posted
I've been reading lots of posts about a lack of support from friends and family. I've been really lucky to have lots of support from both.
Sometimes a little too much from mom.
A few of them don't really get it. I sent an email to one of my best friends in the world a few weeks ago saying: Can you believe it? the stupid lyme came back!
He sent one back saying "that english girl or your ex?"
******.
My friends, for the most part, alredy know what it is all about because we had a friend wind up in a psych ward before he got diagnosed.
When I was a little kid, a girl in school left and never came back because of lyme disease. Little scientist that I was, I went to the library and read their poster (this was the 80's)
I thought: She gets to stay home from school cause she's tired? I have to go to school when I'm tired. Thats not fair!
When my grampa was dying, I visited him a lot. I never asked him how he felt. We talked about sports, stuff we did when I was little, stuff he did when he was little, who we thought was a jerk, how everything on tv was crap, how these kids today have bad haircuts...
The fact that I didn't ask was certainly not that I didn't care. I just wanted to distract him from feeling bad. Try to make him laugh. Anything. I think for him, just having his family around made him feel good.
Maybe I wasn't emotionally equipped for an answer.
I started this post planning on asking a question, but I forgot what it was. I guess I'll try to make a point.
None of us have psychic powers. You can't really know what family members are thinking.
It is a natural, human response to shut down when overwhelmed.
Unfortunately so is denial
I think it is a better approach to tell them things gently, when they ask, than to overwhelm them with information they are not ready for.
I just sent that preview for under our skin to everyone on my email list
I got abunch of responses along these lines: I didn't know it was so bad. How is your health?
Don't get angry when you're family doesn't respond the way you want them to. They probably don't know how. It's always upsetting to see somebody suffering.
[ 22. February 2008, 10:31 AM: Message edited by: je ]
Posts: 102 | From ny | Registered: Feb 2008
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posted
I would also like to add a personal confession. I have TOTALLY use dlyme as a weopon ( very bad for my karma)
All daughters in my family. My mom has been hinting that she would love to have some grandkids
By hinting I'm really looking for a word that fits between begging and demanding
I don't want kids. I'm not ready for them. I'm not very responsible. Just responsible enough to know I'm not responsible enough.
After the hundredth time it came up I said that all children born to people who had ever had ever had lyme disease either died within a few days, Had massive heart defects, or were autistic.
It gets worse...
Then I told her it was a very painful and sensitive subject and I wish she wouldn't bring it up any more
Worse still get ready...
THEN I said, don't you think that sister A and her husband would have the most beautiful babies. Wouldn't they have the most beautiful blue eyes?
Here is the worst of all get ready for it...
then I told her that even if I could never be a mom, I think I would make a fantastic aunt.
Could I be any more evil? I guess the fact that I know its evil and I am still not gonna tell her is a little more evil.
just wrong.
Posts: 102 | From ny | Registered: Feb 2008
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
je - auggh!! Please, please, please don't use the word "retard" like that! Remember, some of us here happen to love mentally disabled people!!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
Sorry. I already told you I was evil. I was going to use the word dumbass but i figured it would show up as *******.
I certainly did not mean any offense. I've got a bit of brain damage myself, and I don't take offense to the word cause I really don't think about it like that.
Apologies. From this point on any one who reads the "r" word should instead think dumbass.
But the question was "how do you deal with your family?
Maybe some people who are here because their kids are sick can explain to people here who are sick what it feels like
and where the miscommiunication is
Posts: 102 | From ny | Registered: Feb 2008
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bettyg
Unregistered
posted
je,
here's how to edit your post to remove the offensive term you used ....
click pen/pencil icon in THAT SPECIFIC POST, it opens up both subject line AND BODY TEXT.
now go down and find that word removing it as this 1 member isn't the only one with a physcially challenged family member they love.
I can certainly relate to the challanges of dealing with the family when it comes to Lyme.
My husband's method is to tell his family as little as possible. (the suffer in silence technique.)
I'm not too keen on that. As to my family, it's been a process of information, education, occasional dawning of comprehension and empathy.
For example:
Early in my son's illness, he, my mother and I were taking a drive in my car, and he threw a royal raging tantrum.
I had to pull over several times to get him to calm down.
Afterwords, my mom told me that he was the worst behaved child that she had ever seen.
I tried to explain that it was the Lyme. On subsequent occasions, whenever he was tempermental and I stated that the Lyme was making him moody,
my mom would say "I know that you believe what you say is true..."
Like she had sudenly gotten her Phd in psych or something.
(If I ever go back to work I promise I will NEVER use that line!!!)
Anyway, I finally bought a book on Lyme and gave it to her to read. Suddenly all the stuff I was saying was validated, and she became much more sympathetic.
The reality is, that most people really don't know anything about this illness, until it bites them in the a$$.
I'm just as guilty. Just a few years ago, when I was a working woman, my outreach program had a new (for lack of a better word) client, who had Lyme.
She was not in treatment, she had lost costody of her child after assaulting the childs father, probably due to a lyme rage. She didn't want to go through treatment anymore.
You can't help some one that doesn't want to be helped, but I still think that we could have been more effective if we had had a better understanding of Lyme.
But mental health professionals in my state aren't trained in regards to Lyme, I've never met one that had a clue about this illness.
I guess the upside about this experience is that whenever I return to the workforce, there will be ONE lyme literate social worker in the mental health field.
You had indicated a desire to know what the experience is of family members of people with Lyme. Well, I am one.
First, we had to learn about what the symptoms were, then match them with what we were observing in our child.
we had to weigh our parental skepticism when the 'too tired to walk' came right after the 'time to brush your teeth', which immediately cleared up into bed-jumping enthusiasm, once the toothbrushing was done.
I have to walk the fine line between being empathetic and taking a stance when his symptoms cross the line of acceptable behavior.
i am always torn when I feel that he can't control himself, but what he is doing at that moment is way not ok.
No matter how you slice it, having a young child with lyme is tough.
i hope all of that addresses what you were writing about.
posted
sorry I just have to give kudos to Dr.R.B in Redbank NJ......
after lymemommy made this comment....(and I assume she is talking about NJ)......
But mental health professionals in my state aren't trained in regards to Lyme, I've never met one that had a clue about this illness....
He is a great Lyme doctor.....he is a constant contributer to my wellbeing......
It is true though......there dosen't seem to be much out there for kids.....or if anything....
but for adults........I highly recommend him.... maybe he can refer someone that deals with children.....
sorry your going through this with a little one..... great that you gave your mom a book about Lyme....and she READ it......
just my 2 cents...... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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You are correct, there is a doc in Red Bank, but he is the only one I know of that is lyme literate.
I worked with people who's primary diagnosis was a major mental illness, coming out of state or local hospitals.
Most of them could not afford a private doc.
From the research articles that I've read about lyme and mental illness, it is probable that many many more had/have Lyme than the one peson that I worked with.
But she was the only person that I encountered that had been diagnosed with lyme, in over 10 years of working in the field, and well over 1000 persons worked with.
This in lyme endemic jersey.
Definately food for thought for when I go back to work.
As to the doc for the little one, we had to go out of state.
You are hilarious, truly. I think in our family that we've used humor to help us cope. I think you're doing that also.
We may be getting our heads kicked in by Lyme, but we're not going to quit laughing.
As far as family, I think you're on the money there also. We have been fortunate to have a lot of great support from friends, family and our community at large.
We're trying our best to let go of bitterness and expectations. These two things can kill relationships.
Yes, I walk around with a heavy heart. I didn't know when my precious, funny little first born son arrived that this would be his fate. I ache when I pass his grade school and see his friends playing football without him.
But when I'm with a group I try to be appropriate. I ask them questions regarding their health and interests. I would not like it if others thought I was stuck on one agenda. And more importantly, I don't think this would help the cause.
I have an inner circle (Mom, dad, sisters and husband) on which I rely heavily. When other people ask, or if the timing is right, I discuss our son's situation. It's been surprising how responsive people have been under these circumstances.
As a mom you're always weighing future implications of your actions. I'm trying to figure out how to give my son a good quality of life under the circumstances.
I want to be aware of his changing condition and respond when needed, but I don't want either he or the rest of the family to think that Lyme disease is our definition. I don't think that is the healthiest path for him or the rest of us.
If this is helpful, then I'm glad. If it's too long and your'e asleep, then I'm sorry. Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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