Re: CBT and Attitude !!

[Guest guest]

>Question: what kind of cognitive statements do you use to endure the almost

unendurable. What so you tell yourself when you wake up (when I sleep) and know

another day of hell awaits. What tricks have you learned to keep going and not

find a bridge.

Hi

Some members find that writing a journal each days helps. They also include

something that are thankful for. It doesn't need to be anything complicated,

perhaps simply that their toast didn't burnt that morning.

It's worth a try.

Kaylene

[Guest guest]

--- " R. " wrote:

>

>> Question: what kind of cognitive statements do you use to endure the almost

unendurable. What so you tell yourself when you wake up (when I sleep) and know

another day of hell awaits. What tricks have you learned to keep going and not

find a bridge.

>

Hi -

I've found that I can't look too far ahead. Looking ahead is overwhelming,

because how can we possibly continue with this for years and years ahead?

Sometimes just looking a week or a month ahead is overwhelming!

So instead you have to learn to really live in the moment and ignore those

thoughts about " how can I possibly do this forever? " You have to find things

that you enjoy, even only if for a moment. Relish the good things - something

as simple as a good cup of coffee, a great sunrise, a beautiful bird song, the

joy of petting your dog, smelling a flower, laughing at a good movie or crying

over a great book - whatever you personally find amazing.

Find hobbies that " take you away " from the pain. I used to be a professional

athlete, and I lost every single hobby and interest I had prior to pain. But I

found new ones. I love to read and am in a book club and love to " window shop "

books online. I also get electronic audio books from my public library for

free, load them on my ipod, and listen to books while soaking in the tub or

lying on ice packs - it helps take my mind off the pain and helps me sleep. I

loved to garden and had a huge vegetable garden and tons of perennials prior to

being injured, and I can't do any of that now, but I can keep violets and

orchids in pots in the house and they give me great joy. I learned to crochet,

and love studying new patterns and choosing colors of yarn. I got a small bird

so that I had something to love and care for - I have to get up every day to

uncover his cage and feed him, and he snuggles with me in bed while I watch tv

and he sings for me. I got a Netflix subscription and love to watch movies and

tv shows on dvd.

As you focus on these little things moment by moment, you realize that time has

passed with you occupied in something that gave you joy for that moment. Those

moments add up, and suddenly you have a life again that you are enjoying DESPITE

the pain.

Also, make sure you have had your depression appropriately treated. Therapy is

critical to learn how to live with pain, but depression causes a chemical change

in the brain and sometimes it takes a chemical approach (anti-depressants) to

help get things back in balance so that you can cope more easily.

One more thing that helps me is to remember that things change. It really isn't

constantly a 10 - it gets better, it gets worse, even if in small increments

throughout the day or across several days. Sometimes it gets considerably

better for periods of time. So you have to learn to change that thought about

" it's at it's absolute worse all the time. " You have to acknowledge the moments

that it improves and relish them.

Also, take control of your pain and your body. It helped me to quit being angry

at my body and treating it like I was in a war against it. Instead, I found

great relief when I finally was able to simply accept the pain and my new

limitations as the reality I now live with. That's NOT the same as giving up. In

fact, it's the complete opposite. It means I'm now in charge. I'm not fighting

anymore, I'm simply in control. That means I do absolutely everything I can to

reduce my pain - including research online, reading books, finding emotional

support, finding the right team of doctors to help treat various aspects of my

health, doing physical therapy, trying new treatments, learning ways of pacing

myself and making smart decisions so that I make things better instead of worse,

learning relaxation techniques, etc etc etc. It takes WORK and it takes months

if not years to get to the best balance for your particular problem, but there

is hope for improvement with each new approach.

You say that your pain can't be treated with meds, but I've never heard of any

pain syndrome that didn't get SOME relief with the right cocktail of medications

combined with other therapies. It takes a lot of trial and error and

experimentation with a doctor who is willing to go the distance with you to find

just the right combination of meds for your situation. Often it takes several

different kinds of meds - combined with other types of therapy such as massage,

physical therapy/exercise, accupuncture, or other medical treatments such as

transdermal electrostimulation or a spinal stimulator, for example (depending on

your condition).

If your doctor is telling you there's no treatment, you need to find another

doctor! For example, for some reason a lot of doctors believe and repeat the

myth that neuropathic pain can't be treated with pain meds, but that's complete

nonsense and I'm living proof of that. Not all meds work for all people equally

well, but there are a lot of options out there that you have to try - and at a

lot of different doses - before you can say that " nothing " works.

And you also must realize that " treatment " does NOT mean " elimination of pain. "

It means that the pain is reduced - no chronic pain is ever completely

eliminated with medication. The goal of medication combined with other

therapies is to bring the pain down to a manageable level - and that can make a

huge difference in quality of life.

And finally, remember that this is a grieving process. Right now you're angry

at what you've lost. That's normal, and part of the process. Allow yourself to

grieve what you've lost, but don't get stuck in that phase. Therapy will help

you work through that grief process. Be open to what you can learn from this

experience - if the therapist isn't helping, then it's the therapist and not

therapy itself that's at fault. Find another one - it took me four tries to find

someone who actually knew what they were talking about when it came to managing

chronic pain, but she was a huge help to me.

There is hope and you can have a life you can enjoy. It may not be the life you

envisioned for yourself, but nobody ever gets that anyway. You just have to

make a new life for yourself with the cards you've been dealt. That's the real

challenge.

Cheryl in AZ

Moderator

[Guest guest]

Dear : (to everyone: this is a bit long winded)

 

You really did ask the million dollar question.  How does one get up every

morning knowing that nothing but pain awaits?  I think that most of us here

struggle with that one every day.  I've had incredibly dark moments.  I had one

today.  I had an appointment with my neurosurgeon after a battery of tests.  The

verdict?  Once again, 'Sorry, there's nothing that we can do but try to manage

your pain'  Then the worst news, 'It will continue to get worse'  Today also

being a very bad pain day. 8+ after my 3rd percocet.

 

But...my husband wheeled me back to the car, we went to Target because they were

having a special deal on Poise Pads (I even got a 5 dollar gift card back for

buying 2 packages).  Then we stopped at Starbucks for my coffee.  Then home.  NO

crying allowed.  We had a nice dinner and then watched TV and played a video

game together. 

 

DON'T GO THERE IN YOUR HEAD!  Yes, I shouted that.  It's the only thing we can

really do to keep from having everything come crashing down.  Don't look down

into the abyss.  It's too easy to fall.  Keep your mind busy.  Dear , I

know so well how easy it is to say that and how hard it is to do.  I struggle

every day not to let myself even think about the supposed 'easy way out' because

I know that even though this is my lot, my life is still a gift.  I don't know

why things have turned out this way.  I used to rant and rail at God and ask

'why me?'  But all that did was make my soul torment as much as my body. 

 

There was this song from the 60's called 'Movin' on.'  The chorus goes:

 

'...I've got no time now, to stop and explain,

I just keep moving, cause it helps to ease the pain "

 

So, there it is.  You get up, and you live because there's nothing else to do. 

As I've writtin before, I try to distract myself with anything I can do with my

limited mobility. I know I go on a lot about books on CD.  If your brain

condition is such that TV is difficult, books on CD might work for you.  I

sometimes have mine turned down so quietly I can hardly hear it, but it's still

enough to distract me from dwelling on things. 

 

Sorry this is so long (to all of you...I am long winded).  Another thing that I

do is try to think of others that are worse off.  I have a cousin that was born

with cerebral palsy.  She has had such a horrible time.  She's had more than 60

surgeries, is totally disabled, and has been in a wheelchair her whole life. 

Then she got breast cancer and had to have a double mastectomy.  She finally

found love and married, but after 15 years together, her husband passed away

this last year.  Yet, she is a positive person.  She has a beautiful spirit. 

She keeps living her life every day as long as she has it.  How can I do less? 

 

- PA

 

 

Mon, 1/3/11, R. wrote:

Question: what kind of cognitive statements do you use to endure the almost

unendurable. What so you tell yourself when you wake up (when I sleep) and know

another day of hell awaits. What tricks have you learned to keep going and not

find a bridge.

thanks for reading

[Guest guest]

Re: Hobbies.. I TOTALLY AGREE!

I used to love to train, ride and care for horses. I had my one for years and my

family breeds Arabs and Part Arabs. I love horses, but these days, it's all I

can do to walk my 75 pound Handicap Assistance dog in training with my power

chair. So, I got involved in Simulated Horse Racing and Pedigree Assignment, and

I have many model horses.

I went back to school too, online, but it keeps me occupied. IF there is

something you enjoy, you can usually find a way to do SOMETHING that is

connected to that beloved hobby, but requires less work. Learn something new

every day!

Don't let the depression make you wear blinders. there ARE positives, you just

have to look past the pain to find it and when you look past the pain you may

find it's not quite as bad as you thought.

Marta

[Guest guest]

, wrote:

> Sorry this is so long (to all of you...I am long winded). Another thing that

I do is try to think of others that are worse off. I have a cousin that was

born with cerebral palsy. She has had such a horrible time. She's had more

than 60 surgeries, is totally disabled, and has been in a wheelchair her whole

life. Then she got breast cancer and had to have a double mastectomy. She

finally found love and married, but after 15 years together, her husband passed

away this last year. Yet, she is a positive person. She has a beautiful

spirit. She keeps living her life every day as long as she has it. How can I

do less?

,

You were not long winded and every word made sense. One of the only times my

husband cried was when the Doctor said the same " The prognosis is not good and

it will only get worse "

He was so used to the energetic person who could withstand any crisis and pain.

It bothers him to see me in bed but I have to sometimes to rest my back.

I worked with students with Cerebral Palsy and you are right, it is a bad

condition to endure. I also when you think of others and do for others, have a

purpose, you can get up and overcome the pain for the day. Thank You for

sharing and I could relate to what you wrote and appreciate it so much.

Bennie

[Guest guest]

, I might have a suggestion that will help some. I have periods of pain

that occur even with pain medication. During these times, it seems like I have

taken nothing.

I know that stress, overdoing it and weather are some of the factors that will

increase mine pain. Over time I have accepted that my pain level will go up

during these occassions. I try not to fight the pain. I believe when you

response to the pain by fighting it and considering it " bad " it causes your body

to react as if there is danger present. This means that your muscles tighten,

heartrate increases, your brain tunnel visions to scan for enviromental

indicators of danger.

What I do, is engage in activities that relax me. I do yoga, relaxation

visualization, or read. One theory is that pain is partial the result of the

build up in toxins due to energy blocks. Our body is unable to effectively move

toxins out of the muscles causing a " sticky gritty " response in " trigger points "

where muscles join/insert to bones. Large muscles then become inflammed and

irritate nerby nerves and nerves that run within the muscles.

To help, I sit with my eyes closed and get into a relaxed state. Then I focus

my attention on the area where the pain is. I see the energy starting to move

upward through my body and our through the top of my head. I envision the

muscles relaxing as the toxins are moved out of the areas.

It has been effective to reduce my pain level by at least 50%. the more you

practice, the easier it is to have a favorable respone.

Also I have learned to accept pain as part of me. I think of it as giving pain

its on little place instead of trying to evict it.

that has helped me be able to have a certain amount of pain exist as " static.

I hoep these ideas will be of some help for you. Is there a specific reason the

doctors are unable to give you any type of medication?

A good site to check out for addition information and support (you can never

have too much) is butyoudon'tlooksick.com

I hope you are able to manage your pain soon. Hugs, Tami

R wrote:

> My therapist has been trying to help me change my thinking about being in

chronic pain - and especially since mine can not be treated with any medication.

[Guest guest]

> R. wrote:

> Question: what kind of cognitive statements do you use to endure the almost

unendurable. What so you tell yourself when you wake up (when I sleep) and know

another day of hell awaits. What tricks have you learned to keep going and not

find a bridge.

,

I have been working with CBT, too. And like you, I have pain that cannot be

treated with medication. Even on good days, there is a constant background

level of pain that never seems to go away. So I have been trying to verbally

rephrase it. It helps me deal with the pain, but it takes a while to remember

to think the new thought.

Instead of saying " My pancreas hurts! " or " My abdomen is being stabbed with a

hot poker! " , I am now saying " My pancreas is letting me it is still there " or

" My abdominal nerves still work. They are sending out a test messages right

now. " Then looking at my abdomen, I say " I receive you loud and clear. " Corny,

yes. But it helps transform pain into neutral sensation.

When I am up there at a 8-10 on the pain scale, instead of saying " My pain is

killing me! " , I try to say " Frack! I am in a ton of pain. But at least I am

not hurting like I did when I was in the hospital in 2008. " or " I am in a bunch

of pain. But at least I am not in the burn ward with third degree burns! "

(Thanks, Lyndi, for that one!)

When I wake in the middle of the night, instead of saying " Darn it! I could not

get a full night's sleep because I hurt too much! " , I now say " Hey! I actually

got some sleep! Maybe later I will be able to get back to sleep after while. Or

take a nap later. " or " Hey, everyone else is asleep, I get to be alone and do

whatever I want. " and go downstairs and have a bowl of ice cream and watch

something really trashy.

When I am having a bad day, I am sick and I hurt, instead of saying " I am

completely miserable and depressed. I am sick and I hurt like heck. " , I say

" Wow! I am having a really bad day. That is okay. Everyone had bad days.

Maybe tomorrow will be better " .

When I am having a really bad couple of weeks, instead of saying " Things will

never get better. There is no cure. The pain will always be here. There is no

point in going on. " , I am supposed to say " That is not true. Things will get

better. I will figure out how to move on. " But there are times that I just

cannot do it. I know what to say, but I just cannot bring myself to say it. I

get so miserable that I just cry. So since I cannot say it, I have my husband

or friends say it for me. Sometimes it helps to have a co-conspirator to remind

me that I am not completely useless and if things will ever get better.

When I think about me not being employed, instead of saying to myself " I will

never be able to work again. I will never be able to do anything meaningful

again. " , I say (and this is a long statement: " So what if I will never be able

to return to the workforce full time or even part time. I still have at least

part of my brain. I used to be smart. I might be at least half smart these

days. That means that I will be able to figure out something to do with myself.

Even if I have no clue what that something is, now is the time to play around

with things and find out who I now am. I need to see where my strengths might

be, what my new interests are and how I can marry them to my physical and mental

limitations. It may take a long time to do that discovery, but at least I have

a game plan for getting my act together. I WILL find something meaningful to

do. "

I am by nature an analytical person. I do not control my emotions well. So,

for me, it helps to include an exclamatory word. It is something in which I can

put some emotion, before moving on to the thought process. I have a whole

collection of these exclamatory words: frack, wow, gee, golly gee willickars

(sp?), hey, Saints be Blessed, well I never, oh my giddy aunt, chocolate covered

haystacks, holy cow, etc. Also, I can swear like a drunken sailor!

For me, CBT is a way to help remain calm despite being in physical pain. It is

bad enough to be in pain. But when we are upset about the pain, then we add

additional stress on ourselves physically and emotionally. Our blood pressure

goes up, our muscles tense up, the adrenalin starts flowing, and so on. All

those things can cause more pain. So then not only are we in pain from our

conditions, but we have these other things adding pain and distress to

ourselves. Why do that to yourself? The pain is going to be there anyway. The

best and sometimes the only way is relax and be calm.

Breathe deeply,