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.
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41 comments:
You both are amazing!!
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.
Thankful to be walking along side you and your great family on this dang MS journey.
What do you think about this?
http://health.yahoo.net/experts/dayinhealth/surprising-link-between-ms-and-sunshine
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.
My husband (38yrs old) started a battle with pancreatic cancer a few months ago. I needed this post, thank you.
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:)
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.
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!
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.
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.
My wife couldn't handle it I guess? Who knows she ran out on me. No explantion? ? ? ?SD
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!!
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
Thank you for this & it brought me to tears.
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.
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.
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.
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
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
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!
Thank you for your post. I was diagnosed 5 mo. ago. Your words have brought me encouragement.
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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
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 how are you?
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.
Thanks for righting this.
I love her and it's just hard very hard the way it is.
Reading this helps.
Thank you
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
I was diagnosed with Multiple Sclerosis (MS) in October 2011, at the age of 44. I woke up one morning with numbness in my lower back and legs, I couldn't feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to NewLife Herbal Clinic natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit NewLife Herbal Clinic official website ww w. newlifeherbalclinic. com or email info@ newlifeherbalclinic. com.
This treatment totally reversed my condition! I am strong again!
I was diagnosed in 2006 with multiple sclerosis, the only symptoms at that time were falling and legs hurting and moving all the time. I remember no symptoms at all until last year. I went into full seizure mode, I was put on Avonex. I had the symptoms of that medication every day for 13 weeks, I mean I was so sick every day. I stopped that medication and a few days later I was back to my normal self. Then a few weeks later I started having attacks every week and I was really bad. It's like one long attack every day. My upstairs neighbors cause me great anxiety every day. I have gotten a new neurologist and she started me on the Copaxone and I didn't know what to expect, I knew I hurt from when I wake up until I go to sleep.I lost touch with reality.I started on Health Herbal Clinic multiple sclerosis Disease Herbal formula in June 2017, i read alot of positive reviews from patients here in the United States on their success rate treating multiple sclerosis through their Herbal formula and i immediately started on the treatment. Just 7 weeks into the Herbal formula treatment I had great improvements with my Vision and coordination, my stiffed, rigid muscle had succumbed. I am unbelievably back on my feet again, this is a breakthrough for all multiple sclerosis sufferers, visit Health Herbal Clinic official website www. healthherbalclinic. net or email info@ healthherbalclinic. net.
I am a 64 year old female, I was diagnosed of Multiple Sclerosis (MS) in 2008 (MRI), my symptoms started out with severe fatigue, poor balance, numbness, double vision, heat intolerance and anxiety. I was unable to go back to work, I tried Betaseron for about 6 years. Tried every shot available, all made me sick.
In November 2015, I started on Multiple Sclerosis (MS) Herbal formula from NewLife Clinic, the treatment worked incredibly for my MS condition. I used the NewLife MS Herbal formula for a total time period of 4 months, it totally reversed my Multiple Sclerosis. I had a total decline of all symptoms including vision problems, numbness and others. Sometimes, i totally forget i ever had MS.
Visit NewLife Clinic web-site ww w. newlifeherbalclinic. com. I am very pleased with this treatment. I eat well, sleep well and exercise regularly. My attitude is extremely positive.
I was diagnosed with multiple sclerosis at age 50. I was still mobile but use a cane. I had balance issues and some falling. I only took baclofen as the injectable medicine did not seem to help. I was about to try other oral medicines.There has been little if any progress in finding a cure or reliable treatment. My multiple sclerosis got significantly worse and unbearable because of my cognitive thinking.. Last year, i started on a natural multiple sclerosis Herbal therapy from Mbeki Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of Cognitive thinking or memory Loss,, my multiple sclerosis condition is totally reversed. Visit Mbeki Herbal Clinic website ww w. mbekiherbalclinic. com. This treatment is a miracle!!
My husband was diagnosed with MS, the progressive kind, when he was 50. He's now almost 70, had been doing well until 7 yrs. ago when he had to quit his jobs. He's been using a 4-wheeled walker all the time & when we go someplace with lots of walking, we use his wheelchair or his scooter. A year & a half ago he started falling so much at home that I made the decision to start looking for an assisted living facility for him. I still work & was getting concerned about coming home from work & finding him at the bottom of the stairs, blocking the entrance, or finding him on the concrete floor of basement. We have a stair lift to the main floor but he wouldn't use it. He's now been in assisted living for a little over a year & seems to be adjusting quite well. He's made some friends, plays bingo quite often, goes to the pool & exercise room in the building next door 3 times/wk with his scooter, & I pick him up for church, family doings, & different activities in the community. He's the 2nd oldest in a family of 9 kids, 2 of his siblings have MS & their mother also had it, passing away from complications of it. His sister, who has it, is very bad & this past summer was put into skilled nursing care. My husband has always said that he won't ever be confined to a wheelchair but I think that time is coming a lot closer than he thinks it is.
Thanks for letting me vent a bit & yes, I do like chocolate!!
I was diagnosed with multiple sclerosis 1 month after I turned 50. My Grand-mum was 96 and had it since she was in her 20s. I was on Copaxone, the first year was daily and later I was on 40 mg, 3 times a week. It made a tremendous difference for me. Although the fatigue was what really gets to me. When I do too much, I do start to feel weak.There has been little if any progress in finding a cure or reliable treatment. My multiple sclerosis got significantly worse and unbearable because of my cognitive thinking.. Last year, i started on a natural multiple sclerosis Herbal therapy from Green House Herbal Clinic, i read a lot of positive reviews from patients who used the treatment and i immediately started on it. I had great relief with this herbal treatment. I am doing very much better now, no case of Cognitive thinking or memory Loss,, my multiple sclerosis condition is totally reversed. Visit Green House Herbal Clinic website w ww. greenhouseherbalclinic .com. I am thankful to nature, the medics failed. Share with friends!!
After my Multiple Sclerosis diagnosis 2 years ago, i stopped all the Multiple sclerosis medicines prescribed due to severe side effects, and decided to go on natural herbal approach. My primary care provider introduced me to Rich Herbs Foundation and i immediately started on their Multiple Sclerosis herbal formula treatment, this herbal treatment has made a tremendous difference for me. My symptoms including shaking, muscle weakness, fatigue, mood swings, numbness, double vision and urinary retention all disappeared after the 4 months treatment! Their website is ww w. richherbsfoundation. com. Its just amazing!
I was diagnosed with Idiopathic pulmonary fibrosis. After a two-week stay in the hospital, I was home with oxygen. I was still coughing badly, breathless and my chest pain was ongoing. I had a heart attack six months ago. I'm 62, female, and no longer working. I lost 36 pounds in 1 month as my coughing causes me to vomit non-stop! I was so tired. My blood pressure has always been high; it averages at 193/88, I was on minimum daily dosage prednisone (7.5 mg), azathioprine and N-Acetyl. They put me on 6 liters of oxygen and steroids. The pulmonary doctor told me that I was going to die and said there was nothing he could do for me,I started on Health Herbal Clinic IPF Herbal formula treatment in June 2017, i read alot of positive reviews on their success rate treating IPF disease through their Herbal formula and i immediately started on the treatment. Just 7 weeks into the Herbal formula treatment I had great improvements with my breath and my chest pain was no more. I am unbelievably back on my feet again, this is a breakthrough for all Pulmonary Fibrosis sufferers, visit Health Herbal Clinic official email bantespelltemple@gmail.com or whasapp +23459073543
thank you so much
I was diagnosed with Multiple Sclerosis (MS) in October 2011, at the age of 55. I woke up one morning with numbness in my lower back and legs, I couldn't feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to Natural Herbal Gardens natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit Natural Herbal Gardens official website ww w. naturalherbalgardens. com. This treatment is a breakthrough for all suffering from Multiple sclerosis, i am strong again!
My mother was diagnosed with multiple sclerosis in 2016 after a 2nd bout with optic neuritis (right eye). Same neurologist/same treatment (Avonex) until just January ! So many other doors are open since seeking a specialist.our home doctor introduce us to Total cure herbal foundation where we finally get the right treatment for this disease, we have been on 3 different types of medications so far, but none seems to help me. Either I can't tolerate it or one didn't give any results.there is a herbal approach that has worked across Africa and China for centuries, this herbal approach has recorded a tremendous success stopping the disease progression and gradually alleviate all symptoms for MS.in other to purchase from them kindly visit their online website totalcureherbsfoundation.com
Good luck to each and every one of that's trying this herbal formula
After my Multiple Sclerosis diagnosis, my primary care provider introduced me to RichHerbs Foundation and their MS Formula protocol, the herbal treatment has made a tremendous difference for me. My symptoms including numbness and muscle weakness all disappeared after the treatment plan! Their website is ww w. richherbsfoundation. c o m....
I'm sorry but my spouse will not feel 10 times worse than me regardless however much he loves me. I'm the only one wetting myself, I'm the only one twitching in front of his parents, I'm the only one in pain...he gets it, he feels sorry for me ofc but when I look like the twitching, manic, cap- a - tain from the pink panther in front of his new boss, I'm not sure he nor I can explain it away with 'love'
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