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» LymeNet Flash » Questions and Discussion » General Support » helpful ideas for family of Lymie????

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Author Topic: helpful ideas for family of Lymie????
LisaS
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Help, my 15 year old daughter is the sweetest most supportive and understanding child in the world! She never has questioned my illness, and always does extra around the house to help me.

Lately I noticed she is getting over stressed out. She doesnt ever complain but I know the other day she ran upstairs to cry while I was going through yet another lyme rage.

I wish I could control myself around her. I feel so ashamed and out of control. If I'm in bed for a day she will clean and cook and take the dogs out. She also babysits and slips the money into my purse, secretly, like I wouldnt notice.

I have to do something special for her. Any suggestions. She is my world. If it werent for her...

Im having a hard time even thinking right now, but Id like to do something special for her. Please if anyone has any ideas of how to make things less stressful for any of our family members?? Lymedad, if youre out there, you always have the right thing to say or do.

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Posts: 1078 | From Lake Geneva WI | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
bejoy
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My preteen loves it when I slip little "love" notes and thank yous into her lunch box or other places. This is a good remainder to me to do that as well.

She also likes it when I ask her to come hang out and talk with me and have some personal mom time when I'm having a rest in bed.

I'm sorry things are so stressful for you and your family. Hang in there!

Bejoy

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"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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mississippilyme
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Lisa,

I am sorry you and your family have to go through this.

My family got lucky, I couldn't see, walk or talk so I couldn't throw any lyme rage. I am sure that I would have had I been able.

My daughter was about 15 when I got so sick too. I wasn't able to go or do anything with her for about a year. She was also very supportive. Just to know that I would be alright was good enough for her.

Bejoy is right, try and spend extra quality time with her. She knows how much you love and appreciate her, daughters just do. The notes are good too.

I wish I could think of something nice to suggest, maybe later.

Praying for your family in these troubling times,

Sherry

[Smile]

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3greatkids
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I'm sorry ,no doubt this is hard on kids.
Just keep those hugs coming and talk.Tell her you love her and she is special.

What peace of mind for you too,knowing you have raised a young lady that can do this,rise to the occasion.So many would not even no where to begin.

So,have a PROUD moment Mom,let her help,tell her it is helping you to recover faster.The worry alone will eat ya.

Have movie nights,paints nails or shop on the web?
Does she have a special hobby?Make sure she can have something that she can call all hers.

Crafts,photography,painting,sports?Make sure she can keep up w/ her passion.

Just keeping the open lines of communication open is best.

When you feel the pressure from Lyme rearing its ugly head,put a sign up on the bedroom door...Lyme Brain in action,give me some space.Just hide have your space until it passes.Kids don't understand this change and why put them thru it.Give the warning sign and go hide.

Just explaining how this stuff is and you don't mean to act like a wild woman will make them understand.

Doing homework up on my bed was always fun w/ my preteen.She really found it to be her favorite place to work.Cozy and I could help.That alone was great,showing you are up w/ her school stuff and you care.Hey,it helps the brain fog too.We still do it there,books everywhere,pens paper,laughing,watching idol in between and laughing.


Good luck,she sounds like a sweetie pie.I think a big hug would be in order any day,all day,for her.Man at that age.......they can make you spin like a top!!!!

Don't let the guilt get you.Be proud of her wanting to help.Just talk w/ her and thank her bunches.Thank her from every Lyme Mom out there that goes thru this.Send her a special flower arrangement,just for her,on the tag,says Thanks!

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sixgoofykids
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Lyme is hard on the whole family. I think it's important to talk about it with her. Try to explain the rage. Has your daughter ever suffered from PMS? I know mine had a bit of rage with that. I used that as a comparison.

I also TRY to be reasonable, or at least alone, if I'm raging. If you feel yourself getting upset, maybe go to your room for a while or leave the house. Cleaning helps me ... at least it makes me too tired to be upset!

Take her out for a mother/daughter lunch and manicure. Be sure she knows you love her and that you don't mean to be that way. Ask her what she thinks you can do about it, then when it's happening and you use her suggestions she will know you're trying.

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LisaS
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Thank you everyone. And great ideas too! Today I printed out some pages from lymenet and other sites about lyme rage. Different stories, from different people and put them on her bed with a note to read when she had time.

Well by the time I got home from work she had already read almost all of it. And she was excited to talk to me and explain that she understands.

She told me she was telling some of the kids in her art class what happens to someone with Lyme. How they get mad one minute then happy the next. How they are so sick they cant get out of bed one minute and then cleaning the house the next.

It made me sad but it also made me proud. And then I noticed she was wearing a shirt I made that says "Lyme sux!" on it. This [email protected] disease really takes over peoples lives. It is all consuming even to those who dont have it but are just around it.

You know it could be one of our kids that comes up with the cure one day! God Bless them all for what they are going through for now. And thank everyone for the sugfgestions. I appreciate it!! I'm sure yur kids are lucky to have you all as Moms!

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troutscout
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Call Her Your "Lyme Warrior"...my girls are 12 and soon 14.

Let her know that she carries your spirit and is SO tough you can't believe it. Tell her that everyday you think of her and how much she must personally suffer because of the loss of her once active Mother. Tell her the world would be so horrible for you without her.

Hold her, hug her. Cry with her.

She is YOUR Princess Warrior.

And if you like...PM me your phone number and I'll give the biggest pep talk she's ever heard. What a stud that girl. SHE rules!!!!!!!!!!!

[Smile]

Trout [Wink]

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Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
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Lymetoo
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quote:
Originally posted by troutscout:
Let her know that she carries your spirit and is SO tough you can't believe it. Tell her that everyday you think of her and how much she must personally suffer because of the loss of her once active Mother. Tell her the world would be so horrible for you without her.

You know, my mother had lyme when I was growing up too. We just didn't know it. The worst for me was the loneliness.

My father worked until 10:30 pm, so if mom was sick, the house was way too quiet and lonely.

So make sure you let her know how much you love her and care for her. If I had thought my mom didn't care, I wouldn't have been able to get through that!

Your daughter will be a strong young lady one day!

PS...How about a free manicure at the beauty salon??

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--Lymetutu--
Opinions, not medical advice!

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minoucat
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Acknowledging what you do, and your daughter's response to it, will ease a lot of tensions.

But -- don't overapologize and don't continally tell her that she's everything to you or that you don't know what you'd do without her (even if it's true). People mean well when they say things like this, but it places a tremendous burden on the person on the receiving end.

A couple of days after a lyme episode, the hubby has gotten into a the habit of saying something like:

"You know the other day when I got so P'd off? Well, that was nuts, and I knew at the time it wasn't your fault or anything to do with you. Sorry I yelled.

"And by the way, thanks for doing all the shopping and fixing a great dinner, that really helped. I sure love you"

It makes me feel loved and appreciated, it lets him acknowledge what's up, and neither of us feel weird afterwards.

And in a really subtle way it acknowledges that I don't do what I do because I have to or because I owe him, I do it because we're friends and part of a family and a mutual support system.

Particularly because your daughter is the age she is (but really for anyone), you need to find a way to acknowledge her that makes it clear
- that none of this (the illess OR its aftereffects) is her fault ('cause when you're 15, you tend to think that)
- that she still needs to have her own life
- that she's not a bad person if she thinks this whole thing stinks (if she thinks that, she's a sane person!)

What she's doing is how we are supposed get through life - pulling for each other, doing the necessary, enacting everyday kindnesses, being ordinary heros. I'm sorry she has to learn this in such a hard way, but I'm horrified by how many people never learn it at all.

I love the idea of arranging for a manicure or something else special for her every once in a while.

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RECIDITE, PLEBES! Gero rem imperialem!
(Stand aside plebians! I am on imperial business.)



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kam
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I don't know if this will help.

But, I was in the process of learning different ways to teach anger management before I came down with lyme.

I don't have all the tools we used for the class in my memory banks.

But, when I get to the point I want to blow...

I try to remove myself from the situation.

Get in a quiet place.

Try to figure out what the problem is.

Attack the problem if at all possible and not the person.

You know the time out sign. Perhaps use that or create another sign for your daughter and you when you need to step back before you have to take back your words and actions.

BEfore being dx, I had lyme rage with my teenage daughter and knew at the time something was wrong with me but did not know what.

It is good you are aware and have a dx.

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LisaS
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So far luckily my lyme rage has never been directed at a person. Its more objects. Like when my computer doesnt work, I wont get off it,

I just punch the screen a couple times and yell for like an hour, or god forbid I lose my keys for tenth time in a day even though I dont go

anywhere, I will empty every drawer in the house out on the floor even though I know thats not where they are. It's really embarrassing after it happens, and theres usually a mess to pick

up. One time my car died and my friend drove me to a store nearby to buy an alternator and the guy tried to charge me $200. I walked out

swearing all the way, to the parking lot and started slamming my purse into the ground then threw it across the parking lot. I was so


embarrassed later. Although I did find one the next day at the junkyard for $47. But when I get in these episodes my kids dont know what to

do. My son just leaves or goes to his room. But its my daughter that takes it to heart.

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kam
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I know the feeling. A lady I met was going to come over and visit. I called her to let her know i was not doing well enough to have company.

She started giving me too much information on what she was doing the next week. My brain could not take it.

I wanted to throw the phone across the room. The anger came so quickly.

You'll find a way. I have to talk to myself a lot.

"I tell myself it is not the ladies fault your brain is not working well enough to take in the information."

"It is not the phones fault" You need the phone...don't break it.

My solution is that I need to not be around this person until I am doing better. She is too "normal" for me right now.

I really think it is a brain thing and it not working like it once did.

I taught inmates at a low level prison who were getting ready to go home.

I coudn't understand some of the choices they made due to getting angry quickly...now I understand.

I had not idea before this hit how anger and frustration can come that quickly.

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LisaS
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Hi Kam,
Its funny how true the "walk in their shoes" saying really is huh? I work with chronically ill, handicapped, and elderly and I never understood the depression side of it, until now.
I used to think if I could just get them up and out doing something they'd be 'all better". God I know how wrong I was now.
Ive tried so many different ways to not 'blow' when i feel rage coming on, but now I think the best thing I did was to educate the kids about why this is happening. Not that its an excuse ever. But this way when I start yelling at myself for losing something or punching the computer screen, they know it will pass and its not anyones fault, except the tick! [bonk]

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kam
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Lisa...been thinking about some of your exampes:


...hmmmr god forbid I lose my keys for tenth time in a day even though I dont go

...i know this is a brain thing too...but lately I have been getting better at putting the keys on the hook next to the front door. I think it is treatment that is helping with this.

..Did this before lyme and then couldn't do it after lyme hit..now it is getting back.

..don't know if your brain is ready for a hook in a spot that works for you. I had to try several before i found my spot...strange i know.


Although I did find one the next day at the junkyard for $47.


...This is good.

But when I get in these episodes my kids dont know what to

do. My son just leaves or goes to his room. But its my daughter that takes it to heart.

It will get better. I think you have half the problem solved.

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LisaS
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Kam, I have a hook o the side of the door already but in one of my less brainy moments I hung it up so that when the door opens you cant see it! Ugh. I frustrate myself.

So I will take your advice and go move it to the other side lol. Next, if I could just keep my cell phone in its holder on my purse, Id be set!

Oh by the way did you get your new car yet? How is that going?

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bejoy
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With regards to rage, for some people this happens especially when their adrenals are hit hard by lyme, and their hormone production is low.

For those people, natural progesterone cream supplements can really take the edge off and leave you feeling more calm and centered. I'm nicer to people and I deal with frustration more easily when I'm on balanced hormones.

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bejoy!

"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson

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LisaS
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Thats interesting since my LLMD is focusing right now on fixing my adrenals. I started takiing Drenotropohin but it made me so sick. So I stopped and thought Id try again in a couple days. What other supplements are there to help with this? Thanks.

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chroniccosmic
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LisaS,

I feel for you and your family. This is a tough situation and lyme rage often gets the best of me too.

My daughter is now gone to college but was an eighth grader when I really got sick. I remember being so upset when I couldn't go with her to register for high school. Such a big moment and I couldn't get out of bed.

I learned to send in a surrogate when I could. Her friends mother was willing to take the girls and I tried to be as cheery as possible. I had her take some goofy pictures for us to look at later so we could relive the moment together. Often I would ask a friend or relative to take over in my absense.

My daughter is very sensitive and takes this to heart also but she's learned to be a very self sufficient girl and a great advocate for herself. I'm sure your daughter is learning all kinds of things that we guilt ridden mothers can't even think of right now. The love and honesty goes a long way.

Hang in there.

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