posted
People ask me all the time..."so how are you feeling??"
Which is very thoughtful and their intentions are good.
But, the few times I have told the truth. (I cry everyday from the pain and exhaustion, I can't think, I can't play with my son like I want to, I'd really love to just give up and stay in bed all day...etc.)
I really don't go into that much detail...except on here...
I get this glazed over look and I know they are wishing they had never asked.
Or what's worse is the "Oh, you are so dramatic...everyone's tired and has aches and pains" attitude.
So, I just say... "doing fine, thanks for asking". Even to my husband most of the time....he tries to understand but is sick of hearing about it.
I feel like I can't talk to anyone about it.... so thank you for those of you listening out there!
You keep me sane...as much as can be expected.. Posts: 92 | From home | Registered: Jun 2008
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
Haha! Stop it Metallic, I can't take any more!!
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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tailz
Unregistered
posted
I say very little because I notice people start to study me, and for some reason, the conversation never carries the same rhythm that any other topic would.
I talk, they look. Nothing is said unless I say it.
It's gotten to the point where I really don't think people care how you are feeling today when they ask - unless you are feeling great maybe. They definitely don't want to hear about when you are feeling sh*tty, that's for sure.
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posted
To the superficial people (you know who they are), I give the usual...Im fine, how are you doing?
To the true friends or people who already know my condition, I usually speak the truth...todays symptom... eye flares.. or headache... or joint pain... or GERD... or chest pains... or brain fog (what was the question again?)..
To me its all relative...if you're not a relative, you probably really dont want to know the truth..!
Posts: 514 | From . | Registered: Apr 2008
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posted
I had a hard time with this, too. I didn't want to lie and say I was fine because I knew I wasn't, but my roommate (I'm a college student) got frustrated with my complaints, and then my boyfriend broke up with me. Now he says it wasn't because of the Lyme, but I think that had a huge part of it because I wasn't fun anymore. I was in pain, tired all the time, napping a lot, and simply not the same person. When people ask me how I'm doing now, I pretty much say, "eh, alright," because that doesn't go into details, but I'm also not saying I'm doing well.
Posts: 55 | From Connecticut | Registered: Oct 2007
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I had started this exact post awhile back that was very helpful to me....
I bumped it up in General Support if you are interested....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Here is a typical script of what I say.
Friend: Hey Mike, how's it going man, haven't talked to you in awhile? How are you doing? Me: Hanging in there. Friend: Yeah? You feeling better? Me: 6 years, 72 months of antibiotics, and my latest test reveals the infection has barley budged. We're talking about a serious infection that persists in-spite of treatment. Friend: Wow Me: How about you, how are things? Friend: Eh, I'm ok. Me: Who would have thought life would go this way? At least I have a nice place to live, I'm loved, and I have access to some form of reasonable care. It's not optimal, but it's far better than some other people. Friend: Yeah
Now for a Stranger:
Stranger: How are you today? Me: Not very well, but I'm alive, that's enough for now. Stranger: Oh..... Me: Well you know, life is difficult for some people, I'm unfortunately one of them (Or fortunately, depending on whether you believe that things happen for a reason, and that there are lessons and meaning to be found in adversity) Stranger: Wow, yeah that's true. Me: So what about you, what challenges are you facing? How are you doing? Stranger: Well, I'm .................(This is the part where the stranger tells me some obstacles and difficulties they're having, hoping that I'll have some magical solution, which I usually don't, but I at least can share some experience, strength and hope."
By the time the conversation discontinues, people thank me for talking to them.
Then, there are my real bad days, with the irritability, mood changes, and that sour horrible look on my face.
Person: How are you today? Me: ****in' miserable. Person: "Ugh.........." Me: Don't ask the question if you don't want an honest answer. Person: Well... I mean I'm sorry to hear that. Me: Me too. Life sucks. I wish I was home in bed. Person: "Confused.....trying to find the right words." Me: Don't bother man, I'll get through it, I always do. Sometimes you're the windshield, and sometimes you're the bug. I'm the bug today....but it'll pass. Person: *Trying to smile* Me: I've gotta go, this throbbing headache is killing me.
So, as you can see, the conversations aren't always train wrecks, but they aren't always eloquent either.
The worst conversations are with family who don't believe you. Friends you can totally abandon, same with neighbors, or any other douche bag that gives you a hard time.
Brother: Hi Michael, how are you. Me: Sick, as usual, but I'm good other than that. Brother: When are you going to stop being so negative? Me: When you stop expecting me to be so positive. Brother: You never feel good and you're always whining. Me: So don't ****in' ask me how I'm doing if you know that I'm "always" going to tell you the same thing. It makes you look like the ******* who in knowing the outcome and still proceeds in asking a stupid *** question. Brother: You're lucky I don't kick the **** out of you." Me: Oh, big bad telephone tough guy. See, this is why we don't get along, because you're a p*****, and you think a telephone call is somehow going to keep the bond between us sacred. You can't call me once a year, and think that this will somehow make up for the fact that you abandoned me when I needed help the most. Brother: Oh poor me, poor me. You're so melodramatic. Maybe if you'd just gone to a psychiatrist like I told you, you'd be feeling better by now. Me: You know, I could be feeling better right now, right this moment -- and I just figured out how! Brother: Huh? What? How? Me: *Click*............................
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i just "fine. it's really hot today isn't it?" and change the subject fast.
nobody wants to know how we really feel nor do they care....
it just upsets me to hear their narrow minded one sided point of view that "you'll get better"...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Oh God one of these threads again...
I usually lie.
My freinds got sick of me complaining and thought that it was all in my head.
My parents are used to my complaining and I think that my Mother feels a connection when I complain and Im not feeling well because she herself has been sick with epstein barr and CFIDS and post polio and herniated disks for years!!!!!!!!!
How messed up is that.
Ive been out here in COlorado for a while now and my brother who likes to drink (booze) thinks that its all in my head or mind.
I usually say "Ok, if its all in my mind then its burried very deep in my subconsious and I cant get to it,,, care to help?"
I hate people that think its all in your head.
If I were trully depressed then I would be drinking every night at the bar.
Nope, cant even have a chocoloate bar like I used to in my early 20s.
Some things suck, some things really suck, and other things trully suck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
This *(#$(*& sucks.
Posts: 2905 | From New England | Registered: Sep 2004
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
"Great today," or "Not too bad," or "I've been worse," or "pretty rotten" (all said with a great big smile, while looking them straight in the eyes) "and how are you doing today?"
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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It's nice to know other people are facing the same situations and that there are some people out there that "get it".
Metallic, I need to pay you for therapy!! I had a good laugh which I really needed.
I actually did say I was contagious once with a deadly disease when a very strange man sat next to me on a train and proceeded to tell me he wanted to marry me!
He got off at the next stop as fast as he could!
Maybe I will use that again... Posts: 92 | From home | Registered: Jun 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
I told so many people that I was "fine" for so long that when they finally said, "well, why aren't you over that yet?" I saw the lie had been a diservice to myself and to them.
No way do I ever really say how it is as most people simply don't care to that extent and the ones who do simply can't take the weight of it.
Since I've started to be a bit more honest, though, I sure have fewer people asking. The classic is "hope you're doing okay" and then they dart on to the reason for their call. I have siblings I've not seen in 14 years who don't really have a clue.
My father died 2 years ago and never really got it - I had sent a book about lyme, but I found later it had never been opened. Oh. He had looked in a medical book that stated this was no big deal. That is where he stopped. And I was not going to try to convince him (especially as it was a touchy subject with is wife).
So, it's a tough call.
It's not good to lie, but, in the scheme of world events, I'm doing okay and the lift in my voice has a range of places to settle for subtle effects should others care to go futher. If not, "hey, well, what's up with YOU?"
Taking the focus off of my problems, I may say that "this is really a complex subject" or some other clues that might lessen their anguish should they ever need this information.
Fortunately, there are so many ways to reply and most people don't really hear what we say anyway - so you can move on to some news. Hint: keep up on news so you can easily shift conversation.
Or - for relatives, it's great to replay good days. I've learned alot and realize now that sometimes older relatives KNEW they'd told all those stories before but THEY needed to hear them again. It keeps them feeling young and also hopeful of more experiences. Ditto.
Also to remember is that if we can shift the subject to something else, people can still see the real me and I can learn more about them. That sure takes energy, though. Trying to explain that I'm too tired to talk is a tricky move.
And I still get hit out of left field when someone asks - always 'out of concern' - about my weight or how much I'm getting out or why I'm not working. Ouch. Still, my protection of THEM, my own wanting to avoid really saying how bad this is - well, it often comes back to hurt me. So be mindful of that.
Good luck in reaching a balance of truth and safety. Good luck in maintaining the relationships that matter - the ones that can transend this. You will know who is real.
posted
I use to give the same response when asked. Also when questioned about my children I would sometimes answer the same way.
Answering "fine" just did not work. If I was fine why wasn't I volunteering at the schools more or working. Why were the kids missing so much school if they are "fine".
I haven't found an answer that works. I don't think most people really want that answer anyway. It seems to be a standard form of greeting for some people. Maybe what they should be saying is "it is good to see you" instead.
So as of right now, I stand my ground, look them in the eye and ask them a question. I don't answer this. If someone truly was concerned they would not wait to run into you at a grocery store or PTA meeting to ask "how are you".
I have seen posts like this before. There is no magic answer for these people. I don't believe they are mean, or intentionally being cruel. Just uneducated. I think the best therapy for us is to write about it here. Having someone to "talk" to helps us heal.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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posted
Anymore, I just smile and say "I'm here." If the question is more specific, I tell people "I have my days." I leave it at that.
I really feel uncomfortable even talking about being sick. I know some of my "friends" can't believe that I could still be sick. They, regardless of what I have explained, see Lyme as an easily treated/cured illness like a sinus infection.
Sometimes I feel like if I tell someone I have been feeling great lately, I will inevitably get sick. It's like I jinx myself, or the keets want to prove me wrong.
-------------------- Mountaingirl
"What lies behind us and what lies before us are tiny matters compared to what lies within us." ~ Ralph Waldo Emerson Posts: 138 | From West Virginia | Registered: Sep 2007
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