[Diabetes-talk] Emotions
Mike Freeman
k7uij at panix.com
Thu Nov 6 06:21:41 UTC 2008
Of course it's all right to complain and moan and groan and bitch and
vent. After all, you're only human. Diabetes is one of those diseases
that, if handled correctly, doesn't have to be considered
overly-burdensome (although, like blindness, it is a damned nuisance and
can never be reduced to a nullity). At the same time, though, as you
know and fear, if untreated, diabetes can lead to complications and,
sooner or later, to severe illness or death. So your fear and even your
wish to take a trip down that great African river, Denial, is certainly
understanding and, if not carried to an extreme, even healthy.
Where we all get into trouble is when we seek to make that sojourn into
a year's sebatical, a four-year course of study or even long-term stay
abroad! That way lies future trouble.
As you say, though, the problem is that you don't feel ill so it's
devilishly hard to convince yourself that you really have a disease --
one that, if left untreated, can be a royal pain-in-the-posterior!
I am not really the person to advise you on this as, for all intents and
purposes, I went crashing into diabetes. It's kind of hard to ignore a
disease when you land in the hospital darn near unconscious! It tends
(after one's blood glucose is more-or-less back in control) to
concentrate the mind wonderfully! (grin)
But know this: the fear of the lancet (that's the thing you stick
yourself with) is far, far worse than the actual finger-stick itself. In
fact, I almost wrather have the sting; that way, I know I've penetrated
deeply enough to get some blood flowing (let's hear it for Raynaud's
Symdrome!). But that's hard to tell someone when s/he isn't used to it.
What got me was not so much the finger-sticking but the fact that I had
to get over the conditioning that taking a blood sample was inherently
messy. You know how if you cut your finger, everyone around you runs
around like chickens with their heads cut off trying to find a bandade!
Well, it's hard to contemplate that one is deliberately making oneself
bleed. But I got over it pretty quickly since I realized I had no
choice, presuming I wished to live a healthy life.
As I've said, read Gretchen Becker's book and watch the videos whose
links I've sent you.
In a way, it's like blindness: talking about it and confronting it makes
it at least less mysterious.
In any event, everyone here is ready to help you!
One story about my hospitalization that might amuse you and then I'll
head for the sack: when I was brought in via ambulance almost
unconscious, an ophthalmologist was looking at my eyes, trying to see, I
suppose, if I'd gone blind from diabetic retinopathy. I was still with
it enough to tell him - he must have been twenty years younger than was
I -- "Please tell me if I've got retinopathy in that eye. Because if I
do, I'm in a world of hurt because it's a silicone implant!" Whereupon
he *jumped* back, totally taken aback, knowing he'd been had while I
roared with laughter. I don't think he expected a semi-conscious
gentleman to make him look silly! Damn, it was great!
Anyway, cry and rant and rave all you wish. That African river, Denial,
looks mighty nice now. But the scenerygets pretty shabby later.
Hang in there!
Mike
----- Original Message -----
From: "K C" <kcc86 at hotmail.com>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Wednesday, November 05, 2008 7:28 PM
Subject: Re: [Diabetes-talk] Emotions
I'm writing this strictly off the cuff, so please forgive me if I'm just
complaining here.
This week, my first, I just don't want to stick myself. I don't know
anything, beyond the huge amount of support I've gotten from this list,
about controlling anything. I don't have any symptoms, nothing to base
being in, or out of control on. This week, I don't want to hear how
because
my number is a mere 135, how it isn't any big deal. Then in the next
breath, how I have to learn to consciously cause myself pain, put my
blood
into a meter, and interpret numbers I don't even understand.
I was talking with a dear friend earlier this evening, and I tried to
explain to him that in most cases you get time to deny, cry, scream, and
then accept the situation if you choose to. After all, not choosing to
use
a Cane because you don't want to admit going blind may cause you
personal
pain, but you're not likely to get hit by the proverbial car. But in
this
case, someone says you have Diabetes, so you've then been hit by the
car,
and you have to get up, and do something about it, manage your injuries
right now! This week I'm mixed between wanting to learn how to use the
meter, start my medication, and to just cancel the order all together.
This
disease is an unknown quantity, and this week I want to keep it that
way.
But I can't.
I hope it is all right for me to vent this way. You all can let me know
if
it isn't..
K
----- Original Message -----
From: "Ed Bryant" <ebryant at socket.net>
To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
Sent: Wednesday, November 05, 2008 11:31 AM
Subject: [Diabetes-talk] Emotions
> Hi Kijuana,
> As I promised, the following is some information about emotions.
> In
> fact, this info is part of a story called "Emotions", which appeared
> in
> Voice of the Diabetic sometime back.
> If you have questions, please feel free to ask.
>
> Regards,
> Ed Bryant
> Understandably, most diabetes education materials focus on the
> physical
> aspects of the disease. This is appropriate. But the common emotional
> ramifications of diabetes need to be taken into account. An
> individual's
> emotional state may determine whether he/she prevails, or is felled by
> circumstances.
>
>
>
> Anger
>
> "Why ME?" We don't know what causes diabetes. Although we can
> manipulate
> statistics and use them to make predictions, we can't tell why a given
> individual gets diabetes, or any of its ramifications. And tight
> control
> helps, but it is no panacea.
>
> Folks used to believe that disability was the result of defective
> character. If you developed a disease, you had brought it on yourself;
> you
> were a "failure." We know better, but too many of us still judge
> ourselves
> harshly, blaming ourselves for "being weak." Diabetes is not a sign of
> weakness.
>
> "What did I do to deserve this?" Nobody gets diabetes, or
> ramifications,
> because they "deserve them." We don't know why one person gets it, and
> another does not. We have to do the best we can. Diabetes can be nasty
> and
> unpleasant, but it is not "diabolical." It is not a punishment.
>
>
>
> Denial
>
> "It will never happen to ME!" Social workers and psychologists are
> very
> familiar with the problem of denial, the conviction that in spite of
> the
> facts, the rules do not apply in this particular case. The
> ramifications
> of diabetes do not manifest immediately, but the more time spent with
> high
> blood sugars, the greater the likelihood of future eye, kidney, and
> nervous system complications. The diabetic who seeks to prove that he
> or
> she is "exempt," and "gets away with it," short term, is only
> increasing
> the likelihood of down-the-line problems. The literature is full of
> stories by folks who were "non-compliant" in their youth, but saw the
> error of their ways about the time their vision began to fail. Denial
> is a
> common problem, and one that should be addressed right along with the
> need
> for conscientious self-management.
>
> "NO! I'm not BLIND!" Sight loss brings its own denial. There are
> people
> who won't use their canes, or learn Braille, or even stop driving,
> because
> they cannot admit they are going blind. Some delay learning adaptive
> skills with, "It's only temporary; I'm sure my sight will come back!"
>
>
>
> Fear
>
> "What am I going to do? I won't be able to..." While some folks deny
> they'll ever be affected, others swing to the opposite extreme. These
> diabetics pay close attention, read the reports, and work diligently,
> but
> for them, there are demons under the bed, and every bullet has their
> name
> on it. Too many folks are convinced that a diagnosis of diabetes, or
> the
> need to start injecting insulin, or blindness, or kidney failure, or
> any
> of the other possible complications, means the cessation of life as
> they
> know it.
>
> It doesn't. With proper adaptive equipment and training, blind
> diabetics,
> those losing vision, even those coping with multiple ramifications,
> such
> as blindness, amputation, and kidney failure, can maintain or recover
> independence, and remain (or become!) fully productive participants in
> mainstream society. Fear, or the use of fear to encourage diligent
> compliance, is counter-productive, as we shall see below.
>
>
>
> Burnout
>
> "I'm tired of it!" Diabetes self-management is a discipline, seven
> days a
> week, from now until doomsday. There are no reprieves, no opportunity
> to
> take breaks, and short of a pancreas transplant, there is yet no cure.
> There is only the routine, day after day after day.
>
> Some folks thrive. Presented with the facts, the need for multiple
> monitoring and insulin injections, one young man said, "Of course I
> will!
> I want to stay healthy as long as possible!" He was, and is, ready.
> Others
> find the prospects daunting.
>
> A lifetime of dietary restrictions, regular exercise, blood glucose
> testing, and multiple injections or oral medications can become
> wearing,
> especially after a number of years with the condition. Some folks get
> tired of it; others come to hate "doing it because they must." Still
> others stop believing their own welfare is "worth the fuss." This is
> "burnout," psychological rebellion against one's duties.
>
> When burnout leads to non-compliance, it is a recipe for trouble. Why
> do
> some folks "burnout" and not others?
>
> The answer is attitude. The folks who thrive, who make the best of a
> less
> than perfect situation, are like savvy poker players who, dealt a
> doubtful
> hand, play it for all it's worth. Often these folks outperform the
> ones
> holding the aces! It's not the cards you're dealt; it's how you play
> the
> game.
>
> "Positive attitude" can mean so many different things, but here it
> means a
> wholehearted belief in one's own capacities, and determination to
> overcome
> all obstacles, regardless of how long it takes. If you don't believe
> in
> yourself, even the small hills can look impassable.
>
>
>
> Loss of independence
>
> "How can I face my friends? How can I get anything done? I can't DO
> anything!" Too many folks respond to disability, or other trauma, with
> the
> "wounded animal response"-flight to solitude, to "lick one's wounds."
> Up
> to a point, this is part of the grieving process, the mourning for
> what
> must be let go. When it passes, rehabilitation can begin.
>
> But some folks "get stuck" there. Some independent, self-reliant
> people,
> high achievers, can be more traumatized by their own "incapacity" than
> by
> their actual physical loss. The belief: "I have lost something, and am
> now
> less than I was," discourages action. This can occur with most any
> incapacity, but is not uncommon in cases of sight loss.
>
> An adult type 1 diabetic, for example, may have been self-managing for
> 15
> years or more, before retinopathy put an end to a sight-based
> lifestyle.
> Some folks, with positive attitude, good instruction and proper
> adaptive
> equipment, make a smooth transition. Others wilt.
>
> It's a question of attitude again, so many times. An individual is
> accustomed to being in charge, to caring for self and others, and to
> being
> "a productive member of society." In his or her mind, loss of sight
> means
> the end of their capacity to continue doing so. Feeling diminished,
> feeling ashamed, the individual withdraws from society, and stays "out
> of
> circulation." Belief in his/her incapacity has become a
> self-fulfilling
> prophecy.
>
> These people are not lazy. They are not "slackers," taking a long
> vacation
> from responsibility. They are in emotional agony, grieving for losses
> they
> don't know how to replace. These people need to be shown their
> options.
> They need to hear of (or from!) others like themselves, who have
> looked
> the demon of self-doubt in the eye and moved forward anyhow. They need
> support groups and rehabilitation professionals who will respect their
> self-doubts-and then show them how to overcome them. Some might
> declare,
> "You can't teach attitude!" but what you can do is show such a person
> their options, show them others who have "done it themselves," and
> then
> get out of the way.
>
>
>
> The Cure
>
> Nothing about diabetes, or blindness, or any other disability,
> diminishes
> a person's human-ness. Loss of sight, or of a limb, or of mobility and
> independence, does not make one "incomplete." There are no
> "part-people"
> out there-we're ALL fully complete, real people.
>
> But it hurts to have to give something up. We are not oxen, facing our
> traumas with placid equanimity. Fear and pain are perfectly logical
> responses. Some folks will pass smoothly through the stages of grief,
> and
> be ready to learn the necessary adaptive skills. Most will need the
> support of their fellows and the positive examples of their
> predecessors,
> and will need to have their feelings validated. Passing this hurdle,
> they
> are ready for, and fully capable of, independent self-management and
> full
> participation in the mainstream.
>
> The presence of emotional issues is not a sign of weakness, but of
> humanity. Any holistic approach to health takes a person's
> mental/emotional state into account, right along with their specific
> physical ramifications. We are individuals, and we heal in our own
> way.
>
>
> ----- Original Message -----
> From: "K C" <kcc86 at hotmail.com>
> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
> Sent: Tuesday, November 04, 2008 4:23 AM
> Subject: Re: [Diabetes-talk] I'm a silent Diabetic
>
>
>> Thank you for the welcome. Actually I have only just gotten
>> information
>> about even ordering a meter yesterday. My state rehab is
>> recommending
>> the Prodigy auto code meter? What is the difference between that
>> one,
>> and the voice? I receive Medicate, and Medicare, all parts. In
>> general,
>> can you get new testing strips for these special meters at your local
>> pharmacy, or do you have to order them always from Prodigy. And
>> lastly
>> does your list offer emotional support? I'm still in shock, and am
>> scared to death... Before last Thursday I didn't even know I had
>> this.
>> Thank you all.
>> Kijuana
>>
>>
>> ----- Original Message -----
>> From: "Ed Bryant" <ebryant at socket.net>
>> To: "Diabetes Talk for the Blind" <diabetes-talk at nfbnet.org>
>> Sent: Monday, November 03, 2008 3:42 PM
>> Subject: Re: [Diabetes-talk] I'm a silent Diabetic
>>
>>
>>> Hi Kijuana,
>>> I am glad you have joined our Diabetes talk list. There are
>>> probably
>>> several ways we can assist you, but first it sounds like your blood
>>> sugars are too high, so that should be an immediate goal to get the
>>> sugars down.
>>> Your doctor may have already had you do a lab called hemoglobin
>>> A1C,
>>> which gives you your average blood sugar for a two or three month
>>> period.
>>> It sounds like you are testing your blood glucose levels, but
>>> there
>>> is a fairly new blood glucose monitor out, which is pretty easy to
>>> use
>>> for someone who is blind or has low vision. It is called the
>>> Prodigy
>>> Voice and can be ordered from:
>>> Homecare Supply of America
>>>
>>> Big Sandy, TX
>>>
>>> 800-333-1412
>>>
>>> Meter: $89.95
>>>
>>> Container of 50 strips: $21.95
>>>
>>> If you have Medicare they will pay for the meter and a few
>>> strips,
>>> but they will only purchase you a new meter, I believe, every three
>>> years.
>>>
>>> If you have Medicaid, they will help with a glucose meter, but
>>> they
>>> can be difficult to work with. They are run state by state while
>>> Medicare is nation wide.
>>>
>>> If you need to use Medicaid, please let us know, and I am sure
>>> you
>>> will receive help from this list.
>>>
>>>
>>>
>>> Regards,
>>>
>>> Ed Bryant
>>>
>>> ----- Original Message -----
>>> From: "K C" <kcc86 at hotmail.com>
>>> To: <diabetes-talk at nfbnet.org>
>>> Sent: Monday, November 03, 2008 9:12 AM
>>> Subject: [Diabetes-talk] I'm a silent Diabetic
>>>
>>>
>>>> Hello, everyone. My name is Kijuana.
>>>> On Thursday the 30th of October I was diagnosed with Diabetes after
>>>> Uterine surgery on the 23rd of October. I had no idea I had it.
>>>>
>>>> I'm so scared! I have never had to stick myself to test my blood
>>>> sugar
>>>> or
>>>> anything else. I know a little about it because I have had
>>>> personal
>>>> friends
>>>> who have
>>>> suffered major complications from this disease, and some of them
>>>> have
>>>> died.
>>>> Logically I know it is something people live with, and control
>>>> everyday. I
>>>> also understand that it is a very common illness. It's just that
>>>> it
>>>> has
>>>> never been a part of my daily life.
>>>>
>>>> I don't know how to act, or react now. Because I have no symptoms
>>>> I
>>>> don't
>>>> know how to eat differently or anything else. Over the past few
>>>> days I
>>>> have
>>>> continued to do like I always have, but the numbers on the blood
>>>> tests
>>>> say
>>>> different. Its silence scares me more than if I had some weird
>>>> symptoms,
>>>> went to my Doctor, and was diagnosed then.
>>>>
>>>> How do you deal
>>>> with the days, weeks, and months after diagnoses emotionally?
>>>> They'll
>>>> be a
>>>> lot of education I'll get in the coming weeks on diet, life style
>>>> changes,
>>>> etc. But what I really need right now is those who're living with
>>>> this
>>>> disease to share their experiences with me so I can put my feet on
>>>> some
>>>> kind
>>>> of ground. Thank you for reading all this. I feel totally
>>>> disoriented. My
>>>> state services for the blind leave a lot to be desired, so my
>>>> councilor
>>>> doesn't even know where to begin as far as purchasing a meter,
>>>> testing
>>>> supplies, etc. Any help will really be appreciated.
>>>> Kijuana
>>>>
>>>>
>>>
>>>
>>> --------------------------------------------------------------------------------
>>>
>>>
>>>> _______________________________________________
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>>>>
>>>
>>>
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>>
>>
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>>
>>
>
>
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