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#198782 - 02/21/11 07:09 AM Both Spouses/Partners with Disabling Diseases
AmyE Offline
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Registered: 02/17/11
Posts: 11
I'm wondering if there's anyone else out there in a marriage or relationship where both people have disabling diseases. I have AS and fibromyalgia. My husband has Primary Progressive MS.


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#198821 - 02/21/11 02:15 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
One member here comes to mind right off the bat. sequoia has AS, MS, myasthenia gravis ... her husband has RA. She typically posts in the main member forum. If you post this up there I bet she will respond, probably others will too. Sorry you and your husband have so much on your plates.
_________________________
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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#198826 - 02/21/11 03:11 PM Re: Both Spouses/Partners with Disabling Diseases [Re: JenInCincy]
AmyE Offline
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Registered: 02/17/11
Posts: 11
Thank you Jen. I'll keep an eye out for sequoia.

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#208708 - 05/22/11 05:11 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
diehardhusky11 Offline
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Registered: 05/01/10
Posts: 1760
Loc: Seattle, Washington, USA
We both have disabling diseases as well... How are things going?

H.
_________________________
1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."

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#208835 - 05/23/11 06:54 PM Re: Both Spouses/Partners with Disabling Diseases [Re: diehardhusky11]
AmyE Offline
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Registered: 02/17/11
Posts: 11
Hi diehardhusky11. Thanks for asking. We've done pretty well for many years, taking each progression of DH's disabililty in stride. But recently I've been having a lot of uncontrollable pain, and vision problems. Stress is mounting, so things are a bit (that's putting it mildly) tense around here. I'm needing a break!

How are things with you and your spouse? If you don't mind sharing, what are your diseases? Have you found any coping strategies that work well?

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#208973 - 05/25/11 10:25 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
diehardhusky11 Offline
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Registered: 05/01/10
Posts: 1760
Loc: Seattle, Washington, USA
Hubby has a bad hip and has had several surgeries (not just the hip, but elbow, foot, and so on).

Mine -- RA, AS, Fibro

We take turns in doing household chores... But lately, I've not been able to do anything. I have called my mother to take me to doctor's appts. That's one break for my hubby. I also asked if my mother would do some of the chores... and also be my "maid" since it's hard for me to go from one room to another.

The stress -- yes, had been mounting up big time for 3.5 months recovering from an hit and run from a car -- I'm still a long way from recovery. My hubby had become fed up lately and so I have called my friends and family if they can do something to make it easier on my husband.

Basically, communication is the key to keep our relationship in where it's supposed to be.

H.



Edited by diehardhusky11 (05/25/11 10:28 AM)
Edit Reason: not finished
_________________________
1998-2004 Rheumatoid Arthritis, remission 2004-2010, March 2010 to May 2014 (RA, AS, Inflammatory Arth, PsA) Enbrel user-use 25 mg pre-mixed 3x a week.(pre-mix has no latex)(Allergic to "Sure Click Enbrel"-has latex) Remicade June 2014 to current (Grandfather had AS, PsA) "We will intuitively know how to handle situations which used to baffle us."

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#220009 - 10/22/11 06:38 PM Re: Both Spouses/Partners with Disabling Diseases [Re: diehardhusky11]
Artsychicks Offline
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Registered: 10/22/11
Posts: 3
Loc: Indiana
My spouse has AS, Complex PTSD, Major Depressive Disorder and just became cancer free. I have DID, PTSD, Legg Calve Perthes Disease and Osteoarthritis. We have our good days and our bad. Jesse is on disability and is trying to learn ASL to become an interpreter. I start a new job in November after being on disability for several years. She goes through horrible flares of pain and has used MS Cotin ER, Percocet and Loritab to try and control the pain. She was just diagnosed in September with AS and actually had to diagnose herself at first. She had tons of what seemed like unrelated symptoms and after putting them all together on the internet she came up with AS. We went straight to the Dr and all of the tests proved she had AS. We definitely learned when dr's don't do anything or don't listen to push! It's how we found her kidney cancer and why we found it at Stage One.
She spends a lot of time feeling guilty that I take care of her so much but, I love her and that is what spouses are for. I married her in September 2011 after she was diagnosed and I knew quite a bit of what to expect. I love her with all of my heart. It gets hard sometimes because with my wife, our animals and our plan on me getting pregnant soon there isn't much time for me. It's a great way to not have to deal with my own stuff but, not the most healthy method! We talk about everything and communication is key! Whether it is about our sex life, children, her pain, her medications, my medications, etc... COMMUNICATION is key!

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#225681 - 01/19/12 12:40 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
marvsgirl Offline
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Registered: 01/31/07
Posts: 149
Loc: Georgia
It makes it hard when the one you rely on is the one that gets sick. I have had AS for most of my life and my hubby and I will be married 50 years in July. He has nursed me through countless flares a hip replacement as well as a shoulder repair. A jam up and jelly type person. Last July he was unloading gravel out of his pickup and misstepped and fell backwards out onto his left shoulder he seemed ok, but after a few days it was bothering him so we went to a doc in a box and they xrayed it and they found a shadow on his lung. After biopsies and scans he has small cell lung cancer. He had not the first symptom. He has has 4 cycles of chemo, did fantastic, not sick once,lost his hair but he is cool with that. He had a follow up PET scan 1/4/12 and the tumor had shrunk only about 1 centimeter. It did not help that his Doc said she was disappointed it was not smaller. So since he can have so much chemo at one time he is to wait until 3/6 to get a CT scan to see "what its doing". In the meantime all the stress has me in painville and the depression is much worse in the meantime he is doing his thing,by working in the shop ect. He says whatever will be will be and I know that is true, Everytime I look at him I tear up and that makes him sad, and that is not good for him. I think I just wanted to talk. Thanks for listening.

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#225688 - 01/19/12 02:08 PM Re: Both Spouses/Partners with Disabling Diseases [Re: marvsgirl]
JenInCincy Offline
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Registered: 05/19/08
Posts: 13279
Loc: Cincinnati, OH
I can't offer any advice, just wanted to say I am so terribly sorry that your husband has been hit with such an awful illness and that the chemo didn't do much.

Of course he is right, whatever will be will be, but it's natural for you to be sad that he is sick, and to worry about the future. I know you don't want to stress him but I'm sure he understands that you cry because you love him!

Let us know how you both are doing now & then, OK? I will be hoping for the very best for your husband!
_________________________
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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#228572 - 03/01/12 06:11 AM Re: Both Spouses/Partners with Disabling Diseases [Re: JohnAden]
AmyE Offline
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Registered: 02/17/11
Posts: 11
Wow, I can't believe it's been a year since I was on this list. And what a year it's been. For the past few months, DH has been in a nursing home because I cannot handle all his care at home. It's been a serious adjustment for us, mostly negative. Our relationship has suffered a lot. But we love each other and we're hanging in there. I'm facing shoulder surgery in 2 weeks, and don't have anyone to take care of me while I recover - he couldn't have helped even if he was still living at home. At least I know he would help if he could, and that means the world to me, but it's still scary facing this alone.

Artsychicks, good job with all the self-diagnosis. It's unfortunate that so many of us have had to do that for ourselves, but I'm always thankful that we have internet access and the ability to do the research ourselves. A generation ago, that wasn't possible! Any news on the pregnancy front? Keep us posted!

marvsgirl, please keep us posted on your DH's progress, and your own. I hope the stress isn't affecting you too badly - although I know it probably is. Hang in there.

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#233312 - 05/15/12 04:28 AM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
tiabird Offline
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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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#252427 - 05/20/13 08:46 PM Re: Both Spouses/Partners with Disabling Diseases [Re: AmyE]
AmyE Offline
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Registered: 02/17/11
Posts: 11
Artsychicks, I hope things are getting a little better for you and your spouse. Until she can internalize the difference between "I am disabled" and "I have a disability", she will have a hard time. There's more to her as a person than solely her medical problems. She may find some comfort in having you remind her why you fell in love with her in the first place, especially if whatever those things were are still possible now.

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