will be able to cope with "real life" in a Lyme Disease affected life.
Enjoy your stay with us!
Posted by minoucat (Member # 5175) on :
Steve, I don't know if I interpreted your message properly, but there is an online group strictly for people who don't have lyme but care for people who do. I think it's intended to be a safe place for caregivers to vent, exchange info., and get support without hurting anyone's feelings.
Being the spouse of a lymie is hard work too. I know, as a lymie and a lymie spouse.
I am looking for a place for my Wife Joann to be able to go to and vent and share.
I'm going to go check this link out right now.
Thanks again.
Steve
Posted by map1131 (Member # 2022) on :
Thanks for this information. My husband sometimes has a hard time understanding some things. Especially when he asks me about one of my symptoms that has to do with the GI track.
He says things like Well, two days ago you said it was doing better? Why isn't it still better?
I just want to smack him upside the head. He has mainly been very supportive. He just thought since our gastro/friend was trying to help me, that everything was going to magically disappear.
I'm sorry to say the gastro hasn't figured out s$#*. No pun intended. All he's done is tell me to take Miralax. He's done a colonoscopy and endoscopy so far.
The gastro was happy to report there's no bacteria, parasites, yeast, etc after doing the colonoscopy. Haven't heard results on endoscopy. Okay, sure!!!! I've still got gastro problems.
I have moderate hemorroids too. Dah, I could of dx that. lol Miralax and suppositories and creams isn't touching my problems.
![[Smile]](smile.gif)
), it saddens me to see the people that are closest to you not being there for you - whatever happened to 'in sickness and in health'?![[bonk]](graemlins/bonk.gif)
![[Big Grin]](biggrin.gif)
It was a toxic relationship for me. ![[shake]](graemlins/shake.gif)
![[Frown]](frown.gif)
![[Roll Eyes]](rolleyes.gif)
Talk about no support.