Re: Support for family members

Posted January 8, 2008 · January 8, 2008

You struck a nerve there! No telling what their group would be

like! See these 2 pages on my site - one is a letter from a man

whose wife has fibro http://www.fms-help.com/072006.htm and the other

is a response to that letter by a reader http://www.fms-

help.com/relationships.htm about relationships and fibro. - Dominie

> I think I spelled it right... Has anyone been told they have

fibro , but also myofascial pain in arms, back etc. ? Do you do any

things different for that ? Or just the same as for the fibro pain?

Has anyone tryed cranial sacrial (SP.) work? I hae a place on my back

that stays so sore and achy.

>

Posted January 8, 2008 · January 8, 2008

Wow! I got it. Thanks.Dominie Bush <dombush@...> wrote: You struck a nerve there! No telling what their group would be like! See these 2 pages on my site - one is a letter from a man whose wife has fibro http://www.fms-help.com/072006.htm and the other is a response to that letter by a reader http://www.fms-help.com/relationships.htm about relationships and fibro. - Dominie> I think I spelled it right... Has anyone

been told they have fibro , but also myofascial pain in arms, back etc. ? Do you do any things different for that ? Or just the same as for the fibro pain? Has anyone tryed cranial sacrial (SP.) work? I hae a place on my back that stays so sore and achy. > > > > >

Posted May 13, 2009 · May 13, 2009

Kate, I don't know of any, but if you locate one, please let me know so that I

can attempt to get my hubby on-line...

I have seen people like yourself continue to ask questions and ask for support

for their loved ones on this site... I can assure you that those on this site

will not be prejudice against you due to the fact that you yourself do not have

any of these illnesses. You are still attempting to go through some rough

changes that are bound to occur and as a spouse, your husband is going to need

your support, but most of all, your understanding... what a better place to

start then with all of us who have already been living this reality day in and

day out. I applaud you for being so proactive and willing to find out as much

as you can!!!!! Speaking for myself, I despise being babied... but there are

days when I have no choice. My best advise would be to discuss with your

husband about pain and what he wants to continue to manage... and what he

expects you to do as his partner in life.

After the last 2 years of fighting with my husband and almost getting a divorce

due to us not talking about the illness, (I felt this was my own personal

problem and no one-else's) we now discuss how I feel on a daily basis... This

way he knows if I'm extra tired or in extra pain or even feeling extremely

good... I've found this makes living together easier as he no longer needs to

guess how I'm feeling or thinking. He explained it as walking on egg shells

not knowing how I'd react to him just asking if I wanted to go for a bike ride,

a walk or just cooking dinner....lol

Apparently I was/still am very moody. But when your incapable of being

wonder-women or superman anymore, it takes awhile to accept the new life we are

forced to live. Be patient and try your best to place yourself in his

shoes... especially if he's used to being active and mocho...

Best wishes in your journey!

Bonnie

>

> Hello, I am new to the group. My husband is facing a highly probable

diagnosis of RA.

>

> Does anyone know of a good online support group for spouses? I have gained so

much from reading through the archives on this group. But with that knowledge

comes a degree of fear, to be honest a great deal of fear. I have been trying

to research the positive outcomes, the hopeful scenarios. But in the back of my

mind I know anything could happen. I am struggling with how to be supportive

and not coddle or make him feel less than he is. I have tried reaching out to

our extended family, but they don't understand how the changes in his health

have impacted not only his life, but our life.

>

> It is nice to see some men with RA contributing to the group, perhaps your

wives have found a good resource you could share?

>

> Thanks,

>

> Kate

>

Posted May 13, 2009 · May 13, 2009

Kate,

I am soo sorry to hear about your husband's possible diagnosis of RA. Your

husband is lucky to have a spouse who's trying to understand how RA not only

impacts the person w/ it, but the family as a whole. I would contact the

arthritis foundation in your area or even check w/ his rheumatologist (if he has

seen one yet). They might be able to refer you to support groups, if there are

any. All I can say, listen, be kind and support him in any possible. Best of

luck to you.

>

> Hello, I am new to the group. My husband is facing a highly probable

diagnosis of RA.

>

> Does anyone know of a good online support group for spouses? I have gained so

much from reading through the archives on this group. But with that knowledge

comes a degree of fear, to be honest a great deal of fear. I have been trying

to research the positive outcomes, the hopeful scenarios. But in the back of my

mind I know anything could happen. I am struggling with how to be supportive

and not coddle or make him feel less than he is. I have tried reaching out to

our extended family, but they don't understand how the changes in his health

have impacted not only his life, but our life.

>

> It is nice to see some men with RA contributing to the group, perhaps your

wives have found a good resource you could share?

>

> Thanks,

>

> Kate

>

Posted May 13, 2009 · May 13, 2009

Kate,

A while back, someone posted " The Spoon Theory "

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf

I found this article to be truly a lifesaver. It really helped my husband

understand exactly what I was going through. Now he'll ask me all the time about

my " spoons " & it lets him know exactly where I am pain/exhaustion wise, without

saying the words " RA " or " pain " . It may sound odd, but it makes me feel more

" normal " having him put it in those terms instead of him babying me, plus its

sort of our code in front of the kids. I've since sent it to many of my friends

& family to help them understand what we are going through.

The entire website is wonderful & you may be able to find some support on their

message boards as well as outside support.

Your husband is very lucky to have someone so supportive!

>

> Hello, I am new to the group. My husband is facing a highly probable

diagnosis of RA.

>

> Does anyone know of a good online support group for spouses? I have gained so

much from reading through the archives on this group. But with that knowledge

comes a degree of fear, to be honest a great deal of fear. I have been trying

to research the positive outcomes, the hopeful scenarios. But in the back of my

mind I know anything could happen. I am struggling with how to be supportive

and not coddle or make him feel less than he is. I have tried reaching out to

our extended family, but they don't understand how the changes in his health

have impacted not only his life, but our life.

>

> It is nice to see some men with RA contributing to the group, perhaps your

wives have found a good resource you could share?

>

> Thanks,

>

> Kate

>

Posted May 13, 2009 · May 13, 2009

Bonnie, Thank you for your thoughtful words. Like you, my husband has struggled

with the " it's my problem and my problem only " thinking. He had been struggling

to keep up a " normal " appearance with his friends and coworkers for months now.

He had me sworn to secrecy. He didn't want anyone to know what was wrong till

he had a label to put on it. It wasn't until his friends started telling him he

was depressed & anti-social, that he felt he needed to clear the air. Mind you

he is depressed...after all, his activity level has drastically changed in the

last few months.

His biggest challenge beyond the pain and fatigue, is communicating with his

friends and coworkers. He & I have a pretty open dialogue about any issues we

are currently facing, including his heath. But if people don't see him after a

day of work...or first thing in the morning...or in the middle of the night in

pain, they never see the full picture. He has tried explaining it numerous

times, they just don't understand. Which they are all young and fit and

healthy, so it would be hard for them to understand. But sometimes I have to

fight so hard not to go hitting them over the head! I want to fix everything

for my husband. I want to have a meeting with all our friends and say, " Hey,

Look, this is what life is like for now... " My husband would never go for

that. He figures they'll figure it out in a couple of decades when they have a

health issue. For example, today he had a long heart to heart with one of his

closer friends about how he has had to give up so many of the activities he

loves, because after putting in his time at work, he has no energy left. He

told him about how much he would love to be out there playing golf, but he knows

if he does he won't be up to doing anything for the next couple of days. (The

fatigue is really bad for him right now.) thought that maybe, just maybe

he was starting to understand...Two hours later...he get's an invite to go

golfing from the same friend. Now he feels worse emotionally, now he knows all

his buddies went and played golf, he thinks they asked him to play out of

obligation, and now he feels like everything he discussed with his friend went

in one ear and out the other. Again I want to take control and call his friend

and say, " Are you listening to ?! " Invite him to play cards, video games,

watch a game on TV, anything a little less physical. I still think they feel

it's all in his head.

I read once that when you are going through a challenge, especially a health

related challenge, you have " friends " that leave because they just can't handle

the change. That is going to be one of his toughest challenges ahead...

My personal challenge ahead is to be supportive, not trying to run around and

fix everything. I never would have admitted that I was one of those women that

had to fix everybody's problems before now.

Thanks for letting me vent a little...

Kate

> >

> > Hello, I am new to the group. My husband is facing a highly probable

diagnosis of RA.

> >

> > Does anyone know of a good online support group for spouses? I have gained

so much from reading through the archives on this group. But with that

knowledge comes a degree of fear, to be honest a great deal of fear. I have

been trying to research the positive outcomes, the hopeful scenarios. But in

the back of my mind I know anything could happen. I am struggling with how to

be supportive and not coddle or make him feel less than he is. I have tried

reaching out to our extended family, but they don't understand how the changes

in his health have impacted not only his life, but our life.

> >

> > It is nice to see some men with RA contributing to the group, perhaps your

wives have found a good resource you could share?

> >

> > Thanks,

> >

> > Kate

> >

>

Posted May 13, 2009 · May 13, 2009

,

Thank you for the suggestions. I have already contacted the arthritis

foundation in my area and his rheumatologist, unfortunately there aren't any

groups in our area. We are already traveling two and a half hours just to see

his rheumatologist. We live in too rural an area! I will keep looking for some

online groups. I will post if I find any . . .