Who Can I Talk To Then

I am beginning to feel like the support team that I have, is not that supportive after all. If I can't talk about how I feel, the problems that I have (memory, speech, etc.) then I feel like I can't talk about my MS with you. When I do talk about these things, like my worsening memory for an example, I feel like it's being played down by a person with a good memory and I don't appreciate it. I explain that I think it's a result of my MS and that my memory used to be great and the fact that I'm glad that I know what's causing it now and I'm not getting stupid (how I was/sometimes still feel) by the day. It makes me want to shut completely down and not talk about my MS with anyone but I like to talk and when I have to hold selective conversations that bothers me. I'm in such a funk right now.

38 Replies

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  • I understand what you talking about. Been there before

  • Taylorsmom

    I hope you were not meaning this chat room is not listening, because this is definitely where I find solace and support for my MS symptoms.

    While friends and relatives try to be supportive. they often try to diminish my symptoms because many are so invisible and they remember me for what I was able to do in the past. It can be frustrating! Perhaps worse, is that then I begin to question my own symptoms. Are they real or am I making them up or exaggerating?

    I hope you feel that you can come to us when you have concerns. While we're not your family, we can offer friendship and support 💕

  • erash

    No, I'm sorry I wasn't clear. My family and friends aren't being supportive these days and as a result I RUN straight here to talk to you all. That's exactly how I'm feeling right now, questioning myself and I don't like that feeling. I'm extremely frustrated right now that I feel like I'm unable to truly talk to my friends and family right now. I feel like taking conversations about MS completely off of the table. Yes, they often try to diminish my symptoms but I know me so I know these changes about myself whether they can see/hear it themselves or not.

  • I am sorry that you are not getting the support that you need. This is a place to let it out. We can empathize with your feelings and validate your concerns, and maybe point you in a direction that helps you find relief.

    Maybe your family/friends minimize your concerns about your MS symptoms because to let themselves see it for what it truly is, how it can truly cause you pain and suffering, is just to much for them to handle. They would rather look at your outward appearance and say, "You look just fine to me." And many, if not most, of our symptoms are invisible to them, so they either believe, or want to believe, that they cannot be as bad as we say they are. It may scare them.

  • I hear what you are saying, it's really hard when you want to talk and you get brushed off. My sister is a doctor and my daughter is a nurse, but even talking to them I feel as though they too are lost at what to say. Sometimes you just need someone to listen to you whether they understand or not. We all have been there and still battling with the same issues so never feel alone. Big hug Jimeka 🦋 🌈

  • Thank you so much! You all jimeka erash Morllyn hit the nail right on the head as to how this lack of support is making me feel. Even when it comes to how I feel when it comes to my symptoms when I have them. I knew coming here would make me feel better, thanks again!

  • jimeka

    I don't feel alone here at all!

  • As long as you can come here, you are not alone. This chat was my first place I could discuss symptoms and express myself. Oh boy, do I ever wish I had my life before MS back. I have foggies, fatigue and go blank when I'm in the middle of a conversation or trying to think of a word. I went completely blank the other day in the middle of paying for my purchases, credit card in machine, clerk talking to me and I couldn't remember my code. Thank goodness the hubby stepped in and saved the day.. My Hero! Anyway, without spellcheck, I would never of been able to post this in manner that you would be able to read. Keep on coming back, express yourself and ask questions, you are with friends and family here!

  • CalfeeChick

    Oh my God, I've been having the same issues lately. I just totally go blank in the middle of a conversation or in the middle of doing something and sometimes it comes back and other times, it's just gone. I now tell my little girl (she's 4) so that when I lose it, she reminds me! She's so excited, she says that she's my little helper and she is. Don't get me started on spellcheck, I have been forgetting how to spell thee easiest words these days. I try to laugh it off but it bothers me. I definitely feel the love here so I will continue to come back every day!

  • Taylorsmom, so many others here have said what I would have. The only other thing I would add is that I have learned not to share too much because of certain reactions. My mother overreacts to anything and smothers me. My husband was in denial for YEARS and when I tried to explain how I was feeling or a new symptom, he'd come back with, "I get that sometimes too." On the other hand, I don't want to feel like a 'whiner' so I often share nothing at all. I have a dear friend who is visiting this week. She has known me almost as long as MS has. I can tell her anything and she will listen. (My husband will too, but I fear I might frighten him if I shared too much.) Anyway, I believe only another person living with this disease REALLY gets it. I know my friends and family here will listen and understand when I share anything on this forum. So we are here for you!

    And your spelling? Just check my posts! 😬 I'm here to make you feel better about yourself. We all have a purpose, right? 😉 I have a journalism background and am appalled at my inability to even come up with words, let alone spell them correctly and then catch and correct mistakes before posting!! 😉💕

  • Tutu The only word I can come up with regarding your post is DITTO.

    So many posts here are saying what I want to say. I know exactly how you're feeling Taylorsmom. Too many of my family/friends "pretend" to know what I'm going through. I say that because I know the "look/half-smile" they wear when I talk about MS.

    Don't give up on them, some day they'll get it. Well, one can hope. : )

    Jennie

  • It is difficult for our loved ones to know what to say I think, so they put their foot in their mouth or pull the old "you look so good" routine. One of my daughters, the one I am closest to, won't even talk about my ms anymore and she was always my biggest support. So what do we do? We come here to this safe haven of love, understanding and support. Keep fighting! Kelly💕

  • Hi Amore55 ! I feel like that is what I'm going to have to do from now on, not talk about my MS. I will continue to come here where I do feel safe as well as free! It's really unfortunate though when you can't talk to those that you're close to. It makes me question just how close we actually are and I don't want to do that.

  • Hi Taylorsmom l think we ALL know what your talking about. Cause as much as we want them to listen to us and understand what we are going through, they just don't get it.😞 I have lost some friends over this, l even have a daughter who is angry at me for 'getting' this 😕 Even though she knows better. And as hard as he tries, my guy doesn't get it either. Kudos for trying tho💕

    This Community has been my life saver, I can say my feelings without judgement, and know that the support here will be understood because, we all have been there one way or another 💕

    So vent away and know we are here for you and we understand! And your never alone in this! So hug that little girl of yours for us and smile!

    Jes🌠

  • Hi Jesmcd2 I'm so sorry to hear that you have lost people over this. One would think that this is a time to rally up with/for you.

    I consider this Community a life saver already. So early in to this diagnosis, I'm already feeling attacked, bullied, etc. but I get such a sense of relief to come here and vent or ready what others are posting and just be a part of that.

    I just want to say thank you to you all!

  • Hi Taylorsmom l think we ALL know what your talking about. Cause as much as we want them to listen to us and understand what we are going through, they just don't get it.😞 I have lost some friends over this, l even have a daughter who is angry at me for 'getting' this 😕 Even though she knows better. And as hard as he tries, my guy doesn't get it either. Kudos for trying tho💕

    This Community has been my life saver, I can say my feelings without judgement, and know that the support here will be understood because, we all have been there one way or another 💕

    So vent away and know we are here for you and we understand! And your never alone in this! So hug that little girl of yours for us and smile!

    Jes🌠

  • taylorsmom Sweetheart, your words are breaking my heart. I am praying for you right now, this moment. I am where you are. I feel the same way, exactly. I keep telling my husband that I cannot handle two issues, questions, things at a time. The brain (74 yrs) can only focus on one thing at a time. My memory is out there somewhere. I am really thankful, when I can remember a detail that I need. I am under considerable family stress currently, and this hurts the memory and everything else, but no one seems to understand enough to help this situation. BUT GOD, who is my REFUGE, has opened a door that is quickly bringing me help. I have used some inheritance funds to purchase a leased lot and "tiny home" at my favorite beach. It is a little "diamond in the rough", uncared for, needing a little TLC. I am packing to leave asap. My husband, my protector, has said that I am driving him crazy, and that he is on board for me to go asap. With that, I am packing all the stuff I will need there to try and regain my sanity and get myself back together. I have already begun a network of friends there, and I know the church I will go to there. In my short visit there to purchase the property, I learned of three other ladies there who have MS and are needing friends to help them cope with this (as someone else said on this site) MonSter! With Gods help, I will be OK. There's blue sky ahead, and I smell beach air! God is so amazing, and awesome. If anyone reading this does not know God through Jesus Christ, please seek Him, or someone else who does know Him. Please find Jesus. I have a miracle working heavenly Father. You need Him too! All you have to do is call on Him. Please do so. (As soon as I am able to find the time, I will be back online, on this chat room. I will be very interested in hearing your responses to this bunch of words. My husband says I talk too much. He has tired of hearing my words. He needs some space. He will miss me before too long. Everything will work out for me. My blessings to all of you.) Please excuse me, I must pay some bills, and get to packing. My son has agreed to take me 300 miles to my new "tiny home", and take my car on his car hauling trailer! God is still working!!!!!

  • I pray that your seeking of peace and fortification are successful! How brave and strong of you to be so adventurous. Where is you beach house?

  • I pray your time away provides you with what you need to regain a hold on things, 4fishylady, and also brings you and your husband closer together. MS is hard enough without other complications added to it. Meeting others with MS will provide you friends you can share with even after you leave your beach retreat and return back home. I treasure my face-to-face meetings with those I've met here through MSAA. May God bless you and meet all your needs. 💞

  • Hi 4fishylady ! I don't think you talk too much. I'm glad that you have a place to get away to in order to relax and refresh and get to know others who are battling this same "Monster" along with you. When you're ready to return home to your husband, I pray that all will be fine and he'll be ready to be more supportive to you. For me, I now know that I can only come here to this community for support. I will keep my friends and family right where they are and just keep things light with them. I will let them know when I have doctor appointments and things of that nature but that's about it. I will reserve my fears, venting, etc. to this community. I feel like I will be understood here! Enjoy yourself!

  • I doubt there is one person here who cannot relate with all you're experiencing.

    I imagine that most of our friends and family can never truly understand unless they also have MS. I'm still not far from when I was diagnosed, and I see that my family and friends, for the most part, have no idea what to say or how to help. I think they are frightened for us, for themselves, and can't articulate that well.

    I'm learning that just as we have different kinds of friendship and know which friends we can get silly with, cry with, or be quiet with, we may need to include a new category of MS support friends. I have one friend who shares her myriad physical problems with me and with whom I can share mine when I need to. I also have a sister who lets me vent and who guesses I'm struggling and comes to my rescue with whatever help I need. I consider myself so blessed to have those two! And when I found this site with all you wonderful people, I knew I hit the jackpot!

    I have found this site to be a safe place to vent, since I don't scare anyone or worry anyone with information they can't handle. Yes, I wish more people could understand, but to have even one is great. Sometimes I would rather talk face to face, but writing to you all rates way up there! I talk to God a lot, too! He never gives me a blank look or changes the subject.

    I pray you discover a friend who can meet that need for you.

    Erin

  • As everyone else said, others don't understand. When you say something you forgot, felt, etc...people tend to say, "oh that's normal, I also....." It makes me want tonscream at times. Not sure if they are attemptingnto empathize or dismiss. I know know the few people that I can talk with and the others I just don't discuss. If they ask how I am I just say I'm okay.

  • Karen-x

    Same here, it's funny to see the faces of family members when I say I'm okay.

    Jennie

  • I know exactly what u mean . Support teams are not so supportive after all. I am at the process of finding that out which is really helpful as we speak...as i am newly diagnosed... As for me i am there for u if u need me...🤔...for real...

  • ariadni Hi and Welcome to our wonderful MSAA Community ☺! Although lm sorry it's for this reason. And I'm very sorry that you aren't getting the support you need. What support groups​ have you looked into? Or are you having trouble talking to family?

    How newly dx'ed are you? It's a very scary and confusing time. We have all been there.

    I do hope you find support here though! We have some of the most wonderful and compassionate people that l have ever met. Please feel free to join in at anytime ☺

    ~Helpful Hint~ If put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

    Jes🌠

  • Thank u for yr quick responce. Yes my family has responded in a very bad manner to say the least. You are the only ones i can talk to that can feel me. Thank u again .

    P.S. l will talk to u further soonest because this is not the"best time" for me .

    Thank u and rverybody else here

  • We are always happy to have you back anytime ☺ I am sorry that your Family isn't being that Supportive, it does make things harder.

    Just remember we are always here for you! ariadni

    Jes 🌠

    ~Helpful Hint~ If you put an @ in front of person of who your addressing, they will be notified. IE @ jesmcd2 *With No Spaces*

  • Welcome, ariadni. I hope you find this forum to be as supportive and informational as I have. We look forward to knowing you and your needs better. 💕

  • @4fishylady - I am so happy for you that you are going to the beach. There is nothing better than being alone with yourself, and the beach. I did something to help me with my memory a couple years ago that seems to help. I got a used gigantic 8'x12' whiteboard/erasable. I had to have my husband hang it, because it is the size of a wall, but it is great. I have erasable pens/markers, and keep my notes, lists, bill reminders, anything that comes to mind on the board. I carved out a section of the board, for my husband. I had to get it through his head that I cant remember things, so when he says, "can you remind me to ____", I tell him, you have to write it on my whiteboard, because I cannot remember my own things, never mind, remember your things. He gets it, and it works. If it isnt on the board, I cannot be expected to remember it. I got mine from a friend that was breaking down a construction trailer, after a large construction project. They are heavy, but definitely worth losing a wall, for this, it helps me stay organized, and gets the point across, that I have a very limited memory ....

  • I understand what you are going through, because I had the same problem. It took me blowing up,crying and yelling what I needed to get my support person to listen to me.

  • Hi Jammer1969 ! I'm an extremely emotional person anyway, I don't want to reach the point of crying and yelling. I'd just rather take the discussion of my MS off of the table completely. If someone asks me how I'm doing/feeling, I will just say fine regardless of the truth. I can just come here to this Community and speak the truth to all of these lovely people here who understand me and what I'm going through. I will keep my family and friends updated regarding doctor appointments and things of that nature but that's about it. I'm sorry that it took all of that to get the support that you needed. I hope things are better between you and your support team now!

  • It is better, but I am like you. I just say "I'm fine". I also like coming here and having someone to talk to who knows what its like. I don't sign on often, but I will now.

  • Jammer1969

    You should log on more, if you can that is. Everyone here is awesome!

  • Taylorsmom Hello, Just checking in to see how you are doing and if you were able to get your dmt approved. I hope today was a good day for you. Take care.

  • Hi lois52

    It has not been approved yet. I planned on calling today on my lunch to get a status update. This process is taking forever and I'm being told that there's nothing that I can do about it which is frustrating me. I don't understand the lack of urgency. They see I need a prescription as well as why I need the prescription. I guess they just don't really care, I'm just a number to handle.

  • Hello @Taylorsmom! Yes, I am alone in this too! I have an adult son who is on the Autistic spectrum so for obvious reasons I have not told him of my "suspected diagnosis" yet, although we are very close. He lives 34 miles away and I don't have a car anymore so for the first time in I don't remember how long I can't go and see him so It's gonna be a very sad mother's day for me here tomorrow :-( And I also can’t explain to my BF what’s wrong with me I’m at a loss for words because he is very active but not very sympathetic. There’s so much chaos going on with my body inside and out from brain to toenail, it almost seems ridiculous as well as pointless to even try! And I'm done with even just saying that I'm achy and tired, since he just shrugs and sighs, shaking his head (like "really, again?"). He thinks that is a poor excuse for why I can’t work or do things around the house and doesn't understand why he has to help me all the time now with stuff I used to be able to do by myself without being in excruciating pain and exhaustion afterwards--Like bringing big heavy bags of groceries in and putting them away, lifting and carrying the clothes hamper to the laundry room (if he's not here I drag it across the floor through the house and even that is exhausting by itself), run the vacuum, open bottles and jars, etc etc you get where I'm going here ;-/ His response is always “how come what’s wrong?” or “geez you’re getting wimpy!!?”. And I don’t know how to respond to that so I just try to keep my mouth shut, suffer in silence and mope around :-( I finally got approved for Medicaid, so I can’t wait until I can see a doctor and get an official diagnosis and maybe then he will begin to understand (if I can get him to come to the appointments with me). I haven’t mentioned to him that I suspect I have MS because it will just make me sound more like a hypochondriac! Hang in there and stay strong like I know we all are here! Peace, Tami :-)

  • Taylorsmom, it's Fancy1959. To put it very simply it is the nature of this monster that we all live with two make a seek out isolation. Due to the fact that we see our skills and abilities oftentimes become debilitated right before our eyes. People who do not have the disease are at a huge disadvantage and can not possibly understand what the disease entails. How it completely consumes anyone who gets in its way,

    I know my support staff and from different stories I've heard in the chat room many other people's support staff just simply don't get it. It's like trying to figure out how a blind man feels when you still have your sight. I have met more than one doctor who doesn't even get it.

    NowNow, Taylorsmom to answer your question about who you can speak to I hope by now you understand that's what this chat room is designed to do and that's why many of us are here. From time to time we all need support and who better to give it then somebody truly understand you are going through. So come to us with your questions and concerns, come to us venting and crying, and come to us with stories you wish to share.

    We are always here ready to listen, ready to share, ready to cry along with you.....

  • MS sure is not easy.There are days weeks yes I know too well to bury my brain in a pillow and pray for a change.darkness surrounds as weakness and a do not disturb is on my door for days and on occasion weeks.Noone knows but you how hard a conversation can be, halfway thru wanting to say...I quit, no more noise(that is conversation) etc...then guilt goes in there somewhere sometimes.There are even times when I say...God, why is there no stop to this, no answers.My daughters friend brought me a teddy bear, it gave me permission in a weird way to pile all the blankets on my head, if I was a little kid no questions asked, grabbed that bear and went to bed until I flet I could come up for air.Friends do understand when you have to say no.....more.There is a lot of love here.....for you and all...I hope you feel better soon.

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