RE: It hurt so bad

[Guest guest]

god i feel so bad for u . i ve certainly been there and know how u feel . i

am sorry thanksgiving was so tough for u . im sure that you were hoping for a

better day . sometimes the stress of the holidays makes this happen to us with

our disease and i know that feeling of wanting to be at home in bed and to

feel some comfort after lyingdown . hope u feel a little better today . thinking

of u. cathy from ma

[Guest guest]

Dear Pat, I'm so sorry your Thanksgiving was so hard and so painful. It

seems to be a really rough time for so many members of our group. I have

had many holidays in the past 5 years that have been painful and

frustrating. This year, since I've been on Arava I have done much better

than even I expected.

I've been reading everyone's emails about how miserable their days were or

how much they have been dreading the holidays and I've been trying to think

of something to help everyone through this time. We still have Christmas

and the New Year to deal with and I hate the thought of so many of you

miserable all this time. The main thing I think that adds to everyone's

stress is the expectations of family and the thought that the holidays have

to be just perfect. Unfortunately nothing is really ever perfect again once

you have PA, but that doesn't mean that life can't be enjoyable and even

wonderful. I have to agree that relatives and their expectations of us have

to be number one in my mind of stressful events. I've been " lucky " I guess,

since I don't have any relatives around me except my immediate family.

Sometimes we miss the hassle and bustle of family coming in from out of

town, or going over to " Aunt Helen's " for dinner. We found out quickly

thought that the pressure is off when it's just the four of us, and we have

had enjoyable holidays ever since. That doesn't meant that I don't miss my

parents who passed away and wouldn't give anything to be with them again at

this time of year. Those thoughts come to you no matter what is currently

wrong with you.

The only way to deal with " relative stress " as I see it is, to totally

distance yourself from the whole thing. talked about putting up

" plexi glass " to keep out negative thoughts and words from abusive people.

My daughter and I have done that for years with fibromyalgia, only we use

" mirrors " since I think it throws the negative remarks right back at the

person, who normally stops once they realize their remarks are coming back

to them. Having fibromyalgia, I think makes one extremely sensitive to

others intentional or unintentional hurtful remarks. You have to learn to

not let these things hurt you. If it comes from someone you really love,

then the only healthy thing to do is take them aside and tell them, " Hey you

really hurt my feelings with that last remark " . So often people have no

idea what they said was hurtful and often they think they are just being

" funny " . Normally unless you are married to a moron, just asking them to

stop is enough. Also when they expect too much from us, and we just don't

have it to give at this time, we have to put our foot down and tell people.

You have to be the one to say, " I'm sorry, I just can't come over today, or

I'd love to help with dinner, but I cant' stand up that long " . We all know

if we try and do more than is normal we pay for it big time, and you just

have to say no, even if someone else gets upset. When it comes to your

health, we have to be on our " own side " to survive all of this.

I do think we tend to put too much hope and thought into the holidays.

After all they are just another day. Plus they will be over soon and we get

back to our " normal " lives quick enough. I really think if you can try to

focus on what you do have on days like this, instead of what you are missing

or have given up, it makes it much easier. Believe me I know this is so

much easier to say than to do. Last Thanksgiving, I didn't have the

strength to even get dressed and ended up eating dinner in my robe. This

year I managed clothes the whole day...lol. Last Christmas I couldn't even

sit up and unwrap presents. I hurt too much no matter where I tried to sit.

So my daughters moved all the presents into my bedroom and we opened gifts

on my bed. There are ways around a lot of things, if you can keep some

positive thoughts alive. I've had to give up shopping almost completely,

since the malls are impossible for me to walk and I would have to rely on

someone to push me in a wheelchair everywhere. So now I order almost

everything on line. I admit it's not as fun as shopping for all those

bargains, but it also don't take near as long and I'm not exhausted when

it's over either.

One other thing that is great to do, and this may sound sort of hokey... But

each year when you sit around the table, have everyone say what they are

thankful for. The idea is to keep it going as long as you can. Normally

everyone starts out very serious and really is thankful for certain things,

but as the time passes, people get silly and it ends up with every one

laughing at something someone else has pulled out of the air. But the whole

idea is to let the good out from each of us and it helps to remind other

people of things we might have forgotten or haven't considered even a

blessing.

Believe me when I say, I know the holidays are hard, but they can also be

wonderful. I try to remember all I have going for me, and not what I'm

missing each year. I'm not perfect and there are times when bad feelings

seep in and I try and deal with them like everyone else. But I do my

absolute best to not let the bad feelings take over my day. I've lost

enough to this disease, and I refuse to let it take my spirit along with my

body. You can find ways to have good holidays and get through these days

without the stress killing you or putting you into a flare. Again, it all

falls on your shoulders since you are the one who controls your own destiny

and your own environment. My biggest problem has always been guilt and I

still deal with that almost on a daily basis in some form. We all have our

own demons to overcome and most likely those demons would be with us

regardless if had PA or not.

I hope the rest of the holidays are easier on everyone than Thanksgiving has

been. it's just a day, and like a bad flare this too will pass. All my

love, Fran

[ ] It hurt so bad

Hi Everyone,

I am sorry to vent again, but Thanksgiving day was a very painful and

emotionally painful day. I was truly excited about the holiday. We

went to my brothers and my husband did almost all the cooking.

My son wanted to toss around the football. I always did this with him

and ussually was able to motivate others to play. Yesterday the pain

was so bad I couldn't get comfortable, and for get football.

When dinner was finally served we said grace, but I had no appitite.

I couldn't sit comfortablly, and the forks seemed heavey to lift to

my mouth.

After dinner we use to all clean up , I made it till the last three

dishes and then removed my self to a quiet room to lay down. My mom

came in and said " you see you diid too much "

I laid there about 20 minutes listening to the conversations, wishing

only for my bed and my medicine.

So I went and told my husband to stay and have dessert and I was

going home. I said I need my bed. My daughter came with me. I went

home and crawled into bed. Today everything hurts.

It was not like this a year ago. Last year we played games after

dinner and had fun. This year I felt the effects of this awful

disease.I am so mad and angry becuase I love people and having a good

time. This year it just zapped everything from me. As I left my

daughter went to open the car for me. It was dark and the tears were

flowing, but know one could see. I felt as though the disease was

mocking me and showing the power and control it has over me. That

is a rude awakening. It does contol what I can and can't do. It does

control my moods. Because the pain makes me angry and sad.

Sorry for such a downer type of post. I am ussually an upbeat person

and look for the positive and yes this was yesterday, but this

morning isn't much better. Hoping for a better day.

Pat

[Guest guest]

hi pat, i can relate to having a down day, and feeling just darn right

down. I had that yesterday if you had a chance to read my post you'll

see. I'm feeling better today, and I wish for no pain for you, and a

brighter day today! It was sad to read your post about how you wanted

to be with friends and family to celebrate the holiday, but the pa just

brought you down so much! My pa wasn't so bad yesterday, I was just

having the holiday blues and missing my family...but I can see where the

pa would make us feel bad and try to take control. Bare with me I just

woke up and the brain isn't working to well. I feel like I've repeated

myself...lol. That is why I am so determined to do what I can to

surround myself with positive friends and positive things in my life and

not let the pa get me down. The day that someone has to bathe me, or

dress me is when I will be crying! You take care, and keep smiling!

hugs

carla

---

Outgoing mail is certified Virus Free.

Checked by AVG anti-virus system (http://www.grisoft.com).

Version: 6.0.799 / Virus Database: 543 - Release Date: 11/19/2004

[Guest guest]

---

Hi Pat,

I am so sorry about your Thanksgiving...here I was complaining about

mine-I was able to eat, make two dishes to pass, and have somewhat of

a decent day other than the sitting on the chair that hurt my hip and

leg; and you could barely enjoy yours. I am so sorry. Hopefully

yours next year will be better. Last year I couldn't make anything

or even eat. I do eat less and have to eat slow-I think this is

because of my medications. Prayers to you.

God Bless, Sue.

In , " pfried520 " <Pfried520@a...>

wrote:

>

>

> Hi Everyone,

>

> I am sorry to vent again, but Thanksgiving day was a very painful

and

> emotionally painful day. I was truly excited about the holiday. We

> went to my brothers and my husband did almost all the cooking.

>

> My son wanted to toss around the football. I always did this with

him

> and ussually was able to motivate others to play. Yesterday the

pain

> was so bad I couldn't get comfortable, and for get football.

>

> When dinner was finally served we said grace, but I had no

appitite.

> I couldn't sit comfortablly, and the forks seemed heavey to lift to

> my mouth.

>

> After dinner we use to all clean up , I made it till the last three

> dishes and then removed my self to a quiet room to lay down. My mom

> came in and said " you see you diid too much "

>

> I laid there about 20 minutes listening to the conversations,

wishing

> only for my bed and my medicine.

>

> So I went and told my husband to stay and have dessert and I was

> going home. I said I need my bed. My daughter came with me. I went

> home and crawled into bed. Today everything hurts.

>

> It was not like this a year ago. Last year we played games after

> dinner and had fun. This year I felt the effects of this awful

> disease.I am so mad and angry becuase I love people and having a

good

> time. This year it just zapped everything from me. As I left my

> daughter went to open the car for me. It was dark and the tears

were

> flowing, but know one could see. I felt as though the disease was

> mocking me and showing the power and control it has over me. That

> is a rude awakening. It does contol what I can and can't do. It

does

> control my moods. Because the pain makes me angry and sad.

>

> Sorry for such a downer type of post. I am ussually an upbeat

person

> and look for the positive and yes this was yesterday, but this

> morning isn't much better. Hoping for a better day.

>

> Pat