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Loss of family

After being diagnosed with this horrible disease I feel very isolated. I’m at the point where I may be sitting on the sofa in terrible pain crying. Many times my husband walks by and never even looks my way. One morning I tripped over the laundry basket fell right on my nose, blood flew everywhere I was called a cults. He said you better get to the doctor. He left for work I had to drive to the doctors. Blood everywhere. I was in pain but more pain due to lack of support. My heart will be broken for ever. It’s so sad.

My mum had MS, and I always gave her comfort. She never seemed to be depressed like me, but I truly believe it was because she had love from her two children. I have four kids and I have called mine a couple of times just reaching out for help. They knew I did not feel good and they distanced themselves.

How do you get through this? I usually am by myself with my dogs – that’s where I get my support. I really do hate my life and I wonder what will hurt tomorrow.

This is my story but I bet this is also a lot of your stories.
Carol a

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Comments

  • DarlaKaye
    3 years ago

    Carol,

    I know how you feel. My husband calls me a klutz and tells me to be more careful. He says he cares but he just doesn’t get MS. He is critical when I am too fatigued to clean the house and he complains all the time about how much of my slack he has to pick up. He travels for a living so I’m on my own half of every week. I have a 6 year old daughter and a 4 year old son. My kids know I have MS but they’re too young to really understand what it means. My daughter tries to “help” and is pretty understanding when I need a nap but my son is too young to really understand. My kids keep me going. I don’t have any pets. My Mom is caring for my Dad who has Parkinson’s and Alzheimer’s so she cares but can’t be there for me. And I have 1 sister who is unmarried and, while she tries to be supportive, she has her own health issues and is just super busy. My husband isn’t close to his siblings and both of his parents have passed away – his Mom died in October. So, I have almost no babysitting support and I don’t know a single other person in my life who has MS. Last month I got a nasty stomach bug while my husband was out of town. I was sick for 2 or 3 days and couldn’t so much of anything. I somehow managed to get my daughter to school and back but my poor son had to eat cereal for breakfast AND lunch. I laid by the fire while giving my daughter step-by-step instructions for heating up dinner and setting the table. She did an awesome job – even washed the dishes. I wore a mask so the kids wouldn’t get sick. It was terrible. I had NO help. But the Lord provided and I survived.

    I gain my strength and support from God. I can pour my heart out to Him and He always listens. He gives me the strength to go on.

  • Dianna lyn
    3 years ago

    Carol,
    when I feel like my husband isn’t paying attention to me because of his things he has going on with work or whatever..that’s when I start doing my own thing..whether it’s gardening, studying books and etc.. My children don’t want to accept what I have either, so I concentrate on what’s happening with them in their lives. My dog is my best friend, we are very close and that’s my real therapy..

  • jordandossett
    3 years ago

    Hi Carol,
    This can be a tricky issue and I now find myself in a the “grass is not greener” on the other side situation. I was in a long term relationship of say 15+/- years. There was much lacking, but when it came time for my to start the disease modifying medication and start to actively treat my MS things became very real for me. However, years of not perfecting talking with my partner left me in a bad situation where I was sure she didn’t care or understand or care to understand. I rebelled and left her, walked out to learn to stand on my own to feet. I rented a one bedroom apartment, took 2 spoons, 2 forks, 2 knives, bowls, plates, etc. I wanted to minimize everything so that there was not a lot of stuff. Could I manage life, could I manage myself.

    Carol, I think for me the reason I left the long term relationship was I didn’t feel that she saw me, when she did it was disconnected and I felt like I could not stand on my own two feet. I felt empty. Once alone in the new apartment I was able to set rules and live life my way. I learned to make med bags so that I did not have to open 17 bottles of pills every morning, I made use of massive amounts if post-it notes to combat cognative issues, etc, I tried to essentially get my life within my control and I would say that I succeeded at that.

    Fast forward 7 years. I’m now married. To some degree I will say, sadly not to the person I was in a long term relationship with above, but to an amazing person who when we started dating I was able to set boundaries, explain my MS limits, allow them to see inside my household protocols of how I do things, how I live. Share not just me, but the side of me that has MS, the fatigued, numb, cranky, twice-baked loon. As our relationship advanced she would stay over and her clutter started to appear, then expand and grow. And eventually as our relationship expanded and we decided to live together suddenly despite the explanations and reminders, the clutter filled the halls, my own apartment was no longer (and still isn’t as I write this) handicap friendly.

    And so, I have had two amazing people in my life who I have loved, One I left or truthfully ran from. She was always at my side, went to the neurologist with me, but it ended there, She was never there in my mental space of what was happening to me. The feeling of being trapped in my own body and at the first chance I got, I ran. yes, I was able to live in my own, breath in my own life, but on a tiny scale and alone, When I opened my life up a second time, I got someone who I now can talk to about anything, but it is almost as if it is in one ear and out the other as I crawl through the terrain of our home, She tosses shoes, backpacks, laundry, grocery bags, what have you all in the walk way, screams in a rage if I mention dishes to be done if dogs to be walked, all resulting in a caregiver that either cannot give anymore or simply does not care,

    I am currently working on a series of caregiver articles to try and come at things from another point of view but I have no idea how to address the chapter where I explain to your husband and children and to my wife and ex that:

    – if I could do xxx, I would not have asked for help.
    – making me repeated ask for help with xxx, makes me feel as if you do not have a grasp on what’s going on with my health.
    – do you see my face, do I look flushed to you? I wasn’t just outside sunbathing!
    – no, no’ it’s ok kids let me, I have no identity to you let alone a disease.
    – you’re right dear, I look fine we can go to your company holiday party.

    I kind of started a ramble here but I hope you just know you are not alone. You can find me on twitter @jordandossett – hang in there sounds stupid so I will just say… Until next time.

  • kami.friebel
    3 years ago

    To: Loss of Family, I know exactly how u feel. I’m diagnosed with R/R and am married with 2 teenage girls. My kids only notice me when they want something or want to go somewhere. My husband is supportive but he also tells me I can’t do anything. We love to snowmobile But 2 years ago he sold mine cuz he said I’m not strong enough to turn it so he sold mine to a new for himself. I hate being stuck in my house all the time. I’m sorry for the way ur families treated u. But u also have live ur life to the best u can. Get up and show them Ur fine on ur on ur own. Hope this helps!

  • Kelly McNamara moderator
    3 years ago

    Hi Carol,

    Thank you so much for sharing your story here! It takes a lot of strength and courage to share everything so honestly. And, we’re so sorry to hear everything you’re going through. Know you’re not alone and the community’s always here whether it’s for support or just a place to talk. One of our contributors wrote a couple of really good articles about his experience with finding support when he didn’t find it at home and the online friendships he’s had since his diagnosis: https://multiplesclerosis.net/living-with-ms/seeking-support-when-you-dont-receive-it-from-home/ and https://multiplesclerosis.net/blog/online-friendships/. Wishing you all the best. Always know you can submit a story here whenever you would like!

    Also, pets can be some of the best caregivers! (https://multiplesclerosis.net/living-with-ms/the-benefits-of-having-pets-in-our-ms-life/)

    Warmly,

    Kelly, Community Manager

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