The Ride Doesn’t Stop: MS-related Emotions Revisited

The Ride Doesn’t Stop: MS-related Emotions Revisited

Patiently Awakened

“What is wrong with you?” I have been asked this question numerous times by significant people in my life. The most recent was a few days ago.

The question usually occurs during the times I have an emotional “meltdown.” Whenever I hear it, I get defensive, thinking that I am under attack and that my sanity is challenged. I process it as condescending, demeaning behavior. I acknowledge that may not be the intent of the inquiry.

When asked what is wrong with me, I immediately want to shout, “I have MS. I’m miserable today. I am having a bad day.” Usually, in those moments, I am. Chronic pain, cognitive issues, and the uncertainty of the disease keep me in a quandary. Comfort is deceiving, as the only assurance we have is that every day will be different.

Since we have officially entered National Multiple Sclerosis Awareness Month, I wanted to begin this week’s column revisiting the emotional aspects of multiple sclerosis. I’ve talked about the rollercoaster ride of emotions with MS, and I will touch on the subject again. Therefore, the intent of this column is to explain to our support system why we may have certain emotional reactions and to remind them that we need and appreciate their love and support.

Many people with MS suffer from chronic pain and fatigue. This is a major deterrent to completing the daily tasks of life. This alone causes anxiety and frustration. Both have become a part of my normal existence. Pushing through chronic pain and fatigue is difficult, and admittedly, it sometimes angers me that I have to. Having a steady relationship with these two thieves is exhausting. They pilfer something every day.

I make a valiant effort to channel the cocktail of anger, sorrow, determination, and hope and continue with my days. There are, however, those moments when I come undone. These are the moments I don’t foresee, when I break down crying over something in my life that I cannot control. The moments when I wish things were different and I could revert to life before MS. And those moments when I am just so exhausted from engaging all that comes with it.

Lately, I am experiencing what appears to be cognitive decline. I am forgetful and regularly misplace things. Trips out of my home involve returning at least once to retrieve something I forgot. At times, I forget what I am going to say mid-sentence, which means that I frequently cut others off in conversations because I don’t want to lose my thought. Meetings are missed unintentionally because I can’t remember them, even though I set reminders on my phone and inscribe notes in my planner. My short-term memory is so compromised that I have forgotten significant activities and things from the same day.

As a result of all that, a comment like “What is wrong with you?” “You are losing it,” or “You need to relax,” is hurtful and a bit condescending even if that was not the intent. I am trying to hold on to normalcy, and it requires cognitive function to do so. I am frightened of the possibility of losing cognition and afraid that such is indicative of disease progression. For these reasons, I am going to lash out to defend that which I am trying to retain.

MS is a very unpredictable disease. With all of the changes occurring in our bodies physically, mentally, and psychologically, we fear the unknown. Although we are brave, we are not infallible. Fear is a genuine reaction, and anxiety is a normal response when you can’t control your immediate circumstances and the changes that are eventuating in your life. It is difficult to remain in a space of tranquility and comfort when every day is different.

To the circle of people traveling with us MS patients: Please try to understand all that we endure. Know that we are fighting with a champion’s heart and a victor’s spirit. We get knocked down, yet we pull ourselves back up and continue to fight. That is commendable. You supporters are equipped to help us fight this disease because you are privy to the details. Not every day will be easy, and you may want to throw in the towel. Please reconsider. We need your love and support, and we are grateful for it, even when it seems like we are not. You soften the ride.

Fellow warriors: We are not alone. Education is key. Let’s continue to share our experiences to shed light on the difficulties of managing MS. Additionally, let’s show the world that through it all, we are more than our disease and we are made strong.

I invite you to subscribe to my website.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

16 comments

  1. Cassie says:

    Thank you for posting this. This sounds like a day in the life of me.. And reading this knowing I’m not alone and that this is a normal thing with MS I feel a little bit better. Thank you!
    Diagnosed: 6/6/17

    • Teresa Wright-Johnson says:

      Hi Cassie,
      Thank you for reading the column and for your response. I believe most of us experience these episodes on occasion. You are not alone nor will you ever be. Keep fighting and continue to hope!

  2. Ella Hoole says:

    Beautifully written! This thoughtful essay ought to become a standard text for all MS neurologists. The grief and terror of no fault cognitive decline. Friends and families of MS warriors might immerse themselves for a moment too.

    • Teresa Wright-Johnson says:

      Hi Ella,
      Thank you for your encouraging words and for reading the column. I agree that the emotional aspects of MS is a topic that MS treatment providers should discuss in detail with patients. I’m fortunate that my doctor and staff listen to me. In addition, we need the support of our family and friends. I believe it is crucial to explain our emotions and experience. Awareness sheds light on all aspects of the disease. Thanks again and I wish you the best.

  3. jlz says:

    Living with MS is difficult but not impossible. Take care of, or have a caregiver take care of, immediate needs immediately! For the rest, try to relax and take life one moment at a time. Remain positive. Try not to make a mountain out of a mole hill and notice that all problems are not always MS. Problems with memory can get better if you limit your gluten intake. To me, eliminating it is also detrimental to enjoying life. Read “The Grain Brain” if you are interested. Life gets easier as you grow older with MS, however you may not recover things you had when you were younger. You can rest assured many people who do not have MS might experience similar circumstances. Finally OHSU has promising research out for MS. Search their sites, please.

    • Teresa Wright-Johnson says:

      Hi Jlz,
      Thanks for reading the column and for your enlightening response. I agree that living with MS is difficult yet not impossible. Thanks for the suggestions. I wish you well.

  4. Ann says:

    I can relate. I had a meltdown when I was getting my infusion. It was over some money my husband spent without letting me know. I kinda lost it and told my husband to go away.

    • Teresa Wright-Johnson says:

      Hi Ann,

      Thanks for sharing. We have all been here. Remember that we are not alone. Best wishes to you.

  5. Judy lynn says:

    “Having a relationship with these two thieves is exhausting. They pilfer something every day.” Love this one…so well written Teresa, thank you for being a voice for those with MS!

    • Teresa Wright-Johnson says:

      Hi Judy,
      Thanks so much for your encouraging and kind words. I too thank you for being a voice in the community. I appreciate you. Best wishes always.

  6. Michelle says:

    Thank you so much for writing what I have trouble expressing. You sound like you are living in my shoes! I really appreciate your writing this post. I shared it with my daughter to give her a better understanding of how I feel. This really helped her in her understanding of how I feel most of the time. Thank you so much. I was diagnosed as “probable” in 2001 and definitely diagnosed in 2012. Has been a bumpy ride!

    • Teresa Wright-Johnson says:

      Hi Michelle,
      Thank you for reading the column and for your response and honesty. I remember the day I received my official MS diagnosis. This is definitely a life changing experience for the entire family. I am happy that your daughter has more insight to what you may frequently experience. This is indeed a bumpy ride, but with each other, we can do it. Best wishes to you and yours.

  7. Debby B. says:

    Thank-you, thank-you, thank-you for this! You cannot know how good it was to realize once again it’s not just something I’m experiencing. I tell myself this repeatedly, but sometimes just a few minutes later I’m wondering again “what’s wrong with me?” Thankfully I have an appt. this week with my new neurologist & have my list ready so I hope to get some help. I’ve had MS for over 25 yrs. & know this can arise, but shortly after my reassurance, I’m doubtful & frustrated. I appreciate your candor Teresa.

    • Teresa Wright-Johnson says:

      Hi Debby,
      Thank you for your response. I appreciate you. No, you are not alone and we are in this together. I hope that everything goes well and continue to push forward. Blessings to you and thanks for the encouraging words.

Leave a Comment

Your email address will not be published. Required fields are marked *

Pin It on Pinterest

Share This