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What if you ARE alone?

  • By DarlaKaye

    I don’t actually LIVE alone, I have a husband and 2 young kids. But I am VERY alone in my MS fight. My husband travels for a living and he is not home for 3 or 4 days each week so the kids (ages 6 1/2 and 4) are totally my responsibility. My Dad has Alzheimer’s and Parkinson’s and my Mom is busy taking care of him full time. My Mother-in-law passed away in October and my Father-in-law passed away 8 years ago. I have 1 sister who works full time and never married – she tries to help my parents out as much as she can and so do I – my Mom really needs the support. My brother-in-law and his wife have their own challenges and my husband was never close to his brother so we just so rarely see them – they have 2 special needs kids that they adopted about 5 years ago so they have enough trouble. My husband’s only other sibling is a sister who never married and works full time and she’s also about 12 years older than I am and having many health problems. She needs support more than I do because she is also technologically challenged. She doesn’t even own a computer so she needs help as executor of her Mom’s estate and I’m the designated person to help her because I am at home on disability while everyone else is working full time and in seriously stressful jobs. I don’t know a single other person with MS that I can talk to. The 2 people I used to know that had MS have already passed away. One of them died before I even found out she had MS. I know of 1 other person from the neighborhood I grew up in that has MS but she’s about 30 years older than me and kind of a recluse. I found out she had MS through the neighborhood grapevine but I don’t think I’ve ever actually had a conversation with her and I’ve known of her my entire life. I rely on forums and my doctor (who is awesome) but I don’t have anyone in my life who really understands and offers any practical support. My husband is in mourning because I’m such a different person than I was when we got married so MS has had a much more negative impact on him than on me, frankly. He doesn’t really get it and I can’t talk to him about my struggles because it just bums him out too much. I have almost no babysitting support so I had to take my 4 year old son with me to my eye exam (the one you are supposed to have 3 months after starting on Gilenya) which I wasn’t even able to get on my schedule until I was 5 months post starting Gilenya. Thankfully, nothing is wrong with my eyes so I got a good report. I wanted to get my hair permed 2 years ago so I started growing it out because I want a spiral perm. But I can’t find a day when I can afford the 2 or 3 hour appointment – I just don’t have the babysitting support. My husband isn’t cut out to babysit – just can’t deal with the kids on his own and our kids are super active so I just can’t ask anyone to spend 3 hours trying to entertain my kids while I get an unnecessary perm. I AM really alone in my struggles. There was just an article on an ms forum that said “You are not alone!” And it went on to say that the MS community is fighting the fight along side me. But I need practical support that just isn’t available to me. I’m not depressed, I keep plugging away. But I AM alone.

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  • By Christina Mattoni-Brashear Moderator

    Hi DarlaKaye,

    Thank you for sharing your story. I’m so sorry to hear all that you’re going through and that you’re feeling alone! We have a very supportive community here and we’re glad to have you as part of it! It sounds like you have a lot going on—kudos to you for keeping a very positive attitude and continuing to look for ways to find support. It’s definitely not easy feeling as though you have to do everything on your own, but I thought you might find some of these tips and tricks useful:
    https://multiplesclerosis.net/living-with-ms/tips-tricks/

    https://multiplesclerosis.net/living-with-ms/tips-tricks-part-2/

    I also thought you might find these pages helpful in finding other support networks:
    https://multiplesclerosis.net/living-with-ms/seeking-support-when-you-dont-receive-it-from-home/ 

    https://multiplesclerosis.net/living-with-ms/building-your-support-network/

    I encourage you to continue posting and participating in our community and hope you are able to find the support you need in other places, as well as here! Thinking of you and wishing you a peaceful rest of your day! Take care and please stop by to let us know how you’re doing.

    -Christina (Multiplesclerosis.net Team)

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  • By Lisa Emrich Moderator

    Hi DarlaKaye,

    Goodness, you really are juggling a lot with your family and health. It sounds like you could use some in-person hands-on type of support and connection with others. Have you tried contacting your local National MS Society chapter (www.nmss.org)? Depending upon the programs each chapter has in their respective areas, there may be something available to help with some of your specific needs. Maybe check to see if your neighborhood has a network of young women, teenagers, who offer “mother’s helpers” type of services. This might relieve some of the burden at home even if it were a hour/week of assistance in the kitchen, laundry, or watching the children.

    It’s hard to find ways to become less isolated when you are actually very independent and capable. It’s hard to reach out. But please do try to connect with local organizations or services that may be able to either help directly or connect you with other groups who might instead.

    Best wishes,
    Lisa

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  • By DarlaKaye

    Thanks ladies! I appreciate your concern more than you know. It helps just to “talk” about it on this forum actually. Sometimes I just need to know that there are people out there who understand and care – even if they can’t be here to babysit my kids while I go get a perm!

    I spent the day with my Dad so my Mom could get a much-needed break. I had my son with me but my daughter was in school. They’re both super active but together they are a real handful. My daughter is pretty much the instigator but my son goes along willingly – he thinks all her ideas are awesome because he’s only 4.

    I can’t get the practical help from my local chapter of the MS Society or other organizations because my husband is a do-it-yourself kind of guy. He does everything he can by himself – car maintenance, carpet cleaning, yardwork (including edging the lawn, etc. He built our shed, he even touches up the paint on the walls inside our house if they get marked up. He’s a perfectionist and he physically cannot accept help from anyone other than family and even then it’s usually him helping them out. We can help out when our neighbors need their daughter taken to or picked up from school (their daughter goes to the same school as ours) but we can’t ask them to babysit our kids because they have 3 kids of their own as it is and the 5 kids together would be insanity and we just can’t ask them to do that for us.

    In many ways my husband is embarrassed by my MS although he would never admit that. He is painfully shy and has no friends outside of our immediate family and he’s not close to anyone in the family either. We’ve had offers from people in our church to come do our yardwork or clean our house or even have their teenage daughters babysit but my husband will not take anyone up on their offers for many reasons but they all come from embarrassment. He’s embarrassed by the way our house looks and he’s embarrassed that people think we are in bad enough shape that we need help and he would be embarrassed to have someone else come in and do the yard work when he is physically capable of doing it himself. In a lot of ways, my husband is a bigger limiting factor in my life than my MS.

    But, while I sound like I’m complaining, I really can’t because my husband does all the laundry, vacuuming and he often cooks. He provides our family with a good living and he saves us a lot of money by maintaining our home and vehicles by himself. He is a real handyman and he also has a good head on his shoulders so he also does our household budget, pays all the bills, does our taxes on TurboTax every year, etc.

    In a perfect world, we would have a maid, an accountant, a handyman, a yard maintenance crew, a mechanic, a chef who also did all the grocery shopping and a nanny – oh, and a chauffeur! Anyone have a spare couple of million dollars so I can afford all this? Ha ha!

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