Rob
This is a good example of what Jude was talking about. You are always upbeat
and because you are able to work full time it "seems" you have it better than
some of the rest of us. However, that 24/7 TM pain and the fear of loosing
your balance in a crowd put you right back in my Boat. I won't try to convince
you to use a cane since your description about it is right. People don't make
eye contact
and I feel like I joined the older generation. However, it's part of my public
life for now. Yep, we put on the happy face for ourselves as well as others -
just to pretend things are ok . It's nice not to have to pretend with tht TM
family
Patti - Michigan
---- Robert Pall <[EMAIL PROTECTED]> wrote:
=============
Dear Trudy,
You have addressed and brought up my favorite topic! My greatest
frustrations and anxieties have been caused by my condition! I have
always felt that no one understands what i am going thru. This includes
my wife,children,friends and most of my Doctors. In some cases this is
because I try not to share with people and in other cases they do not
understand. Unless someone has walked in our shoes they cannot
understand what is in our heads. I may tell my wife my legs are hurting
me....what I really mean to say is that my legs are hurting more than
what is normal for me....my legs hurt 24/7....and yet after 10 years she
cannot or does not see the difference in what I am saying...I hope I am
not looking for sympathy( although that might not hurt every now and
then) simply understanding from someone who lives with me and sees me
everyday. She doesnt really understand and hopefully never will. I am
still terrified of crowds...I am able to walk but a small push or shove
can knock me off my feet......vanity keeps me from using a cane...I
guess I feel it is bad to be different and a cane makes me different and
"less" than normal.......this feeling may be rationally stupid...but I
cannot help how I feel and nothing anyone in the group says is going to
make me feel differently.
Our condition makes our lives far more difficult and not being able
to talk about it makes it even harder. I appreciate the group and I know
I can talk here...even though our lives and how TM has treated us all
very differently makes each of our cases unique.
Knowing that even if I try (which I have) to explain how I really
feel to my loved ones,friends and co-workers, they will never understand
truly frustrates me! But in my experience (10 years) there is nothing we
can do about it. Hard as it seems we must accept this reality and accept
we can do nothing about it.
If anyone thinks I am wrong and or has a better way , than I am all
ears....but please do not tell me to have A "POSITIVE ATTITUDE" towards
my condition.....I am the one in this group who has always preached
staying positive and not giving in to the condition.....and I have not!
But that does not lessen the frustrations! I am 59 and have had this
condition since one week after my 50th birthday....and I still work full
time.....but not one day goes by where I don't long for the old
me.....and the older I get I accept that the cure (which is coming) is
going to be to late for me.So I just do the best I can everyday.....but
that does not make the sadness and frustrations go away...they simply
become part of your life.
Rob in New Jersey
________________________________
From: Trudy [mailto:[EMAIL PROTECTED]
Sent: Sunday, May 27, 2007 5:09 PM
To: [EMAIL PROTECTED]; tmic-list@eskimo.com
Subject: RE: [TMIC] Getting Humble...
I would strongly encourage anyone on this list to share with us whatever
is going on in their life. I and many others have "vented" to this
group. Whether it be about pain, husbands, wives, the children, the way
"others" treat us in the stores and restaurants and just life in
general. Bernard Pelow certainly shared his frustrations and pain as he
watched his daughter go thru a horrendous time in her life. I think he
might have been "overwhelmed" by e-mails... but we care... some know a
great deal more (Our dear doctor F) .... and some are the caretakers who
also need to have a place to "vent" or share or question... it's a
bit of a "risk" to put yourself out there... and sometimes you're going
to be misunderstood... but who else can really understand how you
feel...
I am truly sorry to hear that this person is in constant, intense
pain... He/She is in my prayers as are all of those on our TM list!
Trudy
________________________________
From: [EMAIL PROTECTED] [mailto:[EMAIL PROTECTED]
Sent: Saturday, May 26, 2007 4:37 AM
To: tmic-list@eskimo.com
Subject: [TMIC] Getting Humble...
This is a subject that I have not seen debated in the five years I have
been a member of this exclusive club of amazing, diverse people brought
together by a common problem...TM.
I recently received an email from someone who has been on the list quite
a while. This person has troubles just like the rest of us and we help
one another when we can, but I only tonight found out that they are in
extreme pain and at times can only sit for a few seconds at a time. Yet,
they take any amount of time they can handle to use their knowledge to
educate us and promote dialogue between us, in spite of being racked by
pain.
This person is one of the "walking wounded" and was, I thought, in
pretty good condition. Tonight, I learned that conception has not been
true...and I find myself amazed to find the depth of their disability.
Now, I am wondering how important it is for us to put on a happy face
and keep our infirmities to ourselves rather than getting honest and
sharing our limitations with the possibility of connecting with someone
else, especially new members in need of knowing that they are not crazy
and other people have the same problems that they do?
I believe that it is possible to maintain a positive attitude while
humbling ourselves enough to show others on the List the true person we
are. There are ways to share our pain, frustration, loss, etc. without
sounding like a whining baby.
Who believes that it is important to put our honest personage out there?
Does it help others? Does it help ourselves to talk about things? Or
does it serve others better to be stoic about our disease? I'd really
like to know...
I love you all,
Jude T3 to T8, Complete para with no b or b control,
and not a lot of hope of ever walking again.
"Our present troubles are quite small and won't last very long. Yet they
produce for us an immeasurably great Glory that will last forever"
2 Corinthians 4:17
NLT
________________________________
See what's free at AOL.com
<http://www.aol.com?ncid=AOLAOF00020000000503> .
