Multiple Sclerosis Diagnosis

When I was diagnosed with MS in 2009, my 4 loudest symptoms were numbness, muscle twitching, balance issue, and fatigue. I classify the first 3 symptoms as sensory. It took awhile but I did acclimate to the new feelings. In the beginning, I would rub my left hand and look down at it constantly. It was always reminding me of my new reality. It was a wonderful day when I realized I had not wasted a lot of time annoyed at these symptoms. I am pretty sure the very next day I was annoyed again…but alas. 😊 

Multiple Sclerosis Symptom: Fatigue

Above, I talked about 3 symptoms and left out fatigue. I am quite certain a person can not get used to fatigue. It is the worst, period, end of story. Okay, so I guess I should pause and remind you that this is my story and perspective on my own MS symptoms. Let me share with you a little bit about fatigue. 

Fatigue is not solved with a nap. Fatigue is not just, “I am tired.” It is a different level of tired. In fact, I cannot always sleep when I am fatigued. I know that sounds crazy, but it is true. It is like my body is powering down and I just need to sit down. I could be standing while washing dishes and then just find myself sitting on the rug in front of the sink. It is like I am on empty. I just have absolutely no energy. 

When I was diagnosed, my 4 kids were between the ages of 1 and 6. Nap time was a regular part of our schedule. Of course, as a busy mom, I loved this time of day. I was good at keeping a schedule. I was almost always home at 1:00pm! It kept me sane and my kiddos rested. Although I have to admit, I was looking forward to the day that we could stay out all day and not pause for kiddo rest time. Then I was diagnosed, and I was the one that needed a nap. So here we are over a decade later and I am still pausing mid-day to rest. Big time eye roll! As a person that likes to keep going and go on adventures and not pause, this has been hard. I don’t want to stop. 

Now I have older kids and they don’t need to nap. In fact, they grew out of naps over 8 years ago. I have made peace with needing a rest every day. It is something that I can address myself. I don’t need to go to the doctor every time I feel tired. It is still annoying when everyone wants to go go go but I am so thankful for my family that cares so much and makes room for me to pause and recharge. 

I always remind people that there is so much of our disease that we cannot control. But, we can work on reducing stress and managing our fatigue. If we do those things well, typically our other symptoms will not be as much of a bother. When I am super worn out, my limbs go numb and my muscle twitching increases. I may not even realize that I am tired until I start to notice my sensory issues and it becomes clear why they are so much worse. 

Lifestyle Change to help my Multiple Sclerosis Symptoms

Now, I have a sleep recipe. This recipe doesn’t include all the times I just need to sit down and not use energy, but this is what I plan on every day. I am headed to bed at 9. I am laying down in the 9 o’clock hour and asleep by 10. I sleep until the 5 o’clock hour. Thank goodness for 7 good hours of sleep because I have had seasons of insomnia that messed up my recipe. After lunch, I need to lay down and I will normally sleep anywhere from 15-45 minutes. I prefer a half hour or less because I tend to feel less groggy after a nap of that length. If I am able to be true to my recipe, I can manage my life better. 

Chronic Fatigue Research

If there are studies related to fatigue, I make sure to sign up. Just recently I did one that was a lot of education about fatigue and how to manage it. It would have been perfect to have that resource in my first year after diagnosis. I made sure to tell the organizers that they should make it available to clinics to give to patients as a resource. In that study, they taught about energy banking and redoing regular activities so that they require less of us. I was already practicing many of the principles they taught us. 

When we are faced with challenges, we show up and fight back against whatever is dragging us down. I love what this says about the human spirit. I am certain my fatigue will not go away, but I try very hard to make the most of the hours that I do feel like I have energy. We can do so much when we make our minds up to do so.