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Posted 5/19/2015 3:06 PM (GMT 0)
Are there any videos out there that show and explain what people with Lyme and Bartonella and Babesia go through? How the infections can totally completely mess up someone's mind so they're not able to control what they say and do like they normally would be able to.

I literally felt like I was loosing my mind when things were really bad. I tried as hard as I could to control what I said and did when things were bad, but I didn't always succeed.

My sister doesn't believe me at all that I'm actually sick and that I really had no ability to control some of the things I said or did that have hurt her. She basically wants me to apologize for things I would never have done if I hadn't been sick and that there's no way any of what I've experienced could actually be real.

We had a fight and I did and said some things that scared her. I know I was basically feeling absolutely horrible at that time, and I had to go an do all the farm chores because it was her day off. The problem is I don't remember much at all about the incident itself. I started taking some herbs for brain inflammation, and I'm feeling a lot more like myself. To the point where I now know that incident wouldn't have happened as it did if I were feeling normal and well. I know what I did was wrong (based on what she and my dad told me happened), but I really can't truly apologize for what happened because it wasn't me and I wasn't fully in control of myself at the time. I also didn't find out I'd made a mistake until after. At the time, acting on the information I had, the actions I took were justified.

I did send her a long email detailing what I'm going through and generally how I see things. She really doesn't seem to understand at all. I just want to make one last ditch effort, because otherwise I don't want to continue having a relationship with her.

Post Edited (sayyadina) : 5/28/2015 6:46:15 AM (GMT-6)

Posted 5/19/2015 5:20 PM (GMT 0)
If you want her in your life, apologise with no excuses. What is done is done and the past is gone. Today and indeed, only this second is real. The past is only a memory and the future does not yet exist.

If you keep carrying this suffering around it will continue to make you more ill than you need to be. If you don't want her in your life, what she thinks doesn't really matter.

https://www.eckharttolletv.com/p/qdvd77
Posted 5/19/2015 5:22 PM (GMT 0)
I'm sorry you're struggling with this. I don't have words of wisdom to share, can only commiserate w/ what you're feeling. Lyme destroyed nearly all of my relationships. It didn't matter how much time I spent explaining or how well I described my condition. Some people are completely incapable of understanding. Even best friends and family members.

One of the last of my long time friends and I kind of "broke up" last week because of his selfishness and my incapacity to put up with it during MY health crisis and all the damage I did before because of my incapacity to be a better friend, myself.

It's a no win situation and it's not going to change overnight so why fight it. You need every bit of energy to heal and can expend the extra energy you will have after healing, apologizing and doing what other people need.

Often it's situations like these that reveal who people really are. It's yet another "symptom" of the illness and you have to accept it at face value. When you are well and whole, you will be better equipped to mend fences and broken hearts but you cannot change people… and for everyone who passes through your life, there are others who are ready and committed to stay and you need to make room for them. ;)

p
Posted 5/19/2015 5:45 PM (GMT 0)
Be honest and straight forward. If it were me, I would apologize and tell her that I was not myself and did not mean it. I'm so sorry that you're struggling with your relationships.

I hope that she will open her eyes and see how much you're struggling.

I'm sorry. I know Traveler posted some great links recently. I can't find the thread for you. I know that some of them are in the New to Lyme thread though.

I hope you can work things out and that your sister becomes more supportive! Hang in there. Having Lyme can be so rough.
Posted 5/19/2015 6:03 PM (GMT 0)
Do you still live with her?

I find that the best way of dealing with family is simply by letting go.

My sister and I no longer have any contact, and as awful as that sounds, it's better for me than being really depressed by her continued dismissals (which happened even before I had Lyme).

The other thing I've found is that lengthy conversations and emails simply don't work. You dig yourself in deeper and deeper.

I would opt for a brief apology, and an even briefer conversation, and then just let go as much as you can.

Keep things cordial and polite, and don't talk about your illness.

Margaret
Posted 5/19/2015 9:22 PM (GMT 0)
If it was part of Lyme and/or Bart rage, here are some articles that support those things:
underourskin.com/news/scientific-evidence-lyme-rage

And there are many, many posts on here about those dealing with Lyme rage - me included. I used to go out and find the biggest branch I could carry and beat the livin' cr*p out of some poor tree, or I would split firewood - making sure that the dogs all stayed inside so that they didn't end up hurt.

When my Lyme & Bart rages would hit, it was like I was no longer the person I was - even when sick. It was like someone else had invaded my body - someone very, very pissed at the world! So I was careful to not let hubby get involved - I love him and he's been there for me too many times.
Posted 5/19/2015 9:41 PM (GMT 0)
I did finally find a couple of videos that I think portrays Lyme rage well:
/www.youtube.com/watch?v=2L1XcEuNFCU

/www.youtube.com/watch?v=p04sEDo_qDc
Posted 5/20/2015 12:03 AM (GMT 0)
So your sister can email me to get a better perspective of what you are going through - if she will. Just have her let me know that she's your sister so that I understand the context. I'll be happy to explain all that I can to her.
Posted 5/20/2015 1:42 AM (GMT 0)
sayyadina, I have a couple of view points on this. I don't know that I have ever had rages, but I did find out about this recently when I was asking about the possibility of Lyme being passed to an infant while you are pregnant.

One view I have is that one of my sisters was a drug addict from high school on. She's 51 now (a year younger than me) and the drug of choice is alcohol. While I was in college, she stole from me and my parents. She stole checks from me and I had to make good on them. She sold my father's wedding ring. My Mom still makes excuses for her. I do not. I was at a party for my aunt and uncles 50th Wedding Anniversary and she was so drunk she was embarrassing my Dad. I flew up from about 700 miles away. At one point I followed her to the bar and put my hand over her wine glass and said no more. She was stunned. I said "you've had enough and you're embarrassing Dad". She ran to the bathroom crying. I went back to the table and there were my parents and my sister's 2 adult daughters, all of their mouths had dropped open. I said it was time someone said something and I didn't have to live near her so it might as well be me. My mother followed her to the bathroom and came back and said that I had embarrassed her. Too Bad! Everyone expected me to apologize. Fat Chance! Mother made excuses for her. She would be able to stop if only it weren't for her husband who also drank. As an alcoholic, the burden rests solely on your own shoulders. My Dad knew that. He is recovering Alcoholic. All while we were growing up he drank but he was a high functioning drunk. He only drank beer, but when he switched to hard liquor my Mom told him if he didn't stop she was kicking him out. He never drank another drop. He's one of the rare people who was able to do it on their own.

Neither myself nor my other sister have ever drank anything. Alcoholism runs in families. We are pretty sure that My Grandfather drank but he died at my age of a heart attack so no one knows what would have happened. My father and Uncle both drank but gave it up. My sister drinks and her son also drinks. I haven't seen my sister in 3 years and from all reports she looks 10 years older than me instead of one year younger.

The other view of this is that my Mother-in-law is schizophrenic. My grandmother was also but back when she was diagnosed they "treated" it with a lobotomy. Didn't cure it, but at least with my grandmother it took away the violence and made her fairly easy going. When she was alone or in the nursing home she lived in, she argued with the voices but when she stayed over our house she didn't respond to the voices if there was anyone around. I remember hearing her one early morning and wondering what was going on. My Dad was in the room and when I walked in he told my grandmother that I was in the room. She stopped her argument. Later my parents explained.

So when I met my husbands family he hadn't mentioned anything. His parents were born in Italy and moved over here as adults. All the family (his aunts and uncle and grandparents), acted like there was nothing wrong but she was very violent and completely off her rocker. I never let it bother me until my daughter was old enough to be effected. The first thing to realize is that nobody acknowledged it because they felt it made them look bad. The second thing is that in the culture she grew up in parents put all their energy to their sons because sons were expected to take care of their parents. Any energy put into girls was lost because they got married and moved out.

My kids were seven years apart. When my son was still an infant, my in laws came to visit for Thanksgiving. My mother-in-law fussed all over my son and ignored my daughter. At seven years old, mental illness is hard to understand. My daughter, who is now 22, has never forgiven my Mother-in-law. Except for the mental illness, my mother-in-law is the healthiest person I know. She is actually now doing well because they have a liquid medication they add to her food (she's unaware that she is taking it).

The damage is done though. I often joke that she will out live us all, but it's not really funny because if she does my daughter who is the oldest of the cousins by 6 years will kick her to the curb. She will not ever forgive her and I don't blame her one bit. My Mother-in-law has been extremely mean to me over years, but I at least have some experience with the disease and put down my foot a number of years ago. She was calling us and harassing us by leaving hour long messages in italian on the phone. I was very sick at the time and one day I picked up the phone and told her that I was not going to put up with it any longer. If she continued to call and leave the messages, I would change the phone number and no one would be given the new number. Since then she has been polite. A while back, she was declared incompetent and my sister-in-law became her guardian. That has led to the current state of affairs where she is not totally rational but the medication works well.

So the reason I told you all this is that 26 years ago before my husband and I got married, his family was struggling with our relationship. Even though we are both Catholic, his family was very traditional. His sister went to a small Catholic college. We were living together. His family wanted us to be counseled by one of the priests there. The priest was young and said that although most people think living together makes people more likely to have good marriages he had found that people walk on egg shells and it leads to more difficult marriages. I told him that I don't walking on egg shells for anyone. He said that as far as the family and my husbands mother went we had to do everything we thought we could to resolve things, but after that we needed to go on with our lives.

Twenty six years later we're still married and I still don't walk on egg shells. We frequently go to Disney and a while ago I started renting a motor scooter so I could save my energy. It worked well. My husband would say "oh, you don't really need the scooter do you?". I would say yes I do. He wanted to save the money. We used to drive down (it's about 8-10 hours from here), but I finally put my foot down and said I wasn't going to sit in the car that long. If I had to sit in the car that long, I wouldn't be able to enjoy the trip because of the pain. For a long time, my husband would say "Oh we can drive and save money". So I would say no. I know longer mentioned the scooter I just booked it.

I stopped apologizing for my disease, whatever it is. I just did what was best not just for me but for the family. If I'm miserable, then nobody has a good time. My sisters continue to call and ask me for things, especially money. I went to college and they didn't. That is not my fault and they are not entitled to the things I worked for. I am sick and because of that I have been unable to visit my parents in CT. They had retired to FL, then my Mom (who has been sick her whole life) ended up spending a lot of time in the hospital. My Dad could not take care of her alone, so they moved to NC to be near me. Two years ago, my Mom was so sick we thought she had very little time and they moved back to CT to be closer to my sisters and the rest of their grandchildren and great grandchildren.

Two years later, my mother is doing fine. My mother, my sisters and my nieces are pushing my father to an early grave. My mother is demanding and my sisters take advantage of my father. They ask for money he doesn't have and expect him to drive them everywhere. They go over to my Dad's and expect him to cook dinner without ever bringing any groceries. Two weeks ago, my Dad went in for a routine procedure and ended up in ICU for 5 days. I had to fly up there and get everything set up so that I could take care of things from NC. I am Healthcare Proxy for both my parents, POA and executor for their wills. No one but my parents and I know that if they survive me then my husband is executor. There is already grumbling because my sisters have no say. My niece has asked me for their Debit cards and the keys to my father's car. I said No. She whined about what if my parents need something. I said I would make sure that they would have money if my parents needed it. She then made the complaint that she needed the car keys because my father wouldn't be able to get into her car. Like she was going to pick my Dad up from the hospital. she didn't bring him and certainly wasn't going to take time off work to pick him up. Her nose is really out of joint because my father's chart now has a copy of the healthcare proxy and the doctors are not asking her permission. She works in the hospital and feels she should be the one making decisions. Too bad, so sad.

Anyway, I didn't mean to whine.

Here's what I meant to say. You have to do what is right for you. Explain it once and if they don't get it don't worry about it any more. It sounds like you own the property. If your sister makes life too hard, kick her out. You do not need to deal with her. Hire someone to do the chores if possible. There must be some teenagers who are looking for extra money. Do whatever works. You are what is important. It's time for you to be the center of the universe. It's time to be selfish.

Good luck. Kim
Posted 5/20/2015 9:52 AM (GMT 0)
I agree with rowingmom on this one. Maybe for different reasons, but I agree 100%. I used to be very combative when I was younger. Now I try not to upset anyone, even if it is not my fault. It has brought me much peace to exchange combativeness and self-righteous for humility and love. I would apologize. She may never understand the whole lyme thing. It is not worth it to me to lose a sister over something so silly. I can no longer hold grouches against anyone. Not even the incompetent doctors that didn't treat my children. Life is too short. Apologize and it will set you free, even if she doesn't forgive you. Don't feel humiliated if she doesn't forgive you. Humility is a great virtue. Unfortunately, not many people understand it and I think that is causing the turmoil that we are seeing today.

Once I was able to get rid of pride (the opposite of humility), I became a much better person to everyone around me. I found peace in my mind and soul. Some may consider this naive, but I think the opposite is true. What kind of life is to leave any other way? For me, this is better, I have tried both ways. In the end you will both benefit. Instead of hurting each other, forgive and love each other. Past is past, put it behind you. We only have the present. Tomorrow it may never come.

Post Edited (Simela1) : 5/20/2015 4:06:33 AM (GMT-6)

Posted 5/20/2015 12:29 PM (GMT 0)
Morning Sayyadina,

I believe you have to do what "you" feel is right. My own family was extremely dysfunctional and my older sister and brother abused me emotionally and sometimes physically.

When I became sick with lyme, no one in my family understood (including my parents) and at first I kept trying to get them to understand with no luck. I decided to stop using my energy to try to convince my family as well as certain friends and I stopped talking about lyme and how I sick I felt.

Years later after I healed some members of my family heard about lyme disease and would ask me about it as well as friends. I have always said that people don't get unless they "get" it (meaning lyme)...

Use this forum for support as we get it. Last but not least I remember when I first started Jernigan's protocol and was feeling better physically I noticed I had this "rage" inside of me. I was not angry that I had lyme, actually I was relieved because I knew what I was dealing with so I could get better so I didn't understand this rage I was feeling. I called up Dr. J's clinic and spoke with someone that worked there and they told me I probably had a buildup of ammonia in my brain and to try the neuro-antitox CNS/PNS formula which I did for the duration of my treatment. Sure enough I calmed down. Just wanted to tell you that.

Do what is best for you (personally I think your sister is acting horrible and needs to grow up). Be glad she is leaving in September and if you can just ignore her until she is out of your life. You don't need negative people who will try to bring you down. You have enough on your plate.

Hugs to you,
Denise
Posted 5/20/2015 1:56 PM (GMT 0)
Sayyadina,

I stopped dealing with my sister when i got sick with Lyme.
Because i learned from past experience.

When i was 34 (16 yrs ago) i had a stroke and the Neurologist told me to take a year off (reduce stress) and recover. My Mother thought it would be a good idea if i moved near my sister.Which was really not necessary.

But i let my mother push me into it... my sister had a small apartment that i could rent, which would be vacant shortly, so i could stay with her for a "few weeks" until it was move in ready.

She came down to Ga and "helped me" move (later i realized that she wanted to assess my belongings before they were boxed up). I found out a few weeks after moving there... that the tenant never planned to move out.
My sister replied to my questioning..."well i was planning to kick him out if he doesn't mow the darn lawn"... The entire property her side and his side... *incidentally not in rental agreement.

I had given up my place in Ga and was now stuck (which is what she planned). She thought that she was going to have a live in housekeeper- she actually introduced me as the housekeeper-but then would laugh and say no thats really my little sister. All in her plan to humiliate me while making herself appear the hero... it was sad.
She was demanding money from me every time she thought i had any (she did not know that i had savings....thank God!)... She was expecting -EXPECTING me to do ALL the household chores- as well as taxi driver for my four nieces/nephews (talk about laundry!)... It was all so very wrong.
I scrambled to find a small apartment and managed to get away from the house (and get ahold of some of my items that had mysteriously been unboxed and hidden in her attic)(i had storage in her huge garage only)... i still did the taxi thing for the kids... but would not do any household chores unless she paid me. She thought that 20 bucks a week was a fair price for "a few hours everyday"
I told her that would be a fair price for doing the kids laundry... and that i would not charge her for babysitting. Which she also expected all the time... i would only do it in the morning to help the kids get off to school (so she wasn't screaming at them before school) and i would be there after school until someone came home.
There is Alot more to the story... she was physically,emotionally abusive to me to me growing up... there is just too much to go into.
Anyone that will ignore the abusive nature of your sister while your sick... needs to take another look... maybe they don't quite understand how damaging that is.
You don't have to defend your decision to let her be where she is at... you don't have to apologize if you don't feel right about apologizing.

Where is the apology for her part in the situation?
My guess is that she doesn't ever apologize for her behavior.

I can see where she antagonized the situation... And what a horrible thing to do to a sick person... and she most likely made it much worse than it actually was... I mean really... I didn't see where you had hit her or threatened to hit her typed anywhere... and she had every opportunity to walk away... rather than to antagonize a sick person.
My sister did that to my brother when he was sick... and she laughed at him... which angers me to think about. He is schizophrenic ... he had an incident with me in the past... where he scared me... but i knew that it was his sickness... and never required an apology. He was able to spend his energy on getting better... and we get along to this day.
*I tried to deal with my sister as best i could... BUT... she taught me who she really is...
An extremely,selfish,conniving,untrustworthy individual... I am supposed to deal with that when I'm sick? Hell No!
Nobody should have to deal with that nonsense... like putting the hand over the drink and saying you've had enough... its called boundaries.

*Let her run to the bathrm and cry...let everyone else run to the bathrm and feel sorry for her... You know the truth!

* I am also the executor for my Mother and Step Father... because she cannot be trusted.

I would suggest that you avoid her drama as much as possible until she leaves...and then take a good long sigh of relief. She doesn't want to understand your illness... she wants to manipulate the situation to make herself look like the victim.

I would not allow her to come back under any circumstances...
I would leave there myself before dealing with that again.

You do what is right for you and your recovery!

I hope you can take moments out under the sun and/or stars... and just be with you and your higher power. Some kind of meditation would be helpful during this "waiting period" IMO.
*Ask Me How I Know ;)
Posted 5/20/2015 2:15 PM (GMT 0)
I can def relate my family does not understand this illness at all and people just think you are looking for attention and just snap out of it i learned to just let it go because until you have walked in that persons shoes you just have no ideal
Posted 5/20/2015 3:18 PM (GMT 0)
Deejavu and Bellyful, Exactly!

I was living and working in MA (this was 23 years ago) when my most predominant symptom was headaches. I was going to a headache clinic in Boston about an hour from work. The treatment included Biofeedback and Group Therapy.

I had an epiphany at one group meeting. I finally figured out that I had a choice in what burdens I was going to carry. My Mom would frequently call and complain about my sisters. She basically gave that burden to me. I learned that it was ok to say, No I don't want to hear it. My Mom felt better after dumping it all on me. It's hardest to say no to family and parents most of all. When my kids were school age, I learned to say no, i can't be on this or that committee. I wasn't going to volunteer to man this booth or sell wrapping paper for fund raisers. I just said no. No explanation. No apology.

Someone once said to me, if you don't take care of your self you can't take care of others. I took that to heart and every now and then I put myself first. The last time we went to Disney with my kids (15 and 22), I stopped in the middle of walking towards the next attraction. Everyone asked me why I stopped and I said because we were not going to go to the attraction they were headed for. We were going to a different attraction. They (my husband, son and daughter) all said why? I said that I wanted to go to a specific attraction and this time I was going to put myself first. I go to the attractions they want and usually miss the ones I like because I put the first, but it was my vacation too and this time they were going to do what I wanted.

Simela1 and rowingmom, I get where you are coming from but I have to disagree. You shouldn't apologize for something that you didn't do. Some people will take that as license to walk all over you.

I was an engineer before I was unable to work. I spent four very long tough years in college to earn my bachelor's degree. I got a good job and worked very hard at it. As a woman I had to work twice as hard as the men in my group to get the same recognition. Some weeks I worked 60-70 hours. Along the way, I had some very good managers that recognized my work. I married one of my co-workers. We both got our Masters degrees (actually my son attended classes with me because I was pregnant during the time I was in school for my MS). We both did it while working full time. So we made good money. We earned it and saved it.

Along the way I helped my parents, my sisters and my nieces and nephews. I actually paid for my sisters wedding and soccer camp for my nephew who ended up with a soccer scholarship.

Even though I don't work now, my husband makes good money but travels constantly.

My daughter graduated college in December. She had a job already lined up and was moving out of state 700 miles away. She works for Disney, so no time off for Christmas or Thanksgiving. So we planned a big trip before she moved. We went to Hawaii. My doctor gave me prednisone to suppress my symptoms so I could enjoy the vacation (I know it's bad for you but at the time I didn't know that I possibly had Lyme). We had a great time. On Christmas Eve we were at Volcanos National Park.

My husband made a post on my nieces Facebook page asking her to show my parents some of the pictures we had taken. My other niece also posted. She said how dare you go to Hawaii when you haven't visited your parents in 2 years. My parents had moved back to where I grew up because my Mom was very sick and wanted to die there (2 years later she is going strong). Between my husband's travel schedule and my Fibromyalgia, it had been too hard to travel up there. The couple of times I made travel arrangements, bad weather canceled my flights.

I very kindly responded to my niece via a private message rather than making a public post. I told her that how often and when I visited my parents was between them and me. She has not earned the right to question me at all. I also asked her how often she had visited my parents while they were in FL or near me in NC unless it was to get a free trip to Disney World (my parents paid for everything). The answer was never. I also asked how many nights she sat with my father in the hospital expecting my mother to pass away at any moment. The answer was none. I ended it by telling her it was none of her business and to keep her opinions to herself. If she pulled this again, I would take her apart publicly instead of doing it privately.

My mother is in a nursing home. My niece has never once visited her. My father has been in the hospital for 2 weeks and she has never been to visit him.

I have nothing to apologize to her for and it is her responsibility to mend the rift between us, not mine. If she doesn't its no big deal. I don't need her negativity in my life. My father once said to me that he loves her because she is his grand daughter, but she's not a very nice person.

You can only do so much and then it is up to the other person. If they won't meet you half way then its time to move on. They are the person who is responsible for the problem.

The thing is this all stems from jealousy that I am able to take vacations like cruises, visits to Disney and Hawaii and she cannot. Too bad. I worked hard for everything I have. No one gave it to me. I have never sponged off anyone. If she wanted to go to college, we all would have helped out. Instead, she decided to get pregnant in the hopes that the father would take care of her. That didn't happen. So she's bitter.

So, no one should feel an obligation to fix a relationship when they had no hand in breaking it. It's not healthy and makes our diseases worse. So do the best you can and move on. You'll be a happier person.
Posted 5/20/2015 5:43 PM (GMT 0)
I have a brother like Sayydina's sister, and sometimes, there really is no dealing with them. I'm fortunate that I don't have to rely on my brother for anything.

Sayyadina said: "At baseline, I've come to realize I have a very strong inner Jewish mother. Gotta make sure all my 'kids' (~40 animals) are fed, safe and happy and I'm rather obsessive about doing everything I can to take the best possible care of them."

Thank you for saying this!! I thought I was the only one around that was this way!! I'm constantly teased about taking care of my livestock like they were my children!!! I don't care either. I was brought up that I was the one that asked for them (by buying or bringing them home) so it was my duty to them to put them before myself in many instances. If I can't care for them to that level, it's time to get rid of them. Fortunately, I no longer have to rely on the income I received from them, so I could do just that when I got too sick.

Hang in there Sayyadina - do what you have to do to make it through until September!!
Posted 5/22/2015 3:22 AM (GMT 0)
So it sounds like there were many relationship problems for years between the 2 of you and perhaps Lyme just made it worse. That is completely different than what I had in mind. I hope being apart will benefit both of you. Certainly the stress slows down your healing.

I hope your condition will improve once she is away. Also, I know my opinion is different than most, but I do not see it as submission. I rather see it as two wrongs don't make a right and I am more than willing to step on my pride than to have arguments. I do not expect everyone to have the same views.

It sounds like you went through a lot. My mom made some big mistakes when I was growing up, too. But we worked things out and although she still can't see things my way, she often confessed to my sister she knows she did me wrong and she is sorry and stunned she did what she did. I know she is sorry, although she may never admit it to me--I think she wants to minimize the extend to her mistakes.

I hope you and your sister find peace someday and treat each other like real sisters should. Nothing matches having a real sister!
Posted 5/27/2015 3:17 PM (GMT 0)
"I'm simply not willing to kill myself in order to have a relationship with her."

Yes, please don't. You too are a living being that has needs and desires too - and news flash!! They are just as important as your sister's - more so if truth be told, considering you are battling such a horrid set of infections.

And keep on venting here so that you can deal with what you need to!
Posted 5/28/2015 2:10 PM (GMT 0)
Hugs Sayyadina, you know I don't have much to offer anymore, but care for you. Seems we are all always between a rock and a hard place and just want the world to go away....

many hugs and prayers...
Posted 5/28/2015 6:18 PM (GMT 0)
I've been shut down for about a month myself, just nothing left to say or ask anymore, and don't know when he will ever heal or reach remission :(

All I can offer you is that I'm here and if you ever need or want to email, feel free, I'll always answer you.

You know how I feel about sis! :)

Therapy taught me you can work with someone, work around someone or walk away... sounds like you have found option 2 by now :)

Hang in! ei
Posted 5/28/2015 6:21 PM (GMT 0)
I'm exhausted reading everyone's stories. I have 2 siblings that are still, in their 40s and older, and are both disasters. One is extremely bipolar, yet unmedicated and I refuse to be alone with her because of her uncontrolled schizophrenia rage. And the other is in prison for meth manufacturing. My parents are children and toxic.

Extended family and step siblings all know what is going on with me and I've heard from NO ONE in 7 months, most I've not heard from in over a year. I could tell some shockingly dramatic stories of family dysfunction throughout my childhood and since, but I no longer have energy or interest in it. None of it serves me, except really to shock people. Although, there is also no one left in my life who is interested… two failed engagements and countless other romantic relationships and friendships because of this disgusting disease has destroyed me and who I was.

All my "friends" have moved on (except two who live on the other coast, whom I've not heard from for a very long time, they don't "check in" on me). I have no friends and very few acquaintances locally, I have no one to call in an emergency, I hold back tears every time I'm forced to admit I have NO ONE to put as my emergency contact. Sounds of loneliness SCREAM in my ears in the middle of the night sometimes and I cannot believe my life.

What to do?

Focus on my recovery. Once I get there, I'll tell my story. And it will hit those who truly care, very hard. Most likely, they will want to reconnect out of love, or maybe not out of selfish shame. It will always be up to them. And I don't care about anyone else.

And when I get back to my life, I will move on and create a new me and surround myself with all the great things in life, once again. And I will tell my story. And I will do everything I can to help our cause so that others won't suffer like we have. I promise.

Focus on your next steps.

p
Posted 5/28/2015 6:38 PM (GMT 0)
Pirouette, you can put me on your emergency contact list! Breaks my heart for you and those so lonely and broken. That may be my son some day. Def. would have been if I hadn't figured it out a year ago before it was too far gone and into his automated nervous system - also will be if he's negligent and does not stay on life protocol... and something happens to me.... Serious psych stuff is not something anyone can really handle for long...

Like you said, focus on you. Life, fun and friends etc. will come and go (believe me I get it), but your health is critical!
Posted 5/28/2015 7:17 PM (GMT 0)
LMCM
You are sweet!

So so so much suffering here… and it doesn't matter if we're surrounded by others or all alone, everyone has their own version of hell.

I am grateful that I am not also caring for someone else. I cannot imagine what it's like to be a parent of a sick child, particularly when that child is becoming an adult and no longer under your control. I've followed bits and pieces of your story (unfortunately, I cannot hold onto the details very long but I do remember your overall challenges). I think you and other parents are heroic. And here you are, expending even more energy helping sayyadina and me and others… endless generosity.

I hope your son finds his groove and I hope you maintain your strength while he is finding it. You've had such a long road already….

Sayyadina…
As a point of distraction, ;) I was curious what your name stands for or the origin of it? I've always thought it would be a beautiful name for a girl but not sure if it's your name or a nickname…

p
Posted 5/28/2015 11:49 PM (GMT 0)
Oh wow. I love sci fi but if I did see the mini series I don't remember it. Now that is one benefit of losing your memory, you get to experience really cool things more than once, I suppose. ;)

Anyway, I am going to look it up, thanks for the suggestion.

Someone else started a thread about the "good" side of lyme. I'm feeling pissy today so I don't have much that is positive to say… so I'll visit it tomorrow. Ha!

p
Posted 5/29/2015 4:11 PM (GMT 0)
Oh yes, I've seen Stargate and Sanctuary but not the other two.

I'm unable to read. Last book I tried reading was John Cleese's biography, which was awesome but just couldn't finish it. Most of the time tv is OK. Easier to watch vids on my computer for some reason. SiFy or however they spell it now usually puts their episodes on Hulu.

Concentrate on what you'll do when Sept comes and she is a memory… Maybe she can wear a bell until then… ;)

p
Posted 5/29/2015 5:45 PM (GMT 0)
Orphan Black is outstanding. I got really lost in season 2 so I stopped watching for awhile, cognitive problems prevented me from enjoying it. I'll get back into it after my major detoxing session this month…

But thanks for all the other suggestions. We're so lucky to have access to good entertainment. AND YES the subtitles!! I though I was the only one...

I was at high doses of my treatment but was not detoxing very well. I got completely overloaded the past couple of months. Started having heart trouble, cognitive dysfunction and other signs of oxidative stress. So I've backed off treatment quite a bit and focusing on detoxing… Hope this works.

p
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