Spouses of people with MS --coping--

[pooh4evr]

Some of you may remember Dh was diagnoised in April with MS right now they are calling it RR- which is good i guess- he was in the hospital for a week after his Diag. and has been on Avonex since Mayish - he has been having problems again - his right arm adn leg have been burning - he did IV steroids a few days last week to see if it would help which it did a bit but the pain is still there--
Anyways I guess with the 2nd flare or wahtever it just seems so much more reall thea this is no going to "go away" How do you and your spouse deal with it, talk about it - I get so mad it is so unfair - I just want to scream and hit stuff I guess I don't want to face it - it seems as though everyuthing we have worked for or wanted for us and our girls in the future is being taken away by this stupid disease!

Well any help or words of wisom would be greatly appreciated things that ahve worked for you diet, exercise meds anything!

Thanks
Stephanie

 

[minkydog]

I don't have words of wisdom, just a ton of sympathy. My DH has been disabled now for 5 years with a lung disorder--not quite the same thing, but I have a lot of the same feelings as you. It's *not* fair! It's NOT! It isn't fair that our lives have been upended but something that we didn't deserve and did nothing to bring on. I don't like the fact that we have no spontaneity now. And that this lung disease will surely rob me of my spouse and my children's father. I'm mad as hell about it! ITs NOT FAIR!

All I can tell you is take it one day at a time. There is a certain grief you will have to work through together and separately. We don't talk about it all the time, but we do talk about our feelings. We talk about death a lot more than other couples do. Several years ago DH made the decision that he wanted to live his life as fully as he can. His attitude makes my job as a caregiver better, though not easy.

Hugs to you. It's just as hard on the caregiving spouse as it is on the person with chronic illness.

 

[SueM in MN]

I don't have any words of wisdom either.
My oldest DD is dealing with the same thing you are, though. She and her DH are in their 20s and he was diagnosed with MS as a teen. She knew he had MS when they started going together, but she said, she already deals with a sister who is disabled, so she knows that life isn't always fair.
He is in a flair right now, but has started on a drug trial and is doing well again.
I know he is trying to eat healthy and is trying to get on an exercise program. Even if it doesn't actually help, it makes them feel like they are doing everything they can (and it certainly can't hurt).

 

[BETTYDISNEY]

Some of you may remember Dh was diagnoised in April with MS right now they are calling it RR- which is good i guess- he was in the hospital for a week after his Diag. and has been on Avonex since Mayish - he has been having problems again - his right arm adn leg have been burning - he did IV steroids a few days last week to see if it would help which it did a bit but the pain is still there--
Anyways I guess with the 2nd flare or wahtever it just seems so much more reall thea this is no going to "go away" How do you and your spouse deal with it, talk about it - I get so mad it is so unfair - I just want to scream and hit stuff I guess I don't want to face it - it seems as though everyuthing we have worked for or wanted for us and our girls in the future is being taken away by this stupid disease!

Well any help or words of wisom would be greatly appreciated things that ahve worked for you diet, exercise meds anything!

Thanks
Stephanie

While I am not a spouse of a person w/ MS, I am the spouse w/ MS. I HOPE THAT MAKES SENSE !! I was diagnosed when I was 26 yrs. old and I am now 40. My MS started as RR for 11 years and in 2005 it progressed to where I am now paraplegic. My DH has endured all the good and bad w/ me with the utmost patience and love. Although he does not tell me, I am sure he has thought how utterly unfair this disease can be not only on me but on him as well. I understand the feelings of having your future and plans taken away. I guess, the real advice I can give you is try to live each day to the most and takes things as they come. I know that might sound like a cliche but in the end you really cannot predict or control the future. I have learned that the hard way. You learn to deal w/ things as they happen. At first I could not tolerate the idea of having to use a cane, let alone a walker and now a power chair. Remember this disease is very unpredictable so what happened to me might not happen to him. If he started treatment early he has a better chance.

Remember to take care of yourself. It will do him more harm if he sees you not taking care of yourself.

If you have any questions about anything please ask me.