WTF is wrong with me!?

Why am I usable to talk to my husband?

Why am I so scared all the time?

Why do I need to prove myself time and time again?

Why does he always say I've given up ?

Why has this happened to me?

Why am I so lost right now?

I'm so tired of everything all the time now and I feel like everything's my fault!

I hate venting to you all again, but I don't have anyone to talk with.

31 Replies

  • No problem Shelly36. Venting is a healthy alternative than keeping it all balled up. Keep talking and don't hold it in.

  • Hi Shelly, go ahead and vent. We all say a lot of things we don't mean when we think the world is against us, but remember we all have ms, and we all can't understand 'why me' but at the end of the day we all have different symptoms, but we all understand where you are coming from. Hang in there, tomorrow could be brighter, hugs.

  • Oh, Shelly 36, this is Fancy1959. I'm so glad you have chosen to come to us with your fears and what you feel are your shortcomings. You need so much that you're not getting. We've got such a great family here and I want you to know that you are always welcome here and we have broad shoulders to cry or vent on. More than that, you need to remember you are surrounded by people just like you. You have nothing to prove to us and understand everyone dealing with a chronic illness, whether it be MS related or not, goes through many of the same feelings, the same vulnerabilities that you are now experiencing. It seems to me you cannot talk to your husband because he is just as scared of what is happening to you as you are and he is not supporting you, if he refuses to accept the fact that you are sick, it will make it so.

    You should not have to prove yourself over and over. Your husband is probably just as scared of what's happening to you as you are although he doesn't know how to show it or admit it. Perhaps you could start by taking your husband to your next visit to your neurologist visit . If MS has really knocked you you down, ask your neurologist to send you to physical therapy. Your physical therapist can become a great advocate for you. Most will invite spouses along to talk to them about your disability, the limitations it has imposed upon you, and how it can affect your state of mind.

    Remember you did not choose MS it chose you. None, I repeat none of this was your fault. You feel lost right now for the same reasons many of us fighting MS feel lost to the fact that our bodies suddenly refuse to do what we ask it to do and often what it has done a thousand times before. none of this is your fault. we are stronger together so keep us in the loop so we can assist as we can. Remember, never give up and never given in, so Fight On with us MS Warrior, On!.

  • I totally understand, when I first got dx. I would try to talk with my wife and her answer was you always say that. Her solution to my leg spasms was to have me sleep on the couch. She had to go to work. That was all in the beginning. Things are a lot better now. Your MS will always change. You have to remember it is not your fault and venting is a good thing. It's not good to hold it in. :-D

  • I feel the same sometimes. Lost and alone. Like you shouldn't tell your spouse the whole truth of how deep and dark this disease can make us feel. It's a hard balance. Sometimes my wife is freaked out by the whole truth of it. She always calms down and is very supportive eventually but not always right away. They are forced to deal with this set of circumstances as well, from the outside. It takes a while for me to process how I feel in order to put it into words that are not just ramblings. Meditation helps me separate from my feelings and observe the sensations. It takes a number of times for me to get to a point where it seems like it works. Stick with it and put all focus on your breath. We get strength in the pauses holding breath in and out. In sorry if this may sound preachy but it's just what works for me. I find peace in this solitude. I hope you find that you do have a receptive audience here and always feel safe to express yourself here. Maybe by doing so you can make the progress you seek.

  • Hi Shelly36, I think many, many of us have or experienced with what you feel. Many of us have a supportive structure in our lives. In your case, things said to you or appear are making your situation even more challenging.

    Many, many years ago during a divorce (pre MS diagnosis) I found myself saying lots of the things you are saying. I knew it was beyond my ability to handle my situation any longer. Finally, I shared with my doctor my feelings and that I was hanging at the end of a thread. He immediately got me into group therapy. I was put on a mild mood enhancer while in therapy (lasted 5 months). This intervention saved my life.

    Sometimes, things can be so overwhelming a person blames themselves. It's tough to identify what's happening and who is part of the problem. I've lived 71 years and despite SPMS (secondary progressive MS) I'm enjoying life and my family. Sometimes "it's my time in the barrel" and I gaze upon my scooter and say "why the hell me?", but, Why Not Me. I still take a medication to help me ward off depression and there's nothing wrong with that.

    You'll be in my positive thoughts. At my lowest, I finally learned to say What Is Now Will Not Always be. It was so hard to pick myself up (needed help and positive people) and learned to find that help and draw from within to meet the misery I lived. Eventually, led me to a wonderful life. I wish the same for you.

  • Shelly, you are FAR from being alone in feeling all of what you mentioned! I am so sorry you are forced to deal with the same as me. I have mental confusion many times, (sometimes many times a day). Sometimes I just have to pray people will understand and take pity on me or sympathany.

  • number one its not your fault number two you may need new medicicne and should also try CBD tinture to help calm your mind and body from your mind racing so much m.s. is a very loney disease and you need a circle of friends that have m.s. that understand what you are going through stay strong do not let m.s. mentally and physically defeat your inner spirit

  • I love you all so much! You don't judge me or belittle me and you don't mind my venting. I thank you all so much for talking with me. I know now where I belong, you are all my therapy. You understand what trials and tribulations many of us deal with on a daily basis.

    Right here, right now. My new phrase. Its what I woke up saying to myself and I'm sticking with it!

  • My husband and I have finally reached some sort of "understanding" of each other after 2 very difficult years. Although I had MS when we met, 6 years ago, I was still very mobile and working. I quickly progressed into SPMS, and am now in a wheelchair and on disability. What I learned during this time is that while I was unable to talk to him, and kept wondering "why me?", he was scared and frustrated that he couldn't help me, or make it go away. Unfortunately, this came out as rage, towards me. It took many counseling sessions for us to understand that I just want to be heard and loved, and he just needed to know that I would ask for help when I needed it, and that I was still the same person inside. We MSers have to come to some level of "yielding" to the disease/ Not "accepting or giving in" to it, but working and living WITH it. Hang in there. It sucks, its not how you want to be, I know.

  • Thankyou ! this makes sense I needed to read this

  • It's ok to vent, Shelly36. We all need to do that at times. Sometimes we need to scream, or pound a pillow. We are here for you. Hugs.

  • I Def have had some of the frustration you are going through.

    If you'd like a sounding board, I can Def try to be that for you. Hugs

  • What is a sounding board?

  • All of us are your sounding board Shelly36 being here for each other. And always think positive, it's hard sometimes but when you catch yourself thinking negatively. Think of something good :)

  • Okay, I feel dumb now, I should have guessed. Thank you for being there for me

  • Thankyou for asking this question ! I needed to hear this too

  • Well, my husband left me last night. I don't know where he is. He got mad at me for buying it and he said I don't talk to him anymore. He said I should take a bath instead. I got the items because I am scared of falling again, bath or shower.

  • Shelly36 lm so sorry for situation. You are perfectly in the right to get the items you need to keep you safe! So don't blame yourself.

  • That stress it seems is terrible for an illness ! can you get him to therapy to work through his anger ?! He sounds like a terrible support system . Can you divorce him and get peace ? I'm sorry if this is negative , But he is cruel ! The person above said counseling helped her husband ,

  • I agree with you, he won't go to counseling with me and the stress is unbearable sometimes. I feel like I have to tiptoe through eggshells. I'm at the point where I know I can do this without him. As crappie as that sounds, I miss my best friend

  • I feel like a burden to my kids and ny husband when I'm unable to do the things i used to. I went to a counselor before my dx not understanding why I feeling so overwhelmed. It is a regular occurrence, but don't dwell on it. Vent, cry, get it out...then gather yourself up. Put on something nice, eat something that you shouldn't, listen to your favorite song and smile, because you are a MS warrior like the reat of us ☺

  • Thank you for your message. I feel the same way when we go out. My kids don't understand why Momma can't run and play like I used to

  • Yep, I was an auto mechanic and now I have trouble vacuuming my house most days. Cherish each moment you can enjoy with them. I'm expecting my first grandson and I'm worried how I will interact with him, but I know he will be loved so much that he will know that his granma is awesome 😍

  • Congratulations on the grandbaby!

  • Xxanex helps too

  • I got a glance of this and felt like I might have written this , And could have possibly because I forget and get confused .But usually do not . I do not think that I did , So you are not the only one ! My only thought on this is , He is dealing with a lot too and maybe give him a chance ? Not sure if this is right or wrong ,But I know it hurts to be accused , Blamed and attacked ,When it is nothing that you did intentionally , I hope to get an answer to this also . I will pray that you get one ! This is a horrible feeling ,If it helps I can relate

  • Thank you Pistol. I'm grateful for everyone's input. It is scary to feel alone. I know he stresses but I do too. Enough about me, how are you doing ?

  • I'm Thankful to have my little Yorkies by my side and a warm , Sounds like we are in the same boat !

  • Hi Shelly , How have you been ??

  • Pretty good, I'm relaxing with my girls and watching football. It's a good day!

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