Re: Wizard of Oz

[Guest guest]

>So, what activities are the rest of you involved in? How do you

>get out of the rut of just staying home and giving in to the pain?

>What have you learned about pacing yourself so you can participate

>without becoming overcome with fatigue?

I'm involved in Boy Scouts. I teach Pioneering. It's the building of things

using just rope and logs or spars. I also teach ropes and knots. I am also the

Advisor to the youth representative in our troop from the Order of the Arrow.

The OA is like a Scouting Honor Society. I also have just acquired a purebred

Australian Cattle Dog (aka Blue Heeler). He's about 18 months old

He's very pretty and super smart and super duper fast! I play ball and frisbee

with him. I also hug and snuggle with him. He's very affectionate.

I've learned what my limits are about being active. I can go very intensely for

about 6 months and then I have to cut way back on my extra curricular stuff. I

still work 2 jobs so the extra stuff can be very draining. I make choices on the

things I decide to do. With Scouts, I do an activity or project until it's not

fun any more. When I get to that point I resign and pass it to someone with a

fresh look and energy. I play with my dog about 2 hours a day of making him

exercise hard. In between the play times, I train and take breaks to praise and

hug.

Doing these activities helps me get out of the house and helps me get out of

myself as I'm doing stuff for others. It helps me forget or dulls the

perceptions of the pain for awhile as I do the activities.

Jami

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[Guest guest]

Thank you Ray for opening up this thread. Isn't he a great moderator,

everyone?

I also moderate an e group mine is for a children's disability. It is

called " Myelin-Mail. " The group has over 100 members and fairly runs

itself but I think I just learned something from Ray about being more

active a moderator. I do have a special needs child and 3 other

children who keep me moving when the neuropathy wants me to quit. The

other major thing in my life is that I want to be a teacher once more.

My career was stifled first by being a male elementary teacher in

provincial New England. Then when my wife left me with the kids, the

youngest then being only 8 months. I know, they need male teacher but

that is because men have been locked out. So I relocated to an area

less governed by bias and I feel I can prove myself and hopefully move

from substitute teacher to regular classroom teacher. If that fails I

have one other ambition which relates to being the parent of a special

needs child and that is I would like to organize similar parents

because there is so much we need to share which no one else can

understand. I don't yet have a clue as to how to achieve that. I do

feel that being mentally engaged moves the blood in the brain away

from areas focused on pain. Al

[Guest guest]

That's a great subject Ray. Of course I know you from RISG.

For the rest of yall. I read, play on the puter of course, read alot, do

needlepoint and other crafts. I love to cook and experiment in the kitchen

alot. . I also keep my 4 month old grandson. Sometimes I set in my chair or

stay in bed all day, like most of yall.

Joy in Dallas

[Guest guest]

Just to let you know Ray that I answered your post, but Yahoo is having fun

again and I lost the whole thing when I hit send. And, I'm not writing it over

right now-maybe later.

Peggy-from CA

Ray in Virginia wrote: Dear Friends,

We often talk only about medications for pain relief and forget

about other things we can do to help us through the pain.

Today is the first day of the rest of my life.......

---------------------------------

[Guest guest]

Congratulations to everyone who has found an outlet and a way to stay

involved. I have several things that work for me, depending on my mood and

condition.

Like Ray, I've long had an interest in gardening. After I could no longer

work full time I started taking some horticulture courses at a local

community college. The courses were just a few hours a week but it was

enough to keep me active and involved with people outside of the family.

I'm considering taking a summer course this year. The instructor I had for

Botany has offered spots in her summer Biology course to people in the Hort

program. She uses the 12-week summer session to cover taxonomy and

identification.

Last summer, I was selected to join the Master Gardener program, which in

Pennsylvania operates through the ative Extension Service and Penn

State University. For me, this is a very good outlet. I can offer as many

hours as I feel capable of giving, and have a wide variety of ways to help

out. Come the start of the growing season, I'll help staff the Horticulture

Hotline, which homeowners can call with plant problems, and I'm helping to

plan and work in a wheelchair garden for patients at the local Veterans

Hospital. There are also some Envirothon programs for school-age children

that I'll be helping with.

With the exception of the Envirothons, the projects I'm involved in are

long-term and have a good number of other Master Gardeners helping out. If

I'm feeling particularly bad I can sit out a day at the wheelchair garden

and everything with the hotline is done sitting down, so that should be OK.

I can also hang back from answering phones if I'm not feeling well and

handle the research on problems that have been called in.

Outside of that, I teach computer use one morning a week at the retirement

community where my wife works (and my mother lives). My wife had started a

computer center for residents last spring. I started out training the

residents who had volunteered to tutor other residents and I currently have

two " students. " My oldest is 94.

Then there's my workshop. I love woodworking and cars as much as I do

gardening. I just finished two small projects that I'm donating to a local

charity auction for Developmental and Disability Services. This is the

second year I'm donating items. In the long term (very, very long term) I

have a car I'm restoring. Fortunately, I had the hardest and heaviest work

done before my condition worsened. That project may be years from

completion, but I work at it as my health permits.

I haven't found the formula to pacing myself either. I take it all in small

bites. I know I can never go too long without wearing myself out.

Ray: Congratulations on your client's garden being in the tour! That must

be a good feeling for you. And to everyone else: Keep up the good work on

whatever you can manage. Sometimes you're at a point where you can't manage

much more than day-to-day existence, but finding other outlets certainly

makes a difference.

Hower

http://home.dejazzd.com/hower

[Guest guest]

On my " BAD " bad days, playing with my dogs, gently, gives me more pain

relief and comfort than any pill, therapy, procedure, or cream ever will.

On my worst days, my " baby " Rottweiler, Ursa, will come up and very gently

place herself in my lap. By baby I mean all 110 lbs of her, but she'll take

the time and care to position herself just so, as not to hurt me. She'll

stare into my eyes, concern radiating from her whole being, and she'll start

to groom me.

Usually it makes me just bust out crying. LOL. Which actually is a good

thing.

Usually on these days I'm stuck propped in bed at a certain angle-trying not

to freak out. My dogs are incredibly empathic, and they know when I'm sick

and when I'm in pain. They react accordingly. They'll surround me on every

side, careful not to bump me, or lie on me. There's never any scuffles or

playing on those days. They're incredibly still, and all centered on me.

I'll put my arms around Ursa and just hold on, and for that moment

everything gets a little better. The pain doesn't go away, but the comfort

she provides overwhelms it. Just having these caring, loving animals come up

to me, genuinely concerned for my welfare and well-being, and give me

unconditional love and licks makes it all better. : )

My dogs are all large, LARGE dogs- even the smallest of them is.

I have three, or what I refer to as " the pack " . They consist of Ursa, pure

Rottweiler, who I told you about already... Deke, 1/4 Pit Bull 3/4 Black

Lab- stupid affectionate and goony as they come... and Missy, who is old and

arthritic, and gripey as I am ! LOL. She has her " bad days " too !

Having three large dogs can be a challenge, even ones as well-behaved and

fully trained as mine. I used to be a trainer of companion dogs for the

elderly and disabled. Mine are all " gentled " , because I'm disabled. That

fortuitous happenstance that I knew how to do that is not lost on me. : )

My dogs can be a headache sometimes, and their upkeep is expensive,

time-consuming, and physically challenging. However the simple fact that I

have to get up and outta bed every single morning because they MUST be let

outside is good for me. The fact that I have to feed them and care for them

every day keeps me on a regular schedule. And, most rewarding to me is that

whenever I feel like it's all too much and I'm gonna lose it, they sense

that and suddenly I'm surrounded by this mountain of fur and love... and, of

course, a lot of licks. : D

Robbie in FL, moderator chronic_pain.

AS/RS (ReA) 18 + years.

feralelf@...

[Guest guest]

I am in a rut & do not go anywhere or do

anything, but that is more because of the brain

damage & memory impairment than the pain. To do

anything much, I require a keeper / driver.

I do know a thing or three about pain control

without meds because I had none for so long.

The most useful thing? I meditate. I

contemplate. I pray. During the day, these work

very well. Because I have well-developed

conscious controls, the worst times for me are

usually at night when I over-did during the day.

Once I go to sleep, the controls go off-line. I

have been using these techniques for over 30

years.

The easiest to do? Using different musical &

environmental tapes & CDs, I have trained myself

to relax completely, to become fully alert &

aware and to fall deeply asleep in a matter of

minutes. This has been a great help. I have

worn out several copies of the tape which I

formerly used as a sleep cue; I had to change the

tape cue when I was unable to get the original

tape any more. I have been using these

techniques for over 25 years. I won't go near an

invasive procedure without my portable player &

headphones.

I would be in far worse condition vis a vis my

pain if it were not for these techniques. They

cannot do everything. If the pain is already

dialed in, they cannot do too much. But they

make an appreciable difference

I have my two older grandsons every school day

afternoon until 5 pm, the elder from noon & the

younger from 3. I help with their homework & we

play computer games together. The boys keep me

actively involved in the world even if I am

having a Bad Day.

My cats are also involved. When I have a Very

Bad Day, I stay in bed surrounded by 4 cats.

They cry if I need something, they will even

fetch someone to help me, but they will not let

me get up [good kitties]. My kitties help me to

pace myself.

Aubergine, who is going to plug in a relaxation

tape, put on her headphones & veg out

AOL IM: ShadoCrone

MSN MS: Shadow_Crone

YM: shadowcrone

ICQ#: 11443880

Wildly Insightful & Talented Crone with a Harley

-----Original Message-----

Dear Friends,

We often talk only about medications for pain

relief and forget

about other things we can do to help us through

the pain.

[snip]

So, what activities are the rest of you involved

in? How do you

get out of the rut of just staying home and

giving in to the pain?

What have you learned about pacing yourself so

you can participate

without becoming overcome with fatigue? That

last question is

still a challenge for me since the chronic

fatigue attacks come on

suddenly, sometimes without warning. Just jump

right into the

discussion!

Ray in Virginia

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[Guest guest]

Hi Al,

My hat is off to you! I teach in a special education class. The class is a

kinder-garden readiness class and the children have many different

disabilities.

We need more dedicated teachers in our school systems around the country.

In the area that I'm in there is a support group for our parents. They meet

once a month and there is generally a topic that we teachers give information

on. We offer day care for all the children, not only our students but their

siblings. I think we also need a support group for the siblings.

I have a sister that is developmentally delayed and I know that I could have

used something like that. There is still such a sigma placed on special

children and I remember defending my sister and also being embarrassed at the

same time. It's true what you say that the general population doesn't

understand what it's like.

I hope you soon find a school to teach in full time. You will be a credit to

their school!

Kathleen in Calif.

[Guest guest]

Hi,

It's interesting to me that this subject has come up. I have really been

thinking recently that something is missing in my life. Altho I am still

able to work and have a family something is pulling at me. I'm not sure what

it is tho.

I have found that my job really is an outlet for me. I teach developmentally

disabled children in the age group of 4 thru 6. Some days are very

difficult, but for the most part that is where I'm able to over ride my pain

levels and give to someone else. Every step forward is such a gift for these

kids and when they finally accomplish something we have been working on for

some time it brings tears to my eyes.

Other than my work I love to read everything and also do needlepoint and sew.

I make weighted vests for my students and kids in other special needs

classes. These vest help to comfort and stabilize children with

motor/cordination problems and they are also very beneficial for children

with autism.

Generally after work I'm flat out for at least an hour or two. But I'm still

mulling over what this little voice is that keeps whispering there's

something else out there that I'm needed for.

Thanks Ray for this new dialogue!

Kathleen in Calif.