With MS, the Energy Vortex Is Real
Asking for assistance is not my favorite thing to do. But frequently, I do ask. The extra help aids in conserving my energy. Some people may feel my energy conservation requests resemble a lazy scam of sorts but, honestly, it’s not. When I ask for a drink of water or any other helping hand, most people are quite attentive. But occasionally skepticism can appear.
“Isn’t that something you can do? You really should do as much as you can, while you can,” they respond.
“I understand your thinking,” I reply. “But with my energy being so limited, I really need to pick and choose what I use my energy on.”
I can’t expect people to understand my constant energy consideration. Most people probably don’t even give their stamina a second thought. They do what they want until they are tired, then they rest and are back at it again. The case with me and many others with multiple sclerosis is that we have a restricted amount of energy for each day. And when that is used up, it’s gone. We are then so fatigued that our foot can drag as we walk and we have to will ourselves to the restroom or to bed.
Connect with other patients and caregivers, find support and share tips for living well with MS in our MS News Today online forums.
Energy loss is such an issue for those of us with chronic disease that the “spoon theory” was invented to help explain it to others. The spoon theory was started by Christine Miserandino, who said she starts each day with a limited number of spoons; each used spoon represents energy expenditure for tasks. For example, brushing her teeth equals one spoon and going out with friends equals 10 spoons. Once her spoons are used up, so is her energy. The spoon theory does offer a good explanation of fatigue, but until you have lived it, it’s hard to comprehend how it feels.
When I cook in the kitchen, which is uncommon, I need help. If I were able-bodied I’d be able to get measuring cups, reach bowls, and ingredients. But if I have to round up all the supplies needed, chop, cook, and clean by myself, I would never complete meal preparation. My energy level just couldn’t handle all that. I have to do things in pieces. For example, I can take a week to clean my room, completing one small area per day. I actually do all tasks that way, piece by piece. That is all the energy I have.
I hope that those who are healthy can understand a little more what “lack of energy” for those of us with MS truly means. Hopefully, when we ask you for a helping hand, you will have more understanding of what your help truly means.
What are your thoughts on energy loss? Any tips for handling fatigue? Discuss them in the MS forums.
***
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.
About the Author
Colette Jenkins
Understanding what fatigue feels like and presents itself as from day to day is a challenge. Being able to walk from my car in the garage into the house can somedays be impossible. Then another day I may be able to accompany my friends into a boutique and browse. There are days I struggle to get out of bed and start the day.
After living with MS for a number of years I began to recognize early signs such as not picking up my left foot and causing me to stomp my big toe or stumble and fall. What I know for sure is that MS fatigue is real, at times invisible and most importantly should be taken seriously. As a 48 year woman and former State Trooper. I can now see and accept the new me and modify my days, hour by hour, minute by minute and understand that this is just the way it is. MS is a visitor that sometimes visits announced, other times as a surprise most times brings baggage that I choose to prepare for as much as possible. I pray one day it will loose my address.
Debi Wilson
Thank-you for your comments, Colette! I can relate to all that you said, and I wish MS would lose my address too!:) Debi
Melissa Vemi
Yeah when my go go fades be I'm gone gone!!
Debi Wilson
I totally understand about the Go Go!:) Thanks for your comment, Melissa! Debi
Vanessa Bozoni
Fatigue is such a difficult case to explain to someone without MS. Still, it shouldn't put us down. I know that you prefer to be independent but this is the state of things : we should ask for a helping hand and preserve our energy as much as we can. Personally, I find it impossible to make it through the day without midday naps. Also there is medication for fatigue, maybe it would help you.. Best of luck
Debi Wilson
Hi Vanessa! Thank-you for your kind comments! Debi
Chris Medina
Thank you for sharing. Unless you live with MS, you can't understand the "hidden" effects and impact it has on your life on a day to day basis. Some days I'm great and have the energy to do it all. Other days, I struggle to just get going in the morning to try and get to the office. I am on Adderall for my brain fog and decreased executive decisioning abilities that have impacted my work. Adderall provides the energy for me to do more. Sometimes I overdo it and pay for it the next day. My diet and supplements help me as well.
Debi Wilson
Hi Chris! I’m glad you have found things that help, thank-you for sharing! Debi
GARY SHAMBLEN
As a 35 year Veteran of MS it's about time people understand this energy thing with us. They see us on a good day and think wow!!! Why is he or she not working??? They never see us on a MS day, cant feel the pain, numb-stinging-cold-burning-weak-swollen extremities-discomfort of a brace - responses to heat and cold when they are comfortable-fatigue,especially physical therapists.
Debi Wilson
I agree Gary. It can be so frustrating!
Thanks for your comments! Debi
GARY SHAMBLEN
There's a group of health care workers we all deal with whom I find some of the most least likely to understand MS Fatigue. These are our Physical Therapists, or at least the one's I've seen. I am not a whiner or a quitter. I'm a 35yr. MS Veteran with SPMS, and a recent knee replacement(5 days ago). Plan on doing my hip in 6 weeks. I consider my energy as a Bank Account. You can't take out more than you have. Is that too hard understand?
Debi Wilson
Good for you,Gary! Stay strong! Debi
Jeff
Gary - I just went through physical therapy with a DPT and PTA...you are absolutely right, and also it was quite frustrating trying to make them understand that the deficits are not muscles that can be strengthened. Some of the exercises made me downright sick for the rest of the day. I started to dread going back. The PTs really need special training before they accept MS patients.
Dale Degraffenreid
Thanks for all the comments. As A Mother, with a daughter who has PPMS it is good to hear all the comments so that I can better understand her condition. All of you stay strong. I pray there will be a complete healing for all MS patients very soon. The chronic pain you all have to contend with on a daily basis is tremendous.
Debi Wilson
Thank-you Dale for your comments! The best to you and your daughter! Debi
Christopher
I have spent 20 years dealing with MS, but I didn't know it was MS till this past May. Before that, I was told I had a range of illnesses that lead me down all sorts of paths. What has remained constant is the utter lack of empathy for my fatigue and disabilities.
I live in the US where hard work is the value we hold so dearly. People see me and think I am just lazy; I look fine, nothing seems wrong with you they say. No one understands MS. It's another cause that they are being asked to take a walk to support.
For a long time now I have described my fatigue as walking through water. On a good day its ankle deep, on a bad day it's up to my eyes, and I can't get out of bed. It has helped my family relate a little; they ask me now where is the water level today?
I do as much as I can when I can. Somedays I know that the cost of my energy expenditure will have to be paid tomorrow or sometime soon. So I am judicious with how I spend the energy. After all, it is our life force and creativity. So I have learned to be efficient in my work and direct with those I know, like and trust. I do not have the energy to carry my past or worry about my future; we can expend a lot of energy on unnecessary thoughts. I seek to maximize my life force every day. So, I may be the creator that I am and be larger despite the disease.
Debi Wilson
“Walking through water” is an excellent description,Christopher.Thanks for your comments! Debi