Re: Family Members who know it ALL!!!

[Guest guest]

Wow…she could be my mother.

My best wishes to you, I am currently in an encounter with my mother via

e-mail…. She is having difficulties understanding why I cannot pay all

of her bills any more since I have had to stop work and the insurance

company I diligently paid every 2 weeks for STD/LTD keeps withholding my

payments…… the ones who could helps and support us the most seem to only

want to tear us down.

I really don’t understand but am living it.

Much Luck!!!!

Caitlin wrote:

I had an encounter with my sister today that I'm sure a lot of you

can relate to. She told me that if I just slept 8hrs a night then got

up and went to Curves (exercise center), like her, my Fibromyalgia

would go away....

[Guest guest]

Hi Caitlin,

Wow, your sister sounds so much like my mom, dad, and sister. And I

can relate in that the first couple years I had fibro, I did not have

or I was not aware of having any sleep problems at all. I hope you

never get the sleep problems. My insomnia and disrupted sleep

started around the same time I went off my birth control pills - I

was only 26 at the time. Changes in female hormones/estrogen can

effect sleep, mood, pain, and serotonin. It was still bad, but my

fibromyalgia was much more tolerable and I could still work full-time

before the sleep problems and before the bad car accidents. I think

the fibro makes it harder to deal with any other health problems or

injuries or stress or pain problems that come our way.

If I had it all to do over again, if I was working I'd buy good short-

term and long-term disability insurance whenever there's open

enrollment and also try to get a separate policy that is for a

specific occupation - if you're disabled and can't work at that

specific occupation it pays you. I wouldn't have quit my job that

had the disability insurance right after the first car accident - I

think when you quit a job, you're no longer covered. I'd have

increased my car insurance coverage to $250,000/$500,000 before I was

in the bad accidents. Because I think having fibro can make you more

at risk for having more pain problems in the long run. This is not

to scare anyone, but just to help take appropriate precautions. My

sister was injured and after that, she got a higher level of car

insurance because she was more at risk for injury after already

having been injured. It was good she got the higher coverage.

I hate it when my relatives act like my health problems are my fault

or like if I just do this one thing or that one thing I'll be all

better. Of course, the things they recommend are things I've already

tried (some of them many many times over the years) and either they

just didn't work or they made something else like my pain or other

health problems much worse. I hate feeling blamed for so many

chronic pain problems that I never wanted, absolutely hate having,

and have done everything I can think of or research to get rid of. I

don't know which is worse, being blamed or not being believed.

My family does both in varying degrees. I feel like they don't

believe how extreme my pain is if I try to drive more than about 10

min. away from my house - I have bad disks in my neck (from car

accidents) that make my pain worse if I turn my neck much to look at

traffic or to back out of parking spaces. This driving thing feels

like a huge issue to me, when pretty much every holiday they want to

have it at their houses (beyond where I can drive without

excruciating 10/10 neck pain and headaches that last for 1-5 days

straight that nothing helps, and sometimes shooting pain from my neck

down my arms) - they don't want to come to my house, but they act

like I am putting them out soooo much when I ask them to give me a

ride to their houses (they're all within 20-25 min of my house - but

it feels like forever away to me because of my driving problems).

And they often wait until the last minute to tell me if they will

give me a ride (so I get afraid I will not be included in the holiday

because I can't drive there - I'm so isolated as it is, I really look

forward to seeing them whenever I can, and I really want to be

included.) I get so stressed out over this ride thing and even if

they will give me a ride, they make me scared and stressed and won't

let me know until the last minute and won't make arrangements or tell

me as to what time they'll pick me up until the last minute - all the

not knowing makes me more stressed and increases my pain a lot. The

way they treat me makes me feel like a burden and then I get

depressed.

On Thanksgiving, my mom came to pick me up, and started verbally

picking on me and started blaming me for my health problems and pain

and I got really upset with her - more than I've been in a long time

(didn't help that my hormones were out of whack - PMS time and my

pain and sleep and mood were horrible) I felt depressed and like a

burden and was having suicidal thoughts. (I'm not having those

thoughts now and I don't ever plan to act on them.) I want so much

for my mom (and my other relatives) to love me and accept me and be

understanding of my pain and to be compassionate towards me and to

stop negatively judging me and stop acting like I'm a burden and I

wish they could be happy with me or something I've done even once or

to be proud of me for once.

It's like there's so little I can physically do anymore that they

could be proud of me for - I used to be such an over-achiever and

would get praise from the world for good things I did - at school,

work, with friends, with family, volunteering, extracurriculars,

whatever. I wish sometimes my family would realize how hard things

are for me and what a success I really am, considering how much pain

I go through all the time and what challenges I face every minute.

In some ways, I am even more of an achiever now than back when I

wasn't in pain and when I was able-bodied. I wish they could

appreciate how incredibly hard I try and what an achiever I still am

despite how bad I hurt and how impossible things are. I just never

feel like I get any positive feedback from them anymore, and way more

than usual I feel like nothing I do is ever good enough. I always

push myself to do more for them than I would ever do for myself due

to the extreme pain, and they still never seem to appreciate it or

understand how extremely hard I am trying and would like their

approval. I'm sick of all the judgement, especially when I'm doing

the best I can and have done everything I can to be the least of a

burden to them - even when I kept hiring people to help me with

almost everything, so my family wouldn't feel burdened, they still

acted like I was a burden.

When my family judges me and criticizes me and acts like I'm a burden

is when I get most depressed and have the hardest time coping with my

challenges. My dad and sister have both been through back pain and

problems after car accidents, so I thought they'd be more

understanding. But they both found solutions - sister surgery, dad

brace, that helped them a lot and they are able to work full-time and

have pretty normal lives with minimal/tolerable pain. I thought

they'd understand the most, having lived through the pain. But they

seem to understand the least. Something like 1-2 weeks after my back

surgery, (and my mom's gall bladder surgery) they left on vacation

(leaving mom and I to fend for ourselves) and when they came back

they started acting like I should be all better. If even 1 of them

had been going through a surgery, and if mom and I had a trip

planned, mom and I would've cancelled our trip to stay home and help

them, but they didn't seem to give a ...) They still don't get it -

how much pain I'm in - it's almost the exact same level of pain as

before the surgery and I can't physically do as much now as I could

the week before the surgery. Plus, my surgery was much more

involved/more levels and I have fibro and other health problems they

don't have and my surgery was not really successful.

Then, I recently went through this inpatient chronic pain program and

in the pain program they warned us - but it was totally true - your

family will act like " aren't you cured yet? You went to the pain

program, so why do you still have pain? " The program I went to

wasn't to reduce the pain, it was to acknowledge now that you've had

the pain a long time and it hasn't gone away, so it probably won't go

away, and it has effected pretty much every major area of your life,

how do you learn to cope better and function better in all those

areas of your life that are effected by your pain. Learning to cope

better even if your pain never gets better. Learning to change the

things you CAN make better in your life.

How do you learn to communicate better with others, and help your

relationships, and learn to exercise even a little on a regular

basis, and learn to pace yourself better so instead of good days

where you overdo things so much and then bad days when you lay in

bed, instead you try to have more of a balance of a certain amount

you can do every day - keeping things on an even keel and paying

attention to your body and not overdoing. Doing deep breathing and

relaxation techniques to cope better. Slow relaxing exercise like

very gentle yoga or tai chi or stretches combined with deep

breathing. Learning to make some realistic goals and to cut back on

expectations. To adapt. To grieve the old you and your losses and

then try to accept the new you and accept your new reality.

Socializing and relating with others who feel the same way you do.

Making new friends and getting out and trying to have a better life.

Some people do some part-time volunteer work or try to work even a

little part-time (even 2 hours a week, some people can do more and

some even work full-time, but a lot of us are even trying to work up

to doing something 2 hours a week.) Different ways of thinking about

things to help us cope better and feel happier.

Sorry I'm writing so much tonight. I can't always write much and I

guess I've had a lot on my mind. Thanks so much to this group for

being here whenever I need you. I'm glad we can share and relate to

each other. It's so good to not feel alone or like I'm the only one

or like I'm going crazy or something. That pain program was great

like this, too, because everyone there with pain could understand

each other so much and you realized that pretty much everyone else

with chronic pain was going through some similar things and having

some similar thoughts. And had had similar experiences with doctors,

friends and family.

Gotta go. Wishing you all the best and wishing all our relatives

could understand us better. At least we all have each other for

support and compassion. Take care! You're all in my thoughts and

prayers.

Mara

"

>

> Hello All,

>

> I had an encounter with my sister today that I'm sure a lot of you

> can relate to. She told me that if I just slept 8hrs a night

then...

>

> Caitlin "

[Guest guest]

Caitlin,

Yeah, it's a b*tch. I get this from both my mother and my eldest

daughter, particularly from Mom. If the words " arthritis "

or " fibromyalgia " appear in the newspaper or on TV, I am immediately

notified so that I can see or read all about it. There are over 100

kinds of arthritis (mine is rheumatoid) but ANY arthritis mention

will be forwarded. Last night it was a show on Discover Health

wherein a young man was MISDIAGNOSED with rheumatoid arthritis (RA)

when he really had gout. This applies to me --- how? BTW, if his

doctor was a rheumatologist, God help his patients because *I* could

tell from the description that what he had wasn't RA!

Many times the offending relative thinks that we are ill because we

are overweight. In reality it is the reverse, we are overweight

because we are ill. Partly it is the medications which cause weight

gain. Partly it is the inactivity - because it hurts too darn much

to move! But the whole " overweight people are lazy gluttons "

misconception kicks in, further cheapening their view of our misery

as being " all our fault. "

I hope your sister develops better insight.

Nina

[Guest guest]

Think i would tell her where and when to get off. and maybe let her go

do some reading. print some info out and hand it to her and let her

know that maybe she needs to read and think and work on her own problems

and just listen and be a sister for you. you don't need anyone one to

tell you what your doing is right or wrong.. just some one to be there

and listen

I have had many tell me that its all what i eat or that i need exercise

all the same thing.. i went on a strict diet for 6 years didn't help i

exercised til i couldn't move and ended up IP for 9 days for the

inflammation and pain. sooo.. don't let someone ignorant to upset

you.... god knows i want to choke ppl when they tell me its what i eat

lol... the toxins ohhhhhh that makes me so mad...

i went by DR Days diet for 6 years and even stricter than her own i

moved on to even more . went veggie you nave it. i got sicker not

better.. matter of fact i got better for a while when i started smoking

again. so i smoke and i eat so i feel good. not by someone else's idea

of what i should feel like...

i hope you in the end get past your sisters brain farts and forgive her.

she will learn. i hope not the hard way.. but she will learn.. take

care have a pain free holiday and new year...

karen

Caitlin " <caitlink69@y...> wrote:

> I had an encounter with my sister today that I'm sure a lot of you

> can relate to. She told me that if I just slept 8 hrs a night then

> got up and went to Curves (exercise center), like her, my

> Fibromyalgia would go away.