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Posted 5/29/2015 8:48 AM (GMT -5)
A few years ago, my wife was diagnosed with Lyme disease. I am very typical of the stories on here about husbands remaining in denial or ignorance about the effects.

Furthermore, even given the possible effects in extreme cases, I was somewhat confident that it had been caught well in time for a short course of antibiotics to work. She hasn't been the same since and I have seen all levels of symptoms although good days are frequent.

I am the only breadwinner in a high paced, volatile profession. In the interests of full disclosure, my feeling was very much that if people are sick, they are main protagonists of getting better in so far as communicating how they are and somehow setting the bar as to how far things have changed internally. I’m not expecting a cancer patient to drive themselves to the hospital here; just a communication of symptoms and needs.

My wife embarked on hiding whatever she was feeling or how things hand changed. She would self-medicate antibiotics without telling me or communicating any further symptoms after an initial all clear.
My intention is not list her symptom’s as such, but suffice to say, she is displaying the neuro and physical symptoms I have now read about.
As much as I am not perfect and make many mistakes, she appears to have little insight into how challenging life is for me to go it alone. In place of the complex negotiation and feats of impossibility life sometimes entails, she has me in the centre as a husband figure who is there to perform all these things alone whilst helicoptering her into the moments the undiluted pleasure. She is extremely isolated socially and has no face to face interaction with anyone accept me although she would claim that internet communication with a small group of people is all she needs. In adapting, she will always provide tenuous reasons not to maintain face to face friendships or even phone conversation.
She is completely sheltered from anything in life beyond me, her son from another relationship and basic house work. Weeks could go by without a significant venture outside of the house. Everything she buys is on line. Meanwhile, I have been under the misapprehension that she was better, or at least dealing with a manageable illness like my bad back. This has caused hell. She is not capable of robust communication or listening to a complete sentence of mine without either breaking into irrelevant and sometimes bizarre reply. At the very worse, violent rage. I am not completely innocent in any argument, but previously under the impression of dealing with someone in possession of most or full processing power, insight and perspective. It is as if she is no longer able to process the grey areas of life. I am a very self-contained person, but her isolation requires my mirroring it to maintain easy peace.
She presents her every challenge as something that is only made better by some supposed state of nature that I am not meeting or doing the opposite to . This is hard to accept.
I have now come to the realisation of how far the foundations of her personality have shifted. However, she is incapable, or refuses a rational discussions of strategy or next steps. As I say, everything is something I am not doing right. All this is having its toll on me and has exaggerated my irascibility. I am not typically a person who believes too much time needs to be spent thinking about ones state of mind, but I realise that one main factor is the inability to express or process my feelings and or emotions safely. If I do, it drives her into either unmitigated despair or escalating argument. How do you tell someone in that state how scared you are of the future and what it could bring? How do you tell them that you have hung on in where you are, but know that having a child together as planned will either break me in half or alter my future aspirations all together? How to you tell someone who seemingly, would never even appreciate a quiet acceptance?
In my mind’s eye, I have now envisioned that we all manage the situation and fight to an eventual resolve of her persistent symptoms. This has already caused the violent arguments where things are all my fault. I say we “all”, including (my step son) who is 19. Her son is in his late teens but she extends a gargantuan effort to infantilise him. After not educating him in helping with any chores or fending for himself at a basic level, she is further spread thin. This diverges into other areas, but most relevant his her strong woman act whilst she is supporting the echo system of her son watching TV and eating Pizza all day, every day when he is not in college. Worse, his own social interaction is as worse as hers other than going to college. This is difficult for me to watch or accept because I had a sick grandpa who I helped out as a young kid.
I feel I have come to an end of the road. I have now offered to work together and been firmly refused. The position of tacitly accepting everything is my fault and my place in life is to take the pain whilst others take the pleasure is untenable and I will most probably seek a divorce soon after posting this message. I feel that if I get out now, I have a chance to salvage MANY of the aspects of my life the constant conflict and disengagement has caused.
I just wanted to relate this story in case anyone had stumbled on some approach that works in this situation. Were she to read this and know I was writing about her, her reaction would unmitigated upset, rage and full recount of every evil deed I have ever done. I feel I have PTSD.
Posted 5/29/2015 10:42 AM (GMT -5)
I am so sorry you are dealing with all this.
You said your wife had a short course of antibiotics. Sounds like that wasnt long enough and she needs treatment.
Do you know if she was treated by a Lyme Literate MD or just her PCP?

Can you sit down with your wife and tell her you would like her to see a LLMD for evaluation?
Since she is self medicating - she knows she has an active infection.

Lyme often affects the brain and can manifest the behaviors that your wife is displaying.

We can help you find her a LLMD - as it doesnt sound like she has been treated by one.

I apologize for a choppy reply - I am on my cell phone and wanted to reply right away.
Thank you for reaching out to get help.

I hope you can have a discussion with her - maybe tell her you know she is suffering and you want to help her get well.
Posted 5/29/2015 10:56 AM (GMT -5)
Hi Kev,
Welcome to our community. I'm so glad you found us.

It surely sounds like what Girlie is saying - that short course of abx (antibiotics) wasn't enough to actually heal her body of the infection(s) she has - it rarely is.

It sounds like you are describing my life just before I got treatment, except I had undeniably serious physical symptoms as well. What she is dealing with is either Lyme rage or Bartonella rage - or worse, it's a combination of both infections. Quite frankly, if you care for her at all, please help her get back into treatment immediately.

She's not social any more likely because her brain is not capable of processing a bunch of information like you or others can. Pushing her to be more social will only result in her anxiety flaring into unreal levels - at least that's what happened to me.

Without help, many families suffer horribly while the Lyme patient remains untreated and even during treatments sometimes while we regain our health. What it takes is open communications and tons of forgiveness on both sides, as many misunderstanding happen when one side can't express their feelings or thoughts due to an illness.

I do hope that you don't leave at this point, as you will be leaving due to your wife's illness, not anything else.

We can most definitely be of help to both of you. Please do post again. We can help find a doctor that will take her all the way through her healing instead of leaving her like this.
Posted 5/29/2015 11:15 AM (GMT -5)
Lyme is hard on the patient and the spouse, not easy either way. She needs a Lyme literate doctor to help her through it, as girly said. She needs guidance while going through treatments and needs to know how much to take so she doesn't get a serious herx reaction. She needs testing to make sure her system is functioning correctly.

Counseling could help you deal with it and if she would do it too, it might save your marriage and teach both of you how to deal with it better. It's hard to have your mind so impacted by a disease and it's a stress on marriage. Do you have anything you enjoy doing that you could do on a regular basis to have a break from things? That can go a long ways sometimes.

I'm sorry both of you are going through hard times and I hope your marriage can be salvaged. We can offer you support if you decide to stick around. We care about the patient and the caregiver, so I hope you will talk to us and get the support you need.
Posted 5/29/2015 11:54 AM (GMT -5)
kev-flynn~I know it is hell for you, but I would say that being a prisoner in your own body, unable to be who you used to be, is beyond hell. Your mention of PTSD for both of you is so apt.

You are to be commended for pulling the load financially, and trying to analyze the disease affecting your family. But please be aware, that some here, who are not contributing financially, feel a HUGE BURDEN of guilt! And yet fighting the body & emotional pain of this disease, alone, is a COLOSSAL battle!

I don't know if you are trying to communicate here with your wife, but I hope the responses given will pave a path of healing for all of your family.
Posted 5/29/2015 12:31 PM (GMT -5)
kev_flynn

Great responses already. I can only add a few thoughts from your wife's perspective, as I am her.

Your description of what is going on with her is quite articulate and accurate. And the toll it's taking on you is significant. You're incredibly brave and resourceful in reaching out here. I hope you continue to post and receive the support you need. Lyme & co is destructive and all consuming. But you can win this battle.

Your wife's normal brain function has been hijacked. When you're ready and have time to do some research, we can help you understand WHY it's all happening, how the infection manifests itself into the brain and the body and why all her circuitry has been compromised. She's not in charge of her actions, reactions.

As others are suggesting, you have to step in and take control. She won't like it or understand it. But and you and your family need you to do this. Like others have said, your first step is to find an LLMD and the brilliant moderators can help you do that. She doesn't need to know details of what you're doing right now, that can come later. All she needs to know is that you know she is really brave for trying to treat herself w/out burdening you and others… but NO ONE goes at lyme & co alone. NO ONE CAN DO IT ALONE. And you found a reputable LLMD who is going to help you both figure this out. And not getting there because she is resistant for whatever reason is non negotiable. You have to address that head on.

Your next biggest hurdle is helping her communicate to the LLMD and you are impressively intuitive in understanding her difficulties with this. I cannot describe how difficult this was for me when I first started out. I lost my connectivity with my body and the understanding of what sx were, how they felt, and how to understand them in order to describe them. And it's also really hard to explain why it was so difficult. I can only say that the part of my brain that processes that kind of communication just stopped. I had moments where I did not recognize myself in the mirror. I had moments when I allowed pain w/out interference because the intensity of that sensation helped me feel alive. It's crazy.

I have no idea where I would be w/out this forum. I stumbled onto it and when I could, I read and read and read all the conversations here. I studied how others described their sx and took copious notes and compartmentalized the information. It took months but I finally had organized my situation enough to communicate w/ my LLMD. And it was just the beginning...

My cognitive problems have made it far more difficult to research and study, which most of us have to do in order to understand how to support our LLMDs and treat the lyme & co and all the other system breakdowns effectively. I take full advantage of the good days and I completely disappear on my bad days.

I used to have a very public position in my profession, did lectures and speaking engagements. When I was younger I was a performer. I was incredibly social and had many many friends. I loved people and relationships and had boundless energy for life. But lyme& co. ruined my life. It has destroyed EVERY relationship I had, except for maybe 3 who all live very far away, which is likely why they are still speaking to me. Everyone is gone. I don't blame them. I'm a different person. In trying to understand the drastic change in my personality, again, other's stories here helped me recognize how to describe how it felt. And this led me to take an Aspberger's test, which led to two more because I couldn't believe the results. I scored very very high.

But it makes sense now, knowing what I know about how the brain and neurotransmitter and hormone functions control personality and how components of the infection compromise it. As Traveler stated, normal social interaction can be so incredibly overstimulating, it sends me into a physiological crisis, which in turn exacerbates other physical sx. Vicious cycle. Seclusion and withdrawal is self preservation. If I can save energy required to interact with people, which feels like running a marathon, I'll have more energy to take a shower, make a meal, which on some days feels like moving a mountain.

In order to help her, you'll need to dive head first into understanding her condition. Please visit the "New to Lyme?" thread at the top of the page, it has INVALUABLE information. If you have vacation or sick days available to you, I strongly encourage you to take some time off and knock out some intense research. Get caught up with what is going on w/ her so that you can help her and yourself. You'll be so grateful and empowered with this knowledge. If you can get her past the initial stages of treatment to where she is functioning better cognitively and psychologically and neurologically, then she will be more engaged in her tx and life can get a little closer to normal for your entire family… small steps.

And GP's suggestion to find an outlet is also important. You have to be a whole person in order to help her.

Hope this helps. Keep posting and asking any q's.

p
Posted 5/29/2015 1:15 PM (GMT -5)
Please, Kev - read this. It's short and will explain so much, yet it is just the beginning. We are here to help both of you.

www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t
Posted 5/29/2015 1:22 PM (GMT -5)
Girlie, Pirouette, Trav, GofP ~I really do love your thoughtful & motherly sharing. All so well-spoken & helpful.

But I also have to say quite frankly I loved Chris cutting to the chase, too!
Posted 5/29/2015 1:41 PM (GMT -5)
Chris

Your intensity is appreciated. Your myopic approach of YOUR version of the world is not. You know nothing about this couple and you know only your own experience w/ lyme.

A mature and helpful approach is well rounded with information, understanding. Being firm and straightforward w/out being densely offensive and ignorantly arrogant is a craft. You probably have important things to share but your delivery needs a significant evolution.

Antibiotics are not a panacea and abx use w/out a compressive approach with knowledge of its context is dangerous. Please don't post carelessly. I, too, can skip the coddling and cut to the chase.

p
Posted 5/29/2015 2:18 PM (GMT -5)
Okay!! So moving on.

Kev, please disregard that member's comments. That is far from the truth of the matter.

You need the support that can normally be found here by most members. Please do not let one person's bad attitude stop you from helping your wife. Remember the woman that you fell in love with and the one that you had just before she got sick. That's who you are fighting for.
Posted 5/29/2015 2:23 PM (GMT -5)
Traveler

It's been awhile since I read the "New to Lyme?" thread but I was curious if it had a section, or could have a section directed for "partners of lymees"?

p
Posted 5/29/2015 2:28 PM (GMT -5)
I'm deleting the unhelpful posts. I apologize for the "excitement" here.
Posted 5/29/2015 2:37 PM (GMT -5)
P~
I was thinking it was time for us to add in something like that too - so good idea!! smilewinkgrin
Posted 5/29/2015 2:39 PM (GMT -5)
Kev, the bantering that's going on isn't how the forum usually is, so don't let it scare you off.

I thought of something else. Why don't the 2 of you find something to do together, like a date night to watch a movie at home or play a game of some sort. Do it every week. Look through your wedding pictures to remind you of who she is without Lyme affecting her. It can just be nice to remember what brought you together.

Counselors can give you tools to work with so you don't set each other off and that may be the best thing you could do. It seems you want to make it work, but hit a dead end and came here for help, which is good. I'd hate to see you break up when she needs you. I have no idea how old the 2 of you are, but if you're both young, it can make it harder to deal with. My poor hubby is going through my 2nd round of poor health, plus our daughter too. He takes the wedding vows very seriously, otherwise he might have taken off the first time.

Let us know how you both are doing.
Posted 5/29/2015 3:07 PM (GMT -5)
I just deleted my other post because i saw that Traveler took care of the unnecessary items.

It is good to have a place where we can feel safe to express our feelings... and receive the much needed empathetic support and encouragement.

Kev... you are in the right place... there will be alot of suggestions,questions and support here for you.

Some things will not apply to your situation... but others will hit the nail on the head, and will help you to navigate the emotional roller coaster that you are dealing with.

This is the most supportive environment i have found... for both partners.

Please know that your feelings matter... when you continue to share,vent and ask questions...you will eventually find the right road for you and your situation.
Posted 5/31/2015 6:48 AM (GMT -5)
Thank you so much for the reply. I have tried to suggest we return to the doctor together although not as direct and practical as you have suggested by going to a LLMD.

Difficult to put all this into words, but, from my experience, I would first get a long list of my character flaws, things I could for her, things I should be doing as a normally adjusted family man in order to eradicate all of our problems in one foul swoop. This is extremely torturous. However, I will see if there is some yet to be tried approach to suggest we go to a LLMD.

I may also add that, it is as if she has given up. She now knows she can take antibiotics which temporarily solve fatigue issues, but refuses to address long term neurological affects.

Please send me a list of those LLMD's.


Girlie said...
I am so sorry you are dealing with all this.
You said your wife had a short course of antibiotics. Sounds like that wasnt long enough and she needs treatment.
Do you know if she was treated by a Lyme Literate MD or just her PCP?

Can you sit down with your wife and tell her you would like her to see a LLMD for evaluation?
Since she is self medicating - she knows she has an active infection.

Lyme often affects the brain and can manifest the behaviors that your wife is displaying.

We can help you find her a LLMD - as it doesnt sound like she has been treated by one.

I apologize for a choppy reply - I am on my cell phone and wanted to reply right away.
Thank you for reaching out to get help.

I hope you can have a discussion with her - maybe tell her you know she is suffering and you want to help her get well.

mad
Posted 5/31/2015 7:02 AM (GMT -5)
~Kev

It is a good idea to start another thread titled "Looking for LLMD in ...... area" For example i had started one when i first came here "Looking for LLMD in Central Pa"... you never know who knows of one in your area. It is not something you will find in the phone book...as you may already know. Just a suggestion to help get all the names that you possibly can.
Posted 5/31/2015 7:09 AM (GMT -5)
This is a great response and very supportive. Thank You. I will try my best to act on the suggestions below.

One thing that I really need to address directly in your quote is that for the last few weeks, before I posted here, I had been researching Aspergers and her personality seemed to fit the aspergers mold exactly.

Guys, thank you so much. I will continue to monitor reponses and other material on here and keep you updated as best as I can.

Pirouette said...
kev_flynn

Great responses already. I can only add a few thoughts from your wife's perspective, as I am her.

Your description of what is going on with her is quite articulate and accurate. And the toll it's taking on you is significant. You're incredibly brave and resourceful in reaching out here. I hope you continue to post and receive the support you need. Lyme & co is destructive and all consuming. But you can win this battle.

Your wife's normal brain function has been hijacked. When you're ready and have time to do some research, we can help you understand WHY it's all happening, how the infection manifests itself into the brain and the body and why all her circuitry has been compromised. She's not in charge of her actions, reactions.

As others are suggesting, you have to step in and take control. She won't like it or understand it. But and you and your family need you to do this. Like others have said, your first step is to find an LLMD and the brilliant moderators can help you do that. She doesn't need to know details of what you're doing right now, that can come later. All she needs to know is that you know she is really brave for trying to treat herself w/out burdening you and others… but NO ONE goes at lyme & co alone. NO ONE CAN DO IT ALONE. And you found a reputable LLMD who is going to help you both figure this out. And not getting there because she is resistant for whatever reason is non negotiable. You have to address that head on.

Your next biggest hurdle is helping her communicate to the LLMD and you are impressively intuitive in understanding her difficulties with this. I cannot describe how difficult this was for me when I first started out. I lost my connectivity with my body and the understanding of what sx were, how they felt, and how to understand them in order to describe them. And it's also really hard to explain why it was so difficult. I can only say that the part of my brain that processes that kind of communication just stopped. I had moments where I did not recognize myself in the mirror. I had moments when I allowed pain w/out interference because the intensity of that sensation helped me feel alive. It's crazy.

I have no idea where I would be w/out this forum. I stumbled onto it and when I could, I read and read and read all the conversations here. I studied how others described their sx and took copious notes and compartmentalized the information. It took months but I finally had organized my situation enough to communicate w/ my LLMD. And it was just the beginning...

My cognitive problems have made it far more difficult to research and study, which most of us have to do in order to understand how to support our LLMDs and treat the lyme & co and all the other system breakdowns effectively. I take full advantage of the good days and I completely disappear on my bad days.

I used to have a very public position in my profession, did lectures and speaking engagements. When I was younger I was a performer. I was incredibly social and had many many friends. I loved people and relationships and had boundless energy for life. But lyme& co. ruined my life. It has destroyed EVERY relationship I had, except for maybe 3 who all live very far away, which is likely why they are still speaking to me. Everyone is gone. I don't blame them. I'm a different person. In trying to understand the drastic change in my personality, again, other's stories here helped me recognize how to describe how it felt. And this led me to take an Aspberger's test, which led to two more because I couldn't believe the results. I scored very very high.

But it makes sense now, knowing what I know about how the brain and neurotransmitter and hormone functions control personality and how components of the infection compromise it. As Traveler stated, normal social interaction can be so incredibly overstimulating, it sends me into a physiological crisis, which in turn exacerbates other physical sx. Vicious cycle. Seclusion and withdrawal is self preservation. If I can save energy required to interact with people, which feels like running a marathon, I'll have more energy to take a shower, make a meal, which on some days feels like moving a mountain.

In order to help her, you'll need to dive head first into understanding her condition. Please visit the "New to Lyme?" thread at the top of the page, it has INVALUABLE information. If you have vacation or sick days available to you, I strongly encourage you to take some time off and knock out some intense research. Get caught up with what is going on w/ her so that you can help her and yourself. You'll be so grateful and empowered with this knowledge. If you can get her past the initial stages of treatment to where she is functioning better cognitively and psychologically and neurologically, then she will be more engaged in her tx and life can get a little closer to normal for your entire family… small steps.

And GP's suggestion to find an outlet is also important. You have to be a whole person in order to help her.

Hope this helps. Keep posting and asking any q's.

p

Posted 5/31/2015 7:15 AM (GMT -5)
Is there any way you can get her to come here to post? We might be able to help her see that she needs more help.
Posted 5/31/2015 8:04 AM (GMT -5)
There have been really good suggestions here. I was going to chime in re asperger's (wife & stepson, to be honest, sound very aspie-ish to me) and wanted to offer a tip for communicating. When something is very pressing and you need to be sure you are heard, it takes an unbelievable effort. You can say something like "I need to talk with you about something and I need to be sure you hear me and that means that you need to NOT SAY ANYTHING until I'm finished. If that's not going to be possible now, then I will wait. But I don't want to waste my time or effort talking to you if I'm not going to be able to say my piece." Then lay out exactly what you are seeing in terms if her illness & how it affecting things, and what you are proposing. be as specific and concrete as possible. If she turns it around on you you can say "we can talk about me in a bit; this is not about my shortcomings" or something like that. Stay on track, be concrete, have a plan, don't be afraid to leave it and come back to it at a better time; You'll have planted a seed.

Best wishes.
Posted 5/31/2015 11:48 AM (GMT -5)
Kev - if you suggest she comes on here as a member for support...make sure she knows she will be anonymous...and (you may not like this) - tell her you won't know what she is posting...she may need privacy when getting support here. And - let her have the anonymity. It's not about her keeping secrets at this point...it's about her getting much needed support so she gets treatment.

Also, if we find her a LLMD that someone here on the forum recommends...maybe you could say to her that you've been concerned about her and found a LLMD that could help her...maybe hearing that you are involved and really want her to be well...maybe she will accept the offer?

And, do start another thread...so you get as many reponses as possible: "Looking for LLMD in/near ______"
Posted 6/2/2015 5:30 AM (GMT -5)
Thank you so much. I will resolve to try this approach.
We did get as concrete a diagnosis as mainstream medicine can provide for Lyme disease and I did myself see a bulls-eye’s rash. We had shortly before been for a walk in the woods.
At the time we lived in a stinking great big concrete jungle of a city, so I just wanted to go for a scenic walk in local woods. I am open to that day being ground zero although from what I know of her history, some of the symptoms cut across to a time I did not know her.
For example, she was quite isolated before and it seems that minor squabbles with family always turn out to be blood feuds from which there is no way back. This is disproportionate given that she otherwise describes an idyllic childhood living somewhere warm. She has always been in close proximity to stray and un-vaccinated animals she rescued.
I observe what I regard as Asperger's traits in both of them that need to be ruled out or similar, but she will not accept or understand this.

Your comments help because I have been wondering whether I am cracking up myself. Her responses hold a basis practical reality, but some thoughts seem disproportionately amplified with all emotional capital fully invested in them.

Thank you all, this is very complex to convey and much of this response I deleted because I am simply not sure if I am missing something that skews my views.


Moonflower78 said...
There have been really good suggestions here. I was going to chime in re asperger's (wife & stepson, to be honest, sound very aspie-ish to me) and wanted to offer a tip for communicating. When something is very pressing and you need to be sure you are heard, it takes an unbelievable effort. You can say something like "I need to talk with you about something and I need to be sure you hear me and that means that you need to NOT SAY ANYTHING until I'm finished. If that's not going to be possible now, then I will wait. But I don't want to waste my time or effort talking to you if I'm not going to be able to say my piece." Then lay out exactly what you are seeing in terms if her illness & how it affecting things, and what you are proposing. be as specific and concrete as possible. If she turns it around on you you can say "we can talk about me in a bit; this is not about my shortcomings" or something like that. Stay on track, be concrete, have a plan, don't be afraid to leave it and come back to it at a better time; You'll have planted a seed.

Best wishes.

Posted 6/2/2015 7:05 AM (GMT -5)
I just read this. Powerful information and I already see there are many things she could use to fight back .

Her sister is coming to visit us soon and it will be a rare opportunity I have to speak to a member of her family. What would be great is someone who is on her side entirely; even if biased against me who can provide some level of support / perspective . But the reality is that I have no evidence that her and her sisters relationship is conducive to that.

My inclination is to have a reasonable conversation with her sister about it . If I were to present this to her first, she would tell me that she would rather divorce and name the terms of separation and get into a much of areas I specifically function by now dwelling on. Thus this would be a big gamble.

The trouble is , she does declare herself better. Although I can now re-concise creative rationale like saying stuff like, "I have always been sensitive to light" or "I have always been distracted " or "I'm "dizzy and tired because of a low blood pressure" - I have no reliable way of knowing her true real time state. So long as she prematurely declares herself healed, she continues to make decisions or join herself to decisions of mine that are not in her best interests or my own. I'm presuming the good people on this site follow the dietary advice for example.

Interestingly enough she is the most sugar addicted person I have ever seen. A typical cup consists of 10 artificial sweetener capsules and around 3 sugars. She acquired a very quick tolerance for alcohol despite not having drunk until recently.

Doubtless the situation has led me to take life decisions and gambles I should never have took without due consideration - for example, we live in a fairly remote spot in the mid west.


Traveler said...
Please, Kev - read this. It's short and will explain so much, yet it is just the beginning. We are here to help both of you.

www.tiredoflyme.com/so-you-have-a-friend-or-family-member-with-chronic-lyme-disease.html#.U3dTc3bbS1t

Posted 6/2/2015 6:26 PM (GMT -5)
At the point I can ask her to seek help, comradere and joint cause here, I will also ask the mods to delete my original posts if that is possible. I think she should no matter what happens. Right now, she will either rage, break down or put the shutters up. Tonight she suspected I had seen a mystery package of medication other than the antibiotics and put the shutters up. What am I to do, rummage through her bag and take away her digity ?She's not making this easy at all.

She would not want to be remotely associated with the more intimate or de-feminising symptoms flare ups can have. I can only make educated guesses as to which she has experienced. Sitting up right and still for a reasonable period seems to be an issue. The amount of arguments we have had which start with me offering the full use of my office desk and chair whilst she studies is unbelievable. Noticing visible discomfort whilst upright, I offered my perch on the chase lounge and her reply was, a very loaded "why?".

Tonight I noticed very heavy breathing and an aigitated posture. It looked like when someone really wants to pee.

I gently mentioned that my likely reaction would be to go and buy her some more. The risk in nobody knowing what she is taking is lost on her. Sexual intimacy issues... where do I start!

I realise my embarassment in a person I have shared my life with for years not feeling comfortable enough to leave even life saving bread crumbs in my trust is very low priority at this moment.

I am still in shock at the capital she felt she had to invest into concealing the ongoing effects or minimising them. I understand in her logic, it is the right thing to do, but in the normal course of events, to call it counter productive is an underststatement.

I understand the range of issues this causes in general but a part of me wonders if it has been somewhat easier to argue with me without limit than leave room for me to realise what has happened.

Girlie said...
Kev - if you suggest she comes on here as a member for support...make sure she knows she will be anonymous...and (you may not like this) - tell her you won't know what she is posting...she may need privacy when getting support here. And - let her have the anonymity. It's not about her keeping secrets at this point...it's about her getting much needed support so she gets treatment.

Also, if we find her a LLMD that someone here on the forum recommends...maybe you could say to her that you've been concerned about her and found a LLMD that could help her...maybe hearing that you are involved and really want her to be well...maybe she will accept the offer?

And, do start another thread...so you get as many reponses as possible: "Looking for LLMD in/near ______"

Posted 6/2/2015 8:20 PM (GMT -5)
Hi Kev,
I was going to wait before saying anything on the forum about my situation. I just got my husband to go in for the most basic of testing for Lyme disease, Tularemia, RMSF and Ehrlichia. Those are the only tests his doc was willing to do. It's a place to start.

What you don't know is that I was infected & undiagnosed for 37 years, had one year of abx, was an abx failure, and then - 40 years after being infected, finally healed using herbs. I met and married my husband in the middle of all of that 15 years ago. He did not get infected from me, as I said, we have been together for 15 years, and his symptoms are brand new.

While he was as supportive as he could be- and he took really good care of me - he couldn't understand what was happening to my body or my mind because he wouldn't learn anything about Lyme. I'm afraid he's about to know what I went through. cry I wouldn't wish this on my worst enemy, much less the one person I love with my whole being.

Here are the things I presented to him:
cassia.org/checklist.htm

or you can go to page 9 of this document:
www.lymenet.org/BurrGuide200810.pdf

I actually prefer the second one, but if you think she might only be willing to look long enough to do a short one, then use the first link.

Of course, if your wife chose to join and post here, let us know and we can most definitely delete your posts - but don't forget you need help too. If you would like for me to look to see if there is a Lyme literate counselor for you - to help you deal with what your wife is going through, please just say the word. Send me an email by clicking on the blue envelope under my name, let me know what area you would like to find one in and I'll see what I can do.

Remember that this is not the woman that you fell in love with, this is a very ill person that is doing all that she can to survive. Many of us have been in her shoes before, some (like me) for many, many years and it's amazing what a person will do to "carry on".

I would suggest that you just give her space - as much as she seems to need, but don't go too far away physically. You don't want to give her the impression that you don't care, as that's obviously not the case, or you wouldn't be taking the time to reach out to us now. The woman that you fell in love with is inside her, hoping that this madness will end some day, likely thinking she can do something to make that happen. It's really quite sad to me.

The other thing, if you can find a way to bring it up, I'd be happy to try to talk with her through emails. You can find my basic story by following the link in my signature line below, and you can feel free to ask me any questions about my experiences, or about this site.

Just let us know how we can best help both of you, and hang in there!!!
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