Always Adjusting to Life with MS

Recently, one of our community contributors, Nicole, wrote a thought-provoking, and emotionally charged piece titled, “Still Learning How to Live with MS.” The title of the article rings loud and true to her message within it. Nicole outlines a Sunday morning where she feels on top of the world. She feels an extra kick of energy, and a desire to take on the day. She adds more chores and errands to her to-do list than normal, and although she is questioned on this decision by her husband, she continues on with her grand plan. Throughout the day, Nicole feels great, but by early evening, she feels weariness set in. Although this is a common pattern for her at this time of day, this fatigue is heavier and consumes her more and more as the minutes tick by. She is so weary, she is unable to eat on her own, nor get fully ready for bed.

She reflects on this day and realizes that although she has been living with MS for almost 18 years, there are still days that get away from her and bring unexpected tribulations. She recognizes that, although she hates her MS, she still needs to respect its limitations and continue to learn from it. Especially when it comes to slowing things down, asking for help, and taking a break—despite what her short-term energy levels feel like. After this article was posted, comments poured in from across our community, and it became apparent that Nicole was far from being alone in her experience. Some of the sentiments shared by our community members are collected and shared below.

Always battling the fatigue

Many of our members weighed in on their constant battle with fatigue, and how although it is a constant, it can still be incredibly frustrating and knock them off of their feet (both literally and figuratively).

“I fight with myself every day. I expect myself to do more and be more than I can do or be. I never get my stuff done all the way. My fatigue is horrendous. Sometimes I get so tired, I just have to nap because I can’t do any more that day or moment and if I try to stay up, sleep overpowers me. I hate asking for help too or needing it. I feel helpless.”

“The least little thing wears me out. Tried to play with my great grandson who is 2 and a half, and it just about did me in. I was so exhausted and hurting so bad that I went to bed at 7:00pm.”

“You hit the ‘brick wall.’ Happens to me all the time. Need at least three days to recover completely.”

“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.”

“So true and so hard to restrict what you do when you feel like you can do it, but pay hard for it later.”

“It’s hard being an “A” person in a “B” body.”

Constantly trying to take control when energy is high and forgetting limitations

So many of the comments shared with us revolved around trying to capitalize when energy bursts strike. Although this may be a rare occurrence, some of our members feel tempted to take full advantage of them, only to be back to extreme fatigue and pain later. Balancing energy and the desire to get things done with true physical limitations is a constant learning curve.

“Yes, it is hard to pace yourself. I have had MS formally since 1990. I try not to overdo it, but when I am feeling good, I forget and try to get everything done. We have to remember that we will pay for it later. Keep going and don’t give up!”

“Key word being ‘forget.’ Usually, I start each day with positive thoughts and energy. I can do anything until I can’t. Then I remember. Each day ends the same with fatigue and pain. And then, a new day is here to repeat itself. I do this ‘forget’ thing all the time. I need to pin a list of ‘don’ts’ on my shirt.”

“‘Sometimes I want to be like everybody else’ is what gets me in trouble every time. After 10 years you’d think I would know better, but sometimes it’s worth trying. It’s getting harder thought to push myself. I shut down quicker than I used to and just can’t do it some days no matter how much I want to.”

“Thanks for reminding me again to respect my limitations. I also forget. 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 exacerbation! 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 little things. I try to tell myself, when you slow down, you see more! Hang in there, and know you’re not alone.”

“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. I think the still learning how to live with MS is an ongoing process for us.”

Do you feel as though you’re constantly learning from your MS? Whether it’s learning to battle fatigue, remembering and respecting limitations, or a completely different experience we didn’t mention, share with us if or how your relationship with MS is evolving.


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