Re: Re: spouse with AS; need help providing him support

[Guest guest]

" Is there anything specific that your spouse does or says that particularly

helps? "

Sometimes I get so miserable that I say things that I dont mean and he is

pretty good at knowing when those times are and not over reacting. I think

keeping an open line of communication open is what works for us. Sometimes it

feels like Im locked into this world by myself so its nice to be able to talk

about it to someone who I feel safe with and who is not judgmental or too

afraid, like my Mother for instance. Sometimes it helps even to talk about the

pain and sometimes you really do need a pity party....not all the time, but

sometimes. Other times I ask my husband what he thinks I should do and we work

on things together. I can imagine that it is really hard to be that supportive

person all the time. I found out that my husband was having sciatic pain from

muscle strain when we moved and he did not tell me about it or even mention it.

I asked when he was given some meds from the doctor. I was very upset and I

told him that just because I have this stupid disease is not an excuse to keep

things from me and that he was allowed to be sick or in pain too. So also dont

be afraid to share how you feel. I always tell my husband to let me know if Im

complaining too much but so far he has never done that . Also you might try

just distracting him, bring home a movie or just spend time talking about

something, anything, that has nothing to do with AS. I know that sometimes I get

myself so focused on managing my pain and taking care of my kids that I forget

to live, and he is there to remind me that I need to enjoy myself sometimes and

also even to remind me to slow down as I have the tendency to push myself too

hard on good days. When Im getting down on myself and feeling guilty he always

reminds me of all the things that I do and of course that he loves me. Even

though Im aware of what I do it makes me feel better that he realizes it and

knows how hard some things are for me. Having solid support or someone else to

to help me call the shots makes life a lot more simple. I know its hard to get

men to talk but talking things out and being honest about how you truly feel,

really helps. Also, back rubs are great LOL....but you probably already know

that .

________________________________

From: <galbagang@...>

Sent: Wed, May 4, 2011 6:25:21 AM

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

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

>

>

>

>

>