Lyme and family structural breakdowns

Wife and I are now 1 year into the lyme battle but we have had lyme all our lives, and this lyme that has insinuated itself into our family over the many years has totally fractured it. We as parents do not know or have contact with our children any more. We do not know our 2 grandsons. We know that our daughter had her first born now within the last few months but we do not know if we have another grandson or a granddaughter. Christmas is here soon. It will be so hollow. It will be so painful emotionally. The psychological damage that lyme has done to our family is gigantic. Our brothers, sisters, cousins, nieces, nephews, so many people and no one is talking with anyone. Estrangements are the norm and not loving contact. Lyme has destroyed so many personalities now and continues to do so, but those relatives now who also have this scourge do not even realize that we as several extended families, have more than half of our individuals suffering from lyme and from the psychological devastation of lyme and because of this disease, denial now rules, and our loved ones do not see that maybe the answer is in our own health and that there is light at the end of the tunnel if only one looks for it. Because of this decades long, life time long scourge of lyme, we are all suffering together and we are in reality all alone with no support for other family members. It is a horrible way to face Christmas. Lyme disease and bartonella, thank you for destroying our families (sarcasm intended). Wife and i are beyond hurt in these family situations. xfmlg

Hearing this again, from yet another family, is heartbreaking.
Going through so much loss and it's no fault of your own, suffering from so much already.

For me, losing family has been the one part of this horror
that has been the most painful, and damaging to me in body and spirit.

I am sorry, deeply sorry to hear that you are both in the midst of this,
and I understand too, how the children leave our lives, taking away
our grchildren, we are hollow. I am sorry for your losses.

The one thing I do hear in your post is that you are together a couple, working on your personal health paths, and that in itself could be said a miracle. Right? How awesome, how blessed to hear. How many couples can't/don't stay together through this? Too many arent' able.

Also, those of us that suffer with these tbd that are 'in the know,' such as yourselves.... well, we get to be the light, the one that goes first that makes a path, the one that does so much of the work, we are the ones that will be so changed from our due diligence and healed/changed/healthy in body and mind, the others will have to stand up, take notice and start to question.... when they are ready, if they ever are. Some may be, some won't.

So, please don't give up hope. You deserve to have your family around you. They deserve to be with you, too. All in due time. This illness is a marathon on every level... especially in the scope of relationships. I urge you to think of holding your grchildren in your arms, loving them, talking to them, feeling them in your Spirit, and get to know them, and them you. I believe this will help bond you to those babies, and when you meet them, they will know you, and you them. Start mending your heart today, and think of the good feelings, the positive ways you desire your relationships to be, and grow them from the inside out, starting with your heart and mind. Draw to you what you want...Love those children and grchildren. Allow yourself to feel them in your arms and heart. Cry, laugh, love them actively.

My daughter also had our first grandchild, a girl, a few months ago and I wasn't allowed to see her, nor be a part of the birth event, or after. I died inside. I understand. I was being denied because of the ways these illness had changed me over the years, made me a nasty, angry person for years. Now I know why. Now I am changing and being loving and positive since my formal dx last year. But, I still was denied. And, after weeks of crying and feeling the loss, I began to accept that I had my granddaughter with me always, and my daughter, too. I began to do the above, and hold them close to my heart, in my thoughts and prayers and talked to them daily, rejoicing in who they are, and the love we have for one another. A few weeks ago a shift occured, and my daughter is now coming here to our home to visit, and is starting to let her wall/guard down. Change can occurr. Please be encouraged.

Through our healings, our keeping on keeping on, standing together (thankful for all those who stand with us), we are able to be more of a change than just within ourselves. Like you said, so many are dealing with this and they don't know it... yet. They will talk to others outside the family, and they will start to hear. You know how people 'close to us,' don't know anything? ;) Well, all in due time.

Please know you are not alone, we stand with you... and I believe your family will be united, and stronger than ever. I'm believing their eyes and hearts will be opened to the truth and reality of what's going on. Sooner than later.

Praying for you to have the strength to continue forward and reach the summit.

I'm very sorry you and your wife are going through that emotional struggle when you need family support. I sure wouldn't do that to any of my family, even if I had never had Lyme or other health struggles. I think this faster paced world adds to it some.

One of my daughters doesn't seem to like me much and it hurts, but there's nothing I can do about it. Maybe when she's older she'll come around. I have 2 brothers that hardly call to see how we're doing

Keep coming here to get the support and understanding you both need.

That was very good of you and your wife to take care of her father. What a lucky man he was. I helped my mom through it for only 3 years and that was hard, so I don't know how you guys made it through 10 years. We had to place my mom in care home since she would be up and down all night and my daughter and I were getting worse. It was hard to make that decision, but at least in wasn't a nursing home. She settled right in.

I hope in time that your kids will come around. I'm glad you found this forum and I hope it's helpful. Keep up the battle!

Xmflg—
This thread affected me so much I couldn't respond until now. I am so very sorry that you have experienced such pain, grief and sorrow. It's hard enough watching yourself do things you don't understand and don't like—but then to experience your old self in glimpses, long enough to bring the realization that you did, in fact, lose your mind. And you hurt those you love and need. On top of the illness—it's almost too much to bear. The psychological attack of this disease is by far worse than the physical pain and suffering. Unfortunately, I know both. I can endure the pain but there's nothing more terrifying than losing your mind.

But you do still have each other. Soaring Free is right—it's miraculous. MIRACULOUS.

Soaring Free—
What an absolutely beautiful post. Thank you for sharing it with all of us. I will have to revisit this thread. And will have to remember this:
"Also, those of us that suffer with these tbd that are 'in the know,' such as yourselves.... well, we get to be the light, the one that goes first that makes a path, the one that does so much of the work, we are the ones that will be so changed from our due diligence and healed/changed/healthy in body and mind, the others will have to stand up, take notice and start to question.... when they are ready, if they ever are. Some may be, some won't."

Unfortunately, lyme & co. struck me before I even got a chance to start a family… and all the wonderful people in my life I have pushed away and all the relationships I destroyed now haunt me. And it's rendered me all alone. Entirely alone.

Fortunately? Unfortunately? once I started the IV abx at the beginning of the month… all the memories came rushing back to me (why? is this a herx?) It's been an incredibly difficult two weeks. And I don't know what to do to even begin to repair relationships with people I haven't spoken to in 15 yrs. And I know I'm just beginning my battle so maybe I should wait… but going through this alone? I don't know if I can do it alone.

BUT… at least I am here—I got to this point by FIGHTING. so, I know I have a good start. ;)

-p