I'm new to the board and new to the whole complicated world of Lyme. I was just diagnosed last month and I'm still going through the adjusting process.
I've found a lot of good resources on managing late-stage Lyme but I was wondering how people face the challenge of having to educate every single person who finds out I have Lyme disease.
I try not to make a big deal about my health and personal issues in general but I've had to adjust my diet entirely to control the Lyme, especially since I've started on abx. This naturally raises a lot of questions.
My herxing hasn't been that bad (and I'm so grateful for that) but it's exhausting to explain why I'm being vigilant about my diet and caring for myself - on top of already being exhausted 90% of the time!
Are there any good, simple resources I can refer friends and family to, outside of telling them to google late-stage Lyme? Input would be greatly appreciated!
[ 15. April 2008, 08:05 PM: Message edited by: cookiegirl ]
Posted by bettyg (Member # 6147) on :
welcome cookie! glad you found us.
i've got some really good info in the below on telling family/friends ... helping them to understand a LITTLE of what we go thru, and also look at top of medical where i started a post of LYME VIDEOS COMPILED; sit down and watch them together, and then discuss your lyme!
in below is: LYMEDAD'S LETTER TO FAMILY/FRIENDS; DAR'S TOY STORY, etc. ********************************
WELCOME, would you like a FREE copy of my newbie package of 118 pages info galore sent by a PRIVATE MESSAGE here; includes TREEPATROL'S LINK of his archive of over 1000 links of good lyme info?
I've been completely REORGANIZING it; NOT DONE YET; but up to page 60 since I have now created a TABLE OF CONTENTS WITHOUT PAGE NUMBERS since it changes DAILY! The part NOT organized yet is the last 30 pages of SSDI, ss disability insurance benefits tips/forms!
also, please go to TREEPATROL'S NEWBIE INFO IN MEDICAL; at top being features; mark it as a favorite! over 1000 links of good lyme info. He/I have some duplicates.
most of mine is very DETAILED info on certain things: SSDI/ss diability insurance benefits; FINANCIAL BURDENS; about IGENEX blood testing, symptoms lists for the basic types, NOIR/no infrared SUNGLASSES, etc. and how to use this board!
If you would like my newbie package, please send me a PRIVATE MESSAGE. PMs are the 2 people standing together icon to right of your name. Just ask me to send you lyme package, and I'll get it to you promptly. Thank you!
Posted by AZURE WISH (Member # 804) on :
I really have to what my diet too. Usually I give a short answer that in the end it is better for my immune system for me to be vigilant about what i eat.
And that since i have an infection (actually 2) that i need my immune sytem to be as cooperative as possible.
If they seem interested AND i have then energy I mention that yeast can develope due to the abx and that lyme in itself can weaken the immune system so knowingly creating a yeast issue ( which can grow throughout my body) would not be wise.
Welcome to the board Posted by Lymetoo (Member # 743) on :
Welcome! Yeah, I don't think you have to spend a lot of time educating them.... at least not to the extent that it wears you out!!
Just tell them you have to give your body every chance to heal itself.
Posted by cookiegirl (Member # 15226) on :
Thanks for the support, everyone!
I'm glad to have found a place where I can understand, be understood, and not have to explain myself.
Posted by Geneal (Member # 10375) on :
I just kept it simple and only provided an answer when faced
With a smart comment. I was 99lbs at one time.
Ordered a salad. Waitress said "you can't be dieting."
I said that I have to watch what I eat as I have Lyme and the antibiotics cause yeast issues.
That's it. I don't explain further unless someone is truly interested.
I'd like to say "Give me the double cheeseburger with french fries and a chocolate shake."
Hugs,
Geneal
Posted by laura j (Member # 14257) on :
I've found that the more information I give people, the more they distance themselves from me. I'm sure others on here could attest to that.
Whatever you do tell people, try to keep it simple. Since I've done so much reading about this I've found that when trying to explain things to people I use terminology that they don't understand and they get overwhelmed and back off.
I agree that it's best to give info only if they ask.
Posted by cookiegirl (Member # 15226) on :
It kinda gets on my nerves when people become too interested in the whole situation. It seems like everyone feels the need to put their two cents in.
People don't get that I'm dealing with things the best way I can. I'm in my 20s and single with a lot of responsibility - I wish "concerned" acquaintances would quit questioning my health decisions.
Sometimes I think people honestly believe that I would choose to deprive myself of my favorite foods and limit participation in my favorite activities - just for fun? for attention? No way!
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