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Three Ways To Help With The Emotional Toll Of Living With Multiple Sclerosis

The other day I took a walk with my husband and son in our neighborhood. We live in a wooded area, our street unusually wide, and we are blessed to experience the sights and sounds of nature surrounding us on our casual strolls. On occasion there have been wild turkeys crossing our path, and even a black bear was once seen at a safe distance. Yikes.

We are a close-knit family, and I consider myself blessed that our son chose to commute to college. Not only because I love having him home, which I do, but mostly because he’s thriving at school. Empty nest? Not yet.

This particular day I was mindful that we all were together, but unhappy with the walk. Why? My legs were weak and numb, forcing me to walk a few feet behind them. They were talking and laughing as they tried to walk slower to give me a chance to catch up. But I couldn’t.

I was missing out on the joy of being with them.

I told them to go on without me because, despite their kind gesture, I knew a slow walk wasn’t enough exercise for them. They finally listened to my pleadings.

I became upset with MS.

This is not the first time this has happened, and it won’t be the last. After 28 years of living with MS I can honestly say I hated having it that day.

Over the years I’ve had to compromise being the kind of mother I’ve always wanted to be. I could never play tennis or hike on difficult trails with my son. I used to enjoy cooking and baking delicious meals for my family, not always needing to nap.

Now that I’m older I need to sit and nap more. I also miss out on even more special moments.

These days, in midlife, I have more of a need than years ago to elevate my legs in the evening. At the end of the day fatigue and spasticity wear me down. I’ve tried using our ottoman, but somehow my legs feel best in bed.

I don’t blame my family for not wanting to join me in the bedroom to watch TV or carry on a conversation. We love our Great Room; it’s the best room in the house.

So in the evening we are usually in separate rooms. When I’m done writing or reading and happen to hear them laughing or talking I feel wonderful for them. But a little lonely inside.

There are no rewind buttons in life. Once time passes it’s gone forever. I’ve missed out on snippets of time, both big and small, and when that happens, I feel lonely inside.

One year I couldn’t go to Florida to visit my in-laws, our yearly vacation that we always looked forward to. I was having an exacerbation and instead of spending time in The Sunshine State I spent a week on the couch with my cat, my constant companion.

I missed a big family celebration and, again, I was very happy for my family. But I felt lonely inside.

Living with a chronic disease is something you never get used to. Year after year a piece of your emotional self is chiseled away. There’s no road map to follow or magical words to say that will miraculously help us feel better about our “new normal.”

What I do if I’m feeling lonely or upset are these three things, which I offer to you now:

Journal: I write everything down that’s bothering me. I make a list of what I did that day and why I’m feeling sad or lonely. When I’m tired I jot down only words instead of full sentences. I think it’s important to get our feelings down, even if it’s for our eyes only.

Managing stress: There are endless ways to manage stress for those times when you’re feeling overwhelmed with emotion. Exercise, stretch, read, cook, listen to music or spend time with loved ones (even on the phone.) Experiment with what makes you feel best and, hopefully, it will help you deal better with the emotional toll of MS.

Acceptance: I’ve learned, for the most part, to accept my MS. Acceptance is important in maintaining a healthy attitude toward your “new normal.” Acceptance can help us avoid depression, anxiety or feelings of loneliness.

Accept yourself for who you are, and your self-esteem and confidence will benefit from it. We need courage to face our adversities, so if you learn to accept yourself not only are you courageous, but you’re pretty wonderful, too!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Connie
    4 years ago

    Cathy, loved the article. I walk with a cane, I have good days and bad days. I walk with my cat Shadow, he has a bad leg just like I do. He waits for me to catch up. Lol
    Connie

  • Cathy Chester moderator author
    4 years ago

    OMG, you just gave me an “awwww” moment with your cat! You two give each other unconditional love (we have 3 cats) and for that I am happy. Best of luck to you going forward, Connie, and thanks for starting my day off right!

  • brian
    5 years ago

    Cathy
    I have trouble walking with people to in the literal sense, there is told to slow down how can you go so fast aren’t you getting tired. I just don’t know how to tell them that if I slow down all I will probably fall down. I walk fast so I can get where I’m going and that I can rest, of course when I get there I don’t like to sit down because sometimes I’m not sure, or at least my legs don’t feel like it, that I’ll be standing back up again.

  • Cathy Chester moderator author
    4 years ago

    We all do what we can, when we can, and in our own good time. Take care of yourself first! And you are doing just that. Thanks so much for sharing your story, Brian.

  • allinjay
    5 years ago

    Cathy you are wise and correct. I sure hope you don’t mind if I add an additional way of help. Like yourself I too have had MS for many years but unlike you I am OLD not a spring chicken like you! A little humor for your day.
    I am 67yrs old and have trained myself (through many years of effort) to NEVER (gosh that is a long time Huh) utter any negative terminology having to do with my MS.
    MY EXAMPLES:
    MS stands for MUST SERVE which I define as helping any and all people throughout life.
    I try to always use the terms GIFTABLED or GIFTABILITY for myself. I do believe that I have been given the GIFT of MS for the sole purpose of making me a “better” person in this life.
    My bathroom mirror has been a godsend. When I DO start to become negative in words, thoughts, or deeds i will begin talking POSITIVELY to myself and start laughing as hard AND as long as I can. After awhile my ENTIRE attitude will change with the POSITIVE me walking out the door. Yes you are correct this may take many try’s but keep at it and maybe just maybe it will help.

  • allinjay
    5 years ago

    Cathy thank you so much for your VERY kind response. Heck this just made my day and guess what? I won’t need my mirror today. he he

  • Cathy Chester moderator author
    5 years ago

    I love it! Love, love, love your positive attitude and how you think this through with your wonderful words and laughing. Oh, that is just brilliant. I will remember it always. Many thanks for responding.

    Best to you always~
    Cathy

  • mmm3433
    5 years ago

    The first thing I saw with this article was “I was on a walk.” I immediately became annoyed. I wld LOVE to take a walk- even steps behind others. I wld LOVE to elevate my legs at the end of the day bc of spasticity- but my spasticity is constant so they have to constantly be elevated. I’m not trying to be harsh but articles like this aren’t helpful. I’m mad at my ms, who isn’t? But no two people with ms are the same- and I can’t relate to posts like this.

  • Cathy Chester moderator author
    5 years ago

    mmm3433,

    I am sorry you couldn’t relate to this article. I hope you find other articles on MultipleSclerosis.net that you can relate to. I can only write what I know and yes, I can walk – slowly and not far – but I can walk. There are many other things I can and can’t do, and the ones I can’t do perhaps are the ones you can do. As you said we all have MS differently, and I hope we can all be compassionate toward one another and understand that our journey is never an easy one, and living with MS is a daily battle. My wish is for all people with MS to be be kind and caring toward each other. We’re all doing the best we can.

  • katrina
    5 years ago

    Hi Cathy!
    I know exactly how you feel. Im in my forties and still work, almost full-time. I have to plan my days, even my days off around my walking. I get fatigue and tightness in my legs and weakness. And, I also fall behind when walking with my boyfriend and his son and sometimes have to return to the house because I won’t make it back if I continue. Walking my dog when I can is a great stress reducer and when I can’t do the walk, I go to the dog park with him. Seeing him happy makes me happy too. I was always very active and still have to come to terms with using a wheelchair for longer walks so I can be with my family and not get isolated at home. However, as you I need to rest and I already don’t do all the things I want to do and have to choose between activities because I can’t do it all.

    Thanks for writing. Its nice to read that there are others going through the same things and I’m not alone in this journey with MS.

  • Cathy Chester moderator author
    5 years ago

    We do what we can and rest to be able to be with our loved ones. That is our “new normal” and we must make the best of it (when we can!)

    Thanks for sharing your story with us, Katrina.

    Cathy

  • plushious
    5 years ago

    Aloha,
    I’m probably not the first to think of this: find a bed-like piece of furniture for your Great Room so you can rest your legs while enjoying the company of your family!

    Best wishes!

    FYI: I am newly diagnosed at age 61 so am working on “it is what it is” acceptance.

  • Cathy Chester moderator author
    5 years ago

    Plushious,

    Thanks for the great idea, and I hope you reach acceptance whenever you are ready to. We are here for you in the meantime, and remember – baby steps. One day at a time, and please go easy on yourself. You are so worth it!

    Best to you always~
    Cathy

  • Betty
    5 years ago

    When I read your post today, I felt like I was reading exactly what my thoughts were lately. I was diagnosed in 1981 so I have been dealing with MS for a very long time. Most of the time, it hasn’t been too bad but lately my symptoms have taken an unexpected turn. I have memory issues and walking issues but the biggest problem coming to the front for me has been grieving over what I continue to lose as the days go by. I have decided, though, I am going to get into a different mindset. I have many things to be greatful for and I am determined this change will not get me down. I still have those emotions creep back in, especially during this time of year. All you can do is take it one day at a time and keep your spirits up the best you can.

  • Cathy Chester moderator author
    5 years ago

    Exactly! One day at a time. Staying as positive as possible, and accepting when you have bad days, too.

  • skcullers
    5 years ago

    Bless youvBetty—- isn’t that the truth. It’s having to confront the grief over the loses and holidays do make it worse because I think of all the memories of other times. Going to really try to uplift but shared sadness makes me think I’m not so alone or going batty.

  • skcullers
    5 years ago

    It was so comforting to read your posting this morning. I have had MS for 25 years and find aging is not kind in the MS world. Christmas makes it so much harder emotionally. I long to be the person who used to cook baskets of treats for friends or make gingerbread houses with my kids and their friends. It is hard to be an empty nester and have your only grandchild so far away though next year she’ll be two so we will definitely go visit. I find that low grade depression is now part of my life. Am seeing a cognitive therapist but the dilemma is you have low moments from feeling crummy and trying all the therapies like journaling, meditating, exercising etc. doesn’t make your body feel better. If I have a “good” day I feel great. The problem is they are few and far between. Acceptance is such a gift. I still long for my life and the person I was. It’s ironic to be retired,finally settled in your house,financially not stressed , and pretty much have the coice of what you want to do everyday but the monster keeps rearing up. Here’s hoping the coming year is gentlier to all of us.

  • Cathy Chester moderator author
    5 years ago

    And being gentler on yourself on those days when you hate having MS. That’s important too.

    I hope your positive spirit continues to carry you through, and please know we are always here for you to “chat.”

    Best~
    Cathy

  • Sonya
    5 years ago

    Cathy,
    What wonderful words of expression! I’m sure each of us has experienced these feelings in this journey we travel, which has been interrupted by MS. I wasn’t diagnosed until my children were grown, so I got to have those wonderful years with them, but I’m missing so much of the special times with my grandchildren. We all envision our lives in certain ways, but life has a way of playing tricks on us, & it doesn’t go as planned. I know I am blessed beyond measure, but I miss the me I used to be, & I hate all those times when like you I feel lonely inside, & long for the life I had envisioned.
    Thank-you for your offering of ways to handle the feelings of loneliness & upset. I had never even thought of journaling…duh!! You think I have time to ask Santa for a journal to get me started?
    Merry Christmas to you & yours, and may this new year be one that great strides are made in the cure for this disease, with which we try so hard to cope.
    Best wishes,
    Sonya

  • Cathy Chester moderator author
    5 years ago

    Sonya,

    You are such a wonderful lady and are always so sweet in your responses. I am sure your grandchildren will remember that sweetness because that’s what children remember most. As far as a journal, your laptop can be yours! Create something of your own with it. There are many free sites you can create decorate images – make it your own! You own your own story, girl!

    Here’s to a better, and healthier, 2015!

    Cathy

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