Robert,
I'm not going to tell you that you should use a cane, or do anything
else you're not comfortable doing
for that matter. Just want to relate my own experiences.
I went years without using a cane, with the feeling that I didn't want
to be looked at as 'different'.
But then I started losing my footing more and falling. So I sucked it
up and got a cane. It
helped me be more mobile, my goal, and I didn't notice anyone staring,
or didn't care if they
stared.
The next step was parking. I refused to get a parking placard. Uh-uh,
not me! So I would
park far away, and sometimes lose steam and barely get back to my car.
One day, one of
my doctors told me I HAVE to get a parking placard. He said it in a
supportive, "it's ok
to get one, you need it", manner. I got one and i was able to now shop
in stores that
I was just driving by before.
Last week I broke through another layer of feeling different-ness and
got the Hugo Rolling
Walker. I haven't had a chance to use it outdoors yet, but I am looking
forward to finding
out what it will allow me to do. And if I get tired it has a seat! No
fear of my legs locking
up! It will afford me a little exercise which I am woefully lacking.
I hope you can go forever without having to use any of these tools, but
that's all they are
is tools. You stated your concern about being bumped into in a crowd..I
know that
feeling well.
My 2c.
Best regards,
Kevin
Robert Pall 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]; [email protected]
*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:* [email protected]
*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
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