Monday, November 5, 2012

When your spouse has Multiple Sclerosis: 10 things you should know




1. You are going to cry.  That is okay.  When you are in the car at a stop light and it is pouring rain outside and your life feels like it is caving in...feel free to cry.  You will feel better afterwards.  You will pick yourself back up.  And you will be stronger for it.

2. When you feel like things cannot get any worse, remember that your spouse feels those feelings 10x more than you do.  When you are feeling helpless, remember that your spouse is feeling 10x more helpless than you do.  When you feel tired and fatigued and emotionally raw, remember that your spouse is feeling that way 10x more than you do.  And have compassion for them--recognizing that you only have a glimpse of what they are feeling. 

3. You are going to feel angry.  You are going to wonder if God is punishing you.  You are going to feel like you and your spouse don't deserve an incurable disease.  It's okay to feel that way, just remember that you won't always feel that way. 

4. Don't be scared.  You will be afraid, sometimes so afraid of what life has dropped at your doorstop that you will want to run away.  Just remember that you have a choice--you can either be scared in the dark and shiver under the covers, or you can turn the lights on and face that monster under your bed.  

5. Let others take some of your burden.  Call a friend or family member for a shoulder to cry on.  Accept a meal or babysitting.  You are never alone if you allow others into your life.

6. Be glad to make sacrifices, but remember to take care of yourself as well.  Take a bath, read a book, work on a project that you have been wanting to do in order to feed yourself first.  You won't have anything to give if you are depleted.   

7. Try to keep any negativity that you might feel away from your spouse.  Their heart is aching with vulnerability, and if you add to that with your worries and negativity, you are only going to hurt the both of you more.  This does not mean that you cannot let your worries known to them, but it does mean that being positive rather than negative the majority of the time will surely do more good. 

8.  Fight.  Participate in the MS Walk.  Raise money for the cause.  Rally your friends and family members to join you to help find a cure for this disease.  Getting involved will not only empower you, but every little bit of effort gets us all closer to our goal to stop MS from taking anything more away from us. 

9. It's not their fault.  It's not your fault.  It's no one, not even anyone from Above's, fault.  It's just life.  We are human.  And we are here on this earth to stretch and grow.  MS can help us all do that.  It does not define us, but it can mold and shape and give meaning to a life that might not otherwise have been given this type of opportunity. 

10.  Put the fear aside. Fear is the opposite of faith.  Waking up every day wondering if this will be the day that your spouse loses all ability to walk is not the way to live your life.  Instead, be grateful that every day--you get to live your life with them.  


*This is probably, most definitely, one of the hardest posts I have ever written.  But I hope and pray that someone needed to read it just as much as I needed to write it.

31 comments:

Stef said...

You both are amazing!!

Amy said...

It was hard to read too. I hate trials. Some people say they're thankful for theirs. I honestly don't like some of mine and I don't like this one for you and your family.

I'll know where to turn for advice should this terrible disease affect me, my family, or any of my loved ones. Thank you for being so brave and sharing this.

Aimee said...

Thankful to be walking along side you and your great family on this dang MS journey.

Anonymous said...

What do you think about this?
http://health.yahoo.net/experts/dayinhealth/surprising-link-between-ms-and-sunshine

Sarah said...

You're amazing, Carrie. Good job putting all that into words.
And that picture . . . wow. Even if I didn't know and love you guys I would love that picture.

annie said...

Love this.

Anonymous said...

My husband (38yrs old) started a battle with pancreatic cancer a few months ago. I needed this post, thank you.

Anonymous said...

Just came across your post for the first time and love it. I needed this so much today. thank you for sharing in such a personal way. It has touched people that dont even know you, like me:)

Leigh Spector said...

This was a needed post. My only thought was the negativity of the 'incurable ' reference. Have you looked into the Feeding Therapy? I have read and seen studies that show this disease is able to be cured or halted. I am on the plan now and believe strongly that my Vegan lifestyle has kept my symptoms at bay. Hope my note helps you too.

Anonymous said...

Thanks for this post! My husband has MS and is struggling through another relapse right now. I wholeheartedly agree that you must be thankful for each day you have with each other. Thanks again!

Leslie said...

Thank you for this post! I was diagnosed with MS in 2001. People forget that it is hard for spouses as well. My husband is a rock star when it comes to being a care giver, but they need support and encouragement too.

Anonymous said...

Thanks I needed this today. You seem to describe everything so well. I to live day to day with gratefullness. My husband has a hard time dealing with it. I know there are good and bad days but people like you make us smile.

Anonymous said...

My wife couldn't handle it I guess? Who knows she ran out on me. No explantion? ? ? ?SD

Tanna said...

So thankful for my husband and all that he has to endure with my MS. I promise to do my best to fight this disease and not let it take the joy out of life for us. I am blessed!!

Pati said...

In 2012 you wrote this post. You said it was one of the most difficult posts to write but that maybe someone needed to read it. Well now in 2014 my housband has been diagnosed with MS. He is 39. Two years after I, between fear, panic, sadness, strength and hope, I needed to read your post. Thank you.
How to go now???
Pati

Martha Flores-Olivas said...

Thank you for this & it brought me to tears.

auntnayna@yahoo.com said...

Layna is my name and chocolate is my game.
Thank you for this post. I am a MS wife. You were able to voice some very good, and common thoughts that we as the spouse share. We just welcomed our first grand baby at the same time as we are being introduced to a new MS complication. We take the good with the bad and we live and that's all there is to it.

Jennifer said...

Hello, my name is Jennifer. I can not express how much your blog as helped me. My husband was just diagnosed with MS. I felt so alone and lost when I came along your blog. And I loved reading your thoughts and feelings. It helped me deal with this and know that it is ok to feel this way. Thanks so much for your honesty.

Anonymous said...

Thank you for this post. As you know, it is a hard struggle. Your words are spot on. I wanted to let you know that. You have touched one more person.....and you are right.....we, none of us, are alone.

Anonymous said...

After 18 years of MS my lovely husband has had a huge relapse and has reached the wheelchair stage. This is so hard for both of us to deal with, you post is wonderful.

Thank you

Sally

Anonymous said...

My husband was diagnosed with MS a little over a year ago. I really enjoyed your thoughts and I can totally relate. My husband decided to create a website to help others continue in their faith it is called yetitrust.com. I hope that it brings encouragement to others as your site did to me. Thank you!

Julia

Kim Allen said...

Oh wow! This is right on target!!! My husband was diagnosed with MS 7 months after we married and I can relate to everything you wrote...if you don't mind I want to share this link! Thanks for the encouragement!

Anonymous said...

Thank you for your post. I was diagnosed 5 mo. ago. Your words have brought me encouragement.

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Ashley Kelly said...

As I am sitting in my bathroom floor to hide my tears tonight after my husband, for the first time since his diagnosis 5 years ago, mentioned to me what he wants, "when Ms is in control" my heart is broken and I feel so helpless. So hurt. So broken. He is my bestfriend. I needed to read this more than words can express. Thank you! <3

Ashley Kelly said...

As I am sitting in my bathroom floor to hide my tears tonight after my husband, for the first time since his diagnosis 5 years ago, mentioned to me what he wants, "when Ms is in control" my heart is broken and I feel so helpless. So hurt. So broken. He is my bestfriend. I needed to read this more than words can express. Thank you! <3

Kim Allen said...

Ashley how are you?

Kat Guillot said...

April 2001, our life was turned upside down. John was Dx with MS and I was told that he would be on a walker within 5-7 years and bedridden within 12-15 years. 15 years later, my husband is still walking on his own and suffers more from Gout attacks(diet!!) than MS episodes. We give God glory because His Word does not return void. John's attacks have slowed down significantly after he began seriously speaking God's word over his body and life. Its more than positive thinking...its speaking LIFE back into his body. We don't have a support system here and I am so blessed to have found this site and read this post. Today was a sit on the porch and cry day. Tomorrow will be better.

Fred Kennedy said...

Thanks for righting this.
I love her and it's just hard very hard the way it is.
Reading this helps.
Thank you

melindapurcell said...

Thank you.

Anonymous said...

Thanks you so much for sharing. My husband was diagnosed in 2016 but had already lived with MS for 11 years. #10 looms over my head like a black cloud every day and I have to make the voluntary and willful decision to give my husband every ounce of independence I can, while it's still freely his. I've attempted to blog about it, but every time, I just close the laptop because what I have to say isn't the truth, it's just raw emotion.

Lacynda
Famvb.wordpress.com

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