It’s Important to Know Your Limits with SPMS
I had a busy weekend. I made it to an event I had so wanted to attend and survived it.
Our golden retriever rescue had a volunteer mixer, and both Abby and I enjoyed ourselves. Once home, Abby sacked out and I began nursing the inevitable pain.
The punishment does not fit the crime. But the crime was worth the punishment.
I felt so victorious having participated. I am still aglow from being among those who share my passion. No degree of physical pain could elicit regret. I cannot attend the majority of desired events. Hence, the joy.
My weekends are unique. One substantial outing is my max. When Sunday arrived, I found myself without fresh fruits and vegetables. I eat a healthy diet to minimize inflammation. Lack of preparedness means a trip to the grocery store. As I walked to the store, my legs became weak. Leaning heavily on the cart, I realized they were out of some of what I needed. My Wayfarers on, I made my way through checkout. Sunglasses and a smile mask my otherwise obvious discomfort.
I decided to make my way to an alternate market. Big mistake.
I pushed myself. I ignored the ever-increasing tingling and pain.
I arrived home and crisscrossed my way to the couch. I willed the groceries to put themselves away, but alas, no such luck. As per the norm, my exhaustion affected my foot drop. I stubbed my toe and it began to bleed. My body was angry.
I am disappointed at my lack of self-regard. My ability to push through pain is counterproductive. My body throbs exponentially worse than had I just come home. My body speaks and so often I do not listen.
This is a dangerous character flaw. It does not alleviate, but rather intensifies, undesired side effects. Secondary progressive MS (SPMS) and autoimmune diseases demand we take good care of ourselves. They mandate we listen to and heed each and every message. The message is often undesirable. I do not want to go home when things need doing.
This is unacceptable.
My norm is in continual flux. That which I can do today may challenge me tomorrow. As my MS progresses, so too must my ability to listen. My body warns me when I am in jeopardy. I will learn to accept and heed. I will answer and not question.
My body is the boat and I am the captain. This boat is all I have. While there are cracks in the hull, she is a beauty. She has sailed around the world with the cool breeze at her back. She can no longer keep up with the streamline vessels. Where they are new, she has a history. Where they are immaculate, she has a story to tell. Where they possess speed, she admires her surroundings.
I love this boat. This boat is all I have. It is time I treated her with the respect she deserves.
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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.
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Comments
Karen Heath
Thanks!
Dan Liporto
I have found it takes a long time to learn how to pace myself and how to distribute activities over several days. Having to decline invitations from friends is difficult, but they have somewhat learned to realize the truth that I just can't overdo. Sometimes I think I am just being lazy, but the truth is that fatigue is very real and powerful. I have to go with its effects. Resting between each activity is a reality, or at least switching from physical movement to sitting down activity is one way I feel as if I'm still getting done what I need to do.
Cathleen Julian
Beautiful in concept and well written.
Thank you. I will send this to my sister who also has MS, because, gosh, Why Not? Why not? seems to be the working principle guiding MS. My legs are on fire, because, gosh, "Why not?"
Rashmi
So beautifully written....
Erica
Thank you for sharing this, Jennifer. I have RRMS, and I unnecessarily push myself all the time, too, as if I'm showing my body who's boss. I've yet to win a battle against debilitating heat intolerance, and I am determined to heed my body's warnings this coming summer. Thank you for providing the inspiration and letting me know that I'm not alone in this.
Lisa McKenzie
That was a beautiful essay. Don’t be hard on yourself for ignoring the signals from your body this time. If those of us with MS are honest, we’ve also had times when we’ve ignored fatigue signals and somehow managed to get away with doing a little something extra. You weren’t being irrational. You were being hopeful. Be proud of yourself for pursuing healthy food!
Cindy
Cthank you for writing this is very true and well written piece
Denise Traver
Wonderfully written! I also have SPMS and you have captured how I feel much of the time. I don't display a great deal of physical disability on a daily basis, my MS so far has been busy affecting my cognitive functions. Like you, I am the person that doesn't listen to what my body is telling me (almost as if I ignore it, maybe it will just go away). When I don't/won't listen is when my physical disabilities become more evident which is never good. Recovery is brutal, especially when I am still busy trying to deny anything is wrong.
I need to take your advice and listen more to what my body is telling me. Thank you again.
Michele Scroggins
I have had MS for 10 years. Because I am lucky enough to not be in a wheelchair yet, I find myself needing to “sell” the fact that I really don’t feel good to friends and family. This is very hurtful. I hurt all day everyday, mostly in my feet. I can’t be active for more than 10 minutes before needing to rest. I usually fall asleep. The fatigue controls my life. I sometimes wish my doctor would amputate my toes because they burn so much that I can’t bare the pain. I feel hopeless. I want to feel better and I am starting to give up hope.