3 replies to this topic

[pinkcloud]

pain - abs get way too much of a hard time, loads of sci cant stand me attitude yet i care not for their opinion. it is harder to see a loved one in pain. Than to be in pain ourself.In me opinion.

i explain it like this, so you may relate a little. Now sci is much more troublesome than this, yet the pain is unimaginable. I dont ever want you to understand it,because that means you would have sci. This is as close as it gets to common health complaints lots of us have.

How come you dont feel outside pain - yet have pain 'inside
When we have tooth absesses, your tooth is not being smashed with a hammer 24/7 - yet it hurts bad - its the nerves, inflammation, infection....same with us

Tiredness and pain relief
remember when you had a bad flu, the tiredness. You take medicine and feel a little better. thats sci tiredness, the pain relief we can get is not much - just enough to help you relax a little.

Nerve pain
bad bad headache, the stabbing, throbbing constant aches is nerve pain.

Muscle spasm pain
when u have run for a bus - got real bad stitch, you literally cant move,thats muscle spasm pain.

Muscle spasm sensation
when you get diohrea pre-emptying pain in your tummy and you feel a rippling sensation, or ladies whom have a baby kicking...thats a good description

Trouble walking
When your drunk, walking gets harder, getting dressed gets harder, caring what you look like gets less attention - cant remember? maybe film yourself and see

stinging nerve pain
Ever got a small paper cut, that real 'stings' thats nerve pain.

Burning nerve pain
Ever touched your nose after preparing chillis - thats 'burning' nerve pain.

spasm jumps
Ever jumped in bed hust before you nod off (dream you fall down steps- thats spasm jumps.

Crying
Ever cry when peeling onions - thats why tears can fall, not sad, just the bodies natural reaction to pain.

And the biggey - how to avoid making loved ones sad
If the pains ever real top bad, i feel cranky, noises become like a loud annoying alarm clock.I always explain that I feel cranky because of the pain - not because anyone has upset me.

Frustration/anger at doctors/healthcare who we feel may have mis-dignosed/treated us bad
If we got hurt by another physically in the street, an apology would be nice. We dont get that all the time,instead we get 'well just get over it - no apology, nothing. If someone did this in the street they would be banged up in prison.....


Depression by loss of old life
Imagine how much you miss a loved one - by death, by falling out - 7 stages of grief to get thorough - sometimes we get 'stuck'in a stage because we miss who we were.


AD attacks
Ever been close to getting run ovr by a bus - you stop just in time - thats the reaction in the body like AD attacks.

Cold attacks
Ever been out in the snow and your hands turn red and freezing - thats 'cold body sensations,.

Referred pain
Ever had so bad indigestion it feels like a heart atack, thats referred pain - pain thats felt elsewhere in the body rather than the organ it comes from.


I know people whom HATE me asking if they are ok, and snap and like to be like a wounded animal and hide away. Then we have to remember, as much as we want to help...the best thing for them is to leave them alone.

I always say 'i wont ask you then, i here when you need me - its you who has requested this so you remember i do care, its up to you to ask for help if you want it'. Very very hard to do, thats love for us hey.

Edited by pinkcloud, 02 July 2011 - 08:53 AM.

[mcwriter]

Miss Cloud, I bow to your ability and willingness to explain this using examples that we AB's can relate to.

While I understand why one doesn't want their loved ones to really know/experience the pain they have,
my hope to better understand it is because I want to conduct my own actions in a more helpful way.
This means that what I can do or what I can give is more "tuned" to the situation at hand.

But, this is not only for myself! It is important to educate others.
General knowledge about sci is sorely lacking, and attitudes are are based on ignorance of it. People automatically go by what they see on the surface and their behaviors are the result of what they know.

This reminds me of a Daniel Tosh comedy show I watched with my husband last night...He referred to a news story about a family with a child who could not feel pain. They described how they had to constantly watch their young daughter because she would put her hand on the hot burner of the stove and not know she was being burned. Daniel Tosh's version of the story, putting himself in the role of the dad was to say, "Look! Our daughter is a superhero!"

Of course it was hilarious at the time, because of his absurd delivery of his joke, but I got to thinking of this while I type this...

When one burns their hand, most people have a typical remedy that involves cold water or ice, for instance, which they use until the burning sensation stops. The redness or blister remains, the sensation is less alarming and they may put something on it like a medicated ointment used for treating burns. At that point, the incident is behind them and overwith. Yet, under the surface of what they see the tissue is still burning for a time and most people don't realize that it is actually more beneficial to continue longer with the cold treatment to to halt further damage to underlying tissue.

What is my point? My point is that people naturally want the quick fixes to everything. "Slap on a band-aid, your fine." That is the attitude people with health issues not readily seen, face. "You look fine, why can't you do this?" or "You can walk, what do you need a wheelchair for?" or "Why won't you come out with us?"--(to that completely wc inaccessible place) Or what's worse, they ignore people because what they do see makes them uncomfortable, they don't know what to say or say stupid things.

They think the 'band-aid' should fix everything, but they do not realize what is going on under the surface of what they see. They feel fine, so should you just because they do.

---all because they do not understand, when even just a little enlightenment and their attitudes and behaviors can change. This applies to both sides of the Pain Barrier.

The word 'Respect' comes to mind here.

You run into someone that you see now and then and they are like the grumpiest person alive. What do you do?
a )-- You suddenly turn away and go the other direction hoping to avoid them
b )-- Oops, they've seen you and you suddenly have to think of something to say that you don't really mean so you can hurry and leave
c )-- You stop and talk to them realizing that there is a reason for how they appear on the surface and you actually listen to what they say

The answer is "c".

My example of the grumpy woman is real. She was someone everyone either avoided or gritted their teeth when they had to talk to her and then they would go behind her back and talk about her. Some how I knew there was a reason for her grumpy behavior and instead of avoiding her I made a point to talk with her and actually look into her eyes and listen. I never found out why she is the way she is, but what happened is this....we both changed. Someone showed her kindness and concern, her shoulders visibly relaxed, her whole demeanor changed, she began little by little to smile more. And I? I stepped into the unknown, not knowing what would happen, I considered the possibility that there was more to her than what I saw, I learned that you never know what kind of positive difference you can make if you even do one small thing differently.

Respect for another human being is being open to more than what you see on the surface. It is being open to the possibility that you each just might have something to give and something to receive, be it for that moment or for a lifetime. Once that step is taken, once we have learned something, it cannot be un-learned and what we have gained by learning can only be built upon.

Edited by mcwriter, 02 July 2011 - 12:55 PM.

[Nailed]

@pinkcloud and mcwriter, I appreciate your words of wisdom ladies.

Edited by Nailed, 02 July 2011 - 05:10 PM.

[Snakeye]

pinkcloud, on 02 July 2011 - 08:43 AM, said:

pain - abs get way too much of a hard time, loads of sci cant stand me attitude yet i care not for their opinion. it is harder to see a loved one in pain. Than to be in pain ourself.In me opinion.

i explain it like this, so you may relate a little. Now sci is much more troublesome than this, yet the pain is unimaginable. I dont ever want you to understand it,because that means you would have sci. This is as close as it gets to common health complaints lots of us have.

How come you dont feel outside pain - yet have pain 'inside
When we have tooth absesses, your tooth is not being smashed with a hammer 24/7 - yet it hurts bad - its the nerves, inflammation, infection....same with us

Tiredness and pain relief
remember when you had a bad flu, the tiredness. You take medicine and feel a little better. thats sci tiredness, the pain relief we can get is not much - just enough to help you relax a little.

Nerve pain
bad bad headache, the stabbing, throbbing constant aches is nerve pain.

Muscle spasm pain
when u have run for a bus - got real bad stitch, you literally cant move,thats muscle spasm pain.

Muscle spasm sensation
when you get diohrea pre-emptying pain in your tummy and you feel a rippling sensation, or ladies whom have a baby kicking...thats a good description

Trouble walking
When your drunk, walking gets harder, getting dressed gets harder, caring what you look like gets less attention - cant remember? maybe film yourself and see

stinging nerve pain
Ever got a small paper cut, that real 'stings' thats nerve pain.

Burning nerve pain
Ever touched your nose after preparing chillis - thats 'burning' nerve pain.

spasm jumps
Ever jumped in bed hust before you nod off (dream you fall down steps- thats spasm jumps.

Crying
Ever cry when peeling onions - thats why tears can fall, not sad, just the bodies natural reaction to pain.

And the biggey - how to avoid making loved ones sad
If the pains ever real top bad, i feel cranky, noises become like a loud annoying alarm clock.I always explain that I feel cranky because of the pain - not because anyone has upset me.

Frustration/anger at doctors/healthcare who we feel may have mis-dignosed/treated us bad
If we got hurt by another physically in the street, an apology would be nice. We dont get that all the time,instead we get 'well just get over it - no apology, nothing. If someone did this in the street they would be banged up in prison.....


Depression by loss of old life
Imagine how much you miss a loved one - by death, by falling out - 7 stages of grief to get thorough - sometimes we get 'stuck'in a stage because we miss who we were.


AD attacks
Ever been close to getting run ovr by a bus - you stop just in time - thats the reaction in the body like AD attacks.

Cold attacks
Ever been out in the snow and your hands turn red and freezing - thats 'cold body sensations,.

Referred pain
Ever had so bad indigestion it feels like a heart atack, thats referred pain - pain thats felt elsewhere in the body rather than the organ it comes from.


I know people whom HATE me asking if they are ok, and snap and like to be like a wounded animal and hide away. Then we have to remember, as much as we want to help...the best thing for them is to leave them alone.

I always say 'i wont ask you then, i here when you need me - its you who has requested this so you remember i do care, its up to you to ask for help if you want it'. Very very hard to do, thats love for us hey.

Outstanding descriptions..all ABs who must deal with those with sci should read this...Thanks for posting..