Re: Making plans

[Guest guest]

Making plans is one of the most difficult things I do. I've lost friends over

the last15 or more years I've had fibro little by little as I could do less and

less. These people who I thought would always be there couldn't stand the

annoyance of my having to cancel sometimes. My family started treating me

differently about doing things with them because they wanted to make sure I

wouldn't cancel before they would plan anything with me. How can I guarantee

that? I don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've explained that

and instead of working with me on things, they make no plans with me. If I do

make plans with my daughter or to have my grandchildren she is still quite angry

not only if I can't do it, but if I'm late. It never occurs to them how

terrible this is on me; just how it affects them. I don't understand it -

particularly getting mad if I'm late. I wouldn't be that

way with them. I've had people cancel on me because something's come up or be

late because it was a harried day. I didn't get mad. Things happen. I wish

someone would give me the same understanding I would give them. (Except for my

son, who does understand and plans things anyway.)

Thanks for letting me vent.

Marti

Melody wrote:

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

--

[Guest guest]

That's great that you can do that . I could never take 10 teenagers

anywhere now, much less plan it in advance and know that I will be able to do it

then. I do have plans to go to a national Special Ed Convention in Boston the

beginning of April, but my son can go in my place if I can't make it so I know

the advance fee won't be wasted. I was told that because of my situation I

could have a later refund date. Without scenerios like that I can't plan

anything much. It's Tuesday evening as I write this and I'm still planning on

my grand children coming on Saturday, but if I get really bad off we will have

to make different arrangements. I have to know that all will not be lost if I

can't do it.

I'm glad that you can though. Good for you!

Marti

Mystic wrote:

LOL you would never survive going somewhere with me then Melody!! I

make plans MONTHS in advance. For example, not only do we almost have

out plans finalized for the trip to the ren faire in April, I almost

have all the plans finalzed for a three day trip to Dallas at the first

of June so I can take 10 teenagers to the A-Kon animation convention

there. Guess I've just never been one to do stuff at the last minute

lol

lisa n.

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

Well Marti, the way I look at it is this. I'm going to hurt if I stay

home that weekend and I'm going to hurt if I pack up the kids and take

them to the anime convention in Dallas. So, I look at it this way,

which place is more fun to be in pain at??? LOL Twisted way of looking

at the world I know but it helps get me through it.

N.

[Guest guest]

Well, I'm glad that works for you. I'm jealous. Pain affects me in a different

way. It makes me not be able to think or make any kind of decision. Noise

makes my head throb and I can't hear. I can't move sometimes even to get out of

my chair. The kids would have to carry me there if I was to go on most days.

If I'm not having a pain day I could at least go somewhere but there's no way I

could take 10 teenagers. I'm not sure how I'm going to handle the noise that my

grandkids make when they are here this weekend.

I think it's great that you can do this. More power to you. Sounds like a

fun trip. Wish I could go with you. Have fun.

Marti

Mystic wrote:

Well Marti, the way I look at it is this. I'm going to hurt if I stay

home that weekend and I'm going to hurt if I pack up the kids and take

them to the anime convention in Dallas. So, I look at it this way,

which place is more fun to be in pain at??? LOL Twisted way of looking

at the world I know but it helps get me through it.

N.

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

Never miss a thing. Make Yahoo your homepage.

[Guest guest]

I completely understand this, Marti! Vent away, I'm sure most of us

deal with this regularly.

Melody

Marti Boguski wrote:

> Making plans is one of the most difficult things I do. I've lost friends over

the last15 or more years I've had fibro little by little as I could do less and

less. These people who I thought would always be there couldn't stand the

annoyance of my having to cancel sometimes. My family started treating me

differently about doing things with them because they wanted to make sure I

wouldn't cancel before they would plan anything with me. How can I guarantee

that? I don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've explained that

and instead of working with me on things, they make no plans with me. If I do

make plans with my daughter or to have my grandchildren she is still quite angry

not only if I can't do it, but if I'm late. It never occurs to them how

terrible this is on me; just how it affects them. I don't understand it -

particularly getting mad if I'm late. I wouldn't be that

> way with them. I've had people cancel on me because something's come up or

be late because it was a harried day. I didn't get mad. Things happen. I wish

someone would give me the same understanding I would give them. (Except for my

son, who does understand and plans things anyway.)

>

> Thanks for letting me vent.

> Marti

>

[Guest guest]

, I survived Six Flags over TX in October, it was my first time in

over ten years to go, and my first time to go since fibro. I was so

nervous! All those new rides, I was so scared the week in advance

knowing I'd just ruin the day and be in pain. But I took a naproxen in

advance, then took sinus meds and ginger pills.

I haven't been that terrified in a long time, but I faced some fears and

rode some of the scariest even if I was shaking with fear. I paid

dearly with pain, but I think the pain came mostly from my body tension

I was having before riding a ride, and the standing in line. THAT was

rough. We stood in a two hour line for the superman one and I was in

horrible pain. But the adrenaline of that ride knocked the pain out of

me for a bit.

Not sure how much of a hurry I am to do it again, or ride some of thsoe

again. It was one of those times I was like " you know what, I'm tired

of being afraid, I'm going to just do it! "

And I'd ride a ride that minutes before I told the others I wouldn't

ride. I did have pain the next day but not like I thought I would. I

just took my Naproxen and kept things at a tolerable level.

But bottom line is when we made the plans I did worry I'd be in pain,

but the end result was that I went and had pain, but had a blast and was

glad I went.

I really hope I can be as brave in 2008 as I was in 2007.

Melody

Mystic wrote:

> Well Marti, the way I look at it is this. I'm going to hurt if I stay

> home that weekend and I'm going to hurt if I pack up the kids and take

> them to the anime convention in Dallas. So, I look at it this way,

> which place is more fun to be in pain at??? LOL Twisted way of looking

> at the world I know but it helps get me through it.

>

> N.

>

[Guest guest]

MARTI, I AM THE SAME AS U, EXCEPT I HAVE 1 FRIEND AND MY MOM WHO UNDERSTANDS, AS

THEY HAVE ILLNESS TO. HANG IN THERE. I SAY TO BAD FOR THEM WHO ARE MISSING OUT

ON YOUR GOOD COMPANY THEY COULD HAVE ON YOUR GOOD DAYS. I AM ALWAYS AFRAID TO

MAKE ANY PLANS, AND SOMETIMES SAY I WILL GO AND DREAD IT WHEN TIME COMES, CANCEL

ETC. BEST TO U SHARON

Melody wrote: I completely understand this,

Marti! Vent away, I'm sure most of us

deal with this regularly.

Melody

Marti Boguski wrote:

> Making plans is one of the most difficult things I do. I've lost friends over

the last15 or more years I've had fibro little by little as I could do less and

less. These people who I thought would always be there couldn't stand the

annoyance of my having to cancel sometimes. My family started treating me

differently about doing things with them because they wanted to make sure I

wouldn't cancel before they would plan anything with me. How can I guarantee

that? I don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've explained that

and instead of working with me on things, they make no plans with me. If I do

make plans with my daughter or to have my grandchildren she is still quite angry

not only if I can't do it, but if I'm late. It never occurs to them how terrible

this is on me; just how it affects them. I don't understand it - particularly

getting mad if I'm late. I wouldn't be that

> way with them. I've had people cancel on me because something's come up or be

late because it was a harried day. I didn't get mad. Things happen. I wish

someone would give me the same understanding I would give them. (Except for my

son, who does understand and plans things anyway.)

>

> Thanks for letting me vent.

> Marti

>

[Guest guest]

Good for you Melody! I haven't been to six flags in a long time. My

boyfriend at the time and I did take both my kids to Universal Studios

for a week in 2006 and we rode every ride in the park!! OMG, I had

never hurt so bad after walking all over that park for two days

straight but it was worth it for the fun and memories.

N.

[Guest guest]

Thanks for writing and understanding Melody. I appreciate it.

Marti

Melody wrote:

I completely understand this, Marti! Vent away, I'm sure most of us

deal with this regularly.

Melody

Marti Boguski wrote:

> Making plans is one of the most difficult things I do. I've lost friends over

the last15 or more years I've had fibro little by little as I could do less and

less. These people who I thought would always be there couldn't stand the

annoyance of my having to cancel sometimes. My family started treating me

differently about doing things with them because they wanted to make sure I

wouldn't cancel before they would plan anything with me. How can I guarantee

that? I don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've explained that

and instead of working with me on things, they make no plans with me. If I do

make plans with my daughter or to have my grandchildren she is still quite angry

not only if I can't do it, but if I'm late. It never occurs to them how terrible

this is on me; just how it affects them. I don't understand it - particularly

getting mad if I'm late. I wouldn't be that

> way with them. I've had people cancel on me because something's come up or be

late because it was a harried day. I didn't get mad. Things happen. I wish

someone would give me the same understanding I would give them. (Except for my

son, who does understand and plans things anyway.)

>

> Thanks for letting me vent.

> Marti

>

[Guest guest]

Thank you so much Sharon, That was such a sweet thing to say. Yeah, too bad

for them!

Except it still leaves me with not much of anyone to do anything with or just

to come over and watch a movie. I react the same as you about making plans.

It's not like I cancelled all the time, just a few times and that was all it

took. And also it wasn't for something you have to have tickets or seats for

that would get unused. It was just to get together. There just aren't as many

people as I thought there were who are willing to go to the trouble of having to

put up with some uncertainty. It has hurt my feelings a lot, but that was a

while ago and I don't expect anyone to understand anymore; not that I'm out

there meeting new people anyway. Mostly just here at home.

Thanks again,

Marti

sharon studley wrote:

MARTI, I AM THE SAME AS U, EXCEPT I HAVE 1 FRIEND AND MY MOM WHO

UNDERSTANDS, AS THEY HAVE ILLNESS TO. HANG IN THERE. I SAY TO BAD FOR THEM WHO

ARE MISSING OUT ON YOUR GOOD COMPANY THEY COULD HAVE ON YOUR GOOD DAYS. I AM

ALWAYS AFRAID TO MAKE ANY PLANS, AND SOMETIMES SAY I WILL GO AND DREAD IT WHEN

TIME COMES, CANCEL ETC. BEST TO U SHARON

Melody wrote: I completely understand this, Marti! Vent

away, I'm sure most of us

deal with this regularly.

Melody

Marti Boguski wrote:

> Making plans is one of the most difficult things I do. I've lost friends over

the last15 or more years I've had fibro little by little as I could do less and

less. These people who I thought would always be there couldn't stand the

annoyance of my having to cancel sometimes. My family started treating me

differently about doing things with them because they wanted to make sure I

wouldn't cancel before they would plan anything with me. How can I guarantee

that? I don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've explained that

and instead of working with me on things, they make no plans with me. If I do

make plans with my daughter or to have my grandchildren she is still quite angry

not only if I can't do it, but if I'm late. It never occurs to them how terrible

this is on me; just how it affects them. I don't understand it - particularly

getting mad if I'm late. I wouldn't be that

> way with them. I've had people cancel on me because something's come up or be

late because it was a harried day. I didn't get mad. Things happen. I wish

someone would give me the same understanding I would give them. (Except for my

son, who does understand and plans things anyway.)

>

> Thanks for letting me vent.

> Marti

>

[Guest guest]

You know what else? If you weren't up to going out, why in the world

can't they come to you? Pick up some chinese or mexican and a good

movie or a good game and hang out anyway! You might still be tired,

but heck, you'd still have folks around you who understand!

I know I'm tired of saying " I'm sorry " to DH. I feel like I am

letting him down in so many ways. A lot of the things around the

house he has had to take over because I simply cannot do it any more.

But this too shall pass and we will adjust to a new " normal " in our

lives, right? That's my prayer, anyway!

Darlene

> > Making plans is one of the most difficult things I do. I've lost

friends over the last15 or more years I've had fibro little by little

as I could do less and less. These people who I thought would always

be there couldn't stand the annoyance of my having to cancel

sometimes. My family started treating me differently about doing

things with them because they wanted to make sure I wouldn't cancel

before they would plan anything with me. How can I guarantee that? I

don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've

explained that and instead of working with me on things, they make no

plans with me. If I do make plans with my daughter or to have my

grandchildren she is still quite angry not only if I can't do it, but

if I'm late. It never occurs to them how terrible this is on me; just

how it affects them. I don't understand it - particularly getting mad

if I'm late. I wouldn't be that

> > way with them. I've had people cancel on me because something's

come up or be late because it was a harried day. I didn't get mad.

Things happen. I wish someone would give me the same understanding I

would give them. (Except for my son, who does understand and plans

things anyway.)

> >

> > Thanks for letting me vent.

> > Marti

> >

>

>

[Guest guest]

Hi Darlene,

I agree with you wholeheartedly. I've even suggested it and one of my " old

friends " did come over and we ate and chatted. We had Chinese. It was such a

fun evening. I wish she would do it again, but it hasn't happened yet. Here's

hoping. And none of the others even call anymore.

There is one dear person who lives up the street from me who has retired from

her grueling job and now works in the pharmacy department of CVS and will bring

me my prescriptions when I need her too. She is so nice. She calls at least

once a week to see if I need anything. I barely knew her before. She is the

cousin of the friend who came over that one time and I had met her at parties

and such before.

So there are still nice people around. I just have to find them. Of course I

might have to leave the house to do that. LOL

Take care of yourself and thanks for the support,

Marti

ddean228 wrote:

You know what else? If you weren't up to going out, why in the world

can't they come to you? Pick up some chinese or mexican and a good

movie or a good game and hang out anyway! You might still be tired,

but heck, you'd still have folks around you who understand!

I know I'm tired of saying " I'm sorry " to DH. I feel like I am

letting him down in so many ways. A lot of the things around the

house he has had to take over because I simply cannot do it any more.

But this too shall pass and we will adjust to a new " normal " in our

lives, right? That's my prayer, anyway!

Darlene

> > Making plans is one of the most difficult things I do. I've lost

friends over the last15 or more years I've had fibro little by little

as I could do less and less. These people who I thought would always

be there couldn't stand the annoyance of my having to cancel

sometimes. My family started treating me differently about doing

things with them because they wanted to make sure I wouldn't cancel

before they would plan anything with me. How can I guarantee that? I

don't know how I will feel tomorrow must less next week. I don't know

what kind of day it will be until I wake up in the morning. I've

explained that and instead of working with me on things, they make no

plans with me. If I do make plans with my daughter or to have my

grandchildren she is still quite angry not only if I can't do it, but

if I'm late. It never occurs to them how terrible this is on me; just

how it affects them. I don't understand it - particularly getting mad

if I'm late. I wouldn't be that

> > way with them. I've had people cancel on me because something's

come up or be late because it was a harried day. I didn't get mad.

Things happen. I wish someone would give me the same understanding I

would give them. (Except for my son, who does understand and plans

things anyway.)

> >

> > Thanks for letting me vent.

> > Marti

> >

>

>