Re: awful realization

[Guest guest]

--- Cheryl wrote:

> How can it get so bad for so long that you can't

>even remember what it feels like to be whole and

>healthy for just a moment??

Hi Cheryl

I'm sorry, you must be having a terrible time right

now.

I only know that our minds and bodies live, and

function in real time. Pain bombards our brains with

so much stimulation, that many memories are pushed

aside. We go into a survival mode.

My brain, and body were both shocked and amazed

recently. The weather was warm, spring had found

Montana, and it was marvelous.

I felt wonderful (for me anyway) for 2 days. I felt so

good, that I had this bizarre notion, that perhaps I

am truly " getting better " . That happens to me a few

times each year.

Then a drastic weather change came, and I honestly

thought I was going to have a psychotic break. The

sound of the wind howling, and icy rain/sleet/snow

bashing on the windows, was hideous. It felt like

something out of an Edgar Poe poem.

I literally felt like pulling my hair out, and howling

like a werewolf. Fortunately, I had my regular

appointment with my psychiatrist and counselor on

about day 3.

Once we enter the world of chronic pain, our lives are

forever changed. We do the best we can to adapt.

Perhaps if our brains could recall how we once felt,

it be torture. Memory fades, just like you said. We

keep adapting, through all the big changes in our

lives.

Take good care of yourself. It's okay to grieve today.

It's normal to feel sad, angry and disappointed. If

those feelings stay too long, please see a counselor.

I'm a bit frazzled, but I hope this helped you. My son

has Bipolar Disorder, and was off his medications for

about a week. He lives 2 thousand miles away, so I

can't see him very often.

He was a manic mess, but is doing fine now. I still

have the adrenaline shakes and shivers, now that it's

over.

He's a wonderful young man, but he doesn't want to

have Bipolar Disorder. His medications didn't arrive

on time. He probably didn't order them on time, he

does this several times each year.

Once you're a Momma, you're always a Momma. I don't

remember what it was like not to be a mother.

Kaylene

Moderator

__________________________________________________

[Guest guest]

Kaylene,

Amen. You put it perfectly. Normal? I Know I was normal before 1999, but

don't know what that felt like. Being a mother, well, that doesn't go away I

guess until we go away permanently. Thanks for this.

Diane

Kaylene wrote:

I only know that our minds and bodies live, and

function in real time. Pain bombards our brains with

so much stimulation, that many memories are pushed

aside. We go into a survival mode.

[Guest guest]

I think what happens is so gradual that it sort of takes you by surprise. Kind

of like when the sun is shining and then it rains while the sun is shining.

Weird!

I understand exactly what you are saying. The reason it is kind of like an " Ah

Ha " feeling is that it is so gradual that you don't really think about it. You

are trying to get through one day at a time and before you know it here it is

the next year.

Does this mean you are losing it? No, it simply means that you are doing what

you can at the time to get through your life. Our minds have a way of helping us

to control the situation we are facing. That is why when someone dies our body

goes into what I call shock and you are able to get through the funeral and the

days right after that.

I often ask the question, " How did I get to this point of pain? " The answer

is I got there one day at a time, some days one minute at a time.

Have you ever hiked to the top of the mountain. Before all of this came into

my life I have and you get to the top one step at a time. When you start out

the thought of climbing to the top is overwhelming, there is no way you can do

it. However by putting one foot in front of the other and keeping your eyes on

the next step you soon will see the top. When you get there it is flat. When I

was little I used to think the top of a mountain was pointed. They are not they

are flat. That is where most of us are. We are in the flat part of the

mountain. Some of had to climb through thorns, and underbrush to get there. Some

of us have had a immediate beginning like a lighting strike. It is here and

then it is gone. Some have even had a slow progression to the top, it has taken

years.

Did you ever slide down a mountain? It is not easy due to the rocks and

various formations in the earth. That is how we are with pain. Once we get to

the flat part where we know what is wrong with us and we start taking the

medicine or doing the steps to get better, we begin the walk down the hill.

Often the walk down stops completely due to the thorns, or to the underbrush.

We are still on the downward slide we have just had some rough spots. So we pick

up ourself and start again. A different doctor, a different medicine, a

different test and we are off and walking again.

We have had the long upward climb when we were trying to figure out what is

wrong. We have been on the top in the flat part where we now know what is wrong

but our bodies are trying to cope with everything. We are also on the downward

slope where sometimes we have to stop and take count of what to do next. Why

does it seem like only yesterday that we were healthy and everything was fine

and now we must use pills to get us from today until tomorrow? The answer is

that when you think about it our lives really are not that long anyway. In

comparison to eternity this is a drop in the bucket.

So, hang in there, you will make it, things will come back to you, and if it

doesn't? That is because the remembering of the way you were would cause you so

much unhappiness that it is best if you go day by day. Remember we are here for

you, because we care. Gwen

Cheryl wrote:

I just realized a few days ago that after four years of constant pain I can't -

for the life of me - recall what it actually feels like to be pain-free and

strong and energetic, even for a second.

[Guest guest]

Thank you all,

Sometimes I do feel like I'm going crazy. It's nice to know that

others feel as if thier " normal self " is gone now too. I agree with

you Gwen, it's so gradual you don't realize it until it's been so

long. Then it's like, " What happened to me? "

Rach

I think what happens is so gradual that it sort of takes you by

surprise. Kind of like when the sun is shining and then it rains while

the sun is shining. Weird! Does this mean you are losing it? No, it

simply means that you are doing what you can at the time to get

through your life.

Gwen

[Guest guest]

Your right so about this; I don't normally post, but I couldn't let this

one past without replying. I am sitting at a local library with tears

flowing down my cheeks because of these few words you wrote, I just

wanted to pass that along.

C.

Ypsi, Mi.

[Guest guest]

That is me too. I really think I am going crazy. I look at my house,

which before I was considered a dust and dirt neat nick, now I say well

next week I can do that. I just am not the original ME that I was even 5

years ago. I am a shell. I was looking in the mirror and I don't even

recognize myself. I look at least 20 years older and I am having a

birthday in 2 weeks what will I be like later?????

All I have right now are memories..... I lay down at night and pray and

then think back. Sometimes it just makes me cry to not be myself anymore.

The funny thing is people ask you how you are but they really don't want

to hear " how you REALLY are " . I just say good. Oh well.

I am so glad that I have all of you to say the truth and to hear the

truth. Thanks to all of you

Beth

[Guest guest]

THANK YOU! I've lurked for several years, frequently miss whole Digests, but

" something " prompted me to read today's Digest, and it was just what I needed to

hear.

It's been sneaking up on me that, as you say, I'm no longer the

same active and pretty darned competent person I was six months ago and just

what the heck HAPPENED. Where'd *I* go?

Yes, you nailed it: I've gone into survival mode, and thank heaven for the

goats: if I didn't HAVE to be up in the barn twice a day, I think I would have

curled up inside the house and never gone out.

The medical reasons are strictly unimportant for now, but that

you've hit on the emotional growth as we work to adjust to survival mode...wow.

I've been trying to find the WORDS, even the concept. And it's entirely possible

that the blessed rheumatologist will have

solutions for me when I see her on the 24th. Whether she does or does not, this

SURVIVAL MODE is an essential gift, shocking though it may be.

While rummaging through the fridge a little while ago, I accidentally dumped a

container of liver juice I'd been saving for the dog, and of course it spilled

mostly on the floor. I seriously considered just leaving it for the doggie to

get on his next trip through the kitchen <g>; in the end, however, what an

expected visitor later today might think got me to clean it up. The rest of the

house is bad enough, I don't need BLOOD on the floor as well <g>

Something else which comes along with Survival Mode is Very Selective Vision.

I just don't SEE the crud any more ;-)

You're grand, and thank you for sharing your insights so lovingly.

Love,

Helena

[Guest guest]

Beth,

7 years ago I bought my dream house. Had 3 kids of various ages, 2 old enough

now they are out. My house was clean. Bleach clean. A little clutter, but not

horrific. Over the years the kids wore it and me down.

My youngest, my girl I was told I would/could never have, has been taken from

me. She is 13. Placed with her father whose character I will not go into other

than he broke my sons nose when he was 10.

DCF came and took her due to something that happenned that I had nothing to do

with. And the mess, no one would help, and nobody would listen to me.

NOBODY. Not court, DCF. NOBODY offered any help, but they ofered it to my ex who

has more money. I used to clean houses while he spent the money from the family

business on exotic smoke.

Now I am alone without her when she needs her mother the most. All because a

surgeon wwent oops and crippled me, and since it was a state univ hosp- no

lawyer would take a case that paid max 100k.

Gotta love these 'social workers' help who doesnt need and kick the rest to the

curb- oh, but my wheelchair tips if it hits a curb.....

[Guest guest]

Hello,

You are YOU, just a different version, we all grow and change through out a

lifetime. I've learned through this process to stop resisting the " new " me. I

don't necessarily like all the parts of the new me, but come to think of it, I

didn't like all the parts to the old me either.

Just a thought.

Caitlin

betcard@... wrote:just am not the original ME that I was even 5 years

ago. I am a shell. I was looking in the mirror and I don't even recognize

myself.

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

Visiting with older women today at a luncheon we do once a month for widows, I

asked them if they ever thought how did I get here? Or wonder when looking in

the mirror waht had happened to them. Without exception they all said yes,

often we contemplate what has happened to our life that we are now here. Perhaps

this thinking and wondering and the lack of remembering what it was like before

is also felt by everyone else just in a different way. Gwen

betcard@... wrote: That is me too. I really think I am going crazy.

[Guest guest]

Cheryl,

I can relate. I am only 26, but I find it impossible to remember what a happy,

pain free day feels like. I know I used to have fun, and good times. But I am

so far from that now. I still try to live the best I can, and occasionally I do

laugh and have fun. But I am always in pain, whether it's moderate or

debilitating.

It does get depressing when you think of all the things you can't do anymore, or

wish that for a day you could trade places with someone pain free, just to know

what if feels like again.

Hope it gets better for you. Just try to live for today.

Cheryl wrote:

How can it get so bad for so long that you can't even remember what it feels

like to be whole and healthy for just a moment??

Cheryl in AZ

[Guest guest]

i was talking to a friend just a while ago and i just told him im soooo sick of

being this way. i cant enjoy anything, plan anything because you dont know when

you'll have a worse day than today.

i woke up at 4 this morning, crying, my son was so scared, i couldnt get up by

myself. thnn tonight, i had to take him to a birthday party, about 20 miles

away, and kill two hours. i was in so much pain, he felt guilty because i took

him, he said " mom i dont have to go " i felt awful.

hes 15 and hes such a good person. he worries about me because i used to dance

and cut up with him and now all i do is grunt and groan. like you said i do

laugh and joke sometimes, but underneath is still the pain. the last couple of

days has been worse. i agree to take one day at a time. thats all we can do.

talking to you guys helps me sooo much. my husband who im serperated from made

me sooo mad tonight, he said dont you think im in as bad shape as you are? i

just havent been to the dr. i said?God,

have they threatened you with a wheelchair?

he doesnt help me with our son, says i made my choice. he has no clue. sorry im

venting but people dont understand when they cant 'see " what is wrong with you.

or they dont understand when they see you limping one day and not the next.

dont know about you guys but i wish they could spend a couple of days in our

shoes. anyway you hang in there and lean on the people in this group that

understand.

connie

Breanna wrote:

It does get depressing when you think of all the things you can't do anymore, or

wish that for a day you could trade places with someone pain free, just to know

what if feels like again.

[Guest guest]

I have to remind myself that when I was diagnosed with ME/ICD-CFS (called

Chronic Fatigue Syndrome in the US) I was already 58 and had lived a rich, full

life before that.

My children remember me as I was but my grandchildren don't really have any

memory of me other than I am now.

It breaks my heart to hear you young ones (by my calculations) talk of your pain

and suffering and the troubles you are having raising your children. I am so

sorry that you have to suffer so much.

I'll be 72 next month and have been on disability since I was 60 (I'd spent

quite a few years fighting the disease but eventually I could take no more). I

have learned to expect nothing from the next day. I was in terrible pain from

April 13th to the 26th; the pain let up and when I saw my doctor on May 2nd she

started me on Mobic and prescribed 120 Vicodin so I could have four a day as

needed!!!

Amazingly, the Mobic is taking care of my pain right now -- but I know the

severe stuff will be back. When? Tomorrow? Next week? I don't know and so I

don't expect tomorrow's pain to respond to only the Mobic. I try to look on

each day as a new adventure, not knowing what it will bring. Sometimes it

helps.

The empathy and caring on this list is absolutely amazing, and even if I don't

participate much it makes me feel better just to read the correspondence itself.

Thank you all for being here.

Nina in Maine