Still Learning How To Live With MS

By Nicole Lemelle

2 min read

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.

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rdyyx4 Member
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.
1. jan Member
 Agree.
omgck Member
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!
1. jan Member
 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!!
2. jan Member
 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.
siouxh Member
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!
1. jan Member
 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.
jan Member
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.
1. shugar48 Member
 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
suzannesparks Member
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.
amybmelv Member
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.
shugar48 Member
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....
kat123 Member
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.
jdeabler Member
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.
maxie Member
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.
lpoole Member
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.
nlg30 Member
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.
debrahoff2 Member
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!
lizzy86 Member
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.
saltykid Member
I don't think a lot of people realize how exhausting it is for a person with mobility limitations to just get in amd out of a vehicle.
1. Janus Galante Moderator
 Your comment piqued my memory! I agree, there are those that don't realize just how difficult it can be to do the most everyday tasks. (Like getting in and out of a vehicle.) We had to give up my high up, full bodied work truck for an easy in- easy out car. (After all those years hoisting myself in to a truck!) Thank you for the comment, and thank you for the reminder not to take anything for granted! Janus
2. sapphire Member
 <inline-mention username="saltykid" user-id="4077110"/> I hear you! In and out of the car, when you have leg issues, across multiple stops, is just a nightmare. Going to the gas station then the grocery store is enough to make me want to give up, and I can still walk. I can’t imagine how exhausting it must be for others with greater disabilities than me.
georgi54 Member
After reading this article I thought it could have been me. After coming home from an 8 day camping trip, where I tripped on a trail, fell and hit my head on a rock, I still thought I could start doing laundry as soon as we got home. My husband always cautions me but I still feel the need to perform as I once did. Then about noon, the terrible fatigue hit and all i could do was go to bed. The exhaustion permeated every cell in my body and that is a horrible feeling. That was the end of doing anything else that day...
1. Janus Galante Moderator
 Hi georgi54, this sounds WAY to familiar! I know how your head keeps telling you to go,go,go and your body wants to give up and go the other direction! Yes, my husband as well, cautions me and always I think I can still do things the way I used to, then the awful fatigue! Please be so careful, especially outside or when by yourself. The one thing I had to learn was...it's okay to lay down and even take a nap. WHAT!? In the middle of the day!? It really is. Go easy on yourself. You're worth it! xxxx's Janus
mrs-t-garcia Member
Thank you for this article, so very true... It's so good to have others who understand and know that I am not alone on this journey. To our health!
1. Janus Galante Moderator
 To our health mrs.t.garcia! I like that! I'm so happy to hear that in this community you've found like minded people, and for certain, you most definitely are not alone! Janus
walterthiii Member
I totally feel you. I had to finally start admitting to my wife of 21 years that I COULDN'T do it all any longer. She kindly told me I couldn't and was/has always been there when I need her! Nowadays, she is even more there for me because she can see when I am about to fold even before I can! God Bless our spouses!
1. Shelby Comito Community Admin
 It can take so much courage to speak your needs and admit that sometimes you CAN'T do it <inline-mention user-id="4104952" username="walterthiii"/> . It can also be so freeing! Thank you so much for sharing and I'm so glad to hear you have such a loving and understanding wife to help be your strength and support! - Shelby, <a href='http://MultipleSclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
kaos Member
Well that just hit the nail on the head!
marcy Member
I've had MS for over 40 years, and am grateful for the Betaseron and Ampyra that keep me going. 7 years ago we moved from Michigan to Florida, which presented a whole new set of problems! I purchased a cool vest and scooter which have helped tremendously; also a cool swimming pool keeps my core body temperature low for several hours after taking an hour long dip. Now I can see my granddaughters play sports.
walterthiii Member
OMG, until I saw the HUSBAND was involved, I though I had written this and forgot about it! Right down to the year you were first diagnosed (2000) and what happens when you push beyond the usual fatigue point! It gave me a better feeling that this is NOT just ME being all weird! Thank you!
1. Janus Galante Moderator
 Hi WalterTHIII, so glad that Nicole's story encouraged you. It's not just you at all. You're not alone by a long shot! Janus
lbkaiser Member
I relate to your story. I have learned to conserve my energy. If I have plans for the evening, I make sure I take it very easy that day. When I crash , I have no reserve.
1. Janus Galante Moderator
 Very wise advice LBkaiser! It's very frustrating if you're looking forward to something later in the day only to find that you're already "spent!" Thanks for this! Janus
asapcynthia Member
The beauty of it all is it changes day to day. My boundaries are like shifting sands. I have to wake up first to figure out what they are. I have plenty of equipment, walkers, wheelchairs once I figure out what kind of shape I’m in. I look for patterns or consistency in symptoms to decide whether my ms is transient or a symptom I need to focus on, and the next day is on repeat. I Do know if I have an early appointment somewhere, I have to get ready the night before. I have, I admit, slept in my clothes on occasion to reduce my morning routine.
1. Janus Galante Moderator
 It sounds as though you've found some very effective coping skills that work well for you asapcynthia. I think it's almost poetic as well as very realistic, how you compare your boundaries to shifting sands and then assess the day and adjust accordingly! Janus

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