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at my wit's end- does anyone out there have a spouse who has no compassion for those with ms-- i've been told that I milk my illness. last night i got yelled at for going to bed instead of doing the dishes- although i had worked a full day- fed my child and taken care of her--sometimes I have no interest in caring on..

any advice? no i can't toss him- who will take care of my 7 year old child?

A

Hi Andie,
I'm sorry you have this problem & I can't offer any advice. I hope you have supportive friends and/or family close by. I think fatigue is something so obscure and many can't grasp the magnitude, but you have to listen to your body or you pay the price - we all know that. All the best for a better day.
Deb

Its possible I am entirely wrong in what I am about to tell you and your spouse is just a jerk, but, speaking as a care giver myself, I am going to give your spouse the benefit of the doubt for now.

There are some things you should try to understand about how MS affects those around you who care about you...

When you have MS, your whole family is affected. Not just you.

Sometimes it can be very hard for a spouse to mentally, emotionally, and logically separate you from the disease. Your spouse is mad at the disease. He is mad because he cannot fix it. He is mad because his whole hope for what, in his mind, a family should be, is not happening. He is mad because you got sick and won't get better. Yes, he most likely blames you for getting sick, (does NOT matter you could not help it...do not look for logic in an emotional response). He remembers what it was like before MS ruined everything. He remembers what YOU were like before MS. He is mad at you because he misses you.

Advice? There are support groups for care givers. Suggest he find one and in the mean time, try to be patient with him, even when he is not being patient with you.

I agree code, I see a lot of what you have said in my partner...the anger at the way things have changed. The spontaneity (sp??) seems to suffer the most when you have MS, everything has to be planned as fatigue and the way you feel seems to govern what you can and cannot do.

Thank you very much for trying to present the caregiver's side of the story-- for a longn time now i have felt his anger and couldn't understand why he was angry all the time and with me.

I muchly appreciate your advice- although very hard to hear.

Andie

Hey Andie-- so sorry for your situation. First off, I don't have MS, but my daughter (20s), does. She also deals with fatigue, and it is very hard as a mom to watch as she often doesn't have the energy to go out with friends and do what one is supposed to darn do when you're young! I have learned from neuros and from my own research that the kind of fatigue experienced in MS is unlike what other people experience as fatigue. I also think that many MS'ers are thought to "milk it", because their symptoms are hidden and people just don't get it.
I think that your spouse was way out of line for yelling at you when you needed to lie down after a busy day. He may well be frustrated too, but if you have that blanket fatigue hit, you need to rest. Yelling at someone for being tired is just wrong. I hope you can find some medical literature or a good professional to explain your fatigue to your spouse so that he can better understand it. It is true that MS affects the whole family, but in my opinion your spouse could show more compassion and understanding. BTW, why did he not do the dishes?

Leave him. Life is too short to be around uncaring people, and I don't think therapy will change him. You'll find help with family, friends or welfare programs. Good luck.

Andie--
I'm so sorry. Everyone has said it. He's not mad at you, he's mad at the situation. I'm a caregiver spouse, and I got so angry at MS, I tried to figure out how to fix it. (which is actually kind of silly, I know)

Take care of yourself. Rest as much as you can. Eat well, get sunshine, try to keep moving as much as you are able. Make sure to communicate about specific times of day you need to lie down, so he can be prepared mentally. Maybe let him read this thread, so he can see he's not alone.
I believe chronic venous insufficiency is the root of this terrible fatigue...more studies will be done, and I hope you'll eventually find some relief. Hang in there-
cheer

I am so sorry your going through this and you probably feel so alone right now. I too am a caregiver of an MS'er and I can tell you that it is one of the hardest things I have EVER done in my life. My bf is ppms and has been for about 3 years now. Dx'd in 2006.
What is the hardest for me? Watching him lose more and more of his independence and mobility everyday. Watching him lose his memory and having the hardest time finding words to speak. Realizing that I can't fix him and make this crap go away! Recognizing that our lives have changed and will forever be changed for the rest of our lives.
The simple things hurt the most for me, like not being able to just pick up and go at a moments notice. Having to plan every trip we take, even to the grocery store. Sitting at home doing nothing because he is so tired. Having to do the weed eating, push mowing, pool cleaning on my own. Carrying wood up the stairs every day several times a day in the winter to keep us warm by myself.
Having said all of that, I would NOT do anything in my life any different for the world! I don't care if John can't walk or talk one day, he is my life and I am here no matter what. He tried to give me the get out of the relationship free card years ago and upon alot of reflection, I refused to give up and walk away from him.
What I am trying to get at, is this MS crap does not just affect the one with MS, it affects everyone around you.......from family to friends. Your husband needs to understand exactly what MS is and he needs support from others that can listen to him when he needs to yell, cry, scream etc. I hold it together for John, but I will call my Mother and cry and break down when I need to.
Please try to encourage your husband to seek outside support. Whether it be a support group or a friend or family member that he can vent to. We as caregivers NEED to be able to get mad at the situation sometimes, we are NOT mad at the ones with MS. It just seems that way sometimes.
Huge hugs to you and your husband. If you need to talk, pm me I am here.

I have a difficult time saying who is right or wrong, and trying to understand what the care giver goes thru. I know my wife would like me to be the physically active person I used to be. SO DO I.

If our roles were reversed, I know I would be very angry, not with her but with this monster we call MS. I hope it would not come out as being mad at her. Wanting to fight but finding nothing or nobody to fight with. And wishing it was me with the MS.

My wife had a cancer scare a few years ago, I prayed that God would give me the disability not her. She is cancer free! I don't know that my PPMS is a response to that prayer; if it is, then I got what I asked for and am thankful. I do know that my MS is hard for my family. I am blessed by a having a wonderful wife and three great kids. I wish I could do more with them, but it just isn't possible. I don't know how they feel all the time, but can't help but think they must feel cheated, dissappointed, mad etc.

I have heard the statistics of marriages of MS'rs. It is not good, but I question how much MS has to do with it. You are still the same person you used to be ( I am still the person I used to be) just some limitations now on what you can do. Communication is the key. I don't want this to sound trivial because it's not, it is very hard. You are in my prayers today.

Jim

Not sure if this is going to help ...

Due to social stigma, my MS is not known to many people ...
For years people have told me that I am lethargic, dull, laid back, lazy, likes status quo ....

Back to your question, it might help if your Dr can speak with your husband and explain what MS fatigue means. Believe me, it would be really hard for someone w/o MS to even imagine what this fatigue can be ...

Thank you all so very much for your kind words and love and compassion- you truly do not know how much you have helped..

thanks
Andie

This is an interesting discussion, folks. For many care givers, it is not until they are able to compare MS symptoms to something that has happened to them can they truly empathize. For example, one female MSer explained to other females that MS fatigue was much worse that the fatigue she felt while pregnant, which made it much easier for them to understand. Of course, that example didn't help the male MS care-givers in the audience very much...
...Ted

I describe my fatigue like what someone might feel like if they hadn't been to sleep for 3 days in a row.

Most people seem to appreciate how that feels and they can understand what 'fatigue' means to me.

I think it's also important that you be as clear as you can with your boundaries and needs. I find people can deal with me a lot better if I'm clear on what I can and can't do, and if I'm quiet but firm in articulating my needs or how I'm feeling at any given time. They seem to be able to work around it much better if I'm clear.

I was in denial about my MS for a long time, it's even easier for a family member to be in denial because they're not experiencing the symptoms. A lot of it can't be seen, too. So I have to say *kudos* for working and taking care of a child, that's a lot for a healthy person and a whole, whole lot for a person with MS. I remember when my husband compared stories with a friend at work and then came home to tell me what his friend's wife was able to do and why wasn't I doing that much! I cried, he felt awful, we worked it out, and he hasn't done that again...but we're also further along the journey now, we're both better educated about MS and now CCSVI, and we both give each other props because we both do so much. Plus the kids are out of the baby stage and that makes it easier. Anyway, counselling is never a bad choice, maybe you need a safe place to tell him what you're going through and if he's angry a lot, there's no safe place...he might have expectations that are unreasonable...take care!