Re: I will try disability,but what do I say my diagnosis is?

[Guest guest]

Dear Shari,

There is something about this that makes us feel as if we're dying, or

sends our thoughts in that direction...not sure if it's related to brain

chemicals directly, or as a result of all the other stuff going on in our

bodies, probably a bit of both....

As a therapist, I've observed this happen inside myself with some

bemusement, as uncomfortable as it is at the time.....I suspect it is our

bodies and spirits flashing a red light to tell us it needs fixing, just in

case we don;t already know, which, thank God, most of us do. Thouhgts

like...I should sort out my will...just in case...how will those left behind

go on when I'm not around ? etc etc

My girl, I can't tell anyone here what to do, but this is what worked for me

:

I took a quality decision not to make my illness part of my identity. Seems

like mere semantics maybe, but it's a whole diff attitude ! Yes, I am sick,

feel tired, get sore.....but that's not who I am, nor what I've become. I'm

a basically healthy person dealing with some health issues, but I am not A

Sick Person. IOW, I make sure I keep seeing myself come out on the other

side of this looking healthy, being active and happy. This is just another

Thing I'm sorting out in my life the same way I sort out bills or a broken

window etc. It isn't me, nor a part of me, just something happening to me

right now, but not here for keeps...does that make any sense ?

I refuse to spend more than 1.5 hours in total thinking about or dealing

with this illness. Taking my tabs = 5 mins ( split into 3 during the day).

Doing research on the Net, reading this list, gathering info = 1 hour.

Fleeting thoughts acknowledging pain, taking mental note of what hurts

where, answering questions from friends etc about it = 25 mins. The rest of

the time, I make very, very sure I'm focused on my job, my art, fun things I

can plan for next week, connecting with friends, pampering myself with a

nice bath or high quality food, all positive stuff. IOW, I'm behaving my way

towards wellness. Spending the entire day faffing around with dr.s

appointments, supplements etc. made me feel really down. If I need to do the

doc thing, I get through it as quickly as possible, and I make sure I have

something else lined up directly after that to move my mind away from the

illness. Even on days when I find it hard to get out of bed, I make damn

sure I don't lie there thinking about how sore or sick I am, I give myself a

firm kick under the behind and mentally latch onto something positive, even

if it's just to paint a small gift for a friend or re-organise recipes or

something. I give myself That much time to Be Sick each day, and wallow in

the misery, and then, That's IT ! No more ! I AM NOT this pain, sickness,

just am a regular person who happens to be dealing with it at the moment,

not for ever.......

Hugs and much love to you,

Fiona

Re: I will try disability,but what do I say my

diagnosis is?

> iggy

>

> I agree - I want to do the same things but where do i start? I am finding

it hard to get out of bed in the mornings due to the fatique, pain,

depression - you name it. I am scared I will get turned down and don't have

the $$ to get an atty for disability. I could use advice also. I am seeing

doc Vasey on Friday - the rheummy who believes us and wrote a book about it.

Maybe he will help. If not then I don't know what to do. I feel so alone

these days - I have a toddler at home and am having a hard time delaing with

the emotional aspect of this situation. I feel like I am dying and want to

spend as much time with him as I have got but I can't afford to not work.

It is a double edged sword...

>

> love

> shari

>

>

>

>

[Guest guest]

Great attitude Fiona!

--- Fiona Parkinson <fionap@...> wrote:

> Dear Shari,

>

> There is something about this that makes us feel as

> if we're dying, or

> sends our thoughts in that direction...not sure if

> it's related to brain

> chemicals directly, or as a result of all the other

> stuff going on in our

> bodies, probably a bit of both....

> As a therapist, I've observed this happen inside

> myself with some

> bemusement, as uncomfortable as it is at the

> time.....I suspect it is our

> bodies and spirits flashing a red light to tell us

> it needs fixing, just in

> case we don;t already know, which, thank God, most

> of us do. Thouhgts

> like...I should sort out my will...just in

> case...how will those left behind

> go on when I'm not around ? etc etc

>

> My girl, I can't tell anyone here what to do, but

> this is what worked for me

> :

> I took a quality decision not to make my illness

> part of my identity. Seems

> like mere semantics maybe, but it's a whole diff

> attitude ! Yes, I am sick,

> feel tired, get sore.....but that's not who I am,

> nor what I've become. I'm

> a basically healthy person dealing with some health

> issues, but I am not A

> Sick Person. IOW, I make sure I keep seeing myself

> come out on the other

> side of this looking healthy, being active and

> happy. This is just another

> Thing I'm sorting out in my life the same way I sort

> out bills or a broken

> window etc. It isn't me, nor a part of me, just

> something happening to me

> right now, but not here for keeps...does that make

> any sense ?

> I refuse to spend more than 1.5 hours in total

> thinking about or dealing

> with this illness. Taking my tabs = 5 mins ( split

> into 3 during the day).

> Doing research on the Net, reading this list,

> gathering info = 1 hour.

> Fleeting thoughts acknowledging pain, taking mental

> note of what hurts

> where, answering questions from friends etc about it

> = 25 mins. The rest of

> the time, I make very, very sure I'm focused on my

> job, my art, fun things I

> can plan for next week, connecting with friends,

> pampering myself with a

> nice bath or high quality food, all positive stuff.

> IOW, I'm behaving my way

> towards wellness. Spending the entire day faffing

> around with dr.s

> appointments, supplements etc. made me feel really

> down. If I need to do the

> doc thing, I get through it as quickly as possible,

> and I make sure I have

> something else lined up directly after that to move

> my mind away from the

> illness. Even on days when I find it hard to get out

> of bed, I make damn

> sure I don't lie there thinking about how sore or

> sick I am, I give myself a

> firm kick under the behind and mentally latch onto

> something positive, even

> if it's just to paint a small gift for a friend or

> re-organise recipes or

> something. I give myself That much time to Be Sick

> each day, and wallow in

> the misery, and then, That's IT ! No more ! I AM NOT

> this pain, sickness,

> just am a regular person who happens to be dealing

> with it at the moment,

> not for ever.......

>

> Hugs and much love to you,

>

> Fiona

>

> Re: I will try

> disability,but what do I say my

> diagnosis is?

>

>

> > iggy

> >

> > I agree - I want to do the same things but where

> do i start? I am finding

> it hard to get out of bed in the mornings due to the

> fatique, pain,

> depression - you name it. I am scared I will get

> turned down and don't have

> the $$ to get an atty for disability. I could use

> advice also. I am seeing

> doc Vasey on Friday - the rheummy who believes us

> and wrote a book about it.

> Maybe he will help. If not then I don't know what

> to do. I feel so alone

> these days - I have a toddler at home and am having

> a hard time delaing with

> the emotional aspect of this situation. I feel like

> I am dying and want to

> spend as much time with him as I have got but I

> can't afford to not work.

> It is a double edged sword...

> >

> > love

> > shari

> >

> >

> >

> >