I have the greatest need for family and social support. I can’t create people that will care about me or my MS. My poor husband- we were newly engaged when I was diagnosed and I tried to give back the ring. He was in DENIAL and said that a cure was right around the corner. And none of the terrible symptoms would happen to me. Now he just can’t talk about it (like my Dad), and when I try to talk to them about my symptoms they think I am just talking badly about myself. They are both useless for the kind of support I need. My mom had a stroke in Dec 2014. Since then she lives in a nursing home and can’t communicate. I am lost without her unconditional love and support. It is torture watching her in that Medicaid hellhole.
Sorry for bumming you all out
Written by
TracyBelle
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I'm sorry to hear. Glad you are talking about it. My name is Cynthia, I've had MS four year.I experienced crossed eyes when first diagnosed. Had to wear eye patch for a month.
Hi Tracy, you know that you can always vent here. It’s hard when your family can’t handle what you are going through. Ms is a very lonely illness. Getting your family to communicate is hard, I think sometimes they build up a wall around them so they don’t get hurt as watching someone they love suffer is painful. As for your mum, it must be hard, as we like to turn to our mums for support and love. But you are strong and you are a very intelligent lady. Find a new hobby, something that taxes your mind, try and keep yourself busy, and show your family how capable you are, find common interests with them, then gradually they may start listening to you. Blessings Jimeka 🦋 🍫 🤗
What wonderful advice you’ve given to Tracy! Even with supportive people around us, having MS is very lonely! Get informed and get tough! But seek and accept help. Train those around you how to be helpful to your needs. Show appreciation for everyone’s offers to help. Listen to classical music and SMILE. Bless you!
I so wish everyone could have understanding family and friends. I’m sorry about your situation and wish I could send lots of hugs.
This forum is my most understanding support system, and I’m so grateful that I can come here to vent without worrying my family. I’m so blessed to have a marvelous husband (today is our anniversary!) and family, but you all really get it.
I hope you can find at least one other soul to be there in person for you. We’re here, too.,
Don’t worry about us you have to much on your plate. Hopefully your husband will come around and realize that you need his support. Does he go to your doctor appointment with you maybe if he does he will realize what you are going through. Just a suggestion.
I feel every confusing, misunderstood, painful, loney, etc. Moment!!! No blood relatives bar 1 I'm still in contact with. Oct last year I was at my limit and tried to take my life, with wife and 2 kids. Ignorance is and has been the bane of my existance from others my entire life. Its not acting irrationally or selfish to think or do so but a means to and end of my suffering. My place has become one of succlusion and disgust. There are plenty among you that are hanging on for the most trivial reasons but who's stronger "US" living with failings of mind and body or those of sound mind and body who are the ones holding the gavil? Sympathy is founded on ignorance for most witnessing someone with this burden. When fuzzy kitten posters with witty inspirational sayings no longer worked for me, I retreated into myself because that's all I ever had. Succlusion and music is a small shield for our kryptonite. A kind of a turnacate. Not hearing others period has ironically be a god sent!!! Something will help when they wont!!! Sorry for ramble😂
I hear you. All of friends disappeared when I suddenly got MS 6 years ago, and 2 of my best friends died after I got MS. I've always been pretty much a loner anyway so I am most comfortable on my own ( with my animals) but MS has has a way of removing people from your life .
here is a hug!! sorry about your mom too.My mother has passed but boy, I would like to pick up a phone and call her. Some men think that if they can't " fix it" they don't know how to deal with emotions. the worse 2 things for me is patience and frustration, so much I want to do but sometimes my body has different ideas and screams SIT DOWN! this is a great website to get it out or just chat. pam
“Live the way you want “ is not an option for me. I can’t earn money to buy a car, and I can’t even visit my mom unless I can get a ride to the nursing home. The only place I do go is to visit my mom in that Medicaid hellhole, and I leave there in tears every time. Living at all is almost impossible and I don’t even know what I would do with a car since mine has been broken down in the garage since 2012. Living the way I want is not within my realm of possibility.
Tracy, it's Fancy1959 and welcome to your new extended family! We will give you the support, offers shoulders to lean on when you need to cry your heart out, or simply understand exactly what you are going through because we are going through much of the same issues you are. This is a safe place for you to come and ask questions, voice concerns, or simply speak to others who truly understand what you were going through. To top that off this chat room is full of some of those most caring, compassionate, and kind people you can ever hope to meet. I am in a somewhat similar situation that you were in. My husband gets tired of hearing about Ms all the time and we can't help ourselves because it literally has taken over our lives. I guess what we need to remember is that our significant others are scared to death as they watch this monster takes its toll on our body. They're not doctors, they don't have the right words to say, so they pretend if they ignore it it will get better. Or at least if we don't talk about it they don't have to come face-to-face with what we're dealing with today.
So come here anytime you need to vent, you need to blow off some steam in the form of a mini pity party, or you need to feel surrounded by support and family. We have those broad shoulders and were used to people using them. Listening is often what we do best and then we can share similar experiences with you so you know that you're not alone with this battle against this monster that we all live with everyday. I am so very glad you found this chat room and I can't wait to get to know you better. Remember the more you interact with us the quicker we will get to know you and you will get to know us. I am certain there is much we can learn from one another. Until we speak again take care and remember together we are stronger! Fancy.
I have been over twenty years since diagnosis, but I am finally starting to see some understanding and willingness to change things to better accommodate me. I have RRMS, and am still walking, but falling a LOT. For oh so long he was in absolute denial. We have been together since high school, so he still has the idea that I'm still the same girl in EVERY way. He's an engineer that has always figured that he can fix whatever my issue du jour is.
I recently spoke to a friend's professional care giver about my frustrations. He kindly offered to send my hubby a note explaining these things, and how he would be best able to help me. Now, has ordered materials to make our outdoor back stairs more amenable to my need to hang on while descending. Obviously it has been a long time in coming, but oh what a relief it is, or will be, when he returns from his business trip, and can install them.
I guess he just needed to see things from someone else's perspective, especially someone who knew what of he spoke!
I lost my mom in 95, but had the heartbreaking experience of being her caregiver during her final year. I miss her every day, but am glad that she died before my diagnosis! You see, I am the fifth member of my family to have MS; my dad and 3 of his sisters suffered with this plague! I wouldn't have wanted for her to see me going down the same road!
Tracy I understand what you're experiencing. There's not "one" solution to help others understand what's happening physically, mentally and emotionally, but try to find your peace- whatever it takes. A lot of times we when go through rough times in our lives we get to gauge other's ability to hang in there with us. Sometimes they're there for the long haul and sometimes they just don't have the capacity to get it... But love them through it! 🙂
I started a support group this year and it has been a great step with building a community of supporters who totally understand. I would also recommend finding others groups that you can connect with at least on a monthly basis!
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