problems with un-caring spouse

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

MSWorld caregivers chat room

Postby prairie » Fri Jun 25, 2010 6:27 pm

See if your husband would go to the Wednesday night chat room for MS caregivers on Msworld. He can chat with other caregivers of MS patients who will understand what you and he face and he can learn that others have similar challenges and emotions. This difficult.
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Postby garyak » Fri Jun 25, 2010 7:10 pm

Fatigue is one of my worst symptoms. My wife gets it because she loves me and cares . She tries hard to understand my symptoms and insists I hold nothing back - I am a lucky guy.
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Postby CureIous » Fri Jun 25, 2010 8:06 pm

All this great advice and insight from those who've been there. Thought I'd toss in my paltry offerings from a male perspective, though it's obviously more complex than a simple linear equation.

Guys like to fix stuff, it's in our nature. When we can't fix stuff, we can at least figure out how to do it ourselves, or know what course to take to have someone else do it. When we are lost, we don't need maps "cause we know where we are going". Of course few of us stop to ask directions, that would be admitting defeat, and we HATE to admit defeat. We'll just double down our efforts and conquer the beast. We like to conquer things, it's in our blood. Sometimes it's a blessing, and sometimes when unbridled, can be a heavy weight hanging from the neck.

He may not admit it, but to echo the other commentary here, he is furious at the disease, which I think all of us go through at one time or another. That is healthy, being angry at things that rob us of our life and vitality is a healthy, normal reaction, but when that anger/passion/rage morphs into a runaway freight train, when it is unchecked, i.e. "dealt with", that's when it becomes a major problem. Even Christ got mad at the money changers and took a whip to them, but he made his point/statement and then moved on. Obviously I'm not suggesting violent avenues here but you get the point.

I know I got tired of trying to reference my fatigue as the schedule-builder in my life, but found that it helped even within my own family to put it into an easier context and/or frame of reference that people could visualize. Since everyone knows what an all nighter does, or long day at work, or exhausting physical labor, or being up with a baby til the wee hours, I usually start there. Then try to explain that all those things can be overcome with sleep/naps/vitamins/caffeine, whatever, and it is a temporary situation.

With fatigue I explain, it's like someone strapped 100 lb. weights to your arms and legs, and all the sleep in the world, all the vitamins in the cupboard, all the caffeine at Starbucks don't remove those weights, in fact most times the above make things worse not better, but at least for me the napping was a way to escape the misery, better to be miserable and asleep than awake, knowing that upon waking, it would start all over again anyways.

Of course now we understand how ccsvi may play a role in all of that, and in fact caffeine is probably the WORST thing one can do, sleeping on a flat bed only EXACERBATES the lack of blood flow, and vitamins are vitamins, they can only do so much, plus, in a cruel twist of fate, it's exercise/movement that HELPS us with our blood flow and to pull that blood out of the brain, NOT laying down and "resting". Wish I had known or understood that or I would have never started napping two years ago! Only felt worse every day! All the provigil did was make me feel mentally hyper, didn't do a thing for my energy levels. Given the condition of my vein output at the time, gee no wonder!


I know that's not all that much help, but just understand that most us guys cannnot deal with things we have no control over, and cannot fix, perhaps that would be a good spot to start with him if I may speak out of turn. Feel free to pm any time if you just need to talk about it, we're on your side!!!

Mark.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Re: problems with un-caring spouse

Postby NHE » Fri Jun 25, 2010 11:34 pm

Here is how I describe fatigue...

NHE wrote: ...this is what MS fatigue means to me. I have several friends that know I have MS and ask me how I'm doing. If I say that I've been really tired all the time, I typically get a response back that they are tired too. I know that they cannot understand an "MS tired" as they have never experienced it. As such, this is my analogy. When I was better fit I used to ski quite a bit (my favorite runs were the steep double diamond runs that required turning down the fall line, oh, and any resemblance of powder when we would get it). The first day of the season always wore me out. I would ski as many runs as possible to maximize my (run)/(lift ticket dollar) ratio and use muscles that I hadn't used all summer and fall. By the end of the day, I could barely walk and would be unsteady on my feet and everything from my back down to my feet ached. It was a good ache and I soon bounced back and subsequent ski trips were not as tiring. However, with MS, I now feel like I've gone on that first ski trip of the season almost every day.



Here's another thread on fatigue that may be useful for you with some helpful suggestions.

http://www.thisisms.com/ftopicp-73412.html#73412

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Postby costumenastional » Sat Jun 26, 2010 3:13 am

get rid of him. the sooner the better. a child is no reason to take crap from anyone. this situation can only hurt you. try to find some peace of mind whatever it takes.
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Postby zinamaria » Sat Jun 26, 2010 3:38 am

Andie,

I am so sorry for your situation with your husband who is clearly not handling his emotional life and the situation he is in with your MS. Blame comes from anger, anger comes from immature emotional development, especially when he is using this devastating illness against you! Yes of course MS involves family and those around us, which is precisely why we need to be surrounded with positive, caring, loving energy, not reactionary angry people.

You stated 'I am at my wits end' and this is exactly where you should not be, at the 'end' of anything. For to let the candle burn down to a place where you feel you lack resources to handle your daily life (like energy from napping necessarily to not collapse from fatigue), to keep your tranquility and manage this disease, in our situation, with this potentially fatal disease, is nothing short of suicide. Stress is a MAJOR factor in relapses and you are stressed right now.

I know this sounds extreme, but it is YOUR life you need to save, and your childs, not his. He is an adult and needs to take responsibility for his own life, including his emotional world, and taking proper care of his family so that his wife does not put herself in a position of 'being at her wits end.'
I say this because I personally feel that all toxins, including the emotional ones, need to be cleared out of anyone's life in general, but most especially in anyone living with illness, with a disease such as MS. If he cannot find it in himself to change, he is toxic for you.

That you have a child does complicate things, but as Thomas mentioned, there are many alternative ways to live with a child and get support and love. It obviously would not be easy to just 'toss' your husband out, and certainly if you could at least get him to counseling in order to deal with his anger, to not lash out at you, and to grow to a place of support with each other, this would be best.
But truly, if you want YOUR life to be well in order to be around to raise your child, then I would examine what is keeping you from considering how to manage without your husband (if there are no changes).

I wish you much strength and courage; warriorship is not easy, but to take abuse is not an option either. His blame is abusive and it must change for you and your child's sake.

I keep you and your family in my thoughts,
Zina
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Postby Nasti » Sat Jun 26, 2010 5:15 am

Andie, i am sorry for what is happening to you, but you are not the only one, my husband acts in a similar way. We got married 2 years ago, I got pregnant, we decided to get married, he KNEW I have MS and I thought he knew what it was like for me when I have relapse because I explained it very vividly, but obviously he didn't and still doesn't.
We fight mostly when I have relapse and am unable to do my chores. He helps around the house, but when I have a relapse he tends to say that the chores are my responsibility, ironically not when I am ok. He gives remarks like "You are lying around all day long" or "You should clean the house" and similar stuff. I told him that I am sick of him and of those lines, and when I finally got him to talk to me, he said that he doesn't even consider my disease, he simply ignores it and goes only with the line "you are ok". Obviously, I get no compassion from him. His reasons are deeper, family and stuff, passed away father and mother obsessed with cleaning, but I only asked him to be sympathetic and try to understand what I am going through. He has never asked what a symptom feels like, or what does it feels like when I am tired, or stiff, or tingling or whatever symptom that I have. There is a saying in my country: the healthy never believe the sick, and it is very much true. I think I am only looking for recognition and acceptance of what I am feeling. He said, quote "I don't understand, i don't want to understand, I don't want to admit that you are sick, I don't want to know about MS, I think you are obsessed with it, I don't want to live with MS." He cannot confront the truth, he doesn't want to accept the fact that I am sick. The talk was futile. At least I am not wondering anymore why he is so cold and indifferent to my condition. He doesn't want to hear about doctors and similar stuff... The things that I can't do when i have relapse are done by my family, mom, dad, sis. We live close to them so that they can help.
My ray of light is my dad - he really understands me, protects me and tries to help me every way that he can. He took me to my CCSVI procedure, not my husband. He does everything in his power, but mostly, he understands. This also causes other problems, i think that this is the reason my husband hates my dad, but I can and will never leave my dad, but I am getting close to leaving my husband. I can freely say that he has caused 50% of my last relapses by his behavior and I think I can't afford much of that longer.
So, that was my story. My advice, if i can give one at all, find a rock in your life, a parent, a friend, a sibling, and prepare yourself that some of these days you might just have to leave him. He is not worth it, we have only one life burdened with a disease, another disease (idiot husband) is nothing you should fight for. Me too. Just waiting for the day...
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Postby Rieja » Sat Jun 26, 2010 6:24 am

I'm a high believer in counseling. It saved my marriage. The only stipulation was that your partner has to go as well. Separating was the last resort. As a male, I looked at counseling as a way to solve "the problem". When looked at in that light, it made it easier for us to see someone.

Males do like to fix things. When we can't we get frustrated and mad. And that is a curse :(

First step though is to get the family all on one side... then fight the disease (hopefully through CCSVI procedures).
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Postby soapdiva884 » Sat Jun 26, 2010 6:29 am

I wanted to add that when my Bf is MS tired, all the time. He uses the 6 pack analogy. I am not sure where he read it, but it is so true.

His saying is we all run on a 6 pack, but most days he runs on a half bottle and sometimes less! I like the way this helped me to understand what the fatigue was for him. It helped me in more ways than you can imagine. I just could'nt wrap my head around how fatigued he was until we started using the 6 pack analogy.

I hope this helps you too. As for putting up with verbal and mental abuse---DONT DO IT! You are so much better than that!
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Postby lyndacarol » Sat Jun 26, 2010 6:40 am

As the person in my marriage WITH the disease, I appreciated hearing from the caregiver side. Codefellow offered such a thoughtful response! Was Code always so wise and thoughtful? Does this disease teach us these desirable traits, if we are open to learning?

Obviously, the people at this website DO want to learn -- not only about the mechanics of the disease, how to overcome it, but how to deal with it graciously; in so doing, I think we can grow and become better people all around.

Andie, friends here have offered better ideas than I have; I can only remind you that you and your spouse married because you loved each other, I assume. I hope you two can communicate, rediscover and build on that foundation, try to remember those things that drew you to each other in the first place. Seek help; there is no shame in needing help; this is not an easy journey. We can all use prayers; you are in mine.
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Postby PCakes » Sat Jun 26, 2010 7:51 am

..it was a beautiful day so we took our sweet dog out for a walk..along the way we passed a tennis court.. my partner started to say.."i sure miss..." but to spare my feelings stopped.. "i said ..i understand ..it's okay to feel that way" and we walked on.. we all want our lives back.. and we will!! ..I truly believe this..
Andie, do you and your husband have good days too? ...
My favorite wish.. I wish you 'enough'.. 'enough' good to get through the bad.. take care..
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Postby Cece » Sat Jun 26, 2010 8:15 am

A strategy that I came up with and that helped me was to have a 'red alert' type code. He thought I was always struggling and always needing more and he'd begun to turn a deaf ear to it! This was when we had three small kids, all pre-kindergarten, with me as stay-at-home mom and him working long hours. So with the 'red alert' I could say 'today is not just a tough day, today is a nuclear day, help help" and he'd drop his work at quitting time rather than keeping at it and come home and do it all. It took about once of doing this to win some ultimate gratitude!! It's all in the timing, it was so needed...and he was shocked that a 'red alert' day came only about once a month, he'd been feeling it was much more than that, but he didn't understand the difference between a tough day and a tougher day and an OMG day.

Another thought is: maybe you could use some help from a cleaning service or a friend or family? MS is hard....

And Pcakes, I really liked what you said there.
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The Beer Theory (and The Spoon theory)

Postby Hope66 » Sat Jun 26, 2010 11:36 am

Hi Andie...

So sorry your family is having a tough time.

I think these "theories" may help explain to your hubby what MS fatigue feels like, and what it's like to live with it. And they're both pretty entertaining to read!

The Spoon Theory
http://www.butyoudontlooksick.com/artic ... serandino/

The Beer Theory
http://multiplesclerosissucks.com/beer.html

good roads,
Hope
-----------
Dx March 2003
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Postby elyse_peace » Sat Jun 26, 2010 11:53 am

Andie -
I'm sorry for your situation. It seems from what you've said, that his mind is CLOSED pretty tightly. :( This is not the life he wanted, envisioned. Well, heck, it's not your CHOICE either! His insistence that he does not want to know about your illness, or even that you have it, is awful.
Like a child, he is saying NO NO NO NO NO. it sounds to me as though until he decides to be your REAL PARTNER, you will have work beyond your illness and housework to take care of.
You and he and your child are in my prayers. I pray that he chooses knowledge.
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Postby Nasti » Sat Jun 26, 2010 1:02 pm

nice explanations these spoons and beers... it is nice to know how to address it, my statements are always 'it's not my day today' or 'I don't feel as I should', I guess aren't as explanatory :)
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