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Posted 11/27/2015 11:17 AM (GMT -5)
5 years ago today, I came down with "flu" and have been, to varying degrees, sick ever since. I've been treating for Lyme since Sep. 2012. IV ABX knocked back the Lyme enough that I could return to work, part time, after 14 months out. Built up to 32 hours per week. Plateaued there, then health began to worsen. Kept those hours at the expense of having any kind of "life." Started with a new LLMD in July, got approved for unpaid intermittent leave to handle the herxing. Yay, financial stress! Was improving when bart drugs stopped working last month followed by 2 major (and one minor) plumbing failures in last 2 months--talking collapsed ceilings, hole in water tank spraying large volumes at high pressure kind of failures. More financial stress! Changed drugs, antihistamines and alka gold for breakfast to deal with the nausea.

So, basically, not having a good time here. Then, the day before yesterday, my mother tells my sister (who is visiting from out of town) to convey to me that she no longer wants to spend time with me because I "make her feel bad." Yes, there were a couple of recent triggers, including my snapping at her in front of other people, but apparently this has been building for months because she has interpreted my being quiet during car rides as evidence that I am hostile and angry with her. And I don't show her affection. And I behave differently towards other people than I do towards her--which is particularly odd since she rarely sees me interact with other people. And, and, and, none of which she ever brought up with me.

True, we have never had an easy time getting along with each other but she had been amazingly supporting when I when I was housebound (really a turnaround from her behavior earlier in my life when "supportive" meant not actively critical). So, this was both a complete *** moment and also really very familiar.

So per my sister I was still supposed to come to Thanksgiving dinner but the symphony concert I was going to take her to tonight was "probably not." What complicates things is that she is really good at masks. So she was "normal" with me yesterday, but that doesn't mean anything. Not a peep from her about tonight's concert. She also had a major tears on both sides row with my sister but I gather it kind of cleared the air between them. And, yes, I do trust my sister's reporting on this, we are each others best friends (she too had Lyme and co badly for several years).

I don't know what to do about this, I am already so freaking tired, struggling to keep up with work and taking my meds on schedule, in one or another kind of pain most of the time and I just don't need this new psycho drama with her.

Anyway, thanks for reading this far. I guess, in addition to some moral support, I'm hoping that someone can point me to an article for Lyme patients' family members that would make clear what we go through, the challenges of chronic illness, the depression, rage, anxiety, exhaustion, despair etc. something that could illustrate that this really isn't about her.

Thank you for any help you can provide. I'm glad I have this forum to turn to.
Posted 11/27/2015 11:21 AM (GMT -5)
http://www.lymefamilies.com/wp-content/uploads/2009/07/Boundaries101_for_Lyme_Patients.pdf

Sorry, literally dashing, but thought this might be of use? Traveler posted it the other day...
Posted 11/27/2015 11:29 AM (GMT -5)
Wow, you poor thing. You sound stressed. My two sisters are having problems right now and I have to be very careful not to get involved. I wonder if the holidays doesn't bring out some of this stuff??? And a full moon??

With your sister having had lyme, you would think she would be a little more compassionate.

Anyway, on Hulu you can watch the 1 hour plus movie called Under Our Skin. That is a good video. For those that need to read, just google lyme stories and read some of those and pick which one you think they might relate to.

Good luck.

~Annette
Posted 11/27/2015 11:54 AM (GMT -5)
You don't feel well & are certainly not obliged; however, I think one person extending the olive branch, whether the offending one or not, can help. I would say something like, "I'm sorry Mom if you misinterpreted my feelings/actions with you, or if I may have hurt or offended you in some way. I am just going through an INCREDIBLY difficult time, beyond words, and trying my best."

With that said, if having your Mama around typically creates a toxic environment, then for self-preservation, distancing yourself might be the best. I have had to do that with a few toxic ones, one friend reminding me saying, "It's like you are in a life raft & throwing another to a friend, but your friend is dragging you down & drowning you. Sever that rope."

Glad you have a wonderful sister you love, & who also knows first hand what you are going through! Cherish that relationship! And wonderful to hear you are feeling at least good enough to go to a concert!

(SS~good counseling paper!)
Posted 11/27/2015 1:14 PM (GMT -5)
I want to chime în. I also had recently problems with my mother în low telling stories to my dads girlfriend with whom I am not în the best relation. I was complaining to my husband and got the "you are fighting with everybody "so I had to be smarter and stop. So when my Sister în law asked a lot of questions per SMS I was able to tell her în an very elegant manner that I am not ok with talking about a person behind her back and that I am gratefull for her otherwise hands on help. Face to face I would not be able to handle it în this manner so maybe the best way is to write her a mail or message. Because I Know how upset I can get în an argument. I am with you that we should be handled with silk gloves while we are unwell. And pleeeeease stay as calm as you can during this time. Also you are fortunate that your Sister can be by your side having had the same problem before. Big Hugs, Ioana.
Posted 11/27/2015 3:00 PM (GMT -5)
Ziege-This is really long. I apologize but it's by far the best one I've read of these I've seen and the link is no longer good.

Ten things to remember if you love someone with Lyme Disease.
It’s never easy to understand what another person is going through no matter the cause. The saying holds true that you’ll never truly know unless you walk a mile in their shoes. In the case of Chronic Lyme Disease, there is much to be understood by not only those who know someone with it, but the person battling it as well. Let it be known that this article is by no means a sympathetic appeal, but to give an honest voice of reason to the person battling Chronic Lyme Disease who can’t always find the words to explain the complexities of their circumstances.
1. They’re not crazy, they’re not lazy, and it’s not all in their head (pun intended)

This gravy train needs to stop. There has to come a point where reality takes hold and reality is that a highly evolved bacteria with lethal intent courses through the blood of a person with Chronic Lyme Disease; literally dismantling the human body in a malicious manner over an extended period of time until death becomes. That’s reality. All other claims are a true reflection of a person’s inability to reason effectively.
2. They’re not stupid. They’re under the influence

So you have the distinct pleasure of having a conversation with a person with Chronic Lyme Disease. Did you notice that they may not appear to be as smart or possess the ability to articulate words much like they used to? Were they not able to recall an obvious time or memory that you both shared? Did they come to a complete stop in the middle of conveying a thought? Don’t worry, it’s not them. Within their brain, there exists a bacteria releasing deadly toxins that are directly interfering with the nerve relapses of their central nervous system.
3. They’re on a special diet

You may have the intent of asking a person with Chronic Lyme Disease to join you for a meal. Maybe even one that you cooked but not without your love, passion, and hard work. Here is the deal. If your meal or a place you intend to visit for food contains either gluten, dairy, or sugar, they can’t eat it. They’re on a diet designed to deprive their body of food that directly feeds the bacteria within their blood and provide the essential nutrients their body needs to allow their immune system to take hold. In a nut shell, they’re trying to avoid adding more fuel to the fire here. Yes, this includes alcohol.
But no one is denying the food is just as delicious as the bacteria in their body is deadly.
4. They’re not ignoring you. They’re reeling

It’s been a while since your friend or relative with Chronic Lyme Disease reached out to you. Let’s be honest here, living in a constant state of mental and physical pain, accompanied by eccentric, uncontrollable, and unprecedented symptoms, with a life that came crashing down isn’t really something to show for; especially when these truths are in their face at all times and can’t be ignored. A person with Chronic Lyme Disease can’t talk about a party they went to last night, or the degree they’re majoring in at college, or the job they’re working, or simply what they plan to do this weekend. You want to know what they’re doing this weekend? Here’s what they’re doing. They’re most likely laying in bed or on the couch, in a both physically and mentally ailing state, wondering time and time again why they happened to be the lucky person to contract such a life altering disease. Their aspirations have come to a complete stand still as their life now almost 100% of the time revolves around restoring it. Can’t you just see how eager they are to talk about their life with you? They have nothing to impress you with.
Also consider that in addition to the reeling, a person with Chronic Lyme Disease more than likely may be experiencing what is know as floating, and more than likely is exhausted in attempting to explain what they’re going through to members of their own species when they themselves don’t have all the answers.
5. Yes, they had to leave their job or drop out of college; or both

If a person with Chronic Lyme Disease can’t even carry on a simple conversation, how does one expect them to delve into the untouched matters of the universe in their college course or the physical demands of a job. Such societal demands require either an incredible amount of critical thought or physical energy, both of which a person with Chronic Lyme Disease lacks greatly. Chronic stress is usually a constant factor in college and work and it directly compromises the immune system. It’s the last thing a person with Chronic Lyme Disease needs when they’re aiming from every angle to remove a deadly bacterial infection. The ultimatum to leave college and/or work, even though it may be temporary, is never taken lightly by the heart.
“They’re currently struggling for truth and answers as they’re not easy to find.Try not to make them feel like they owe you more than the truth.“

6. Stop saying “Well you look healthy to me”.
Unless you have both microscopic and magnetic resonance imaging (MRI) for eyes, all you can see is the delusional exterior perfectly concealing the destruction that is currently in effect under the skin of a person with Chronic Lyme Disease. A person doesn’t need a visible wound to identify a debilitating physical and mental state of existence. You’ll never find a person with Chronic Lyme Disease whose eyes constantly fall out of their socket because of their condition. Almost 100% of all the visible evidence needed to determine how severe or ill a person with Chronic Lyme Disease is resides within their interior. The debilitation can only be felt and truly understood by them.
7. Yes, they’ve been enduring it for many months or even years
Hopefully by now, you’ve made the rational decision to forget the ignorant notion that 3 weeks of antibiotics are all that is needed to remove Chronic Lyme Disease from the body. If not, you’re going to have trouble understanding this one. From when the first symptom starts, until the day a person with Chronic Lyme Disease is in remission, many years may pass. Why is this you ask? Well it’s very simple you see. Between a combination of doctors who abide by outdated medical standards, ambiguous symptoms, inaccurate and deceptive testing, and when finally a diagnosis is clinically agreed upon because testing failed time and time again, treatment alone for Chronic Lyme Disease will take a minimum of a year because of the highly evolved complexities of the bacteria and possible coinfections. The entire endeavor is no over night fix. It is the ultimate test of patience.
8. Treatment makes them feel worse
The idea that treatment for Chronic Lyme Disease causes a person to feel worse is almost counter intuitive, but only to the unreasoned brain. You see, every Lyme Disease treatment protocol must contain either a non bacteria-resisted antibiotic or a supplement of some kind that boosts the immune system in order to effectively eradicate the bacteria. Got it? Ok. Now when the Lyme Disease bacteria is killed by either the immune system or an antibiotic, toxins are released from the outer member of the bacteria, causing a person with the infection to feel 100x worse than your worst hangover; or worst flu if you don’t drink. These endotoxins flood their internal organs and cause what is known as aherxheimer reaction within the body. If a person with Chronic Lyme Disease kills off too many of the Lyme bacteria in their body at once, the herxheimer reaction can become so severe that it can actually kill them.
For the record, the severity of their herxheimer reaction is a direct cause and reflection of their mental and physical state that day.
9. They don’t have all the answers

It’s human nature to inquire about a friend or family member whom you know is not feeling well. You yourself want to understand what is currently disrupting their health and if possible, help them along and expedite the healing process even if it’s just by a few good words. When confronting a person with Chronic Lyme Disease for answers, you will find yourself leaving the confrontation with less knowledge than you had expected to leave with. The reason it that they don’t have all the answers nor do they remember the few they have due to their faulty memory. This also includes a timely explanation of why their life is not adhering to the exceptions you may have had for them. They’re currently struggling for truth and answers as they’re not easy to find. Try not to make them feel like they owe you more than the truth.
10. They’re not bipolar

If you find yourself around a person with Chronic Lyme Disease often, you’ll notice that their mood or condition changes quite frequently. One day they’re happy, feeling great or coming off quite intelligent, and the next day they’re sad, depressed, irritable, or feeling physically horrible. Though these continuous fluctuations in a person with Chronic Lyme Disease may lead you to believe there is something else wrong. There isn’t. This is actually quite normal because their bodies have been biologically hijacked by a highly evolved bacteria with the intent to kill and cease their biological function.
Posted 11/27/2015 4:07 PM (GMT -5)
ziege, I can commiserate. This has been quite a year.

In April my father told me he was going in for a minor procedure due to blockage in his leg. He said it wasn't anything to worry about. He was going into surgery on May 1st just overnight for observation. My uncle was bringing him to the hospital and was the person they were going to call. I live in another state 700 miles away, one sister is an alcoholic and the other works 7 days/60 hours a week to put food on the table.

So by 10 at night when I don't get a call, I call my uncle and he tells me they didn't call. He called my niece (who happens to work at the hospital) and she said that she was the contact and she couldn't give him any information because he wasn't on the HIPAA (she later said nobody but my father and the drs know who is on the HIPAA because my father registered by himself).

I got on the phone with her and she told me that no one had told her to call me. I didn't say it but my thought was "the surgery went wrong, I'm the eldest, I'm his POA and mother's POA/healthcare proxy after my father (she was in an SNF), use your brain." At the time I was unaware of my niece's personality (mental illness?).

So I got off the phone and booked a flight for first thing in the morning. I got up there and my father was terrible. I was actually there 5 days and he doesn't remember it. During that 5 days I slept 3 hours a night. My father was in the process of moving to a smaller apartment so I had to prep everything for moving. Translate that to collect all the paperwork that could be used to take over my parents identity and everything go value. My alcoholic sister steals anything not nailed down.

I then spent 5 weeks trying to figure to why the surgeons weren't calling me. He ended up having 10 surgeries. Late one night (after a surgery when I wasn't contacted but had been assured by the doctor that I would be), I started making phone calls. I found out that the contact information had been changed. I had left three out of state phone numbers I could be reached at. Someone (my sister) had called in and told them I had a local number I could be reached at (my niece's).

All along, the surgeons had been calling me at my niece's phone number. They thought they were talking to me. When I confronted my niece about it via text message (not ideal but only option) she of course said "I asked the doctors and they all said they had already called you."

Eventually, her lies piled up. She told me my father told her to tell me he wanted her to have is car keys and his debit card. Oh, but her won't remember because he had mild dementia while in the hospital. 10 surgeries and 3 icu visits will do that. Interestingly though, when I visited my mother she said not to let my niece have any of the bank information.

All the while, i have my sister (her mother) on my case drunk dialing between 8 and 10pm every night.

When I got into the financials, I found out my niece had been gouging them on the phone bill $50 a month (which they didn't have) on the phone bill. My niece also "bought" furniture my father "was getting rid of anyway" (he still owed $700 on it, I know because i paid the bills) because he was moving into a smaller apartment. He was moving because he couldn't afford the one he had without my mother's socsec (she was in an SNF). She refuses to pay the $1300 she promised him.

So my father has been in 2 hospitals and a SNF since May 1st and he's still there. The night before my mother died, my niece was sitting next to my mother taking dictation into her phone about how my mother wanted to have get each piece of furniture or small piece of jewelry (they don't have anything else. no money either). Then she and her mother (who was drunk at the time) went to the nurse's desk to try to change the contact information for my mother. Fat chance. I had spent 5 months arguing with the SNF to get my mother the proper care, they did not want to get on my bad side.

The day my mother died (3am) why little sister and I had to wait around until my father would be awake to tell him (5 long hours). As soon as my sister told my father and left (my uncle was with him) she called me and I had the joy of calling my other sister. The only good thing was 8am was too early for her to have started drinking.

Get this picture in your head. Miss Piggy with the back of her hand(?) on her forehead saying saying Kermie... Fifteen minutes after i called my sister, my niece calls and says "Who is doing the eulogy? I need time to prepare my remarks." That was the picture in my head.

So for the next 5 days, my sister and my niece felt it was all about them. My sister started with complaining that I wasn't bringing my children up. Yeah right, $4000 to get my family up there. Two canceled or modified business trips for my husband and three days of lost wages for my daughter.

I made an executive decision. I would do the eulogy and all the grandchildren took part either by reading, bringing up gifts or as pall bearers. At the wake, my sister picked a fight with me about it. I completely lost it and pushed her (Lyme rage definitely). You could see the fear in her eyes. My niece held court in the back of the room with a lot of whispers about how mean i am because I'm excluding her.

Instead of sitting next to my father (I'm the oldest), I sat at the opposite end and let my sister (the alcoholic) sit next to him. My poor father had her grieving all over him, instead of letting him be the one to grieve. The good news there was that half way through she told my father she was going to have a cigarette. She never came back. There was beer in the car.

They both continued on disrupting the funeral. The priest actually had to leave the altar to speak with my niece about her behavior. Everyone in the church heard what he had to say to her. My sister had a temper tantrum at the reception when she found out there was no alcohol. She is not the only alcoholic in the family and I didn't want any scenes. My sister and my niece spent the whole reception playing there favorite game -- Let's bash Auntie Kim. Problem is they didn't know their audience. I've known most of the people there since I was a baby and they no me.

In the entire time since my father went into the hospital my sister has visited him three times (the wake/funeral don't count) and asked for money (he doesn't have) each time.

For me, it's easier now. When my Dad gets done rehab, he'll be moving down near me because I am the one who will be taking care of him. He is also financially dependent on me at least for right now, since his socsec and pension don't cover the snf and we had to file for Medicaid.

I don't need to talk to my sister or niece. The one exception is when I see my niece in small claims court (as POA I can sue her for the phone and the furniture). I can honestly say, if my sister dropped dead tomorrow I wouldn't even send flowers. Harsh, but she severed those ties long ago by stealing from me, my parents (she pawned my father's wedding ring and skipped out on a rental agreement that my father co-signed) and has thought nothing of breaking promises to visit my parents (the least of her behavior).

Family is very difficult. We are stuck with them especially if they are our parents. We feel guilt when we are mad at them.

My parents were 2 miles from me and moved away to be near their great-grandchildren when my mother was dying. These are my nieces children and they rarely visited her. She took two long years to die. They put me in the position of taking care of them from 700 miles away when they moved away from me and my kids. So yeah I'm still mad and that is ok.

Someone gave me advice just before I got married. There was major trouble with my inlaws. This counselor said that you have to do everything you think you can, but when you've done enough you have to move on. You are the one to judge when you've done enough.

You can't control all parties involved and it should not be only you who has to give. The hardest person of all to deal with is a parent, but they are the parent and should want what is best for you. In the end the only person you have to live with is yourself.

Feel free to vent. At times there is no one you can talk (sometimes including your spouse) to and this is a good place to let this kind of stuff out. If you need to talk more you can email me, I understand perfectly what you are going through.

Kim
Posted 11/28/2015 4:35 PM (GMT -5)
Ziege,

FIRST I am so very sorry you are going through all this and having trouble with your family, esp. mom.

I am the mom. My son has been very sick for over 2 years now, took me months to figure it out, thought it was behavior issues. He has no pain, it's all psych and neuro. Raging, angry, tics, ocd, odd.

I never leave him, I figured it out and got him to two lyme specialists. I have treated him with abx, herbs, detox and diet, no/low carbs yeast and sugar for 1 1/2 years. Ok, I leave him to go to the store or something, but it's rare for any length of time or "fun stuff".

He in return hates me, curses at me, tells me I'm the worst parent ever, destroys the house and property. Yet, every day I have to get up and care for him. There have been times when things are better, but then a new herb we use kicks his .... and we are back with Mr. Nasty.

This has shredded our family, my marriage, etc. even though everyone KNOWS it's the disease, it is VERY hard to swallow rough words and behavior.

Last fall I was suicidal, I could not take anymore. I have been walking the path through he.. and back with him, essentially alone. All I did was heavy research, 24/7 and care for him, determined to get him well.

At this point, I am so tired and so broken.

I even say to people, it's wrong, I know it's not about me, it's about him. BUT, the bottom line is, it has destroyed my life too. I will not leave him or stop caring for him until he is well, but it has taken a serious toll on my mind and body.

I have four children and I love them all, with all my heart. They are my world and my life (of course I have to find something now that the last one is in high school and I'm lonely with two gone).... I would give my life for any one of them.

BUT.... on many many an occasion, I walk around hysterical crying and saying I can't take this anymore, I can't do this anymore, I'm just not strong enough and it's killing me to see my child who should have been amazing in high school, miss it all... so far, 3 years.... of my four, he "had it all", and now nothing.

It is beyond heartbreaking not to be able to fix it and help him more/faster.

So, I don't know what has transpired between you and your mom, but she may truly be at a point she can not handle it anymore. This illness is not just about the patient, caregivers fall apart too....

Hugs.... hoping things get better for you.

I have an email that is enabled. If your mom would ever like another mom to speak with, I am always open to it. You could email me and she could give me a call or email me as well.

eileen
Posted 11/28/2015 9:15 PM (GMT -5)
Just wanted to give a big thank you to all who responded. Your words and suggestions have been very helpful to me and I am grateful for the time you took to write these thoughtful posts.

A couple hours after I posted, got an email from my mother asking about driving to concert so we went to the concert. Pretty normal interaction so I don't really know what goes on. Fortuitously, I have both a neuro-psychiatrist and regular therapist appointments this week so run all this past them and see what's the healthiest approach to handle this.

Again, thank you for your help.
Posted 11/28/2015 9:59 PM (GMT -5)
Ziege, I feel you. Really really sorry to hear you got this horrid monster of a disease, it really is one of the worst if not the worst in the world IMO

Post Edited (LymiesBrother) : 11/29/2015 1:08:43 PM (GMT-7)

Posted 11/29/2015 10:03 AM (GMT -5)
Ziege, maybe have your mom read all of this, if she is the kind of person who has an open mind and is willing to bend and learn and ultimately understand and give you the love, understanding and compassion that you truly need and deserve.

It has taken me a long time to be convinced that "it's the disease talking to me" and no really my son as I used to know him. It's hard not to take things personally from someone you love so much, to not feel hurt by their words and actions. I'm better at it now. I understand that when he says get away or leave me alone, he means it for some reason, but sometimes he is better and really needs and wants that hug and reassurance that we will get him well.

LymiesBrother, why don't you ask your parents to do some research and read Cure Unknown and ask them to open their minds, share what you know and bring them into the light of knowledge to support him. Your brother is not going to be able to do that.

It sounds like your parents, like many are ignorant about the whole disease. They say it is silent, but rapidly becoming the next HIV, but back then, no one had a clue about that either. They needed people to educate them.

I failed my son in 2010 by taking him to and infectious disease dr. and getting him under treated. The bottom line is that I was ignorant. I did not know there was such a thing as a lyme dr. or what treatment was critical or that it was all so life threatening. I WISH I had. I'm still trying to forgive myself, but really there is nothing I can do about something of which I had no knowledge. In 2014 when they said he was OCD, ODD, TICs and Bipolar - THAT was when I would not stop and give up because THAT made NO sense. Too little too late, but finally, my knowledge and education prevented us from committing him to a psych institution... that is how bad it was .

So, if you really want to help your brother, in a loving and respectful way, educate your parents. You don't realize, but at this age, we generally carry A LOT of stress, much of which they may not have burdened you with and you may not realize what THEY are going through. They are only human and can only bear so much, care for their parents, care for all of you, jobs, bills, perhaps their own health... It's a lot. Maybe you could have them read this site too ...
Posted 11/29/2015 11:13 AM (GMT -5)
Lovemychildren, I very much appreciate your viewpoint on this matter. What's challenging to me is that the main complaints seem to be related to things I'm not doing; I have not been throwing Lyme rage fits at her or anything of that nature.

She flat out said that my not talking during car rides means I'm hostile and angry with her. Um, no. I'm tired and stressed by a two hour each way trip my "local" Lyme doctor who has zero to offer me at this stage.

And "not talking" does not mean I do not respond to what she is saying with acknowledgement or questions or observations, just that I am not maintaining a dinner party level of chat. And I think that is where the "different with other people" complaint comes from. Well, that's a completely different environment and is a massive expenditure of energy for me that I pay for over the following days with increased symptoms.

I have always been an introvert and social events, even having lunch with a friend, while enjoyable are also draining, even before I became ill. My mom, on the other hand, is an extreme extrovert. I really don't think I should be expected to be "on stage" every moment I'm around her, especially given how little energy I currently have.

And why not ask me if I'm angry or upset with her if that's what she thinks? Why stew about it silently until the resentment builds to such a point that she feels she can no longer be around me? How is that reasonable behavior? She knows, or at least she's been told and had occasion to observe, how destructive emotional stress is for me. I was supposed to work Friday but was too worn down and symptomatic. The weekend was spent largely on the couch or in bed and Monday was going to be a challenging multitasking day now made far worse by getting nothing done either work wise or household wise over the last three days, things that have to be done soon, really yesterday. I still haven't even emptied the dishwasher that I ran Friday night.

So likely another unpaid day off to get blood drawn, see the neuro-psych, food shop, wash clothes, clean up the kitchen to no longer a health hazard level, put air in the tires, fix the hole in the fence so the cats don't become coyote-chow, gosh, maybe even put up the christmas lights on the porch. All but two of those things were supposed to be done Friday and Saturday, so I could rest Sunday in preparation for the work week.

You know, at this point I am just so pissed off. I make you feel bad? Hey, I feel bad. I feel bad almost all the time and have for the last five freaking years. But I'm supposed to be able to read your mind and entertain you?

Whew, yeah, I really need to speak with my therapist, which is another energy suck albeit a necessary one.
Posted 11/29/2015 12:25 PM (GMT -5)
I'm laughing and crying for you and with you! It sounds like you live alone, and if I were your mom, would come and alleviate many of those tasks for you, knowing you need rest. ... and really, the heck with the lights! I have not done Christmas cards for 2 years! Just don't have the energy or interest anymore. Eliminate anything you don't HAVE to do, it'll still be there the end of the week or whenever you do have energy. There is no rule that says you have to get it all done... ever really!

WOW... you have much on your plate and need love, understanding and TLC. Information like this from you helps me learn more too though (not that it helps you much, but maybe at least to vent?).

My son faces out the window in car rides and I try not to speak, cough, breathe (or even my hands moving on the wheel can set him off). I also took it as hostility and anger (well, there was a time it was), it never occurred to me about energy.

I know it takes all he has to get through a day at school, hide the ticks and focus on class. Last year he was on in home instruction most of the year, but he was lonely and depressed. This year his grades are just ok, but in my opinion, amazing for struggling to heal and balancing honors and AP classes.

I have learned not to shout, argue, or really demand or expect anything from him (or anyone else in the house anymore). He is on the computer 17 hours a day and then sleeping. I never see him do homework, or even leave the computer. He games, is on the internet, etc.

He was social - I was too, but not so much after having the four children, but now, most of our so called friends left. His and mine. Really teaches you who your true friends are and I have about 3-4 but that is ok, this has all taught me a lot.

My daughter is like you. I occasionally asked her through the years if she was ok and happy with her life, even though alone. I just worried. Turns out, she loves her own company, is always in her own head and is happy that way and I'm good with that. She is currently living and studying in Paris, I just worry about her going places late and alone all the time. Even when she is home, she is off to herself, on the internet, studying, researching, etc. It's just nice to have her around. I still think she might have Aspergers, but that's another can of worms and I could just see her face if I said anything! Oy!


Your mom needs to accept and love you for who you are, and be there to save you from illness and exhaustion. It sounds like moving in with your parents to care for you would not be relaxing or beneficial to you. Many patients do that and it helps. I'm also guessing you have tried to tell her how you feel? Or would that fall on deaf ears? Hearing what you say here, sounds like she would not communicate with me either. :(

If you are not happy with your LLMD, is there another one you could see? I'm afraid it might be farther though. Some will do phone consults and you do not have to see them as often. May be something to consider?
Posted 11/29/2015 12:41 PM (GMT -5)
Hey Lovemychildren Mom,

You are 100% right that you parents of lymies are in an extremely tough situation yourself. Your child has a disease which current medical science has no clue how to treat and barely acknowledges its existence. You are not doctors. You are not clairvoyants. What the heck could you possibly do? You did the thing any good parent would do. Take your child to the doctor, explain the symptoms. It's not your fault the doctors dont know about lyme or how to treat it.

And how are you supposed to know about lyme disease? My brother got lucky 4 years ago when one doctor of many finally did a full blood screen in which lyme was one of things tested, and it came back positive. If this hadn't happened, we would still have no idea about lyme disease at all.

So honestly, I apologize for my harsh post earlier. It applies more to parents who have been explained to over and over again about this thing called chronic lyme, and refuse to ever accept it as a possibility or offer to support their child wants to pursue treatment from an llmd, or ND who might use herbs or do alertative therapy.

You taking your son to an infectious disease doctor is you giving your best effort, you did and are doing the best you can. There is nothing more anyone can ask than that. You have nothing to regret to be on hard on yourself about. You are a great parent, and I thank you for that!!

II should have added to that my parents are awesome, I love them dearly, and they have come around in a big way to accept lyme as a possible reality. I don't really care of they ever fully believe it /comprehend it or not, I get now that's what's more important is they truly love both of us and want the best for us, that's all that matters.

Post Edited (LymiesBrother) : 11/29/2015 10:57:06 AM (GMT-7)

Posted 11/29/2015 1:04 PM (GMT -5)
I hear you, LMC. Actually, putting up the lights is the one thing on that list I actually want to do!

Yes, I am very like your daughter--I did my undergraduate degree in Ireland and it didn't trouble me at all to be on my own at the age of 19. And I very much like living on my own. I read a really enlightening article last year about introverts and extroverts. Seems that extroverts get energy from being around other people while it takes energy for an introvert to be social. Introverts do enjoy the interaction but they then need to have some quiet alone time to recharge.

My mom is in her early 70s now and she was a huge help when I was housebound. But since I partially recovered and am working 4 days a week, I don't think she really views me as still being sick and I try to limit my asks of her. She certainly knows that I traveled to Seattle (from PA) to see a new LYME MD this summer(still occasionally seeing my original guy, mostly to get liver, kidney etc bloodwork done) but because I also visited my brother out there, she refers to it as my vacation...Selective hearing sometimes? New drugs to treat Bart for the first time and to address resurgent Lyme so more ups and downs.

Not that you could tell from recent posts (yes venting helps), but usually I try to stay positive about my illness, more emphasis on what I can once again do versus what I still can't. "i will get better" is what got me through what I think of as my year on the couch. But this means sometimes I over do, which makes me feel worse, and I don't make announcements about today's list of symptoms which maybe I should. The positive attitude which I need to keep myself going may mean that others are not aware of just how sick I still am.

Also, there is certainly compassion fatigue. I've been encountering that from some friends lately. The whole get worse when you start treating, again, in my case, is evidently very difficult for people to grasp. Emotionally, getting 80% better, then relapsing is harder than the initial illness. And bart symptoms just seem more intrusive or acute or just more really really annoying than the Lyme.

I'm impressed with your diligence. The situation with your son sounds incredibly isolating for you. Do you have some kind of support system, other than this forum?
Posted 12/2/2015 8:06 AM (GMT -5)
Lymies Brother, thank you. I really am trying. It consumes my life. It is SO frustrating to not get him well faster and completely. Two steps forward and ten steps back every time we do something new - ugh. (guess this is what ziege was speaking about - almost there and then starting over). Thank you for the kind words, it is that and love for my son that will keep me going. I'm glad your parents are receptive and learning - it could mean the world to your brother!

Ziege, Thank you too. I read that article also! Loved it! Kinda explains my daughter and myself....I thought my behavior was from being and only child, but maybe not! I worried when she was younger, esp. when people said things to me about her. Now I just look at them and say, she is different, brilliant, happy and awesome just the way she is. (so basically if you don't like her behavior, leave her - and me - alone!). I love being around her when she gets on a roll chatting :) - It's not often, but that's ok!

My other daughter was supposed to go to Ireland last year and things fell apart. She was really disappointed, but maybe she will follow your route and go later.

Seattle was hardly a vacation, that's absurd. I think I know who you saw and that whole trip must have cost you a young fortune! I'm hoping he really helped. I have the name of a good dr. in Pa. if you are interested. He has lyme and treats himself and others.

Bart is prob. my son's worst problem. I think we kicked the lyme awhile ago.

Yes, your attitude and push to remain active, independent, etc. probably deceives people. Maybe suggest to your mom that she "check in"occasionally and actually say to you, "are you well" or just using your positive side to keep going? This way, she would really know where you are coming from and not assume you are at your 100% remission level. Chronic illness is very hard mentally, exhausting just to be sick physically, but SO much effort to think positive, every day... very draining...

Support, huh....the forum, a few others who are sick of hearing it, but still listening with saddened hearts and faces. There is a new group starting here in NJ, but I hesitate to go as when I hear others, I'm freaking out that I'm not doing the right things or seeing the right drs. Then I'm in a tailspin which is not very helpful. I tried therapy too, not much use imo. I just have to get up every day, get through it and do my best for him. I'll be better/ok, when I get him better.

You are a trooper, a wonderful role model as are many on this site, you are all stronger and more amazing than I am for sure and I'm not infected! Had a lot of other illnesses, tragedies and surgeries, so I get long haul healing and recovery, sure wish it was me, not my son going through this! I'd give anything to take it from him!
Posted 12/2/2015 10:26 AM (GMT -5)
Hi LML, good post as always. Wanted to respond to a few of your points--pls forgive typos, big bandage on middle finger from cutting myslef when cooking--stress makes me clumsy.

I really hope your daughter is able to make it to Ireland. A. It's an awesome place, an amzing combination of ancient and cutting edge modern side by side and the people are genuinely wonderful. B. It's a cliche but travel does broaden the mind, more so when done as a young adult, it expands the vistas fo what you see as possible for yourself. Some folks worry about their kds "changing" but I really believe this sort of experience helps them access all their strengths and potential.

Well, seattle wasn't cheap but the point was to try to get beyond the75-80%. My local LLMD was great getting me that far back but Dr. R's integrative approach captures so many other factors, not just specifically treating co-infrctions, but also looking for detox mutations (which I do have) and supplementing for that, other means fo supporting the immune system, using herbals in addition to ABX, etc. etc. I also like his transparency, so willing to explain and share information. I look at the cost in comparison to the wages I'm losing not working full time. Geeze, if he can even get me another 4 hours a week, the return on investment will be stellar.

Re your doctor recommendation, I'm north of Pittsburgh and I'm guessing your guy is near Philly. The appeal with Dr.R is his phone consults, so once a year air travel trip versus monthly 5 1/2 hour each way road trips (with car sickness being yet another gracious gift from Lyme&Co) is actually preferable.

One thought I had re your son is that most teenage boys go through phases where they seem like demons from the nethermost depths of hell sent purely to torture their parents and that's without the added sulfur of lyme rage and other diease induced brain chemistry imbalances. But they do grow out of it and so will your son, just from getting older and from getting better.

"This year his grades are just ok, but in my opinion, amazing for struggling to heal and balancing honors and AP classes." I knwo you feel terrible about hte limitatins the illness has put on how he is living these high school years, but you have made it possible for him to not jsut keep up with his peers but to excel beyond them. Seriously, I did several AP classes in high school and wht matters is not the grades or even the test result (although getting to skip basic freshamn courses is sweet!) but the experience of pushing your brain to work at a more advanced level, really learning how to think. He;s doing that now and it will help him every day for the rest of his life.

So hang in there. Time and treatment will amke this better. Though at the moment I am right there with you on the 2 steps forward, 10 steps back frustrations!
Posted 12/4/2015 10:17 AM (GMT -5)
I keep thinking I should be bringing him to someone else, but he won't go beyond where we are and what we do now. Maybe in time.

I think you are right about the age, it was a perfect storm... raging lyme/bart in a 15 year old boy. It was ... well, there are no words and I woke up every day wondering what the heck was wrong and was this just a nightmare and I'd wake up. I can't imagine how he felt when I was trying to figure it all out.. .and that took me like 6 months :( I'm just grateful it was not longer!

I just mourn for all who have lost so much time and quality in life. He would have been top 10 in class, lead in school plays and an eagle scout by now. All gone.... so is the potential for full scholarship as he planned... ugh.

But for some reason, this is his life plan and mine is to be here to walk it with him..... lucky us, huh?

Then again, I have been able to meet people I would not have met and help and encourage many, figure out that some have this disease (whether they listen or not - ready to strangle my friend of 35 years... she ignored me for over a year telling her ... NOW, she tested positive on one band.. and I know she will STILL ignore me :( - all I can do for those people is continue to say, I'm sorry you are sick :(

I'm really happy your drs are getting you so far along... maintaining remission is the name of the game for life, just always a challenge I'm sure. I guess we will find out!
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