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My book.
"Fascinating" Stephen S. Hall. writer, N.Y.Times magazine. "Hard to put down." A.C.P.A., American Chronic Pain Association.

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Tuesday, August 30, 2011

Abnormality is our normal, or Psychiatry tunes out our reality.

Before the mini-lobotomy that Dr. William Sweet tried to talk me into, "You will still have the pain, you just won't care that you do." he had me evaluated mentally and intellectually.

One of the tests used was the MMPI or Minnesota Multiphasic Personality Inventory*.

A number of these questions cannot be answered the same way by those without pain vs those with chronic intractable pain.

Many docs, psychologists, rehabilitationists and counselors use this test. See how you feel about it. For readers without pain I put the reasonings below the statements for which you had to choose True or False.

"I wake up fresh and rested most mornings.
My daily life is full of things that keep me interested.
I am about as able to work as I ever was.
I work under a great deal of tension.
(Trying to get the work done before the pain becomes too great to continue on.)
I am sure I get a raw deal from life.
(I am in constant chronic intractable pain. What else is it if not a 'raw deal'?)
I am very seldom bothered by constipation.
(If you are takiing narcotics (and some other meds) this is a known side effect.)
I find it hard to keep my mind on a task or job.
(Pain. Meds.)
I am a very sociable person.
(see above.)
Parts of my body often have feelings like burning, tingling, crawling, or like "going to sleep".
(This defines some of the sensations of tn as well as some other pain disorders.)
At times I have very much wanted to leave home.
(Trigeminal neuralgia forces you to stay in much of the time as does many of the pain syndromes. I was virtually housebound for over 10 years, going out only to the bank, grocery, and doctor appointments.)
Much of the time, my head seems to hurt all over.
I am in just as good physical health as most of my friends.
I prefer to pass by school friends, or people I know but have not seen for a long time, unless they speak to me first.
(Many of us do not want to have to deal with the questions of 'what have you been doing.' For me, I did not want to have to answer the additional questions, or deal with the pitying looks, about the facial paralysis.)
I wish I could be as happy as others seem to be.
(We are in pain. Most of us are unhappy about that, and what it has done to our lives.)
Most of the time I feel blue.
(We are in pain. see above.)
I usually feel that life is worthwhile.
(Some of us do not. I was advised at one point, by doctors, including a psychiatrist, that 'rational suicide was acceptable in my case.)
Often I feel as if there is a tight band around my head.
(For trigeminal neuralgia, at least half our heads, unless you have bilateral.)
My speech is the same as always (not faster or slower, no slurring or hoarseness).
(Not once we start on the anticonvulsants, opiates, and other medications prescribed for constant chronic pain.)
My table manners are not quite as good at home as when I am out in company.
(For me, it is hard to eat because of the paralysis and loss of sensation in my mouth. For others, opening their mouths is painful so eating is difficult. At home I can enjoy my food more and worry later about what has fallen out of my mouth. I sure cannot do that when eating out.)
I know who is responsible for most of my troubles.
(Dr. Martinez caused the numbness where there had previously been none.
Dr. Jannetta paralyzed my face. Dr. Wiulson said there was too much scar tissue from Dr. Jannetta's surgery to do what he wanted. My 2 lawyers left me high and dry.).
I believe that my home life is as pleasant as that of most people I know.
I certainly feel useless at times.
The top of my head sometimes feels tender.
(Hello. Did someone say trigeminal neuralgia?)
I do not tire quickly.
My memory seems to be all right.
(Pain and pain medications change this for many of us; from peppy or energetic to zonked and and good memory to fuzzy, cloudy, zonked.)
I can read a long without tiring my eyes.
(This is more specific for those like me whose trigeminal neuralgia effected their eye usage.)
My hands have not become clumsy or awkward.
(This is an issue for many with pain, such as arthritis, etc. The medications can also cause this.)
I have had no difficulty in keeping my balance while walking.
(Again the meds.)
I enjoy many different kinds of play and recreation.
(The pain stops that.)
I frequently find myself worrying about something.
(The next surgery, or that there is no more surgery. The next drug or there is no drug. The next time the pain attacks.)
I have few or no pains. (Obvious)
I have difficulty in starting to do things.
(Meds and pain.)
It does not bother me that I am not better looking.
(This is more specifgic for me and others whose pain/treatments for the pain caused changes to their looks.)
I have numbness in one or more places on my skin.
I have often felt that strangers were looking at me critically.
(Again the paralysis. Others with pain often tell stories of using the handicapped spots (with the appropriate plate or placard)and people yelling at them that they were not disabled and "How dare you park there? -this also happened to me. Because pain is invisible we also get looked at critically by those who refuse to believe that we have pain or cannot do something that we say we cannot do because of the pain.)
Life is a strain for me much of the time.
My parents and family find more fault with me than they should.
(I have heard way too many stories similar to mine where nasty things are said because family refuses to accept the pain/disability.)
I have never been paralyzed or had any unusual weakness of any of my muscles.
Most of the time I wish I were dead.
(Too many of us have expressed this wish, whether an active wish or inactive. Only those who live with constant chronic pain can really understand (and those who have devoted and accepting family) why death is not is not the worst thing that can happen.)
I forget right away what people say to me.
(Again meds but also sometimes the pain is so loud nothing else can get through.)
I usually have to stop and think before I act, even in small matters.
(Meds, Pain.)
Often I cross the street in order not to meet someone I see.
(When the pain is bad it is hard to be a "hail fellow well met.")
I often feel as if things are not real.
(Narcotics will do that to you.)
I get anxious and upset when I have to make a short trip away from home.
(What if the pain gets too bad? What if I forgot/don't have enough medication with me? What if, for those with trigeminal neuralgia - this is definitely how it was with me, someone moves their arm, or takes off a coat, or it gets breezy triggering the pain more? Too many what if's.)
I have more trouble concentrating than others seem to have.
Almost every day something happens to frighten me.
(For me when the t.n. was very bad, anytime a breeze came up, a strand of hair started to fall on my face, someone walked by too closely, the chance something would trigger the pain, was terrifying.)
At parties I am more likely to sit by myself or with just one other person than to join in with the crowd.
(Too many opportunities to increase the pain.)
I have sometimes felt that difficulties were piling up so high that I could not overcome them.
(The pain, the medications, the inability to work causing financial troubles, the loss of friends as they disappearred the more times you say "I'm sorry, I can't.")
I have often met people who were supposed to be experts who were no better than I.
(See Dr. Martinez, Dr. Jannetta, my lawyers.)
Whenever possible I avoid being in a crowd.
(Again, triggers for the pain.)
It makes me nervous when people ask me personal questions.
(It is tiring, hurtful, frustrating to say "pain, pain, pain.")
I do not feel I can plan my own future.
(It si up to the docs, the treatments, the surgeries, the medications.)
I am not happy with myself the way I am.
(Uh. duh.)
I very seldom have spells of the blues.
(see above.)
A windstorm frightens me.
(This is a killer for trigwminal neuralgia, and some other disorders such as some people who have CRSP, complex regional pain syndrome.)
The future is too uncertain for a person to make serious plans.
I have no fear of water.
(That is a killer for those with touch triggers.)
The future seems hopeless to me.
(Until the right doc and the right med/treatment/surgery comes along.)
I can stand as much pain as others can +
(No, I can stand more.)
I spend most of my spare time by myself.
My main goals in life are within my reach.
I am not feeling much pressure or stress these days.
I hate going to doctors, even when I'm sick.
Although I am not happy with my life, there is nothing I can do about it.
(Not depression,true for many of us.)
I am so sick of what I have to do every day that I just want to get out of it all.
(see above.)
I have recently considered killing myself.
(Same as the other questions about suicidal thoughts.)
My life is empty and meaningless.
(see above.)
I find it difficult to hold down a job.
Lately I have thought a lot about killing myself."

It turned out to be a longer list than I expected so I apologize for typos; because "I can read a long without tiring my eyes." - not. Or ending up in severe pain.

The reason I write about this, and will write more on it, is because of the way too many times many pain patients have been told "it is all in your head." or that their pain is psychiatric and not physical, regardless of the physical findings.
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