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Mood Disorder Community
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leruok
Incredible Member (2000+ posts)
2674 Posts
Gratitude: 1709
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 Posted - 03/17/2011 : 17:45:12
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I haven't been able to understand my patterns
for some time.
I work, rest, work, rest.
This has all been very perplexing.
My main problem, has been trying to explain this
to people in my life.
Because I haven't had a major manic episode for
awhile, I think they have been struggling to
understand what is holding me back.
I've been trying to understand it myself..a real quacmire.
All I can tell them...is I'm weak...or, I can't.
As I'm reading through the literature on MG, it's all
falling into place.
Everything makes sense.
Emotional outbursts make me physically sick, getting
angry makes me sick, frustration weakens me.
I knew this much.
Now try not to do these things when your bipolar..ya.
The only possible way..is through meds.
Now, not having the ourbursts, or not expressing it
outwardly, doesn't mean it's not buried
inside. This is what I must work on, is not letting
things bottle up inside and not internallizing
things.
This is a difficult road, really, really tough on
some days.
It seems I'm one of those people who doesn't have a choice.
I HAVE to do all the things that are healthy for
me, or I could become seriously ill.
My body has been telling me this for some time.
But this bipolar illness says..to hell with it. Have
fun, push past your limits..and see what you
can do.
I don't want to do that anymore, even though it's
what I feel like doing.
I want to get better.
I'm only 45, and it's time to travel the road
of common sense.
With the right meds, yes, even us bipolars are
capable of getting it right over time.  |
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| leruok
Incredible Member (2000+ posts)
2674 Posts
Gratitude: 1709
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Posted - 03/19/2011 : 00:18:48
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I had a kind of a rough day today.
Forgot to refill my lithium...so missed last
nights dose.
Got it filled quickly, and down the hatch..and now, I'm
back in the safety zone.
But I'm weak. I had hoped for a little improvement, but
none so far.
So, I'll keep waiting and keep taking the meds.
I'm just tired.
So much going on..and my brother loves to talk
about world events..so it wore me down
a little. I'm a bit raw.
But after a good nights sleep, I'll feel much
better in the morning.
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| leruok
Incredible Member (2000+ posts)
2674 Posts
Gratitude: 1709
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Posted - 03/26/2011 : 00:49:27
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I try so hard to express my feelings, and have
such a hard time staying on track..and
being honest.
Being vague and remote..isn't intentional, it's
engrained and stems from fear.
Fear of being rejected and fear of not being understood.
In our household, mom could be quite neurotic and
emotional. There was only one person
in the household who's feelings mattered, and it
was hers.
Being honest about feelings, meant risking
a disagreement. There where consequences for
that (although I've forgiven, I see patterns from this).
Now, I'm married to a man who cringes at the word
"feelings". His family is the same.
And of course after Wayne's stroke, I've been
struggling harder than ever to stuff
everything down, so that he isn't affected.
The simple fact is...I've let myself become
reduced as a human being.
I believe it's this that has sickened me and played
a big role in the development of
Myasthenia Gravis.
Ironically, feeling too much, can make me become
sick physically.
It has, for some time. This is why I run from
intense situations, why I don't respond, why
I have to shield myself. Because
I feel too much...and by engaging, I fear I
will set off a storm and become
sick. I instinctively knew this before this
diagnosis of MG.
I haven't understood reason until now, but physically, I
can't bear it.
I am living testimony that emotions, mental health, and
physical well being are tied together.
I don't know what to do about it right now.
I can't risk upsetting Wayne, and won't talk about this
with him, not right now.
But something has to give.
The lithium has helped me maintain stability of sorts.
I feel that with it, I may be able to
broach this issue, and move on to greater clarity, and
perhaps get some outside help.
I have awoken for the last two mornings with tears
in my eyes, but can't remember what I was
dreaming.
It's a good start, as strange as it may sound.
Because another person is suffering more, doesn't
diminish my suffering.
I have thought this, but now realize, that until
I get to the deeper issue, and
learn to start expressing what I feel without
feeling that somehow it's wrong, that
I will still be a reduced human being.
I feel sad, and hurt that this is a reality for
me. But this is reality.
Wayne constantly gets on me for doing too much
for other people when they have problems.
Says its their problem, why should I have to deal
with it?
He turns the TV when it's violent, doesn't want
me to get upset (and I do).
He's always poking about something, that inevitably
revolves around my sensitivity...and tries to
shield me.
I think after so long, that somehow I have come
to feel that how I am is wrong.
It's a hurtful feeling.
I think it is harder for sensitive people in
this relentlessly violent and unmerciful
world..there is no doubt.
But somehow, there has to be a way to balance
things...and face things, without
becoming too emotional...yet not running
away.
I really believe if I can learn to do this, the
MG flares will diminish.
If not for the lithium, right now, I don't know
what I would do.
I cringe to think of it.
But it's one of the good things I've got going.
I've done the forgiving, and moved on.
Now, it's about accepting who I am, and not letting
other people out here bully me
into thinking that somehow it's wrong, because
I'm not like them.
As I look at it...that is just so wrong.
There has got to be a way to find
balance...somewhere in my mind.
I need to find it.
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| leruok
Incredible Member (2000+ posts)
2674 Posts
Gratitude: 1709
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Posted - 07/23/2011 : 03:20:17
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Had to go for a barium swallow test today.
I'm losing weight because I'm
finding it hard to eat anything
but small amounts of food.
The problem began, or was exasterbated by
Depakote.
I don't think the doctor has any idea
how it feels to swallow a horse
pill and have it get stuck somewhere in
between the throat and stomach.
There it sits, disolving..and then...up comes
the acid, thereby inducing nausea and
subsequent vomiting...yuck.
I get hot..and sweaty and feel sick and weak.
Now..he doesn't seem to GET that the
Depakote is really doing this.
I didn't stop taking this pill because I'm being
obstinate.
I'M TRYING TO SAVE WHAT BIT OF STOMACH I HAVE LEFT!
So this is the reality of a doctor trying
to treat both a physical and mental illness
at the same time.
It's frustrating for him...and painful for
me.
Seroquel has been a lifesaver..and tonight, again, I
took one.
Waiting for it to work..because the acid
is coming up again, and I won't lay down until
it stops.
So, now..today, the doctor that did the study, now
suggests I go for a gi study.
And I have to go to the heart doctor to have
my aorta xrayed because I also have
Marfans syndrome.
My grandpas burst, and he had time
to make it to the bed..that's it...finito.
This is the reason I'm so leary of taking too many
medications, even if they make me
functional.
It's a damed if you do, damed if you don't scenario.
I come out looking like an uncooperative
patient that is unappreciative.
This simply isn't the case.
I'm just tired as heck of jumping through hoops
with no end in sight.
I've wondered if just stopping everything, I mean
everything...cigarettes, caffine, and
all processed foods...would help or hurt me.
But here's the kicker...I can't even take
my multiple vitamin...so those are out.
It's a scary thought.
Any talk of that with Wayne, and there will be hell
to pay.
I hate lying to him about my meds.
But unless your the person going thorugh it, you
can't imagine the exasterbasion of
trying to do the right thing for the best possible
outcome...and remaining
physically intact...Ughh.
At the end of the day, if I think that demons
are out to get me...and begin feeling that
my only purpose in life is to make
everyone else feel better about themselves
because I'm such a louse...than I'm in
really bad shape.
I don't want to be in that place.
It sucks to be so weak that I can't lift my arm
to pet the dog, or sweep the floor.
So what is the lesser of the evils?
I really don't know.
I can only hope for a balance somewhere.
As of late, I've become more jaded
and cynical about my prospects for a quality
life.
But I have no choice but to keep moving
forward in some capacity...because I
also have good days.
I guess the moral of the story is...when it comes
to getting the best possible care from
the doctor...honest communication is
a necessity.
I remember one time when I was younger, I was feeling
kind of ill and told my mom about it.
Because I wasn't assertive enough...she dismissed
it...until I fell down and collapsed.
I had hapatitis A.
I'll never forget that...and I guess it what it
boils down to, is that I'm the one
that knows my body.
I know if a pill is really, really making
me sick.
I have to trust my body and trust myself.
But this merry go round is just going faster
and faster and now my head is spinning and
I just want to say...let me off.
Well, that's not an option...so, I guess
this is where courage and patience comes
in.
Gee, what choice do I have.
I just wish doctors could see how stuck we
are sometimes...how backed up against
the wall we can become through no
fault of our own (and forego the
downward, punitive stare that just makes
me want to cry because I'm already
frustrated).
It's not that we don't appreciate them...we just
don't always appreciated the pills that
they have to work with.
Let's see...the best pill of all..is Lamictal
coupled with quells...but...I would be
bald...that's reality.
Now how many woman do you know that would
actually do it...stay on a med until
they are bald?
Geez...no wonder I feel like a whack job
sometimes.
I know I'm not...but some days it feels
like it.
Time to go to sleep...prilosec is working..I'm
exhausted..and have to be up
by nine.
I'll enjoy the sleep I get...at least it'll be
quality.
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| leruok
Incredible Member (2000+ posts)
2674 Posts
Gratitude: 1709
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Posted - 08/10/2011 : 00:39:02
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Another doctors appointment tomorrow.
Hmmm, I'm nervous as usual, don't
know what to expect.
More tests came back abnormal, something
in my throat.
Honestly, there have been many a days that
I just get so down about this whole
thing that I have no idea about
which direction to go.
I feel as if I should be doing something
to help myself...but for the life
of me...I don't know what.
I'm totally dependant on the doctor
for a solution.
I'd like to go back to work, but I know
that seroquel by itself is very
risky when adding additional stresses.
But, I have to keep trying.
I can't let myself think about it over, and
over.
I just try my best to move from one
day to the next, be patient, and keep
my head up as best I can.
I know that if we can get me on the
right mg med, this weakness will
be bearable, and I'll feel a lot better.
I just have to be patient, I don't
have a choice.
If I let myself start to unravel, and
let it all pile ontop of me, it's
a downward spin that is hard
to stop.
And that downward sprial hurts me
physically and mentally.
So I try so hard to stay
away from that edge by talking it out.
Sometimes in life, options aren't available.
There is no clear solution in sight, and
the only thing that helps, is hope
and faith that my patience will
eventually pay off.
As it stands, I get so weak sometimes, that
all I can do is sit there in a
daze, unable to do anything but breath.
No phone calls, no talking, nothing.
Just waiting for the weakness to
pass.
Such is my reality right now.
I have limited reserves...and can not
apologize for that, because
there is nothing I can do about it.
Now if only my heart would catch up
and realize it too...and stop
giving me a lashing for something
I have no control over.
I can only do so much, and that's
reality.
So, I'm trying to focus on those
things that I can do, and do those
things well.
I'm hopeful, but realistic.
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
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Posted - 03/17/2012 : 17:08:06
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Seroquel dose has been increased. Now, my sleeping is
better. I'd been waking up at night.
I feel much more refreshed mentally now.
I'm still trudging along, dealing with both
of these illnesses.
It's not unbearable, now that I'm coming to
accept it.
My heart still aches sometimes at the loss of
what could have been. But who's to say that would
have been so great anyway. What would I have
done, gotten myself into more trouble somehow, bitten
off more than I could chew?
Probably. It seems the way of people that are bipolar.
W, he follows my lead emotionally. I'm a bit stiffled
at his recent bout of depression.
I'm a bit depressed myself, but can't have antidepressants.
I've been down that road and nothing
good comes from it, ever.
I have to just suffer through until I can
work things out.
There's one thing that's always been apparent to me.
If everything seems to unravel all at once, it's not
the other guy...it's me..somethings wrong and I
need to adjust my attitude..or my outlook.
Another family member almost died recently.
Everyone was at the hospital, and pretty
emotional.
The burdens of decisions fell to me.
There will never be mercy for my illness, never
understanding to a degree that counts.
I will never be let off the hook for who I
am...or I should say..who I used to be.
It's OK, it's letting myself off the hook, and
cutting myself slack is what matters most.
The inward reality is the one that is
the most real and has the biggest effect on
me.
Others, well, they'll have to learn as they go
along, just like I do.
Hurt will become bearable over time. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
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Posted - 03/17/2012 : 18:52:01
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I was just watching Michael J. Fox on TV. I 've always
thought he was cool, and had a crush on him
when I was younger.
When he was first diagnosed with
parkinsons, I thought..no way.
It seemed impossible that someone so
vibrant would be struck with such
an illness.
Now, I think the same thing about myself.
Really, it doesn't seem real. At the end of
the day, what am I left with?
A family that (except my brother and W), that
won't accept it.
It's just one of those things, that until your
bad enough to be falling down all the
time...it will never be real to them.
How do I explain this to them?
Should I even bother?
What am I left with at the end of the day?
The only thing I can say for sure, is that it's
not getting any better.
I wonder, was it caused by the meds I take?
Does it really even matter?
There's no rhyme or reason for it, just nothing
except stress and lack of sleep that seems
to trigger it.
Has it made me a different person? YES.
I resign much easier than I once did.
I simply don't have the energy I once did, and
even when I do..it's zapped quickly.
So, that's it, that's my reality. Somedays I'm
here, and some days, I just float along in
some sort of haze.
I'm not going to kick myself over it.
I mean, what good would that do? As far
as I can see, everyone on this planet has some
sort of uphill battle of some type.
Mine is unique to me, each is unique to them.
I'm not good at doing groups, not good at
expressing myself..because out here, I usually
get cut off before I can get two sentences
out.
Everyone else always seems to need more attention, more
than what I do..that's just how it is.
I don't have the energy to fight how it is, how
it's always seemed to be.
But, I'm thankful for what I do have, thankful
for good insurance, thankful to stil be
able to help where I'm able.
I can wish until I'm blue in the face, but it's
only what I can really do that matters.
I don't know anything else that has ever
worked for me.
Life just seems to always have been some sort
of learning process.
That old saying about being able to bend..hmmm, that's
just about it in a nutshell.
Bend, or sit here and not do anything.
Bend, and have hope that I can find a way
to be productive from behind this keyboard, or
perhaps a canvas.
Who knows..life can really throw it sometimes.
It's all about the twists and turns for me.
Hurt will become bearable over time. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
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Posted - 03/24/2012 : 10:19:41
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People speak of a "personal truth".
I've always tried to adhere to my own personal
truth, or, what I think that to be.
With these illnesses I've come to understand one
thing about myself. My own personal truth
is not one that has benefited me as much
as it should have...if I'm really that sure
of it. Doesn't a healthy personal truth
expand and open up a persons life?
Wouldn't it be a catalyst for growth, rather
than withering?
I've thought and thought about it. I'm certain of
what I believe...in love, forgiveness, and
mercy. Those are the qualities that I've tried
so hard to incorporate into my life.
But in relationship to what...to myself, or only
to other people?
Ironically, it's to other people. Love, forgiveness
and mercy defaults to them, not to myself.
Others need it more, because no matter
what happens I'm the strong one?
It's one thing to have my own personal truth, but
another all together, to apply it to myself.
How sad, that I have not been kinder with
myself, despite the illnesses.
It's little wonder, that I am not thriving the
way I once did.
I curse myself for having these illnesses, and
I get angry, frustrated and defeated because
of what I can not do.
It's one thing to be delt with harshly by another
person, but I've realized that doing this
to myself has become the epicenter of the
earthquake that can be my life.
I've been working at self talk, trying to stop the
negative thoughts that work their way in
on a daily basis. When I drop something, or can't
open something, or tire out and can't finish
what I'm doing, or become
irritated with someone...my frustration level builds
and I end up emotionally kicking myself for
it.
I don't know how I'm going to do this..to
really accept the realities of who I am, all
the grey areas, the things about myself that
I don't like, and replace this with
something good that I give to myself in place
of the hurtful lashings.
It's the oddest thing to think that a human
being can be subjected to such mental
and emotional anguish as a child, and then
realize as an adult, that it's up to the
child that was hurt, to give themselves the best medicine
that they can...by loving themselves.
It seems contradictory, but it's the only
bit of trueness that I can find that
is so lacking within me.
I've watched people in wheelchairs that have a
smile that's heartwarming. They are much
worse off than me.
I've wondered over and over, how do they do that?
How do they keep that wonderful attitude
and positive outlook?
I think I'm getting it. I think they can be
happy...because they treat themselves well
emotionally.
They like themselves for everything that they
are.
I keep trying, and trying. It's up to me to
change my own personal truth.
It's not been all together a healthy one.
If only, if only I can.
As the young and wise Jody said in her
blog, if I keep moving, I'll succeed.
I can only look forward to my small goals, the
ones that are important to me daily.
But if I can learn to like myself, the battle
will be so much easier.
I need medication for these illnesses.
But in all honesty, I need love more than that.
I need to love myself. I think when I
can do this...then I can truely let other
people love me too. I think it all
goes hand in hand.
This is something I've added to my personal
truth.
Hurt will become bearable over time. |
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| XaosLord
Super Member (250+ posts)
767 Posts
Gratitude: 143
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Posted - 03/29/2012 : 06:06:46
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One word: Acceptance.
It's not a very big word, to be sure, but what it can do is work
miracles and change your life.
How?
First we have to begin with the premise that A = A; that is,
everything that exists in the world is what it is and is nothing
else.
Where we often go wrong is in trying to reshape our realities
to be something other than what they are.
This causes problems for us because it creates conflict. One cannot
live inside a contradiction.
And for BP folks, this is especially true, given the up/down cycle
we experience. When we are manic, we feel pretty good right at
first, but this is illusory. When we are depressed, we feel pretty
badly, but this is also illusory, in that it passes with time.
Denial is a big part of human existence...we almost seem obligated
to put on the brave face and tell our friends or co-workers that
we are all right, even when we are clearly NOT.
If one is unwell, one is unwell and people who do not experience
what we do don't understand this. They try to deny our reality
through ignorance and they tell us to "Buck up" or "Snap out of
it"...if only it were that easy.
And when our psychological ills are compounded by physical woes,
as is often the case, we're accused of "Faking it" or outright
lying. The saddest part of all is that these statements and others
like them frequently come from those who are supposed to love us
and take care of us.
But it is simple:
A = A.
Nothing can be what it is not.
We don't lie and we don't fake it and we CAN'T snap out of it.
But if we accept this, we can work within the parameters of our
illnesses and progress rather than regress and live always in
shame and confusion...and if our loved ones can accept that what
we are is what we are, then they can become a help and not a
hindrance.
- E.
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 04/02/2012 : 12:32:04
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Xaos..thank for those words of wisdom.
Where we often go wrong is in trying to reshape our realities
to be something other than what they are.
I can't tell you how true this is for me. I do
try to reshape my reality, because I haven't yet
accepted it.
I intuitively know, that accepting
my reality for what it is the key to relief.
But man oh man, is it taking me time to
get there.
I used to be the "strong one" in the family.
This is no longer true..but in times of crisis
when things get emotional...decision making
falls to me by default.
It can be agonizing..and I want to tell them..please, would
someone else take the reigns here, because
this is going to make me sick.
This is the part of my
illness that they don't yet get.
But the reality is, that it's always been my
nature to be the first responder in times
of crisis. But now, I feel stuck, knowing that
if I take that leap, it may make me sick.
Your so right, we don't have a choice, this
illness seems to have a mind of it's own.
How does a person come to accept this? It's
so limiting. And, how do I move on from here?
The progression of this illness has created a
whole new reality, one that on some
days, seems so horribly suffocating. How do I find my
comfort zone, and yet become productive again, when
being productive can no longer be true
for me..in the traditional sense of the word.
These are all questions that I ask myself
daily. Somehow, it's all about finding
a new stride while keeping it real, and
keeping an eye on the parts of myself that
I do like. I think this is close to
what I need but needs so much refinement.
The rest will have to come from learning how to
accept help from others who understand.
I'm sorry I haven't responded sooner.
This is such an emotional issue for me.
But I certainly do appreciate it.
I'm sorry to see that you are taking a break.
But I understand, I've felt the same way
at times..skewed and in need of a break.
I hope you are finding what you need in the
way of treatment, and support out there.
Please be kind to yourself, and I will
try to do the same.
Here's wishing you all the best until
your return Xaos. Thank you for your
kindess..to myself and all us members at
MT  .
Linda
The true person lies beneath the skin. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 04/05/2012 : 12:13:16
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I'm going today to get a sketch pad and
drawing pencils. I want to start painting
again...but need to get my composition
skills back in order.
Painting at the canvas...my arm get so tired
that I have to hold my hand up with
the other hand...and then stop.
I know...it's pretty bad.
But...that's reality, that's how it is.
I've been giving up lately, giving into
the idea that I'm done. How on this
Earth can I be productive when I can't
hold my arm up for long, or use a
muscle for too long, without having
to rest?
OK...yup, now I'm getting angry.
It's human. I need to allow myself these
feelings...and move through them, rather
than chastising myself for them.
That's what I've been told, and I
know it's true.
I think at this point in life, I need to
think about my attitude.
I can sketch, and if I get a drafting
table, I can paint...I can rest my
arm on the table.
That's what I can do, and it's better than
doing nothing..it's a step forward, and
it's something that I enjoy.
W needs to know that I'm trying, even if
it's a small thing...otherwise, he's
left feeling that I'm giving up.
This is what's been hurting him
lately.
I've been self centered lately, in my own
head..spinning..wondering what I'm going
to do.
I thought perhaps, these symptoms where in
my head...God how I wish it where so.
But this isn't the case.
I'm going to have to accept it.
It feels so ugly and foreign to me..these
limitations.
But, I'm only human. Take W when he couldn't
walk after the stroke...he was in a
bad place in his head.
I completely understood it...now, he needs
to cut me some slack until I can
wrap my mind around this.
In the meantime, I'll sketch, and create.
I did sell some paintings in MI.
I'm sure I can do the same here.
Well..I says to myself...it's time to face
the world..face reality, and get
my heart out of my throat.
Life is for living..no matter the disability.
People live it in wheelchairs, they
live it with medications...they live
it alone and with others.
But the happiest ones, are the ones that
live it.
I says to myself...live and love.
The true person lies beneath the skin. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 04/13/2012 : 07:56:51
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Up early..not enough sleep last night.
Sunrises..sometimes unsettle me. I sometimes
still sense a rush of cold muscles pushing
my body forward, lungs heaving and
burning violently...desperation
to win, to prove that I..the one without, was
worth something.
Strangers...staring after the race..a stomach
unfilled, and a life that shifted
endlessly.
Always the unfamiliar...the wispers.
Others had money..I did not, but I had
something more...courage.
I never made the Olympics...but that
way of thinking became entrenched
into a young mind that would never forget.
Mornings..why do they have to be so
hard.
As time has past...the old voices become
weaker..and morning panic has lost
some of it's hold.
I no longer hear the pop of a gun and
feel the need to lunge forward.
But I still don't know how to feel sorry
for myself, and can never undo what
such training instilled.
No matter the path...a person must walk, or
run it..one step at a time.
The training is still important, but
my reasons for wanting to finish have
changed in my later years.
A metal is no longer the goal.
I still fight to understand my dilema, but
am getting there each day..through
the sadness, joy, and complancey I
sometimes feel.
One small step into each day.
The true person lies beneath the skin. |
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| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 05/08/2012 : 15:40:34
|
I know I'm supposed to accept this condition, but
with this increasing heat, and a flair in my
condition, I feel more helpless than ever.
I went to the doctor today, and was honest. I
told him.."I don't know what to tell you
anymore".
What am I supposed to say?
I confessed to not taking the periodistigmine as
I should, thereby rendering me disgusted with
myself.
I'm not consistant with anything except seroquel, because
I have to sleep.
I'm so fed up with this illness. It's hard to
make sense of it, and it interferes with
everything that I want to do.
It's such an odd thing to brush my teeth
and have my arm ache and burn as though
I where lifting weights or something...how
Oh how I do get so tired of it.
No, I haven't accepted it, and if I could
cry right now, I would. But the house
needs cleaning, the laundry done, and
dinner cooked...crying isn't going to get
me anywhere.
I have to keep moving forward.
Ugg, I'm so tired..just spent.
I promised the doctor that I would stay on
the periodistigmine for two months consistantly.
I'll keep that promise.
I need to stop smoking and caffiene, because
it exasterbates this condition, it
really does.
I feel so stuck..but I know it's just a feeling, one
that will pass.
Just having a hard day..and pretty down on
myself for not being more responsible
for my health.
As usual, it's my health, my life, and
my decisions that will determine my measure
of success in coping well with this illness.
Dosage of quells upped..and more brain cells
fried..but, I HAVE to sleep.
I haven't been in the hospital since I've
been on them..and I suppose, I should
consider this one measure of success.
W...he's so set in his ways..and wants what
he wants when it comes to nutrition.
I discussed cutting down on meat, and adding
more fruits and vegetables.
He listens..but asked me if I intended on
killing him...huh..cripes.
I live day to day..wondering when he's going
to have another stroke, or a heart attack.
Morbid obesity...and there's nothing
that I can do..not a damned thing.
Life..what the hell is this thing called
life? I chuckle...answer: The result
of all my decisions combined.
I have to start making better ones, whether
that man likes it or not..ones that
benefit both of us.
I can't stand staying like this..and the thought
that I'm shooting myself in the foot
is getting to me.
Uuuuggg.
The true person lies beneath the skin. |
|
| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 05/17/2012 : 12:34:32
|
I'm not afraid of what this illness can do.
I'm not afraid, because I have a
tumor on my thymus.
I have the pyridostigmine, and it gives me
a measure of safety.
Maybe a lot of people would be afraid, thinking
they could go into a respiratory crisis.
But it never enters my mind.
If something like this ever happened, I
know I would get through it, it's not
a concern.
Immediate crisis is obvious, and the
way to deal with it...is obvious..go to
the hospital until I'm better.
The most difficult part of having MG, if
that's what it is...is living with
it..day to day.
It's this day to day struggle that can really
wear on me..and effect my moods.
I wonder if the meds. for being bipolar
have caused the MG..I can't help but
wonder.
But this much I know, the bp..untreated, is
much more dangerous than the MG.
So..I continue with the meds, regardless
of their effects.
Day to day living, minute to minute, hour to
hour, day to day...month to month.
This is where the true battle is for me.
How will I let myself "think" about this.
What are the pro's..the con's?
What can I do for myself..what can't I do?
I'm not sure yet...this is all relatively
new to me.
My thinking has a clear and distinct effect
on my mood.
And my moods, have a measurable effect
on my physical strength.
Some doctors would say this is laughable.
But it's not...I live with it everyday, and
know my body this well.
I like what one doctor said...the body and
mind work like a symphony.
I think so too. It's easy to feed my body
healthier foods..but then, why would
I turn around..and feed my mind poison
by remaining angry...and focusing on
negative things that I can't control?
This is exactly what I've been doing.
It's all becoming clear..the past is gone.
Tomorrow is not here yet and can't be
effected.
It's only today, that counts, and what
I think about today, and how I allow
myself to react to the world around me.
Hope, love, peace, mercy...and a clear
understanding that we are all only
human.
It's such a good and wonderful reason
to just let it all go.
I'll do what I can do..in my life, and that
has to be enough..I'm only human too.
My heart feels better.
The true person lies beneath the skin. |
|
| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 05/17/2012 : 18:07:55
|
The kitchen cleaned, floor cleaned..but I
haven't yet vacummed.
I do a little, get weak, and then rest a
little.
It's strange, even to me, to function this
way...but, it works..throughout the day, I
manage to get things done.
I think the hardest part is guilt.
I'll tell W..I had a hard day..so couldn't
do this, or that.
I guess I'm trying to get him to understand
that it's not "intentional".
He knows this..but I still try to explain
sometimes. No benefit in guilt..when I'm
doing the best I can.
On the plus side, I've learned that everything
doesn't have to be spic and span all
the time.
I've never minded a little clutter and never
wanted everything in it's perfect place.
But I do like to know, that things
are disinfected.
I don't mind germs..but don't want the places
that have bad germs to be dirty.
My arms are weak..uncomfortable.
I tell myself..it's OK.
I may need higher doses of the mg drug.
I found out today that it comes in an
extended form..and next time I go
to the doctor, I'll mention it.
It makes me nauseous..and a bit sweaty.
The muscle twitches don't bother me, I get
those either way.
When I get this weak..it's hard to know
if the med. is working or not.
I can only say...no big improvement yet, although
I am able to get things done.
I've had days..where I couldn't, maybe
I should consider this an improvement.
This has been going on for quite awhile, I
just muddled through it. Putting a name
to it..doesn't change what I live with
day to day.
But maybe it means that this med. will work
at higher doses..if this is indeed
MG.
I'm still not convinced.
I was the same way when diagnosed with BP.
That didn't set too well and it took me
forever to accept it..and get on a regular
med. regime.
The things that bother me the most:
Being too weak to pet my animals when they need it.
Not being able to clean the house all at once.
Not being able to hike very far.
Not being able to stay in the heat for too
long.
Getting weak in a group of people or
at the store.
Hearning someone tell me to "put that
down" or try to prevent me
from doing something I want to do (If
I want to do something, let me).
The worst thing, is not knowing what to
expect.
Not being able to plan for the future.
I guess I can consider this an uphill battle.
Or, I can accept it..and be happy for
facing the small challenges everyday.
I can be happy, when I'm able to
keep myself in a stable mood, and be happy.
I've learned..from myself, that it's not
important to be encouraged everday by
W. Honestly, that would get old and
irritating.
It's important to be accepted, to know
that he accepts me just the way I am.
It seems that he does a good job of it.
He has his flaws that can irritate me
to no end..but when it comes to
my illnesses..he has the patience of
Job. This is what matters too me most.
Put into perspective, his untidyness
and other things that bother me, seem
very insignificant.
If I have a bad day and he pushes me when
I'm already against the wall, I can
sometimes snap at him.
But, I always apologize..and really mean it.
All in all, it's OK with us.
I can't know the future, but from day to
day, we do pretty well.
If this isn't something to be happy and
thankful about, I don't know what is.
I honestly don't know what will happen
to me in the future...blurry vision, neuropathy.
It is worrisome..but not to a great degree.
My biggest fear, is not accepting this
and not learning to be happy.
Life is too short.
I've learned that it's not about what I
can or can't do with my body..it's
what I do with my mind that
matters most.
Today is such a pretty day, and hopefully
W will be home soon.
I'll cook dinner..and relax with him
and watch American Idol.
And..sunset..my favorite time of day.
No more struggling..the day will
be done, and I'll have done what I
could.
That's always enough, I'm learning.
The true person lies beneath the skin. |
|
| parrotputz
Amazing Member (1000+ posts)
1521 Posts
Gratitude: 1055
|
Posted - 05/17/2012 : 18:57:38
|
Lean forearms on the desk, and type. It
prevents uncomfortable weakness in the
back of my arms.
You know, I don't do myself any favors.
I go to the doctor, and he wants to
know about the symptoms..of course.
But this is so hard for me to describe.
I try to pay more attention, so as to
have something to report.
But I feel that concentrating too much on
the symptoms can also effect my
mind, and if I overthink it..I'll end
up depressed and feeling life
has delt me unfairly.
For me, it's better just to go forward and
see what I can do for the day, ignoring
the rest.
Still, I'm trying to be more specific with
him.
I go to MG forums and read about other people
who have this.
It all sounds so familiar, but then again, all
neuromuscular conditions have symptoms that
overlap and are very similiar..who knows.
Only the progression of symtoms will give
a true an accurate view of what this
really is.
My attention span and the way I relate are
also effected by this illness.
When a person is very weak..they have no
energy to "beat around the bush".
It's a matter of getting down to it
very quickly.
Passive aggression no longer works for
W, because I'll simply ignore it.
I don't have energy to respond sometimes.
I guess illness does change people.
But, I'm determined..even on my worst days
when I feel like I've had enough, there's that
little part of me that knows, I hate
staying still for too long.
The next day, after I've rested, I'm up
and at it again.
There are people that will say..no, no, don't
lift heavy things, or don't overdo it.
Well, I'm here to tell you, as someone that's
already had to do physical rehab once, that
once you let up off yourself and
start taking it too easy...you'll end up
in a quandry.
I don't listen to that..I lift as much as
I can, with proper form, and I do push myself.
Muscle strength is important, and so
is stamina.
You can't and won't have strength if you
can't get up..a person needs to keep going
and keep their strength up as best
they can.
Ya, I'll give out and sit there like a
rag doll...and feel awful, but for those few
minutes that I can scrub the cage, or
carry in the groceries, or do whatever anyone
else does...I'm doing myself a huge
service in the long run.
I've learned the hard way, that being too
easy on myself will land me back at
physical rehab..and it wasn't any fun
at all..ouch.
This is important for me mentally, to know
that I'm trying..whatever it is..I'm still
trying. I think it's respectful to
other people around me...that they
see me trying. It let's them know that
even though I have illnesses, I'm
taking them into account, and care
about how they feel.
I care when W comes home to a dirty house, I
care if his dinner is cooked or not.
I care that his laundry is done.
If I can do it..then I'm going to, one spurt
at a time.
I will never know, unless I try.
If I'm that certain of who I am, and what my
limitations are..then I'll never
be anything more than that.
No, I'll keep pushing and give myself room
for change.
I don't know if my body will give out or
not, but I do know that continuing to try, makes
me feel much better mentally.
If it gets to the point when I can't go anymore, then
fine. I'll deal with it when it comes.
That may never happen, so I'll keep pushing.
It's all I've got.
The true person lies beneath the skin. |
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Myasthenia Gravis and BP
