chaos

Living with Multiple Sclerosis without losing your mind

My emotions have this tendency to run wild. I find myself crying for no reason, laughing at ridiculous things and getting mad at nothing…absolutely nothing. My brain has mixed things up and doesn’t seem to know the difference between a laugh and a tear.

I wish I could say it was just me being me and life being life, but multiple sclerosis is at fault. Somewhere, deep in my brain, the area that controls my emotions has been damaged. The communication of my feelings and the need to express them is a complete mangled mess.

Life changes a lot with MS. It changes in ways we expect and also in ways we never knew possible. Sometimes those changes happen all at once and other times they simply pile up, little by little, until we find ourselves surrounded by a sea of change.

That’s me at the moment…overwhelmed in a torrential storm. It feels like my world has been knocked off its axis and is bouncing around inside some perpetual game of universe pong. I just want things to slow down a bit. It doesn’t have to stop entirely, I just need the brakes put on and for things to stop spinning out of control for awhile.

I’m sure you understand the feeling all to well yourself. Today you may be facing a boatload of MS changes, financial struggles, relationship problems, emotional chaos, or a little of them all wrapped up into one. That’s a lot for anyone to have to face.

I hope you know you aren’t alone in this journey. I may not understand your exact struggles, but I understand what it feels like to ache so deep inside that you can’t put the pain into words; to dread a new day because you just aren’t sure what the day is going to bring; to wake up in the morning wishing you could just go back to bed and wake up from the nightmare you find yourself in; to watch your dreams get crushed and feel as if you will never be able to dream again.

I mean it when I say I’m standing with you. You can vent, you can cry, you can spill out every emotion that’s been bottled up inside and I won’t judge you nor look at you with that weird blank stare so many of us see on others faces when we try to explain what’s happening inside.

Yes, you may be living with multiple sclerosis, you may have a crazy mixed-up life, your emotions may go bonkers on you, your days may be spinning out of control, but regardless of how things look today, there is always hope for a better tomorrow.

Life is tough. Anyone who says otherwise isn’t really living. But even though we face some awful things in life, there are great things happening that show up and bring relief to the pain. And wouldn’t you know it, they happen at the very moment you feel as if you’re about to fall apart.

Things like a “thinking of you” card in the mail from a dear friend, a fistful of weeds and smiles from a child, your favorite song playing on the radio at just the right moment, a piece of chocolate, ten minutes of silence, coffee with a friend…they are happening all around you, you just have to pause for a moment to notice them.

Today may be a tough day but don’t let the struggle cloud those sweet moments that are happening in your life. Pause and breathe. Find something to be thankful for. Look around. There is some good in the chaos happening around you. You are going to make it through this storm. Hang in there and let those sweet pauses give you strength to get through the rest of your day.

MS Gets on My NervesMS WarriorMS Superhero  


About the Author
About the Author
Penelope Conway

Penelope Conway
Penelope started Positive Living with MS as a way to help others with MS stay positive in the midst of a terrible disease. She believes that staying positive and holding onto hope is the key to waking up each morning with the strength to get through the day. Multiple Sclerosis may never go away, but neither will her determination and her drive to help others through the journey.

53 replies
  1. James M. Dorn says:

    Totally true and it is not steroids,,, stop the steroids and it is still there. My hope pharmaceutical and Medicine keep us addicted, so much money on the backs of manufactured pain.

    Reply
  2. Patty Solis says:

    I didn’t use to be a crier…now I am always “boo-hoo”, I hate that change in me, I used to roll my eyes and think to myself “oh, boy- here comes the crier…,” now I am talking about myself

    Reply
  3. Rodger Ashton-Smith
    Rodger Ashton-Smith says:

    This is something I am grateful for, my emotions are greater than my basic IQ and has helped me all my life. I didn’t realize this until I could think straight and got my memory back. I haven’t cried of got angry and those feelings have not been part of who I am. It has been good and bad for me as I haven’t had to be that way and sometimes I feel it would be good the let something out but I don’t know what would happen

    Reply
  4. Shanna Kinser says:

    Penny, I mean this sincerely. You and these lovely other MSers keep me from completely losing it or giving up. Even when that’s how I feel at the moment. My service dog is great for those laughing, crying, pissed off, don’t even know momemts. She licks my tears. She soothes me when I’m pissed and makes me genuinely laugh again. We cuddle or play or just be together. When she’s out with me working, doing counterbalance, bracing, and signalling me when the lassitude hit, she constantly checks in with me. We all need that creature or person in our lives who gives us unconditional affirmation and love.

    Reply
  5. Randi firestone
    Randi firestone says:

    This post really helps me… my new normal changes daily, yesterday I fell twice , my knee buckled, and today I feel better making me realize it’s probably MS and not orthopedic… I appreciate you sharing your story

    Reply
    • Patty Solis says:

      I’m so sorry- I haven’t reached that point yet. I get angry with myself and push myself to hard because I think “force of will” may change things. It doesn’t. So I guess I express my anger and harm myself in different ways….

      Reply
  6. Melissa Zink says:

    Thanks for sharing this. I have been having difficulty with this. I’m getting through it the best way I can, I thankfully have some close people that understand, yet I still have a few that need this reminder. Because if I have to keep reminded them, it’s not going to be put so nicely 😀

    Reply
  7. Margaret Marcelak says:

    I dont want to diminish what you are feeling but I also feel the same lately. Not just the holidays but every day is a strain. Hope you find a happy place today..I am feet up and praying for relief after a day out with my husband. We used to do 14 hours running around playing and eating out and now I try and fail. Lets proclaim today FORGET ABOUT MS DAY ..

    Reply
  8. Jeanette Ford Lujan says:

    I’ve tried to tell my family, just this. My emotional state is just as bad, if not worse, than my physical struggles. I can’t articulate how I feel, so thank you for your article. Maybe, if someone else feels exactly the same way, they might see, it’s not just me, being a drama queen. There is real trauma going on inside of my brain. Just because you can’t see it, like my, scooter, walker, cane,losing my balance or falling. Even break braking my wrist, they understand. All of these things you can see. What’s going on inside my brain, no one can see. Thus, no understanding. I’m depressed, lonely, confused and sad. I can’t express myself anymore, so my family could try and understand. I’ve tried and tried. Only leads to more heartache and suffering emotionally. Why keep trying. I wish life wasn’t so cruel. The agony inside my brain, makes me wish life was over. Emotionally, it’s just too much. Loss of so much, people, loved ones and just joy for life. It’s a struggle to get out of bed, and try to live another day. Why keep trying.

    Reply
  9. Donna
    Donna says:

    Once again, you have put into words, my experience at the present moment. Thank you for your gift of understanding & expression!

    Reply
  10. Heather Adsit says:

    Things bug me and I can’t drop them any more.
    I had to stop watching the news and have family explain it to me so I don’t get in a loop of being mad and crying about things a normal person would shrug off.

    I can be so happy… and yet I cry and feel depressed at the same time.

    This is the worst part of my MS.
    Emotions… and mental struggles… like foggyness and confusion.
    Add the cognitive challenges to the mood swings and… yes it’s rough.

    I now take small breaks.
    As a mom I can’t fall apart. So when I’m overwhelmed in the day I go out to my grage… my home art studio I’ve made 🙂 and I breath for a few min in the quiet.

    Sometimes I need medication to calm me… or just a cup of tea to calm down.
    I just take a min and I’m back at it.

    It’s rough living a world few understand… but at least us MSers get it 🙂

    Reply
  11. Julie Knapps says:

    Oh how well I understand this now, took many years and some counselling, still have a hard time with it. Take time to understand yourself. Cry if you need to, laugh if you can… bless you and your journey.

    Reply
  12. Kim Sauro says:

    Several years ago , I went to therapy I was very unhappy , angry, cried frequently and placed a lot of “blame” on my husband. The therapist had my husband come to a session, where basically he was “bashed”. Quietly on the way home, he simply said, It’s you, not me”. MS did a number on my emotions which I didn’t recognize.He was right! Thank heavens he stuck with me until I got stabilized emotionally.

    Reply
  13. Nariman Bisma says:

    Story of my life ! M sick sick sick of it..when no one understands, thinks u r rude when your tolerance level gets low, you have severe mood swings..when your relationships start getting affected.. on the surface when you look healthy rather fat; no one can see or feel you..it is terrible

    Reply

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