Re: spouse with AS; need help providing him support

[Guest guest]

I think it is hard for someone who does not have chronic pain to understand how

people with it feel. Im sure your husband, like me, know that exercise and

stretching makes us feel better but some days just moving around and mild

stretching is enough and pushing yourself to do more just ends up knocking you

out for the next couple of days. With AS you have good days and you have bad

days. You have days where people look at you and think you are better but then

the next day you are in so much pain its hard to smile at your kids. Your

husband may have a high pain threshold, I know I do, but this pain is

overwhelming sometimes and there is no light at the end of the tunnel, you dont

know when or if it will ever end. Ive had this disease since I was in my late

twenties and have always been able to manage it just with NSAID's and

exercise....I have done Kung Fu and jogging, worked, and had babies. Three years

ago, age 43 now, my disease jump started into high gear. I can hardly walk most

days and need a cane. Im fusing in my SI's, pelvis, hips and thoracic spine. I

literally hurt everywhere and its really hard to live like this. Im not saying

you are not being supportive and you do have a lot on your plate, we have two

Autistic kids so I understand, but if you want advice, dont push him to hard. I

feel very guilty because I can not do the things I used to do, I can only

imagine that a man would feel even worse as a man is expected to " suck it up "

and take care of his family. Its good that you try to encourage him but make

sure its encouraging and not pushing. Just try to remember that he has to deal

with pain and the guilt of not being able to function the way he wishes he could

everyday. Also as far as being around other people and not complaining that is

probably due to his guilt and sometimes you need to express the way you feel so

he does this where it is safe and people wont make a fuss. Also eventually

people with AS do, hopefully, go into a remission or stop fusing so things may

get easier down the road. You may also want to have him talk to his doctor

because if he is on meds and his pain is still that bad maybe he is not on the

right medication. I am switching Rheumy's because even though Embrel helped me I

am still in a lot of pain and obviously still fusing and my current Rheumy just

keeps telling me to wait it out. I have other issues with him but I wont go into

it. Hope I didnt offend you, just talking from your husbands side of the fence.

________________________________

From: <galbagang@...>

Sent: Tue, May 3, 2011 2:07:05 AM

Subject: spouse with AS; need help providing him support

I finally had a revelation tonight that perhaps there would be a group for

AS and 'bingo' I was right. I have a husband who was diagnosed with AS about 13

years ago. He sees his rheumatologist regularly and takes his meds (Diclofenac

and Enbrel) as prescribed but otherwise doesn't take a very active role in

learning more about how he can help himself. We have 4 kids; 1 of whom has

special needs and I work part-time (and happen to be a physical therapist).

Over the years I have tried to encourage him about seeking out more information

such as the effects of diet and the importance of exercise. I have provided him

with exercise guidance (which helps when he does it). I have also given him

articles on good/bad foods related to inflammation. I try to make a point of

getting some of the foods that are thought to fight inflammation to have on

hand. However, you can lead a horse to water but you can't make him drink...Well

right now he happens to be in the middle of a terrible spell right now. He has

had a cold lasting several weeks and therefore has been off his Enbrel which has

made him feel terrible. I really do try to be supportive but am failing

miserably. My husband feels he has a high pain tolerance and I honestly have no

idea how bad he feels. He complains A LOT and groans A LOT as he moves about.

However, in the presence of others outside the family he somehow can move about

quietly. I know home should be a safe place to let your guard down but... I

want to be supportive but I find myself thinking that he could be doing better

if he took a more pro-active approach. I was hoping that those of you who

suffer from AS or another pain causing disease could share some of the ways your

loved ones support you? Thanks in advance to any advice you can offer.

Paige

[Guest guest]

April,

Thank you so much for your candid words. Your insight was exactly what I was

looking for. I am sorry that your MD hasn't found the right medications to

prevent your fusing; I think you advice about my husband looking at a new MD

isn't a bad one since he does continue to have so much pain. I especially

appreciated your insight to check my motives of encouragement making sure I am

not contributing to the guilty feelings. Is there anything specific that your

spouse does or says that particularly helps?

Thanks for taking the time to respond.

Paige

>

> I think it is hard for someone who does not have chronic pain to understand

how

> people with it feel. Im sure your husband, like me, know that exercise and

> stretching makes us feel better but some days just moving around and mild

> stretching is enough and pushing yourself to do more just ends up knocking you

> out for the next couple of days. With AS you have good days and you have bad

> days. You have days where people look at you and think you are better but then

> the next day you are in so much pain its hard to smile at your kids. Your

> husband may have a high pain threshold, I know I do, but this pain is

> overwhelming sometimes and there is no light at the end of the tunnel, you

dont

> know when or if it will ever end. Ive had this disease since I was in my late

> twenties and have always been able to manage it just with NSAID's and

> exercise....I have done Kung Fu and jogging, worked, and had babies. Three

years

> ago, age 43 now, my disease jump started into high gear. I can hardly walk

most

> days and need a cane. Im fusing in my SI's, pelvis, hips and thoracic spine. I

> literally hurt everywhere and its really hard to live like this. Im not saying

> you are not being supportive and you do have a lot on your plate, we have two

> Autistic kids so I understand, but if you want advice, dont push him to hard.

I

> feel very guilty because I can not do the things I used to do, I can only

> imagine that a man would feel even worse as a man is expected to " suck it up "

> and take care of his family. Its good that you try to encourage him but make

> sure its encouraging and not pushing. Just try to remember that he has to deal

> with pain and the guilt of not being able to function the way he wishes he

could

> everyday. Also as far as being around other people and not complaining that is

> probably due to his guilt and sometimes you need to express the way you feel

so

> he does this where it is safe and people wont make a fuss. Also eventually

> people with AS do, hopefully, go into a remission or stop fusing so things may

> get easier down the road. You may also want to have him talk to his doctor

> because if he is on meds and his pain is still that bad maybe he is not on the

> right medication. I am switching Rheumy's because even though Embrel helped me

I

> am still in a lot of pain and obviously still fusing and my current Rheumy

just

> keeps telling me to wait it out. I have other issues with him but I wont go

into

> it. Hope I didnt offend you, just talking from your husbands side of the

fence.

>

>

>

>

>

> ________________________________

> From: <galbagang@...>

>

> Sent: Tue, May 3, 2011 2:07:05 AM

> Subject: spouse with AS; need help providing him support

>

>

> I finally had a revelation tonight that perhaps there would be a group

for

> AS and 'bingo' I was right. I have a husband who was diagnosed with AS about

13

> years ago. He sees his rheumatologist regularly and takes his meds

(Diclofenac

> and Enbrel) as prescribed but otherwise doesn't take a very active role in

> learning more about how he can help himself. We have 4 kids; 1 of whom has

> special needs and I work part-time (and happen to be a physical therapist).

> Over the years I have tried to encourage him about seeking out more

information

> such as the effects of diet and the importance of exercise. I have provided

him

> with exercise guidance (which helps when he does it). I have also given him

> articles on good/bad foods related to inflammation. I try to make a point of

> getting some of the foods that are thought to fight inflammation to have on

> hand. However, you can lead a horse to water but you can't make him

drink...Well

> right now he happens to be in the middle of a terrible spell right now. He

has

> had a cold lasting several weeks and therefore has been off his Enbrel which

has

> made him feel terrible. I really do try to be supportive but am failing

> miserably. My husband feels he has a high pain tolerance and I honestly have

no

> idea how bad he feels. He complains A LOT and groans A LOT as he moves about.

> However, in the presence of others outside the family he somehow can move

about

> quietly. I know home should be a safe place to let your guard down but... I

> want to be supportive but I find myself thinking that he could be doing better

> if he took a more pro-active approach. I was hoping that those of you who

> suffer from AS or another pain causing disease could share some of the ways

your

> loved ones support you? Thanks in advance to any advice you can offer.

> Paige

>

>

>

>

>