Navigating fluctuating energy levels is part of living with MS
Sudden shifts in how I feel make school and work difficult to manage
As I write this, I feel mentally, physically, and emotionally well — something I always take advantage of before my health goes downhill, as it will sometimes. The only issue I struggle with in these energized periods is taking care not to exert all of my energy at once. In life with relapsing-remitting multiple sclerosis, I never know when I’ll start feeling worse — especially now that I’m beginning a new treatment because of mild disease progression.
Since my most recent MRI showed that my multiple sclerosis (MS) has progressed, I’ve been experiencing many highs and lows. These fluctuations are spontaneous and last for different lengths of time, which is troublesome to navigate.
For instance, being back on campus for a new semester of graduate school has presented many challenges. There are moments when I feel absolutely phenomenal and ready to conquer my busy school and work schedule. But in many instances, I experience a sudden shift in how I feel. It’s as though someone’s flicking a light on and off.
Just last week, I walked into a meeting with my colleagues and felt great, but 10 minutes later, I was internally screaming. I stared at the wall for most of that meeting because I couldn’t concentrate on anything other than how horrible my body felt.
Whenever my partner and I start to feel worse, we say that we’re evaporating or disintegrating. I feel like I’ve been disintegrating at a faster rate these days.
On a brighter note, when I’m feeling good, I try to complete all of my tasks before my energy starts to fade. I take advantage of the highs because I feel as though I can conquer the world — and I do. There’s nothing better than feeling well. The issue is that I always do too much too fast, inducing a low period all on my own.
Even though it’s been years since my MS diagnosis, I still haven’t found a healthy balance when it comes to how much energy I use each day. Perhaps this struggle is a subconscious way to resist giving in fully to MS, even though it’s beyond my control. But I’m not sure. My support system has to remind me constantly that it’s OK to take it easy. Slowing down isn’t a negative reflection on who I am; it simply means my circumstances are different from those around me.
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, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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Comments
Giuseppe Soverchia
Sono perfettamente d'accordo con quello che hai detto. Un giorno l'energia c'è, il giorno dopo niente. Oppure nello stesso giorno il cambiamento può verificarsi da un'ora all'altra, come hai descritto tu. Per la gestione dell'energia ho assunto tutto quello che potevo, non c'è stato niente che ha modificato il mio stato.
Merlene Cook
After 50 years with MS, my life is a ping pong journey.
It is only natural when you feel good... you do more. Never knowing when that window closes. Living with the threat of another flareup. How long will it last? ...how severe will it be? ... will it advance on to be permanent? Like 2 steps forward ... one step back. I have daily discussions with myself. Sometimes scolding myself knowing that I pushed too hard. Prolonged the time or did one more thing . I should have chosen to stop earlier. Never getting it right. Hence, a flareup. My advice.....listen to your body. At the onset of numbness or fatigue ...STOP and I mean STOP. There is a short or long term consequences to your decision. Then comes Regret. The fear is progression to permancy. I know the tight rope you walk.
Multiple Scerlosis journey is different for everyone. You have to find a workable path for you....not others. I befriend the inner twin and she scolds me when I steer off the path .
If you read your comments, some of the answers are there. With MS, you cannot store enough energy before you drain the battery. By going full tilt to accomplish things when you feel good with the limited time, spells disaster the next day. Rethink that action. If you can, break down the project. Taking rest periods or even doing segments of the project on different days. ASK yourself ...What way will he least taxing on my body. Trying to keep up is never a good outcome.
In my relapsing remitting early stage, my doctor asked me " Can you see yourself in a wheelchair at 40 ? " The answer was clear. He replied..... "make good decisions for yourself as you go forward. Remove as many stresses and control the things you can " Kept his advice in the back of my mind. I was fortunate to be in that RR stage for 43 years. There is not a perfect agenda for everyone. The disease dictates the way. Some of us have had more control of the hand we have been dealt.
Depending on the progression of MS, the uncertainty walks with you. I wish you the best in your journey.
Joseph Kast
I just want more than one good day to feel great about but unlike today I will feel like garbage tomorrow and I hate going to sleep at night knowing that I will feel like that the next day!!!
Terry
Hard relate.. though I am much older and have different life tasks…
David A. Wynsen
I am 73. I received my first M.S. Dx was when I was 29. I retired from Biochemistry Senior Management position when I was 42. I had worked for three major drug manufacturers. I retired b/c I was MENTALLY exhausted; I felt that I could handle many of the physical challenges fairly well with a little help from family, friends, great employees and employers. However, I permitted myself to be abused. I forced myself to work 60+ hrs/week. I travelled throughout Europe and Asia ~50% of my time. I had a staff of as many as 115 Scientists, most of whom had Ph.D.’s. I have only a Master’s Degree. That disparity caused some significant problems until I could prove myself. As a result of this self-imposed pressure, I pushed myself harder. Too hard. I came to my senses and decided that my wife, my young children, and I deserved a better situation. (Being overworked was MY fault. No one else’s). My stupidity lead to a stroke that caused my wife and children even MORE challenges. I have been using a walker to get around our home. My traveling days have been over for >20 yrs. I miss it. I miss the amazing camaraderie we enjoyed and the lasting relationships we STILL enjoy! In my personal opinion, M.S. is a ‘life-detour.’ ‘The ‘bridge is not out’, and it is not a total road-block. It is only a rutted-road detour, NOT a dead-end. I have to remind myself of that on occasion.
Chin-up, fellow warriors. Life is good.
Letha DeCaires
How wise you are to use the good days to your fullest. I agree, and I have learned to STOP when I am tempted to do one more thing. That has been a game changer.
I also allow myself a recovery day after I have had a great successful physically active day.
You will continue to chart your own path.
Jenny
Oh yes Oh YES!!!
On a great day, I almost think I have this sorted, right everything etc, but soon crash to reality .
Even after 26 years, it is good to hope and the inevitable crash is more familiar but not as bad.
Joe
This coming January will be 10 years diagnosed. I have daily issues surfing the energy/ fatigue waves of my MS. Best wishes and Much, Love & Respect