Sandy and Jude, you both put into words what I was thinking but couldn't
figure out how to say. Thank you! Caregivers, spouses, significant others, and
friends all need to know that their pain and ailments are valid and
sympathized with, whether or not it is greater or longer-lasting than ours. But
you
both said it much more eloquently.
Barbara H.
_http://barbarah.wordpress.com_ (http://barbarah.wordpress.com)
In a message dated 11/20/2008 1:08:08 P.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:
First off, Jude suffers so much and what she wrote is so selfLESS. She is
always thinking of someone else. We love you Jude!
As a caregiver I will put my 2 cents in. I SO sympathize with the daily
pain that goes with TM. I KNOW, but I don't FEEL the pain. I know it because
Terry is so very articulate about it, and it pains me emotionally to see such
horrific pain. I think all of you that know me and how I react to him and
TM.
With that said, this is what we need occasionally: Just need a little
sympathy and for you to tell us that you are sorry we are in pain. We just
need a
little validation that our pain still matters. Pain is relevant to each
individual. We can't take that away. UNLESS you live with a chronic
complainer, of course! I try not to complain because my pain, (2 or 3
partially and
2 complete herniated discs and rheumatoid arthritis), is minimal relative to
Terry's. But it is MY pain and it does hurt at times. So, when those of us
that complain minimally, give us a minute, tell us your sorry for our pain,
and wait for a little bit if you need sympathy for your pain. A few short,
sweet words go a long way!
Sandy
In a message dated 11/20/2008 3:37:36 A.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:
Hello All,
Don't we remember how much it hurts to stub one's toe? I do...it hurts like
hell for a few minutes. And, no...on the scale of TM, a stubbed toe is
nothing, but for those few minutes it is something to the person it happens
to.
My husband is my only caretaker as we have no other family to step in and
give him a break. I require constant care and he gets debilitating migraine
headaches. When he is down, I must fend for myself until he is able to lend a
hand. So I go for a few hours without a meal, it hasn't killed me yet. I
am willing to do what I have to do as long as it keeps me out of the dreaded
nursing home.
For those of us lucky enough to have a caregiver spouse, as much as we
suffer through every minute of every day, we have to remember that our
caregivers
are people too and their feelings don't just end when we become ill. They
hurt. They get the flu, get headaches, stub their toes and they are entitled
to bitch a little bit about it when they are under the weather.
I'm not taking anything away from the torment we with TM live with on a
daily basis. But, as bad as we have it...there are others in worse shape who
have diseases we should be thankful not to have. I have been in this bed for
over a year, but I feel fortunate that I am not as sick right now as I was
back
then when I was not expected to live.
As often as I have said, "I just wish I were dead." "I'd be better off
dead." Blah, blah, blah...when truly faced with it, I realized that I do not
want to die...I want to live! I want to live even with TM if that's how I am
meant to live. Everything happens for a reason, for our own growth, and for
the honor of God.
I need to go to sleep now, and pray that I will wake in the morning, not in
the hospital, but here at home, in my own little lumpy hospital bed.
I love each and every one of you and am so very thankful for your friendship
and support. Without you I would have not made it this far. Without you
and without God, I would have taken my life a long time ago on one of those
nights I spent writhing in neverending pain and agony.
Thank you for helping me be strong. Thank you for helping me be again...to
have value as a human being. Thank you especially for the one person who has
called me every day for almost a year until they became ill themselves. My
dear Scarlett...I owe you everything...TIAD
Hugs to you all,
Jude
I don't think we ought to minimize our pain, but we have to allow our
families and friends to indulge themselves with a little bit of time to bitch
about
their cares and woes.
I'm tired now, and am sure you get the picture. I've gone on now for some
time.
In a message dated 11/19/2008 10:00:20 A.M. Eastern Standard Time,
[EMAIL PROTECTED] writes:
My wife has been sick for around 5 days with a sore throat/cough (she is
getting better). Anyway she asks me last night if I ever recall her feeling
bad
this long……what I should have answered was "no"…which is true….but instead
I answered "imagine how it feels to be sick for more than 11 years"…her reply
was "why does it always have to be about you?"…I apologized and just
answered her question with a resounding NO!
The point of this story is to show that even the people closest to us really
have no idea how TM effects our daily life. How even the easiest things are
now hard…and for the most part I (we) complain rarely and just go about our
day dealing with our condition to the best of our ability.
When we had the NJ TM support group on 11/2 I requested that the TM'rs bring
their spouses or parents..hoping hearing from others would enlighten them in
dealing with us. I would never wish TM on anyone (well maybe Bin Laden) but
if our friends and loved ones could feel how we feel for just 5 minutes then
they would be able to better relate. This will not happen and that is why
this list and support groups are so important. We have a forum where we can
discuss our TM related problems to people who truly understand!
Just my thought for the day!
Rob in New Jersey
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