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FallingApart

Pep talk, kick in the pants or both

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Hi guys,

 

I know that I should be compassionate to my DD. But she is in a flare right now and I am completely unable to handle it. That's not totally true, I will obviously carry on. But I am rational enough to know that she is sick and that her behaviors aren't her fault. Yet, after all these years I think I have a sort of PTSD from all the ###### we have lived through. Any uptick in her behavior puts me in a mode of high alert and anger. I don't know how to break this spell. I want her to be able to remember my interactions with her as loving and as my being her supporter - not constantly mad at her.

 

I pray for help in being the best parent I can be. I do yoga and work towards letting go of the things I can't control. Yet I am still completely stuck on this area. Can anyone offer words that could help.

 

Thanks so much

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Wow-couldn't have said it any better. just wanted to say that you are not alone in feeling this way. I just told a friend of mine last week that I was beginning to think I had PTSD from all of this as well. DD has also been flaring recently and I am having hard time dealing. I think it actually gets harder with each flare not easier.

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Actually, I want to thank you for sharing this. I teared up because I feel the same way right now. My daughter is extremely defiant/oppositional - think she is dealing with strep again. I actually dread my time with her (which is just about all day). Sorry to say that. She started with bipolar-ish symptoms earlier this month, and now after her last ivig, she is just very, very angry.

 

edit- sorry, not exactly a pep talk :(

Edited by philamom

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Yes, the flares do get harder because each time, you already have so much baggage - and it just piles up higher and higher. It's to the point where my DH and I "hear" a flare before we see it. Our voices take on a certain tone, we snap at things or behaviors that normally wouldn't bug us. Then we start watching for behaviors and sure enough, we'll realize "it's back."

 

The only words of encouragement I can give is that once you're able to catch a break and get a few months of remission under your belt, patience returns. And weirdly, the kids don't seem to remember all the yelling. They seem to block a lot of it out - or maybe it never got recorded as a memory to begin with.

 

One idea is to journal your feelings. Write to her to explain what's going on in your head. You can always delete it. But writing it might help you sift through your emotions in a safe way. All of them - including the negative ones - are legitimate and totally understandable.

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She may just remember how your the one who has always tried to help her too. You must be terrific to deal with a child like this. It is sooooooo difficult. I need some thing for stress but I can't take it, because if I look the least bit relaxed, she freaks and says I am not paying attention to her, or I am day dreaming. Freaks her out, and scares the ###### out of me. Fortunately, I have my mothers patience (not always) or she would be minced meat!!! Someone one day told me "when things seem really unbearable, just remember how it must be for them." Thinkign of you!!!

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One idea is to journal your feelings. Write to her to explain what's going on in your head. You can always delete it. But writing it might help you sift through your emotions in a safe way. All of them - including the negative ones - are legitimate and totally understandable.

 

I actually started a journal for dd about a year after intial PANDAS dx. I have found it to be very helpful for me. I definitely write in it more when times are tough. I think it is important because I am able to state how much we hate this disease and not her. Someday she will be able to sit down and read it and see that no matter how bad it has gotten-we have always loved her.

 

I was trying to explain to some friends last week how exhausted I was and that dd really needed to be in school so I could have a break. It is actually a new bible study group and they haven't been around or heard about our ordeal for the last four years. They all looked at me like I was the most unsympathic and selfish person. Like how could a mother be so uncaring with a sick child. I

Edited by ShaesMom

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I can totally relate. We are all doing the best we can. I also feel that I have PTSD. After 10 years of dealing with illness, how can you not?

 

My son who is in his 20's now, wrote a song and sang it to me with his guitar after he was feeling better, on Christmas morning. He thanked me for standing by him and putting up with all of it. It was very emotional and made it all worth it. I would expect your daughter will also develop this insight later with maturity.

 

I tried talking with a counselor after becoming repeatedly frustrated and angry with those around me that did not understand, but it didn't help, actually frustrated me more since she could not grasp the reality of my situation. I have found that getting away from the house is very helpful. It is so hard when your house is a stressful place. Easier said than done, I know.

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i have recently found GABA to be helpful in stressful times. some people need to take it daily and some can take it at times of stress. i found it a pretty quick help. however, for some, like ds, it can have the reverse effect and be negatively activating.

 

i am a huge fan of Dr.Ross Green of The Explosive Child. he has a technique of repeating what the person says as "the empathy step". i have found this helpful as a technique to better working with ds. however, i find the greatest benefit is for me -- to help me not get dragged into the tantrum or problem. it allows me to have that sometimes necessary distance in a way i can't seem to get otherwise. it's kind of that necessary detachment when you have to be involved but just don't feel like it. and it can be a way to allow you to do something rather than yell or when holding your tongue isn't so much working.

 

 

can you try to find the humor or irony in things? a coupld of years ago, ds yelled at me, "I hate you". i just looked at him and said calmly, "really? well pal, i am you best friend!". it then became kind of this funny mantra for me and at times when i would be extremely frustrated, it would just kind of make me laugh.really -- the nerve -- all i'm doing for him and he hates me?! it couldn't be anything other than comical!

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Oh my j totally feel like I have PTSD! For the past three years August just freaks me out with the start of school. This is when all this hit back then so I get really stressed out during this time. When other parents can't wait for their kids to go back I stress. I have twenty things going through my head . I hope and pray they don't get sick and if they do will I have to go through what I did have to go through three years ago. I am stronger now and know a lot more but that fear is there. Something always goes crazy when school starts and I hate it. I wish summer could last for ever!!!

Mar

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Falling Apart,

 

You put into words what many of us think and feel, but are unable to say. I am totally exhausted mentally and physically as I'm sure you are as well. If PTSD is the definition of "waiting for the other shoe to drop" all the time, then that is me. We all have had so many bad experiences on a daily basis that we are somehow programmed to be afraid of what will happen next.

 

We have two in our household with Bartonella and that is two too many. I dream of going to Hawaii, but I know that if we went now, it would just be a trip filled with arguments (theirs) and tears (mine). So, I try to keep up hope for the future.

 

 

Always know that this is a safe place to vent.

 

Cobbie

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Hi guys,

 

I know that I should be compassionate to my DD. But she is in a flare right now and I am completely unable to handle it. That's not totally true, I will obviously carry on. But I am rational enough to know that she is sick and that her behaviors aren't her fault. Yet, after all these years I think I have a sort of PTSD from all the ###### we have lived through. Any uptick in her behavior puts me in a mode of high alert and anger. I don't know how to break this spell. I want her to be able to remember my interactions with her as loving and as my being her supporter - not constantly mad at her.

 

I pray for help in being the best parent I can be. I do yoga and work towards letting go of the things I can't control. Yet I am still completely stuck on this area. Can anyone offer words that could help.

 

Thanks so much

 

Read a few replies and i relate to all of them.

Cant' be in the room with them...even with the boys who are ok.

Being on DEFCON 5 all the time has done me in.

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Thank you so much everyone for your replies. Perhaps this is a good post for the emotional side of things that we parents deal with every day. It looks like we have similar fears and frustrations.

 

I read the explosive child years ago when I thought I would be able to fix the situation. It's probably time for me to go back and re read it now. I also really like the idea of writing a journal to DD so she can see my love for her when she is older if she doesn't feel it now.

 

Fixit, your sentence about not wanting to be in the room with the children even when they are well really hits home with me. Does this resonate with anyone else? I feel that this is something I'm working on but am making no headway on. It's nice to see that I'm not the only one who feels this way.

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FallingApart

Your journal idea sounds great. I think I will start one for ds! If I could explain to him why I put him on his diet and why I yell at times bc 10 warnings aren't enought. If he only new that I live my life around him and only do things to help him. I now he bows somewhat. But during those times when he is being to rough with dd and I yell and I know he is not doing it on purpose are those times that kill me. I hate when I yell about something he can't control at times. There is so much I could say and i always fear that he will hate me for something when I spent all these years trying to help him. Just to say its not his fault for behaving a certain way and I sk understand. I want him to know he was not alone. I was always looking over whatever he suffered from and praying he would get pasted it. Being in the same room with kids seems to get me when they aren't doing well. I feel like I need to break away. When they are doing better I enjoy being around them. All day when they are ag school I miss them. When ds gets home I watch and I know how the book back is thrown and in the first five minutes how the day will go. He has a hard time starting on homework and it's start this do this and I hate doing this but if I don't I fear he won't get anything done. I hope that he will appreciate all my nagging that got him through school rather then say my mom was mean. This journal might help me feel better. Like earlier today he got dd to Agree to go out in front and tackle each other with helmets on I say " no" ! He saids we will wear jackets to stay warm and have helmets. He will crush her in first 5 min. No way!!

Mar

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