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Still Learning How To Live With MS

Still Learning How To Live With MS

Sunday I had a very busy schedule. Something I don’t normally do. Because of extreme fatigue, I limit myself in the amount of errands I perform in a day. It has taken me years to figure out my boundaries but I think I know exactly how much I can do at one time.

Feeling like I could conquer the world

But this particular day, I woke up feeling great and convinced myself I could conquer the world. When I showed my husband my list of chores he said, “It sounds like too much”.

I assured him I was capable of completing every task. And he reluctantly agreed to help me.

So off we went, making multiple trips to various locations. These stops included church, shopping at the mall, the grocery store and lunch with a friend.

I was so proud of myself because I completed every task. I did all the things I needed to do, with no problems. And I was feeling fine.

The weight of the day on my shoulders

But once I got home, I could sense the weight of the day on my shoulders. It was around six o’clock at night. That’s the time when I normally get tired and fatigued everyday. So at first, I thought it was my typical afternoon weariness. But then I began to feel a bit peculiar. I realized something was different.

I sat at my dinner table and rested. I stayed completely still for about three minutes, hoping to recharge. Once I recouped some energy, I began eating my evening meal.

Completely worn out

Then out of nowhere, I was completely worn out. I did not have the strength to pick up my fork or my cup. My husband calmly came over and did his own check to see if he could help me.

When I still wasn’t able to do it, he began feeding me. I was so embarrassed. I used my remaining energy to stop myself from crying.

After dinner, I was so tired I didn’t even take a shower. I went straight to bed.

My husband could have easily said I told you so. But thank goodness he didn’t. Besides I was already beating myself up for letting this happen.

I want to live without restrictions

I was diagnosed in 2000. I know all the MS 101 stuff. I’ve become an expert at energy conservation. I know I’m not supposed to let myself get that tired. But sometimes I want to be like everybody else. I want to live without restrictions. Not plan every move. Attend events without having to know where every bathroom is located. Not worry about if it’s too hot outside or if a building is accessible.

Respecting my limitations

But I know I can’t. And even though I hate MS, I realize I must also respect its limitations. So when my judgment becomes cloudy, I have to slow down. When I’m weak, I should ask for help. And when I’m in pain, I must take a break.

I just can’t believe, after all these years, I’m still learning how to live with multiple sclerosis.

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

  • Lizzy86
    1 year ago

    I still really push it, I thought I was fine the other day, getting on with things myself, I almost felt proud!
    But I failed to take those important breaks in between, I showered and then straight after I cooked lunch, but I didn’t take into account how limited I am with this condition, and I fell over eventually!

    I haven’t fallen for a while, and I didn’t really hurt myself, but its still a shock!
    When I can feel myself falling, I just really worry how bad it might be this time!

    Thanks for reading.

  • Debrahoff2
    1 year ago

    Thanks for reminding me again to respect my limitations. I also forget. And it really does suck because the consequences can be dangerous. Your thoughts are timely because I was just saying how I’m tired of not doing much. I always want to do more and not plan so much for fear of exhausting my body to only suffer another exaserbation! My only advice to myself is to try to appreciate what I can do and find goodness in those accomplishments, as few as they may be sometimes. There is so much beauty in enjoying the little things. I try to tell myself, when you slow down you see more! Hang in there, and know you are not alone!

  • NLG30
    1 year ago

    It’s still difficult for others to understand what happens to me if I don’t rest…lots.
    The amount of energy that is needed to push myself through a day is exhausting. I explain that I can manage some things, but not all things. I have to keep reminding them of this spms that takes my strength and makes my life very different from theirs. Most do not understand the utter exhaustion of this progressive debilitating disease.

  • lpoole
    1 year ago

    I was so glad to read your article, and find out I’m not the only one who does that. You would think I to would of learned but no, even after having MS for 33 years I still do it too.

  • maxie
    1 year ago

    Yes, I am still learning. Like J. Deabler so aptly stated, sometimes I just don’t care. I so want to be like everyone else, I will throw caution to the wind and just try to do it; go shopping, out to lunch, make dinner, clean, collapse on my own terms and not feel guilty about it. Let me do it while I can because there might come a time when I can’t. Let me be free to make my own decisions even if I pay for them later.

    Be well, my friends.

  • JDeabler
    1 year ago

    So true in so many ways. I have had MS for 28 years and there I still days “I am learning how to live with MS.” Maybe I am just a very so learner LOL or I prefer to think that even on those days I do too much and then do nothing for the next 2 because I am exhausted that at least I am still living on my terms…not just those of MS. And let’s face it, it is so freeing (even when you know better) to just let go, to be like everyone else, to be healthy (even if we’ll pay for it later)…to me occasionally, it’s worth it. Like you I have accepted, accommodated and adapted to everything MS has brought to the plate thus far and I still believe I am in control because I still choose to live my life and not give in or give up because then what else is there? So on those days I am paying for my rebellious spirit against MS due to the fatigue, I’m ok with it and looking forward to that next rare day I throw caution to the wind and get up and go.

  • katrina
    1 year ago

    As others, I can relate. I have learned to limit my chore or errand list and I now even literally write the word REST on my lists, so i don’t forget to take the time out. When I keep pushing and then I hit a wall as I like to call it because the fatigue will just stop you in your tracks like hitting a wall.
    But like you we all have a good day where we want to feel “normal”. And we can even let others believe we are getting better or doing well because they don’t realize that we rested and did nothing prior to whatever event we tried to make it to so we could participate even for a short time.
    I think the “still learning how to live with MS” is on ongoing process for us and as some of our disease progresses we learn to keep adapting.
    Good luck, hope there are more better days ahead for you. Thanks for the post.

  • shugar48
    1 year ago

    Wow…I feel you Nicole, this past Sunday was a good day for me. But for that one day of pretty much no pain, Monday Tuesday and today I’ve had aches and pain all over. And my bladder just won’t allow me to sleep. I am so exhausted. It’s been 10 years and i still cannot navigate this ridiculous disease. My toes even hurt. I’m laughing but i have to laugh to keep from crying . I hope you feel better Sis….

  • Amy B Mel
    1 year ago

    Thanks for all you do Nicole. Could completely relate to this post. I know how much pacing helps and yet it is easy to over do. In my mind I’m still the healthy person. Take care.

  • SuzanneSparks
    1 year ago

    MS teaches us that we can’t often do what seemed effortless to us before diagnosis, right? It’s particularly difficult for some of us who have a history of being over-achievers. Sometimes we’re just plain finished before we’ve barely started.

  • Jan
    1 year ago

    Whoa, Nicole, did you write that post or did I? Must’ve been you because you’re making wise decisions now..I’m still known to push through as hard as I can, but it is not easy for family members to see that.

    I’ve had MS for 13 1/2 years with no MS meds ever and can totally relate; on top of that, I’m no longer in my 30s or even 40s for that matter, although I try to carry-on as if I am.

    I appreciated reading what you wrote about boundaries, and actually that word applies to any relationship. Great insight: thank you.

  • shugar48
    1 year ago

    Hi Jan, I’m not on any meds either. The dr i had in Az said let’s just treat the symptoms. Well that was a few years ago. Im in a different state now looking for a good neuro specializing in MS.

    SHUCKS I GOT GRANDBABIES TO PLAY WITH….LOL

  • SiouxH
    1 year ago

    I also relate to your tale. I was diagnosed in 1989. I have been so lucky to have the kind of MS that is so mild that others don’t know that I have it. But it’s still THERE. Over the years my activity has reduced gradually but the limits are gradually mounting. The sun downing of energy, the ambushing of fatigue, the lack of energy to stay on top of housework or laundry is also a part of my life now. Thankfully I can choose to focus on having a glass that is 1/2 full … or even 1/8 full at some moments. Nice to read comments from others like me. God is still good, even if having MS sucks!

  • Jan
    1 year ago

    As I had mentioned to Richard Cohen on his site that I no longer see, better a glass that is half full than inverted on the counter with no capability of holding anything.

  • omgck
    1 year ago

    Nicole, you described so well what my life has been like these past few years too. But I never seem to learn. It is so hard to say no especially when there is an event that involves my grandchildren. I have had to miss out on alot of their growing up the past two years because I had no choice at times.

    When they were too young to remember now I was very involved in their every day life and active with them. Now that they are old enough to be able to remember what their grandma was like, unfortunately they are seeing a very different version of me – makes me sad!

    Thanks so much for sharing your story!

  • Jan
    1 year ago

    Oh my, that reply resonated with me in a different way…this morning we sent our oldest off in a rented truck thing pulling his car for his first big boy job after having graduated college in December. The job is three states away, and I sometimes wonder if our “kids” remember all the things I used to do as well.

    Something that MS has not affected is that my eyes are just as red and tearing up as they would’ve been without it!!

  • lcal
    1 year ago

    hi OMGCK
    I totally get how you feel and it stinks to say the least. I am in the same boat as you with grandchildren but at the same time it still pains me to have realized in the last couple-of years that my children dont remember me always being active, rollar skating,ice skating,walks,cooking,cleaning,shopping,etc expecially my baby(22 yrs old) as he got the worst of me To me iv’e always been me and like you said they see a very different version, and its sad

  • Jan
    1 year ago

    Ditto, including two years with the Ice Capades. Sigh. And certain songs I hear on the radio while driving that I used to skate to can still elicit tears.

  • rdyyx4
    1 year ago

    I can SO relate! Your life sounds almost like mine, except I’m also recovering from pneumonia which my doctor said could take 6 months to a year! I would love to be able to go to the grocery again, to church, anywhere really! Bathing exhausts my arm muscles even in tepid water which I abhor. Dressing, when I can find clean clothes because I’m not able to do laundry, is such a chore. By this time all I can do is lay down in excruciating pain and fatigue.

    I’m completely reliant upon my family to care for me and our home at this point of my life. A 180° turn. I’ve always been the one taking care of everything and everyone. Even knowing I’ve had MS since 2002, I’ve enjoyed wonderful strength throughout until the last 5 years or so.

    The motto of our family is “Never Give Up”, and I’ve fought hard, but there comes a time in everyone’s life when you just have to say “help me, please”.

    I’m a dedicated life-long learner of all things. I’ve always had a curious mind. Unfortunately my body can’t keep up. But if we MSer’s so choose we can still find beauty and joy in each day.

  • Jan
    1 year ago

    Agree.

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