Re: You sound good. You look well. Maybe you're just depressed or need to get out more

[Guest guest]

Try this

http://www.medscape.com/viewarticle/568881

or

www.butyoudontlooksick.com

There are TONS of things on the net...just do a Google search for but you

don't look sick or the Spoon Theory

Marta

>Lori wrote:

>I've tried explaining Fibro, Chronic Fatigue, Degenerative Disc, auto immune

problems, Lymes etc. to friends and family and they just don't get it.

>Saying it's like a horrible flu bug doesn't help.

>Anyone read a good, succinct article that maybe I can forward to these cads?

I'm about done with them.

[Guest guest]

Direct them to http://www.butyoudontlooksick.com/ Tell them to page down

to the " Popular Posts " in the right hand bottom corner. There is a post

about the " spoons " that none of us with chronic pain seem to have enough of

as well as other posts that MIGHT educate them.

HTH

Christie in AZ

[Guest guest]

Lori,

lorijkarasek@... wrote:

> Heard that or something similar from family, friends and others.

>

> I've tried explaining Fibro, Chronic Fatigue, Degenerative Disc, auto immune

problems, Lymes etc. to friends and family and they just don't get it.

>

> Saying it's like a horrible flu bug doesn't help.

>

> Anyone read a good, succinct article that maybe I can forward to these cads?

I'm about done with them.

Lori,

I thought about it later and wanted to give you something serious.

PainTopics.org has a section on Resources and Dr. Forest Tenant, along with his

Survival Guide for Intractable Pain Patients actually has one for families,

spouses, friends on what to say and how to support those who they love.

This helps them to identify that they do what you are saying as they cannot

accept that someone they love is hurting and not the person the used to know.

My Sister finally broke down and said to me, " I want my Sister back " and I said

" I do too. " I also find it difficult sharing with them so I come here as you

guys understand and when my family or friends call, and ask how I am doing, they

really don't want to know, they just are saying " Are you back to the person you

were " and some of them will NEVER accept your disability so be prepared.'

That is why I don't go on family in law stuff as the questions and suggestions

never stop, no matter how well meaning. Well, I heard of this guy who just got

up and starting running and it was sheer willpower and that is what you need to

do ( From my 92 year old Dad and I think he was watching, Forest Gump).

So don't set your self up, know your limits, and just take care of yourself. I

personally don't want to go and listen to all the trips, traveling, full

salaries and what they are buying and showing me (I am happy for them and I did

not ask for this disability of a person to hit me in an auto accident ) so I

stay away from that, as I cannot handle being reminded of the things I cannot do

and that is the problem I have to work on before being around them. Hope that

helps explain some of it.

Bennie

[Guest guest]

Bennie, once again, you nailed it.

After 2.5 years (it didn't take me quite that long, and yet I'm still learning)

I've kind of learned to look at my lost relationships as God's way of showing me

who will be here when it REALLY gets unfun. This has weeded out people who run

when the going gets tough, that's for sure. It's also helped me treasure the few

who are there for me.

As far as the aquaintances and family and inlaws you can't avoid, I find it best

to NOT explain anything to them. My chronic pain in no way improves when I think

they have the info to understand, and it is only fuel for them to analyze you

behind your back.

It is because plan and simple NOBODY can truly understand if they've never had

chronic pain.

So I do not discuss my medicines ( " Those are DRUGS! What if you get addicted? " ,

and when they ask how I am, I simply say, " Fine " .

Because as Bennie said, people really do not want to know- they wanna know if

you're the person you WERE, and you can't grant that for them or I'm sure you

would've. Just don't try explaining. If they ask why you miss an event or seem

ill or down, they have enough background info for " It was a bad day for me

physically " to suffice. Otherwise, screw them, sorry.

There's no getting through to uncompassionate people. It hurts, but this is the

YOU for now, maybe forever, and you have to focus on those who have kindness and

patience in their hearts and let everyone else have it be their own problem.

(hugs).

I know the whole thing hurts. I have lost more than a couple of VERY close

friends/inlaw relationships, and I don't even bother with people who give me a

skeptic vibe. It consumes my entire life, but if I mention my pain, well- I even

had my pastor tell my mom I whined too much, let's put it that way.

Bennie wrote:

> Lori,

>

>So don't set your self up, know your limits, and just take care of yourself. I

personally don't want to go and listen to all the trips, traveling, full

salaries and what they are buying and showing me (I am happy for them and I did

not ask for this disability of a person to hit me in an auto accident ) so I

stay away from that, as I cannot handle being reminded of the things I cannot do

and that is the problem I have to work on before being around them. Hope that

helps explain some of it.

>

[Guest guest]

, I am new " er " to this group, and frankly don't get a chance to read, near

as much as I would like (pain is kicking my bum and keeping me from what I want

to do, to what I have to do). Anyway, as I was sifting through my email, I saw

this message and had to reply.

You put into words what I have been trying, and failing to do for quite some

time. I have finally come to the conclusion that life is short, I am in pain,

and I don't have the time nor energy to deal with someone else's drama.

If you knew me in person, that stark, straight to the point comment would mean

more, as I have always been soft spoken, the one who others come to when they

need help, an ear, shoulder etc. This unending pain is changing my personality

and priorities.

At any rate, I have always felt the need to tell the truth, so when asked how I

am doing, knowing full well the other person really does not care to hear my

truth, but is simply asking because they do it without thinking or they are

waiting for the day for me to be okay.

In the past I have tried to answer, and I end up getting a pat answer, a blank

stare, those that look off across the room, trying desperately to find their

excuse for an exit, the problem solver - telling me what I am doing wrong and

the list just goes on and on.

It is obvious to me those that have and those that have not dealt with chronic

pain. I am taking your sage advice.

Regarding your pastors comment ---->> I can not speak for him, because I don't

know him, nor have a clue his reason/motive. That said, please allow me to

apologize just the same. Sometimes our words (knowingly or not) can be as sharp

as any knife or two bladed sword, and cut even deeper, with longer lasting

wounds.

--- wrote:

>

> I know the whole thing hurts. I have lost more than a couple of VERY close

friends/inlaw relationships, and I don't even bother with people who give me a

skeptic vibe. It consumes my entire life, but if I mention my pain, well- I even

had my pastor tell my mom I whined too much, let's put it that way.

[Guest guest]

My doctor is great. He has no problem treating my pain with anything that works,

up to and including this stimulator that I'm currently trying, LOL.

BUT, he's told me if something doesn't work, tell him, he'll try something else.

Marta

[Guest guest]

I don't get on often either to type; my arm is the problem sooo, lol.

But yea, I'm the same way, I'm not one to have this way, but like you said, it's

a new life, and it HAS changed the way I react- I think it had to change it, you

know? I can't spend my time thinking about what others think about my situation.

It's just mine, and if they aren't the type to help or listen or whatever, they

probably never will be, and that's okay, I just don't need the negative

distraction.

Honestly, when people ask me in passing now how I am, I usually say " How are

you? " lol. Just easier sometimes. I don't wanna minimize what's happening, but

well it's just easier to get through with those kinds of people.

> reversvon wrote:

> You put into words what I have been trying, and failing to do for quite some

time. I have finally come to the conclusion that life is short, I am in pain,

and I don't have the time nor energy to deal with someone else's drama.

>

> If you knew me in person, that stark, straight to the point comment would mean

more, as I have always been soft spoken, the one who others come to when they

need help, an ear, shoulder etc. This unending pain is changing my personality

and priorities.

>

> At any rate, I have always felt the need to tell the truth, so when asked how

I am doing, knowing full well the other person really does not care to hear my

truth, but is simply asking because they do it without thinking or they are

waiting for the day for me to be okay.

>

> In the past I have tried to answer, and I end up getting a pat answer, a blank

stare, those that look off across the room, trying desperately to find their

excuse for an exit, the problem solver - telling me what I am doing wrong and

the list just goes on and on.

> It is obvious to me those that have and those that have not dealt with chronic

pain. I am taking your sage advice.

>

> Regarding your pastors comment ---->> I can not speak for him, because I

don't know him, nor have a clue his reason/motive. That said, please allow me

to apologize just the same. Sometimes our words (knowingly or not) can be as

sharp as any knife or two bladed sword, and cut even deeper, with longer lasting

wounds.