Re: Making plans/Marti

February 13, 2008

Oh (((Marti))) how frustrating that has to be for you!

Since I've been out on medical disability, my world has shrunk

considerably. I have one g/f who checks in on me weekly for our phone

chat - she's a mess but we've been friends since we were 16. We are

long past that hang-out stage, but when I have a doctor's appt in her

town, we try to meet for lunch, if nothing else. I have another

friend 8 yrs now and she has watched me deteriorate and is still

here. She'll be here " til the end " so to speak. I miss it when she's

working like a wildwoman (single mom, 2 kids, nuff said) and we can

have some marathon phone convos! A third friend still lives in

upstate New York. We correspond via email and phone; she has 4 kids

total, 3 still at home, plus a new grandbaby and is a very young

widow.

Then there is my church family. They don't all know my dx yet, but

they are kind and compassionate and I know they are praying for me

(for the asthma part, they don't know about the fibro yet). I believe

I'll have a few lifelongers in there once I get to know some of them

better, you know?

But it's so hard to plan. I never ever schedule anything with my 2

younger kids (8 yr old twins) until I know how I feel. That way, they

aren't disappointed. My 22 yr old lives 2 hours north of me and I

don't see him that often, but he understands that I have lost a step

or two and in fact, has said if anything ever happened to my DH, I

have a place to live; he'll help take care of me (his dad, my 1st

husband already lives with him, wouldn't that be a hoot?).

Anyway, I said all that to say this - we have to vent sometimes and

this is a safe place as you well know. This disease is scary because

it is so insidious. What works for one, doesn't work for another. You

are also looking at losing some energy because of the chemo starting.

But I sense in you a very strong, determined person and I know that

while there will be bad days, you are going to find silver linings.

Even if its from your bed! And I guess we'll all have to develop a

duck's skin and let all others' bad, spiteful, uninformed, mean

comments just roll off our backs. We do the very best we can.

Sometimes its a lot. Sometimes its just taking a shower. Either way,

we are doing what we can.

(((Hugs)))

Darlene

> I still have such a hard time making plans. My neighbor

just emailed me

> asking if I wanted to go with her to the mall on Friday afternoon

and my

> heart kind of started to race a bit. I have no idea how I'm going

to

> FEEL that day! Do you all do that too? We live 45 miles from the

> nearest mall too.

> I'm the type to suck it up and not cancel, then go and be in pain,

> because I have a hard time letting others down. My neighbor is

> sympathetic to my fibro so I know I'll probably say yes to going

and if

> I hurt then she will be patient with me if I'm being slow or

whatever.

> But still, sometimes when I have a bad fibro day I just want to

stay

> home in comfy clothes. What if I feel bad on Friday? I hate how

> unpredictable this thing is.

> I usually prefer to make plans a day before, because usually I can

get a

> feel of what I might feel like the next day. I always make it worse

by

> not being able to sleep the night before, too. Then I ache from

lack of

> sleep.

> Frustrating!!!!

>

> Melody

> --

>

February 13, 2008

Hi Darlene,

Thank you so much for your heartfelt reply.

I'm so glad that you still have many friends left in your life. I don't know

why so many of mine were not willing to put up with my lack of being able to

plan and stick to it. I do talk to one friend about once a month, but we keep

it light now and we used to talk about everything. Of course we used to talk

about every three or four days or more and knew everything going on in each

others lives. We use to see each other a lot too, but then we were playing

tennis and doing things with our kids too. We saw each other more when we

worked that now that we don't. Of course we are both grand parents now, her a

new one, and that takes up a lot of her time as her daughter that just had the

baby lives very close to her.

I have my cousin MJ who I see from time to time. She is very busy with her

job and her kids, 13 and 7, I do see them about once a month. I keep

sometimes when both parents and the 13 year old (Jeff) are busy. I try to go to

their school events but can't always make it. MJ though does not really believe

in Fibromyalgia and that part is difficult. She says things like " you sure are

sick a lot " and will understand if I can't do something because I'm " sick " , but

not because the Fibro monster has reared it's ugly head.

I have two friends, one in Georgia and one in Tennessee, who I e-mail with and

send pictures and Christmas cards to. We don't talk about Fibro either. It's

just what's going on and stuff. Nothing too invasive. They used to be friends

that talked about everything and the one in Georgia has been my close friend

since college. We used to could talk about anything but when I got Fibromyalgia

that all changed and we keep it light.

Anyway, thanks for understanding.

I'm not worried about the chemo for some reason. I just think of it as a

means to an end and something that will end. Fibromyalgia bothers me much more,

because there is no end in sight. There is always the unknown waiting. It will

sap what energy I have but I will be in bed so I will get through it.

It's funny how people say that I am strong, when I don't feel that way about

myself. But it I appear that way then maybe I am. I do try to look at things

realistically as much as possible and not stress over what I cannot control. I

do feel weak and lazy sometimes though when I can't seem to get anything done

and I wonder sometimes if I can't handle things as well as others can. Some of

those thought as left over from my having PTSD and it does interfere with my

thought processes sometimes. My psychiatrist says I have to be strong to have

been through everything I have in my life and not be addicted to something or

spent time in a mental facility.

Thank you so much,

Marti

ddean228 wrote: