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» LymeNet Flash » Questions and Discussion » General Support » understanding the life with Lyme

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Author Topic: understanding the life with Lyme
mtree
LymeNet Contributor
Member # 14305

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....nobody knows how i feel.....here at home....

so here i am.....posting....

I hate having to explain how awful i feel to everyone.

..and know they have no idea what I am going through ...

..its hard to articulate the agony and pain and dispear...everyday....with no break.

no matter what I say...I'm always holding back some things....

but today was more difficult for me.....

I had a painful dentist appointment on top of all my other pains....anxiety....

it was horrible.....

it's been a year today that my father died........he was a great support to me with this illness....

so I just wanted to vent a little.....
this website has helped me a lot.....

and I just needed to talk to someone who really, really, really knows how much I hurt inside and out....

I know there will be better days.....
looking forward to them.

thanks for listening.....
[Smile] mtree

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worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
Cockapoo1996
LymeNet Contributor
Member # 14238

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We do know how you feel!!! Thanks to this site we know we are not alone. I think I have the flu now - I think because with lyme you are never sure if it is a herx or what. I hate going to the dentist too. It just adds to our already painful life. But take care of what you could -teeth. [group hug]
Posts: 472 | From New Jersey | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
LindaInRhodeIsland
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Member # 14727

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Oh do I know what you mean!!!! Just the other day my husband noticed I was limping badly and asked about my feet and legs hurting. I have stopped even telling my husband how much pain I am in because as much as he cares, he just gets sick of hearing about it.
We are planning a trip to Disney at the end of April and I am worried that I won't be feeling significantly better by then. My husband said he will "kill me" if I have to rent a scooter after we spent all this money for a vacation. Like it isn't easy to wallow in self pity and pain some days!?!?!? I am supposed to completely bow out of life while I wait to get better?!?!? No one can know what it is like unless they have gone through it.
Hang in there. This disease sucks and it makes our lives suck in many ways. We all deserve to feel sorry for ourselves some days and this sure seems like the right place to do it!!!

Posts: 23 | From East Coast | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
je
LymeNet Contributor
Member # 14653

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[group hug]
Posts: 102 | From ny | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
Draba
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Hey. We're here, and we all understand.

[group hug]

-Draba

--------------------
Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy.

Posts: 66 | From My room | Registered: Feb 2008  |  IP: Logged | Report this post to a Moderator
Geneal
Frequent Contributor (5K+ posts)
Member # 10375

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Unless you have Lyme or have researched it well.....

Expecting someone who doesn't have it to understand is

Like expecting the unexpected.

Your Dad is with you. I am so sorry to hear about his loss.

Other than my Mom, no one in my family asks how we (my children, husband and myself)

Are doing. That's okay too. I am tired of trying to explain things.

You will always find support here and a hug.

Hang in there.

[group hug]

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
mtree
LymeNet Contributor
Member # 14305

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thank you all for responding..... [Big Grin]


its exactly why I posted......i just needed someone to say.....

yes i know how you feel....and really know!


Linda......we can't wait to feel better to live....
do what ever you can to get you to and through Disney.....

sometimes I just have to take some pain meds to get through something........

we have to create memories even if we are not well.....

you'll remember how sick you felt........but your kids won't....they just see mom at Disney.....
(that was my experience)


somedays I think to myself ......
well this may be the best I ever feel......so i better make the most of it........

days not on the couch are good......

but then the family thinks I'm better.....and I'm not ...its the fatigue thats better...

..but basicaly I'm a walking hospital pateint.....

it is crazy what we have to live with and go through with this disease....

cockapoo......sorry about the flu........
it is going around........

my husband a two kids work in hospitals......lots of stuff going around.....

Geneal...thanks for what you said about my dad.....I do have great faith and know he is with me........it just sucks!....death sucks.

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worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
mtree
LymeNet Contributor
Member # 14305

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...oops......I hit the add reply by mistake....

anyway....just wanted to say thanks......

hope you all have a good day.....
[Smile] mtree

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worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
ICEiam
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mtree, I am one of the non-lymies that hangs out here for support too!! Isn't it great to have such wonderful people to vent to that really do understand? I have been watching my only child get sicker and sicker since she was 11, she is now 27.

She now has gotten to where she speaks like someone that is deaf and a person that can't find their words added to that. Poor baby, she gets so frustrated. It rips my heart out to see her this way. Last night she told me she missed herself. I try to be strong for her, so I had to make an excuse and get out of her room FAST!!!

It breaks my heart every single day to see my past vibrant daughter laying in a bed 23 hours a day not being able to speak.

So, yes, mtree I do understand, so very much and I feel for each and every person that comes to this site for hope and just a little compassion. It makes me so frustrated that people just don't get it.

I love my family here, since I have no family support elsewhere. When my daughter is having an extra bad day (all are bad) I can come here and talk or go to Lyme Chat in the evenings and have someone to talk to.

It is great that we have been doing that every evening. I look forward to it. The people I have met there are so very special to me. I appreciate each and every one of them and their never ending support and suggestions on what to do.

Hang in there, there has to be something somewhere that someone someday will figure out!!!

HUGS,

--------------------
ICEY

Posts: 468 | From Las Vegas NV | Registered: Jun 2005  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

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mtree,

I'm brought to tears reading this. It's so hard to not have anyone that understands. You were lucky to have someone that supported you and to lose that person must make it that much harder.

My husband asked me the other day to compare my symptoms to something he'd understand. I started to try and realized that everything I came up with was at least a little different in some way so instead of saying "it's like the flu" or it's like this or that I said "it's like Lyme".

There's nothing to compare it to. I can't compare it to anything I ever experienced Pre-Lyme so I know no one understand unless they're going through it.

I tell my husband so much of my symptoms and he thinks I tell him all of it until I'll mention something that's been going on for months and he says "You've never told me that". He finds it hard to believe that with all the things I do tell him that I'm actually holding back and that there's so much more.

I also talked to a family member today that I tried to explain things to a little. She said "It must feel good to finally have a diagnosis b/c everyone thought you were crazy!".

It's bad enough to have doctors doubt you, but when those closest to you do, where do you turn? Here I guess! [Big Grin]

Before I got diagnosed my husband said "How may doctors need to tell you nothing is wrong with you before you finally believe it?" Even my own mother told me to snap out of it and that it's all in my head. I asked her to leave when she said that.

Thank God for this website!!!!

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
mtree
LymeNet Contributor
Member # 14305

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thank you....
ICE and laura......

ICE......I am so very sorry for what you are going through........

I know it must have been very hard to hear your daughter say...I miss myself......

I know exactly how she feels......

I don't think its a bad thing to break down with your daughter......

I know that you are trying to be strong for her.....but maybe she needs to SEE your sadness....

she is a very strong person.....very.....
and I am praying that she continues to get better..

...she does not deserve a life like this.....I am so sorry......
she is so lucky to have you...your a great mother!
..................................................

laura.....
everything you said was perfect......big ditto for me....
you can't compare it to anything...it feels like Lyme...you are so right....


maybe I'll try the chats at night...
I know this website has been great....

thank you all for sharing.....it helps!!!!!!!!]
[Smile] mtree

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worrying about tomorrow takes its strength away from today

Posts: 968 | From Point PLeasant , NJ | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
MysteryGirl44
LymeNet Contributor
Member # 10201

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I'm sorry you're feeling sad and bad. You are not alone and we all understand. I hope you feel better soon! [group hug]

--------------------
"Life doesn't have to be perfect to be wonderful."

www.myspace.com/lymediseaseawareness

Posts: 514 | From New Jersey | Registered: Sep 2006  |  IP: Logged | Report this post to a Moderator
   

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