L.A.P.S. (lie and be still) Day

Here is a place for social chats with special attention to support and non medical discussions. We need a place to chill out, where we can distract from our pain and enjoy lighter moments, share a joke or funny moment with others.
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kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

L.A.P.S. (lie and be still) Day

Post by kat »

All the other conditions seem to have a day, fundraisers or awareness things surrounding them. Alzheimer, Cancer, Heart disease and so on. We should have a day too. I would love to say we are all able and willing to get together and have a conference at some spa type place, but let's be serious. Many of us are out of money, work and are slowly going out of our minds. We will have a mental get together that involves laying flat and being very still. That is what we do best right? We should be sponsored by blanket or pillow companies.

What day should we declare L.A.P.S. day?
Should we decorate our bed, couch or whatever we are laying on day in and day out?
Post pictures of the best decorated resting area?
Create pictures with the many multi-colored pills we are all taking?
What ideas do you have?

My body is broken, but my spirit and heart are strong.
I'm trying to be positive. This is my life and I want to find some joy and silliness in it.

Let me know what you think.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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Amanda
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Joined: Thu Sep 02, 2010 2:33 pm
Location: Dublin, Ireland
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Re: L.A.P.S. (lie and be still) Day

Post by Amanda »

Kat

What a great idea.....as most disabled centres Worldwide only allow for disabled people who can sit in wheelchairs etc.
I had this problem a while ago whilst being in a theatre which was built only three years ago...I asked and booked a seat in a designated disabled area even though i only used the seat for my coat and handbag...I stood up leaning against the wall.....but this was not for long as the manager of the theatre asked me to sit down as apparently I was breaking the fire regulations by standing up....!!!! This really infuriated me as the disabled are labelled as only being able to sit yet we who have to stand up are not recognised. When I complained to the authorities who regulated this building they admitted that they had never encountered such a situation....citing that normally disabled people can sit!!!

Another example of this also happened to me recently as i entered a supermarket and was accosted by a member of the pubic who asked why when I could walk did i park in a disabled bay....I hesitantly produced my Blue Badge which is recognised for disability.....this met with a shrug of the shoulders.

We should try to establish an awareness Worldwide that being disabled does not always mean being able to sit and that some people cannot sit.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
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Violet M
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Re: L.A.P.S. (lie and be still) Day

Post by Violet M »

Kat, what a brilliant idea!
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: L.A.B.S. (lie and be still) Day

Post by kat »

I have had the same issue with standing. People seem irritated with me when they see me struggle to walk and they show up with a wheelchair. I have to explain that I'm unable to sit so often I wish there was a phrase for people like us to get the general population to understand.
The movie thing is upsetting and I'm always lying on benches in public also.
I wish there was a symbol for our condition so 'normal' people knew why we always look lazy.

What should the symbol be?
Should our day be Stand and be Still Day?
Didn't cancer already get the Stand Up to Cancer? Does that mean ours can't be titled Stand Up or something related to that?
I am starting origami tomorrow to give my hands something to do.
What are you all doing with your hands while on bed rest?

The life raft on this page is funny because it sorta looks like a pillow to sit on.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
pianogal
Posts: 437
Joined: Mon Sep 20, 2010 2:11 am
Location: Orange County, CA

Re: L.A.P.S. (lie and be still) Day

Post by pianogal »

We DO need a day. We DO need awareness. I am sick of trying to explain to the world... and I honestly think airlines SHOULD give us free extra seats or lay flat accomodations, because they accomodate people in wheelchairs.

Although we can't all travel, I wonder if we could do a group SKYPE conference every now and then to build morale.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: L.A.P.S. (lie and be still) Day

Post by kat »

I like where your heads at. I want to have a symbol for all of us.
A turtle because we are so slow?
You know those carts that people stand on and move around like cops in malls use? We should have a disabled sticker that is blue and white with a stick person using one of those. Like the current disabled on is blue and white with a person using a wheelchair.
SKYPE is genius. I confess that I have a computer with that and have no idea how it works. I will learn for the sake of all our sanity.
I will work on a logo and post when I figure out how to post pictures.
I am computer challenged so keep the ideas coming and I will work on it.

Hugs to everyone

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
kat
Posts: 203
Joined: Fri Sep 17, 2010 3:44 pm

Re: L.A.P.S. (lie and be still) Day

Post by kat »

www.cafepress.com/PNESupport has merchandise for PNE support.
Buy something and we can show it of when we use skype for our awareness day.

Kathy
Born with pudendal and obtorator neuralgia. 32 years of being misdiagnosed.
Surgery with Conway 7/14/10. Internal burning cured!
Currently in PT for many pelvic floor issues due to having PN for so long.
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