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#233312 - 05/15/12 04:28 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
tiabird Offline
Registered Visitor

Registered: 03/03/06
Posts: 2434
I am sorry about the separation that you and your husband has had to endure. I hope that your shoulder surgery is a complete success. Will you be able to talk to a PT to learn the best way to handle your recovery and tips to make things easier and to get things in place before your surgery?
_________________________
Tia

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#233362 - 05/15/12 09:59 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
Jessica Offline
Registered Visitor

Registered: 05/15/12
Posts: 2
Loc: Australia
Hi guys,
this is my first post.
I am a 22 yr old student in Australia ^^.

I am not married but my partner was aware he had Crohns before we started dating 2-3 years ago. Then I was diagnosed with AS last year 2011. We knew something was going on though as I had issues with constant hip and leg pain as a child (7-8). I am also being tested for Crohns and just hope that my partner is HLA B27 neg. Other than that we are supportive of one another. ^^
I wish everyone a great day and good health.

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#251170 - 04/22/13 05:43 PM Re: Both Spouses/Partners with Disabling Diseases [Re: marvsgirl]
Artsychicks Offline
Registered Visitor

Registered: 10/22/11
Posts: 3
Loc: Indiana
A question if you don't mind...

My spouse often refuses to take her pain medication. She complains but, due to not wanting to become "addicted" she refuses the doctor's orders to take two morphine sulfates a day. We have had many talks about it and she always goes back to the fear of being addicted. I understand that fear but, at the same time I also understand the effect her pain has on me. Instead of taking the medication, being in less pain and spending time with me she chooses to play on her computer and wait out the pain. I don't have a problem with playing on the computer but, I do have a problem with her not using what is there to help her.

My wife also deals with Borderline Personality Disorder and tends to see the negative in everything. She thinks about all of the negative things that could happen and it fills her mind. I guess I need to know how others deal with the constant need for their spouses care. I love my wife very much and I want to help her but, it is very difficult to constantly have to care for her when she isn't always willing to help herself.

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#251174 - 04/22/13 09:24 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
AmyE Offline
Registered Visitor

Registered: 02/17/11
Posts: 11
Artsychicks, I've actually thought a lot about the issue you bring up. Here's my thinking, which may or may not apply in your case.

I believe that some people become so invested in their identity as "disabled" that there is actually a fear of finding some treatment that cures them, or takes away their pain, or stops the progression of their illness.

Fear of addiction has some basis, because of course we hear about people becoming addicted to medications that have been prescribed for them. But I also think some people use that fear as an excuse to remain more debilitated than necessary, for fear that they may actually "get better" and then...what?

It's a fear that if they get better, you won't have a reason to stay and take care of them. Or they'll be expected to become more productive but they've gotten used to not being so. Or...whatever.

The whole thing can backfire, of course. If you get fed up enough, you will find a way to extricate yourself from constant caregiving. And if you believe that at least part of the level of her disability is her fault, you can wind up feeling as if she abused your love and commitment.



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#251176 - 04/22/13 10:59 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
Shirley Offline
Registered Visitor

Registered: 10/24/11
Posts: 971
Loc: Wellington, New Zealand
There could also be a genuine fear of becoming addicted and as a result even worse off and more dependant than before.
_________________________
Shirley
Peripheral and axial AS diagnosed October 2011 aged 50, more than 15 years after the symptoms started. Also PCOS, GERD/oesophagitis/dysphagia, IBS, asthma,chronic rhinitis. Taking enbrel, methotrexate, folic acid, omeprazole, vitamin D, metformin, steroid inhaler and eating low starch/low GI.

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#251186 - 04/23/13 07:02 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
Artsy, it sounds like her fear about becoming dependent (not addicted) on pain meds is bigger than your ability to help her cope with it. While many of us here do take daily pain meds, having decided that the potential risks are worth it for the potential gains (physical AND emotional!) I think that we generally come to that decision ourselves. Most of us do factor in the impact our pain has on our functioning & thus on our loved ones.

Given your wife has BPD this sounds like a complex situation for her. Perhaps her fears are linked to family history of addiction or an addiction-prone side to her temperament? I wonder if she would be open to a session with you and her psychiatrist to walk through her fears and goals for her own well-being - and also to hear YOUR fears and goals for her - and for yourself.

Some people do decide not to use pain meds - for various reasons. It's an intensely personal choice, but one that needs to be informed. If your mate was truly aware of how hard all of this is on you, she might see it differently. That may sound like I'm suggesting a threat or ultimatum. I'm not. But the reality is, most relationships cannot survive when one of the partners feels they are constantly caring for the other, who is not holding up her end of things. I hope the two of you can work your way through this to a solution you both feel truly good about.
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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#251188 - 04/23/13 07:13 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
SouthernMoss Online
Registered Visitor

Registered: 03/12/13
Posts: 1607
Loc: MS
Artsychicks, does your wife see a therapist for her disorder? I would encourage her to discuss this topic with her therapist. A therapist might be able to help her deal with her fear and look at things more realistically.

Also, you should consider finding a caregivers group for support. Caregivers carry a tremendous emotional burden, and being able to share your experiences with and draw support from people who are "in the trenches" with you can be tremendously helpful.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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#251191 - 04/23/13 07:33 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
AmyE Offline
Registered Visitor

Registered: 02/17/11
Posts: 11
In reading the more recent replies, I realize that mine was a bunch of my own bitterness coming out and not of much help to you, Artsychicks. So please take mine as what it is/was. The others are giving you much more balanced and useful answers.

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#252230 - 05/15/13 06:18 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
Artsychicks Offline
Registered Visitor

Registered: 10/22/11
Posts: 3
Loc: Indiana
Thank you everyone for your responses! My spouse has a fear of becoming addicted to pain medication due to a family history of addiction. She made the decision to use pain medication but, AmyE you are right. I really do believe my wife is afraid of getting better. She has gotten much better with the BPD but, she still "needs" a diagnosis or condition to feel whole. We talked about our feelings today and she told me she thinks that because I chose to marry her and stay with her that I have no right to be frustrated with the AS and no right to voice my feelings about it. I realize and know that she is in excruciating pain and that she suffers everyday. At the same time my choosing to stay with her didn't mean I wouldn't have feelings about it or be frustrated by her illness as well. Unfortunately, I don't think she would know what to do if she didn't have an illness. I love her with all of my heart and unfortunately due to the BPD she is stuck in a mindset of "my pain is worse than your pain." I am always in support of her and what she chooses to do but, I wish she would be more proactive about stopping the pain when it is there or even before it can get there. She is so stuck in her own pain sometimes that she can't see the effect it has on me.

When I say "I'm frustrated at AS because our sex life suffers and the things we can do suffer" she hears this as an insult to her. Even though I have told her many times that it is the disease I am angry at and not her. She takes everything very personally but, asks me not to take anything personally.

I know I will never know the pain she is in. It is very hard sometimes to continue helping someone and to support someone who is stuck in themselves. I fear when we have a child that I will be taking care of my wife and our kid.

I know this all sounds horrible of me and I really am not a horrible person. I love her with all of my heart and there are many times when she thanks me and is appreciate and apologetic of the way she acts. It is just so hard to hear that I accepted this and therefore shouldn't be upset about it. I accepted her as a person and the disease that came with her but, that doesn't mean I can't be upset by it.

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#252253 - 05/16/13 09:51 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
JenInCincy Offline
Registered Visitor

Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
It doesn't sound horrible. You are obviously not a horrible person, but a caring and concerned one. You are in the middle of a messy, complicated situation so naturally you have complicated feelings (and yes, you do have every right to those feelings!!)

I would strongly recommend that you not have a child together until you can get your relationship/health issues to a more even keel, and sustain that for a while. If you aren't able to do that as a couple, having a child could be the beginning of the end. It brings many many more challenges, responsibilities, and conflicts that can push a couple apart if they are not reasonably well grounded when they decide to start a family. I should know, it happened to me.....
_________________________
Jen, 42, happy partner of James and Moma to Evan, 14, & Lucy, 12.5 (Crohn's dx @ age 3; on Remicade since April 2010.) I take piroxicam, Flexeril, & Nucynta ER nightly. 3 anti-TNFs didn't pan out for me.

"Science is the father of knowledge, but opinion breeds ignorance." -- Hippocrates

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