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» LymeNet Flash » Questions and Discussion » Medical Questions » social disconnection...anybody??

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Author Topic: social disconnection...anybody??
Florence1
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its not anxiety but i feel totally disconnected from conversation, reality even when in company....yesterday was a warmer day and the kids were outside and a few of the moms in the road came out to chat, i felt completely alone in a crowd if that makes sense, like i am in a seperate world, i'm there but not....it really upset me as i hadnt had the opportunity to notice it for a while and thought maybe it had passed then yesterday it hit me and i felt so upset....anybody else feel disconected?????

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Keebler
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-
When you have the flu, do you want to socialize? No.

Same with lyme. It's so much work for our bodies to do even the most simple thing that it's overwhelmed when we try to call up our social graces and engage our brain in conversation beyond what our brains can do right now.

Once we get better, we will enjoy that again. Really.

-========

Very few lyme patients get away without disruption of the inner/middle ear / balance center (vestibular system).

Take a look at some of the vesibular symptoms. These all pretty much match what lyme patients experience every day and that will explain why we don't do well in social settings as we used to do.

I used to teach college, I also had jobs that were very visible and would speak in front of hundreds of people. I loved it. Then lyme hit. Talking to even one other person became a monumental task.

With treatment, and some vestibular therapy (or Qi Gong or Tai Chi) this can improve.

----------

http://www.vestibular.org/vestibular-disorders/symptoms.php

VESTIBULAR SYMPTOMS

-----------

Question for you: are you also sound sensitive? Light sensitive?

-

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Florence1
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thanks....its a really weird feeling....just standing there trying to be nice but feeling like you dont know what to say or feel like saying.....in it but out of it...i know what you mean ......thanks keebler

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Keebler
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-
Are you being treated by a LLMD?

Are you also taking good supplements to support LIVER and ADRENAL function?

All that is vital.

I also suggest a total revamp of your activities and expectations so that you put yourself in more realistic and manageable situations.

I can't elaborate to soften that as I have to go lie down now - but you have to be very smart, even with standing up and talking to someone. That can bring a high price.

Rather than being sad, see it as smart planning to keep your body safe. Ask your LLMD for a LL PT or OT to help you make a plan. But ONLY If the therapist is LL. Those not LL are not only worthless but give dangerous advice, in my experience. They have no clue.

You need some real practical guidance from someone who is an expert with what lyme patients have to negotiate.

If conversation is required, I do better with several people and I can sit back, close my eyes and just listen. One on one, I just can't do anymore. Too much pressure and it takes are more skill than my body can muster. So don't put yourself in those positions.

You will learn all sorts of ways to excuse yourself, even if just to have some quiet time to yourself - or tell your friends that you love to listen in but just need to conserve your strength.

Of all the weights that are attached to lyme, the severe loss of social connection - on many levels - has been the worst for me. So, I hope you can keep the relationships and activities that are most valuable - however that can work. Be creative.

Good luck.
-

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elley0531
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YES. This is a real issue for me...definitely look into the adrenals like Keebler is saying.

I am not ok with socializing yet, but it does help to know why I'm not.

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Lymeorsomething
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I'm a little different than Keebs. I can do one-on-one fine but the group thing with the cacophony of sounds makes me very uncomfortable. It feels like too much sensory stimuli to process.

It's an anxiety I never had before being sick. Since I'm always conscious of my illness, I would have a very hard time being overly social right now.

It's hard enough just to muster the energy for work.

--------------------
"Whatever can go wrong will go wrong."

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Haley
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Yes I feel this way. I remember Dr. Singleton described a feeling like you are floating. That is sort of what I feel like. I am disengaged and unable to process information. Some people refer to it as brain fog, I don't think that is a good description.

[ 01-15-2010, 05:40 PM: Message edited by: Haley ]

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Keebler
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-
The phone really clobbers me, too. I've had to hang up on simple inquiries just because of the particular pitch of an operator's voice.

I cannot listen to ABC's Diane Sawyer, any talk shows with applause . . . and (not even being political here but) I've had seizures from the voice of Sarah Palin.

Now, I like Diana Sawyer. She is a good journalist . . . I used to be able to listen to her. But I can't any longer. Don't know if her voice has changed in pitch or my ears are just sharper.


I've also had seizures from others' voices (many commercials) - just from the tone, pitch or timbre . . . something about a person's voice sometimes. I've learned from the first word out their mouth if it hurts my ears and does that chalkboard thing, that I need to run, fast. If I try to tolerate it, my ears and brain never get past about 2 minutes before this rocket blasts to the moon.

[But, BTW, America: many of you out there ARE talking at way too high a pitch. Toning it down can help your throat and your career.

HSN and QVC, you should offer voice lessons to your presenters. Young women in sales: a cutesy voice is neither feminine in the strong and grounded sense of what being female is really about - nor is it cute. If a high voice is meant to attract men, you'll get the wrong kind.

. . . sorry for the digression - I keep trying to get the world to tone down a bit so I can be more a part of it. And, I actually used to do a bit of voice training with my former speech students - I just never knew the degree to which that would cycle back around in my life, though.]

===============

For those with ANY sort of hearing issue, there are some links here explaining more - and, as always, what can help.

---------

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=065801

Topic: TINNITUS: Ringing Between The Ears; Vestibular, Balance, Hearing with compiled links -

details about HYPERACUSIS, too (sensitive to even soft sounds)

-

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vtjarks
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I am so glad to know that I am not the only person facing this. It is so hard to go out in public and interact. I feel like I am way behind the conversation. I am scared to get on the phone because it affects my speech sometimes and I get really embarrassed. On the positive side, my LLMD has told me these symptoms will get better as treatment progresses.
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Florence1
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haley..it is like that kind of floaty feeling as i say there but not......one on one with people i know i do ok, not like normal but ok but in a group..no good....i have only done it twice at the beginning of this diagnosis( oct/nov ) and yesterday, other than that it has just been family or alone....i dont have an llmd yet.....i see someone next friday, not who i would like to see but at least someone, then i do have an appt with someone else in march in another state, and i plan on making some more calls monday....i know thats what i need to do, just lacking in acceptance that i wont be fixed by next week and trying to find someone...within budget ( which i now realise I have to suck it up if i want to get on the right road).....i havent worked in 4 months because of all
this so the social interaction hasnt been noticable again until yesterday....thanks all..

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Keebler
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-
Florence,

with longer posts, you might get more replies if you can break up your text. Many here have trouble reading more than about four lines without breaks like this:
----------------

Florence writes:

haley..it is like that kind of floaty feeling as i say there but not......one on one with people i know i do ok, not like normal but ok but in a group..no good....

i have only done it twice at the beginning of this diagnosis( oct/nov ) and yesterday, other than that it has just been family or alone....

i dont have an llmd yet.....

i see someone next friday, not who i would like to see but at least someone, then i do have an appt with someone else in march in another state, and i plan on making some more calls monday....

i know thats what i need to do, just lacking in acceptance that i wont be fixed by next week and trying to find someone...

within budget ( which i now realise I have to suck it up if i want to get on the right road).....

i havent worked in 4 months because of all this so the social interaction hasnt been noticable again until yesterday....

thanks all..

(Florence)
-

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Keebler
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Florence,

If you've only had this a couple of times, it could be partly due to changes in the weather that affect inner ear pressure.

Foods, sometimes, too. I assume you don't consume any MSG or artificial ingredients of any kinds as those can intensify these sensations.

Low blood sugar, too . . . when you see the health professional this friday, I hope they can help with lyme matters - be sure to ask for adrenal support. Gentle is key.

Good luck.
-

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sutherngrl
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I most definetly experience this exact same thing. I feel like I am caught between 2 worlds(the lyme world and the normal world).
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catskillmamala
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I had this for 1 year straight and I am happy to report to you that this feeling is GONE!!!!

I used to sit in board meetings and wonder if anyone could tell that I didn't really feel like I was there. I wound up resigning from many boards and giving up a large part of my legal practice because of this feeling which was exacerbated by word-finding and short-term memory problems.

These problems are gone. I do feel connected socially, and it has been a huge relief. When I was sick, I didn't want to be around people, to have to answer the question "how are you?" or to make small talk.

Just posting to tell you that it can go away and I haven't given up my lyme activism or interest.

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Haley
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Catskill.

How long did you treat for?

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Florence1
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keebler....thanks i have often wondered why people write their posts line by line now i know......

i dont think its a change issue as i said i had it in the beginning then since then i have just been out of social situations because of not being well, and avoiding situations...

i just happened to get caught up yesterday and had "that" feeling.......

thanks all.....

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Florence1
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oh and i also hate been asked....how do you feel????...because i am upright...and look ok....i dont know what people expect me to say

or as a neighbor said to me today..oh so your not dying this week because i was up and in the front driveway.........uuuggghhhh!!!

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Keebler
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-
Disassociate from THOSE kinds of people. Don't give your energy away to that kind of attitude.

Sorry, though, to have such a snide neighbor. Just disconnect. That kind of disconnect would be a healthy step.

======

MAGNESIUM and FISH OIL should help. Curcumin, too.

-

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Florence1
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I know....i guess people just dont get it.....

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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Amanda
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This is a classic symptom of lyme. Also, sometimes Bartonella or even Babesea can cause similar feelings. I think deep depression can also cause this.

For me, I sometimes feel like I am not in my body...or its like in the movies, when the central character is looking out and everyting around them is going past them fast or slow, as if I am somehow the hub of a wheel, with the toiled paces of the world flowing away from me in all direction. People talk to me, and I want to interact, but the words are so slow and heavy that they can't escape my gravity...

You are not alone in these feelings

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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canefan17
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lol Keebler,

you seizures to Diane remind me of Kramer having seizures to Mary Hart's voice.

http://www.youtube.com/watch?v=QH3yRojpU8M

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Robin123
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I feel this dissociation a little - not as strongly as you're feeling it.

Once in a while, if I feel I can trust people to hear it, I decide to tell them it's due to this bacterial infection I have and that it's a typical experience for many with it.

I stay matter-of-fact, low-key, in an informational mode, like that's how it is, to explain it to others.

Up to you if you choose to let people know that you have this, and also whether you feel like dealing with the discussion that might follow.

Sometimes it can help others understand us by letting them know.

And if it goes well, it might help make you feel more connected with the people you're with, 'cause now they might understand you better, and that part helps.

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nefferdun
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This is very classic of bartonella and I have used the exact same expression - disconnected - to describe it. I feel I have to fake it to the world because I am just not connected to anyone or anything. The LLMD picked up on bart as soon as I described myself. Some people call it surreal or depersonalized or being "out of body". For me, disconnected tells it all.

Most of the time I have very little motivation or enthusiasm - a general apathy. But when I begin treating bart, everything suddenly goes bonkers and I am crying hysterically over nothing or leaping off the wall practically grabbing my spouse by the throat for slight offenses. I think with lyme I felt so tired and sluggish that it was hard to do things but I still wanted to. When the lyme was under control the bart fully released and then I just didn't care any more. It seemed to be pointless.
I was numb but when I did feel it was like hearing a screech.

Besides that my mind was just not available. I could not remember, had no concentration or ability to learn. All I wanted to do (and still do) is rant about bartonella and what it is doing to me. How many people are interested in that?

As my memory is so bad I often feel lost so I become obsessive trying to remember. I fear just fading away into the confusion and cloudiness of my mind; eyes glazed over and soulless. I cannot relate when I cannot remember a person's name or what they were talking about and the importance of it all completely escapes me.

So it isn't just being sick, it is how I am sick.
I got better once and I am struggling to do it again.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

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Florence1
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thanks you nefferdun...thats completely it even to the point of being obsessed trying to remember things.....complete frustration....i will literally think of something then its gone into the black hole and theres nothing there....my bart came back neg through my PCP at labcorp......not sure what that means ....or am i just losing my mind.....

--------------------
Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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j_liz
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Before treatment I felt like I was in a fog, not brain fog. It was like being in a parallel universe. It was so hard. That has cleared up, thankfully.

After that I was good one on one, but could not keep up even with one more. I couldn't hold a thought or come up with a response fast enough, and then I'd just lose the conversation totally. I think that has gotten better.

I have just withdrawn. I started that when I couldn't even get a "hello" out right. I don't feel it's a bad, psych withdrawn, but like others said, it's a conserve the energy w/d and cut the stress w/d.

It is so much more relaxing this way. My sis just said to me the other day wouldn't it help me cope better being around others. I said no. The internet keeps me connected and I can reply when I am up to it or just leave it.

liz

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catskillmamala
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Hayley,

I treated for approximately 2 years and have now weaned to rife completely.

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been
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I feel exactly what you all described!

I feeling like I'm "floating" and having a never ending OOBE (out of body experience) and depersonalization all the time.

It's difficult to live like this. The "brain fog" is debilitating.

I just started Zithromax/Plaquenil/Mepron for Babs, Bart and Lyme.

I hope this "fog" lifts soon, reading all your posts makes me feel better [Smile]

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Keebler
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-
http://cassia.org/essay.htm

When to Suspect Lyme - by John D. Bleiweiss, M.D.

Excerpt:

. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .


- full article at link above

(but, caution - type style and spacing make it very hard to read. You might copy and paste and change it for better viewing. It is very good article so don't give up just because of the appearance.)

-

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lyme in Putnam
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I recently did a post on depersonalization - I live in it. If you did a search, depersonalization, I got some interesting responses. I live every day in this and when it drops, it just my life. I'm being treated for lyme and bart and have issues with anxiety. It does pass, but its a scary feeling when you don't feel yourself. Feel better.

--------------------
He took u to it, He'll you through

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O2Btickfree2
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Boy does this hit home. I am suppose to be around people but i just cannot i am getting to the point i dont want to at all. I can go to a store with people i dont know for a few minutes. Only because i dont have to deal with them. maybe its the questions or looks or doubts i fear there thinking about me. I also cannot seem to focus when im talking to them i find myself wandering. Or even if im talking its like there bored and my life unfortunatly is sickness right now. I mean what do i have to talk about im in bed most of the time. I dispise this mess.
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LightAtTheEnd
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I don't have the depersonalization, but I do get stumped thinking of what to talk to people about, since I spend so much time sleeping and my friends have already heard all about my Lyme symptoms.

I used to have a lot more interesting ideas and topics to converse about.

And I hate the question "How are you?" If they don't ask, I think they don't care or have forgotten I'm sick, and if they do ask, I am still the same as I have been for the last 8 months, so I can't say "Fine," I can't say, "Better," and they really don't want to know all my daily ups and downs.

And then there's the dreaded, "So what have you been up to lately?" Oh, I don't know, sleeping, taking pills, taking baths in epsom salts, sleeping, worrying about money, getting through work in a daze so I can come home and sleep. Fun conversation, that.

Sometimes I feel like it's difficult for my old friends and I to relate to each other the same as we did before I got sick.

--------------------
Don't forget to laugh! And when you're going through hell, keep going!

Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009.

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Florence1
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keebler...thanks thats a very interesting article...and strikes a cord on many levels.....everyone else....i'm sorry you deal with this but glad to know i am not alone and not just going crazy.......maybe a little of that to but who knows.......

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Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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map1131
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Oh, yes I do and yes I have issues with social disconnect. Some on this board know or have observed I disappear from posting on this board for long periods.

I try so hard to control my feelings with being around family & friends. My husband is a very social person. I used to be. Still am if I'm having a good day.

You would think that just being a part of a website aimed at support would be no big deal. Even during my absenses from lymenet...I visit and read some but cannot find myself helping others or even sharing info.

I truly believe this to be part of my bart sx. I'm fighting bart in 2010, so I hope to rid myself of this sx.

I don't associate brain fog or fog with disconnect, so we could be referring to different experiences.

It's more like feeling a need to back out of the social world as much as I can. I find socializing to be so mentally, spirtual, and physically challeneging.

Pam

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"Never, never, never, never, never give up" Winston Churchill

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Florence1
LymeNet Contributor
Member # 22960

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i find it so interesting that it can affect us this way and sorry that it does........

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Oct 09 Positive CDC Western Blot
Jan 10 Positive Babesia Duncani
Jan 10 Cd57 28
Mar 10 EBV, IgM, IgG
HHV-6 IgG

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farraday
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Member # 21494

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This seems to be a very popular subject and one that I can relate to in many ways. For the past twenty plus years I have been experiencing it.

When I was well, running my company, making speeches, testifying, managing my household and 3 kids I was very outgoing, enthusiastic and talkative. Our Christmas parties were legendary.

After I got sick I withdrew from society, where I remain today. I have had to redesign my lifestyle and accept the new me. It has been a long and difficult journey. Most of my friends disappeared...unable to face me.

It was the same when my late husband was dying of cancer. People are afraid to face illness and death, especially when it happens to young, active people.

Now I simply do not talk on the phone....only rarely. I sit quietly in a corner of required social gatherings. I am embarassed by my stammering. My life these days is spent mostly in bed.

I am lucky to have a wonderful husband who cares for me and provides great conversation and who understands my situation. His voice is soft and low and he likes the quiet house. My windows are darkened.

I am taking the shots and know that I will get better with them. Once before I got better on IV antibiotics and I know I can do it again. But meanwhile I am in "quiet mode". My grandkids are happy to snuggle in bed with me and watch movies or draw pictures. They know that I will be better some day.

And I heartily agree that people would do so much better in public life if they learned to lower the pitch of their voices! It used to bother me, but now I find it intolerable!

One thing I am doing that brightens my days is to scrapbook my photos. I can only do it for a short time, but I do it and feel that I have a life afterall. It is my new social outlet. I also made beautiful cards on my headboard shelf.

They say that a measure of intelligence is the ability to adapt. I am trying my darndest to be intelligent! [Wink]

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DOCTOR: "I don't think you are sick."
PATIENT: "We are all entitled to our opinions. I don't think you are a doctor."

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