posted
My son and I are going to Michigan this weekend. I will be seeing my family, who know what I've been going through and how hard it's been for me.
I will also be seeing friends, former neighbors and parents of my son's friends. I see some of them on Facebook, but I don't really post what's going on with me there.
I live in pain every day. My eyes hurt all the time. Some days are so bad that I can't function. (I'm hoping I don't have a day like that in MI) It has been 17 months of hell, and the year before that wasn't great either. (though not as bad as it's gotten since)
So, when I see these people who were part of my life, and they ask me "How are you?", what do I say?
Do I tell the truth? Or do I lie and say "Oh everything's fine". I'm afraid if I tell anything close to the truth that I won't be able to keep my composure. Yet, I don't know if I can hide how I am enough to say everything is fine.
How does one handle this when the truth is "my life has been hell"?
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
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I'm good. Thanks. Change the subject. Usually tell more to another lyme person. Sometimes I even lie, refuse to get into all the drama with them.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
I say that I am "hanging in there" unless I am talking to my dear friend with Lyme. I always tell him the straight up truth because I know he gets it. Jess.
Posts: 870 | From ct | Registered: Nov 2012
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MannaMe
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"doin' okay" or "hangin' in there"
Posts: 2251 | From USA | Registered: Aug 2011
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randibear
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i say "well any day above ground is a good day"....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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"Hanging in there" is probably what I'll say, which is true. I'll just leave out that it's by the edge of my fingernails.
Between my Lyme and wanting so much to move back to MI for so long, it's just been really hard both physically and emotionally.
Posts: 181 | From Midwest girl gone home | Registered: Oct 2011
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BoxerMom
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quote:Originally posted by sideways:
"Hanging in there" is probably what I'll say, which is true. I'll just leave out that it's by the edge of my fingernails.
Keebler
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posted
- It's fine to say that you "deal with some complex health issues" and then quickly move on.
It's also okay to say you "feel ill" or "dizzy" or "need to rest" - you could even mention "chronic lyme" if you feel comfortable and won't likely be challenged, grilled or ask to deliver a lecture about it.
Just because we acknowledge it doesn't mean the conversation has to go there and stay there. Be ready with conversation starters to get you onto a topic that will work for you.
Often, though, it's really not necessary to give others the details. Generic "holding down the fort" quips work just fine.
A sly "Oh, just fine and dandy - in all ways - I . . . wish . . . " then, "so, how are YOU?"
You can also say that you "need to rest" (or whatever else) without having to supply the underlying reason or let anyone know it's routine, not just travel fatigue. But, that "oh, travel fatigue" can sure come in handy. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Lymedin2010
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"Up-n-Down" like a friggin yo-yo.
From able to take the pain to can't move or do much at all.
Posts: 2087 | From NY | Registered: Oct 2011
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lpkayak
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if i'm not in bed...i say "im good"
at PT i do go into a bit more detail
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Depends on who they are and how close we are. I sometimes let folks know if I think they can handle a meaningful conversation. Sometimes they surprise me, wanting to tell me something about them that they haven't been talking about - it can go both ways.
Posts: 13116 | From San Francisco | Registered: May 2006
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Keebler
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- We may feel as if we have to explain how we feel but we don't. In this time of extreme oversharing of ourselves even without actually meeting people (in the true definition of that) . . . remember that we do not have to bare all.
A pleasant conversatoin can be had without dropping all your clothes.
I'm glad to talk to folks who can talk about topics other than themselves so that I don't have to. In this wide world, there are so many topics to grab and run with.
So, after the "how are you" and a quick exchange of that - see what is exciting to the other person. Can't quite ask "what lights your fire these days" but there are ways to find out what sparks their interest in the world.
I don't have to skydive to want to talk about it, either. A conversaton might be opened with "looks like a good day for . . . ." or "hey, if I were in . . . I think I'd go for . . . ."
or "If physics and funding were no issue, what would be your adventure of the day?" -
Posts: 48021 | From Tree House | Registered: Jul 2007
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MADDOG
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Still kicking,just not as high!!!
MADDOG
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beaches
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SO KEEBLER,
Are ya telling us you want to skydive???
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Keebler
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- Actually, I want to sail through the sky in those jump suits with wings that look like flying squirrels. Over the alps.
Even if I can't do that, it's a converstation starter for sure. I also love to hear what others would like to do "if only . . . ." or "when . . . ."
I learn much more about a person when adventure dreams are shared. Our "adventure interior" should never be allowed to get lost. If we don't at least let it "talk" now and then it can leave us.
"How" I am is not "Who" I am.
Same for others. Most really don't want to talk about how they feel, really. Most want to take a break from that awareness.
After the courtesy of a "how are you?" in social situations with people who may have never before met or are not well acquainted, moving on to topics that will transport can be very welcome. -
[ 05-23-2013, 02:55 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
That's good, Keebler, over the alps in a flying jump suit!
I often like to switch the topic to something more fun. Like I lie down in the train because I can't handle the jostling motion sitting up.
People ask me how I am/what I'm doing there, and I tell them I'm going to levitate in ... minutes, making sure I give them a time when I'll already be off the train.
It's fun to see their facial expressions as they contemplate my being able to do this!
Another one I used to do was people would ask why I was lying down, and I'd tell them I was writing a book on ceilings. Then they'd look up at the ceiling, and we'd start to discuss it!
Posts: 13116 | From San Francisco | Registered: May 2006
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gigimac
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That is tricky and it has been a tough one for me too. Most of the time when people (except close family) ask me how I am doing, they aren't looking for a story about how I feel so miserable.
So now I always just say I am alright or ok. It feels dishonest to say good. Not to mention I don't want to go into all the detail with everyone.
My husband and mother are the only ones I can really talk to about how I feel.
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desertwind
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Depending on what sort of mood I am in I typically say something like "okay". Other times I will ask if they truly want to know....
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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Keebler
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- Robin,
To be clear, I'd want some speed control on that flying jump suit. Those guys go awfully fast even for the "me of my dreams" but at greatly reduced speed, what a trip that would be!
I love your creativity with explanations. I also have to lie down a lot. I'll have to remember the "going to levitate" or "studying ceilings" quips.
It's nice to have replies that will bring a smile. I feel like I need to learn how to do comedy to offset the seriousness of all this.
Generally, people who ask are genuinely concerned so it's nice of them to ask if everything is okay, even if it's unwanted attention for an unwanted "requirement" to recline.
I used to teach CPR for the Red Cross and remember instructing students how to "shake and shout" for someone who may be unresponsive, lying down in public somewhere. We laughed then about "what if someone were just taking nap?" but I never thought I'd have to give that more thought.
I see this now from a totally different perspective. When I could still go out, I used to take a note and put on my body when I had to stop just where ever and rest: "Just resting" so no one tried to "shake or shout" me! It did happen before I made a pretty sign. -
[ 05-23-2013, 07:06 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Actually, you did do some comedy with that flying jump suit over the Alps comment - I laughed! Just work with Beaches - she'll set up your lines with you!
So, per your nap sign, when I do actually levitate, maybe I should have a sign ready, saying, Just Levitating.
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Keebler
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- Always glad to get some laughs. Hey, how about this for your sign?:
"Shhh! Levitating in progress. If it does not appear so, the couch must have moved."
To top it off, add a cute illustration with a wink and smile as the "image person" covers their lips with a finger for the universal "Shhh!" sign. -
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Keebler
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- You can see my "wingsuit" being tested here:
60 Minutes Presents: Going to Extremes - February 26, 2012
"Birdmen" who soar off cliffs in wingsuits. -
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Catgirl
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Good-hanging in there.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Being relatively young (29) makes it even more difficult in a social situation to say anything other then a vague "I'm alive, "I'm hanging in there", "Or I'm pleased to be here today".
I've actually gotten 'lectured' by people in their 50's or 60's about how grateful I should be that I'm young and my problems are nothing compared to theirs.
So, usually I just say some vague social answer and move on in the conversation, unless it is a close friend that can tolerate the truth and not a polite social answer - Most people when they ask in passing don't want to hear the truth or expect to hear anything out of the ordinary.
Posts: 106 | From Rural Michigan | Registered: Jul 2011
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posted
If it's a "good day" then I tell family & close friends, "today is a good/okay/bad day." If I'm about to bottom out on energy, I tell them "I'm done/ over did it."
I didn't tell all our friends/family about some of my symptoms...kind of freaked a couple out about a month ago when my arm started twitching & I couldn't hold my fork still.
Posts: 25 | From N. Texas | Registered: Oct 2012
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posted
well this was definitely NOT a silly question! i always said, "hangin in there". now that i'm in a different situation, I say, "well, I'm walking--it could be worse."
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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beaches
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OMG Robin and Keebler, just read your replies and cracking myself up.
Ceilings, levitating, skydiving...
Thanks for the levity (no pun intended) and the chuckles.
PS: Keebler I will help you into whatever jumpsuit you need for the dive. But we will still need professional assistance to carry out the mission!
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beaches
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K84, ugh, I am so sorry to hear you've been ``lectured'' by those older than you. They apparently have no idea what you are going through.
fieldbredESS, it's good for you to tell family/friends when you are having a good or a bad day provided they UNDERSTAND. I wouldn't bother going into all your symptoms with them unless/until they ``get it.''
Beth22, ``hanging in there'' is always an accurate response. Sorry to hear you're in a different situation...
''well I'm walking--it could be worse.'' Do you care to elaborate?
Posts: 1885 | From here | Registered: Jul 2012
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I think Keebler should dream high - after the Alps, the Himalayas?
Professional assistance - I believe Mandy in the UOS film was into skydiving.
Actually, it's very helpful to do some "live dreaming" - since we get to do so little in real life, why not let our imaginations play a little?
Kam understands this - she was willing to pick everyone up for a trip...well, speaking of, summer is coming - maybe we should "go somewhere." Beaches, where do you want to go? Or are you already there, at the beach?
I think this still ties into the thread here, since the answer to how we're doing is usually not so well, so why can't we find more fun ways to participate in conversations with others?
Like I had a hilarious time sometimes with the ceiling discussions and it was a lot more fun than focusing on my hurting back.
Don't get me wrong, tho - for those who can handle the conversation, it is nice to be able to actually tell people what's going on and be seen for it.
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beaches
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Robin, I don't "do" high altitudes, for the record. So if Keebler wants to fly with me, it'll have to be at less than 5000 ft.
Otherwise she'll have to hire someone else. Not that I'm being snooty or anything. I just have a fear of heights, so don't judge me OK?
That's why I stay at sea-level at beaches! I missed out on Kam's wanting to pick us all up for a trip.
Since you asked, no, I'm not already at the beach (sad face).
But oh boy, where would I like us all to be??? The Hawaiian islands, San Diego, Cape Cod, San Francisco, the Jersey Shore, Long Island, Miami Beach, West Palm Beach, Outer Banks, Myrtle Beach, Florida Keys...heck the entire east and west coast!
Pick any one of those and I'd be a very happy camper.
Just looking at the ceiling right now .... but not dancing on it like Lionel.
Posts: 1885 | From here | Registered: Jul 2012
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posted
thanks, beaches, I broke my back. fell off my roof cleaning gutters, burst fracture T11and T12 Lyme is in remission thank God. Back pain now is a fact of life. different kind of pain than when I was sick but it sure reminds me of those years. but I could be paralyzed! so trying to see the good side.
Posts: 236 | From Zionsville IN | Registered: Jan 2011
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beaches
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OUCH Beth22! So very sorry to hear about your back. Thank God you weren't paralyzed from that fall.
Guess the fear of heights can be a good thing? I was never able to go beyond the second step of a ladder. And cleaning gutters? No way.
Glad to hear that the Lyme is in remission though. We always have to count our blessings don't we?
Posts: 1885 | From here | Registered: Jul 2012
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posted
That's too bad, Beth - well, you're right - you could have ended up paralyzed, and you're not!
Hey, Beaches, I'm located in one of your choice spots and it's great here - a bit expensive, but great. And we have lovely beaches too...we have cliffs you could hang-glide off of...
Looking at the ceiling right now - good to hear I inspired you! Haven't published the book, so you'll just have to be on your own until I do...
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
If I am having a good day I tell them I am striving to thrive. Bad days I say I am hanging in there.
Posts: 14 | From Kansas | Registered: Jun 2013
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OptiMisTick
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[ 09-20-2013, 02:05 AM: Message edited by: OptiMisTick ]
Posts: 1338 | From Above the Clouds | Registered: Nov 2000
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Ugh...definitely with the oversharing. Will I ever learn this lesson? I am not one who likes negative attention but I have noticed during certain "seasons" of my Lyme I certainly get verbal diarrhea.
I think part of it is an innate sense of duty to educate the rest of the world to the reality of chronic Lyme-damned the outcome and weird looks, now maybe they will go home and look it up and check themselves for ticks-
the other part seems to be a panic response that basically causes me to blank out and go verbal while my inner dialogue is, "Oh, ****. They just asked how I'm doing.
Okay quick think, what's been going on that sounds normal?" and in the meantime the simultaneous deluge of Lyme talk has breached the dam.
But talking about skydiving and ceiling writing-now that puts some ammo in my backpack
posted
Ha - Atta mentioned an innate sense of duty to educate the rest of the world - every once in awhile, I really tell them how I'm doing!
Like I just got out of a far infrared portable sauna, and my chemical sensitivity is diminishing gradually, and my joints don't hold so well but I'm working on it with lots of minerals,
and you know what - all this was caused by a tick bite - know anything about Lyme?
And I take charge of the conversation, just because I am a bit tired of all the ignorance.
I know - a bit tedious, but they asked, and sometimes I decide to tell them, because it's a hidden part of our world and people need to know and I get tired of hiding my reality!
Now time to go look at the ceiling...
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.... but not dancing on it like Lionel.
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