Caregivers, how do you do it?

[zolar16]

Let me start off by saying I have been with my husband for 10 years and married to him for 7. We love each other more than anything and have had a flawless relationship up until the last year.

My DH was diagnosed with RRMS almost 4 years ago, a month before our son was born. Since then I have been laid off from my job and we are sticking to a tight budget so I can stay home. The poor guy comes home from his stressful 50-60 hour a week job with severe fatigue, but he rarely complains and tries to keep positive. I don't know how he does it. When he isn't feeling well (stress, fatigue, the heat is getting to him), I push him to relax and rest and take care of himself. I am trying as hard as I can to not worry too much about the future and to make sure we all care for ourselves and try to live as normal a life as possible.

I have a few problems that I can't discuss with my friends or family because they don't know what we're going through. I get frustrated sometimes when he's too tired to help me, even though I know it's not his fault and he wants to do his share. But our little boy is 2 1/2 and keeps me busy all day, and sometimes I feel like I am doing all the work (especially on weekends) even though I'm not. It's irrational but it gets to me sometimes.

If he starts to have any signs of an exacerbation or pseudo-exacerbation, I panic. I stay calm on the outside but I'm a bundle of nerves. My imagination runs away with me and I start to worry about when he'll get worse. He's in a drug trial right now and the medication is killing his stomach and he's faced with either having the side effects or going back on Avonex, which would cost an arm and a leg on our crappy insurance, made him sick every week, and I hated giving him his shot (he's afraid of needles and can't do it himself, no matter how hard he tries).

Finally, we're both in our 20's and we have a great sex life, but I'm worried I'm not as attracted to him as I used to be. He is still sweet and handsome as ever, but he gets tired so easily, and I find myself thinking that if he had more energy I wouldn't have this problem. I feel absolutely awful about it.

So what do you do, other caregivers? Any tips or advice?

[lovebeingmommy]

Hi
My husband was diagnosed when I was 5 months pregnant with rrms.

He also works a lot of hours in a stressful job. The heat also bothers him.

I am now a stay at home mom.
Fatigue bothers him some too. And I too sometimes feel like I am taking care of our 11 month old by myself.
I also get very worried if he has any signs of a relapse. I think we all tend to look at all of the negative things. I worry what he will be like when he is older. What will we do if he can no longer work. Believe me evry single negative situation has crossed my mind.

So as for the medicine. He is on Copxone and he is doing great with it. He too hates needles. I do not know if your insurance covers this? If so, and of course if the dr thinks it is right for him you could look into this. My husband has no side effects, does not get sick like I have heard Avonex makes you, and it is a much shorter needle just goes under the skin. He had no new lesions at his last mri and his brain lesion shrunk.
I had gest diabetes and ironically my nurse practioneris also
The np at the neurology office where he was diagnosed.

She said to me one day that if all of the stress would get you anywhere in life then stress. But it gets you no where. It can leave you tired and depressed. Which leads to my next point on the sex life. Possibly all of the stress is impacting your sexlife?

Having a child is exhausting too and add that to an MS diagnosis and the world cam seem impossible at times. I have had somevery bad days.

A few thoughts:
My husbands neuro told him he does not ever think he will be In a wheelchair. He is also in his 20s and being diagnosed so young he may not have an exacerbation for years. And if he does we call the dr and he will help him.

For energy he exercises. He just completed p90x and now he lifts weights 3x a week and cardio 6x a week. He might feel too tired to exercise but it will give him more energy.

For diet he eats a lot of protein. Has a lot of chicken. Takes a viramin D supplement. Fish oil with evening primrose. Multivitamin and alpha lipoic acid. Lots of water and fruits and veggies. He does not smoke and is probably healthier now than ever inhis life.

There are MS support groups or you could start one. I have considered going to a psychologist.

I know a lady with MS and you would never know she has it. She is 60 and takes no medicine

I think we think about the worst and my philosophy is why stress because everyone has a different outcome with MS. In 50 years when they are still doing great would you want to have libed stressing everyday of your life?

Take it day by day. Get out. Exercise together. Keep checking the message boards. Ask about the copaxone and keep positive. It will make you feel better!!



You husband may be stressed too which may add to his fatigue.

[Razgo]

after 20 years of marriage and 15 of those caring for my wife 24/7 and 8 of those years feeding her via a tube as a result of her MS has not altered my love for my wife or how i fel about her.

You either love your husband in sickness and health or you don't.

When you love someone regarldess of their condition be it bad good up or down you act out of love and just keep going.

I once fed my wife 1/2 teaspoon of water at a time over a 3-4 hrs in the morning and the same again in the afternoon just so she could have enough water for the day.

i did that 7 days a week for over 3 years. I never complained once. You just keep going until something changes.

thankfully 7 years later after having a NGT tube and now more recently a PEG tube she no longer starves and is very healthy again today.

my point is you never know when things will get bad so i try and live in the "now" rather than worry what might or might not happen and deal with each thing as it comes a long one thing at a time.

having a baby in the mix will certainly add to stress but it won't change anything.

So i found i had to adjust my outlook or attitude in life to cope better with the dramatic changes.

russ

[skyeblue]

Razgo you are amazing!

[kif8skip]

Razgo you are amazing!

agreed !!

[Razgo]

well i don't know about amazing but you have to do what you have to do because every human being counts and what you do every day counts no matter who sees it or not.

It certainly does build stamina and the ability to stay focused for extreme amounts of time.

It’s all about breaking things down to its smaller components in your mind rather than trying to take in the whole picture at once and have a heart attack.

Someone once said to me “you know you have been doing that for nearly 4 years now”?

at the time I had no idea because my focus at hand could only be centered around what was in front of me and nothing outside of that mattered.

My wife has courage I have never seen before to go through what she went through.

My wife definatly falls in to the amazing category for sure! It’s hard to believe sometimes what human beings andteh human spirit can endure at times!

[chocoholic1976]

Caregiver Support

What do I, an MS wife, do to support myself?
*Watch cheesy movies when he goes to bed early
*Exercise regularly
*Sometimes go out at night without him
*Be kind to him no matter what while making sure that my voice is heard
*Bake myself cookies or brownies
*Go to MS support groups
*Go to individual counseling
*Read other self help books
*Go to other self help groups
I am the financial provider for us. We didn't have kids because of MS. Even with working full time and coming home to do more physically, there are many things we caregivers can do to focus on the positive.

[3uph0riabunnyfac3]

Razgo, you are amazing. DH and I both nearly cried...good for you. Your wife is a lucky woman

[Razgo]

Thank you , i do the best i can and just keep focusing on trying to get her better health.

the next step is to move away from city life and into the country. that always makes her smile as she likes the country.

so we wait and see if I can make it happen. fingers and toes crossed