So many times I wish that I could explain to people what living with MS is really like. At other times I wouldn't dream of putting that knowledge into someone's head. Why should they have to think about it just because that has been my life for about 35 years?
When I was younger, it was easy to talk myself out of the situation. That spasm in my feet at night was just because I worked too hard that day in the garden. That wooziness in my head 3 weeks later was because I just plain old got too hot while mowing the lawn. The cognition decline was from trying to teach 3 children at 3 different levels in our home school.
I think it's probable that most people would do just about anything to avoid grasping that they have multiple sclerosis. I never even gave it a thought until I was reading the book WHEN YOUR BODY SAYS NO!
I'll always remember that moment. The author was telling the story about 2 of his female patients who had MS. As I read, I started to realize that their story was a lot like what I was going through. That's when I got tingles everywhere.
I remember looking up to Heaven and asking "God, are you saying that I have MS?" How I wish I hadn't heard so clearly "Yes, my darling."
So then I knew.
That began my journey of looking for what would get rid of it. I had gotten rid of cancer a number of times. How hard could it be to get rid of MS?
I could not have grasped at that time that there is no getting rid of MS. If there is a way, then I would ask you to share that information in a comment below. There is helping relieve symptoms. There is fighting cognitive decline. There is RESTING often but, as far as I know now, there is no getting rid of MS.
I just found this article and I really like it. If you have MS, or you know someone who does, I pray that this information will help you too.
Lots of love,
Dawn B.
FB group member Lauren Kinsley replied, “The thing with our struggle with multiple sclerosis (MS) is we have to ‘overcome’ daily, weekly, over and over. I will have a GREAT day, when I feel like I’ve never been sick in my life. I am so full of energy and life and love. Then, the next day I’m back to my normal miserable self. These ups and downs are unpredictable and out of my control. How can I overcome this? This is my life. So, I just accept it and take it day by day.”
Thanks, Lauren, for calling out our reality. Dealing with MS ups and downs is a challenge. The unpredictability can make us confused or depressed, but there are ways of dealing with them.
What Causes MS Ups and Downs?
In writing my chronic illness book, I learned that most conditions have their good days and bad days. Like with diabetes, people might have normal blood sugar one day and feel fine. The next morning, they wake up with a high blood sugar and feel awful. Sometimes they know why, and sometimes they don’t.
I think life itself has ups and downs. They’re normal. The world is far too big to control, so things are always changing. As Lauren said, sometimes you just have to accept it.
Without a doubt, the goods and bads of MS days are more intense than most conditions. I’m pretty sure this is because MS is an inflammatory disease. When the inflammation starts, we will be knocked out, even if it doesn’t go to a full-blown flare-up. I sometimes find it helpful to take an anti-inflammatory medicine such as aspirin or ibuprofen on a bad day.
For me, getting too warm means Instant Bad Day. If I wear warm pajamas to bed because the warmth helps me sleep, I will not be able to get up in the morning until I take those clothes off and cool down.
You might notice that psychological stress drains your energy and sets you up for a bad day. Having strategies for avoiding and for coping with stress might prevent those down times.
Many people with MS find that they have good and bad times of day, more so than whole days. I can relate to that; don’t call me between 4 and 7 p.m. if you want an intelligent response. Our bodies have rhythms, and pushing through them can lead to a miserable day. It’s good to schedule our days to allow for downtime during our low periods.
Rhythms of Activity and Rest
A Zen Buddhist story goes: Once a priest was going around and winning throngs of followers by performing spectacular miracles. One of his disciples was walking along a river with a Zen monk. “Our master,” said the disciple, “can stand on one side of the river and write the name of God in letters of fire on the other side.”
“That’s a good trick,” said the Zen monk. “My miracle is that when I’m thirsty, I drink, and when I’m tired, I rest.”
I try to practice the Zen monk’s miracle. (The fire-writing thing doesn’t interest me nearly as much.) Move when your body wants to move; work when it wants to work. Stop and take breaks before you absolutely have to. If we wait until we’re exhausted or in pain, it will take a lot longer to recover.
I’m taking breaks from writing this article every 5 minutes or so. If I don’t, my fingers stop typing right. Some people set timers on their devices for every 15 minutes, 30 minutes, or hour. When it goes off, they move around, they lie down, they breathe, meditate, or pray. Rest the mind as well as the body. That’s how they keep good days good.
Admittedly, this can be hard if you work a demanding job or if you have four kids running around. But we can try.
Coping With Good and Bad Days
On days when your body feels good, do you tend to overdo things? Most of us do, and sometimes it’s worth it. But if you’re like me or like most people with MS, try not to overdo. You’ll pay for it, possibly with more than one bad day to recover. Sometimes we consciously decide to do more than we should because we think what we’re doing is so important or desirable. That might be OK.
But other times, we’re unwilling to say no to requests or opportunities that really could wait. That’s a sure way to have a bad today or tomorrow.
What do you do with bad days? I’ve learned to look at them as opportunities to rest. I try to enjoy staying in bed, maybe catch up on reading or watch a show. I cancel whatever commitments I can.
Sometimes I’ll use my voice recorder to make notes for a story or bring my journal up to date. Meditate. Plan out what to do on the next good day. If the bad day involves pain or spasms, I may have to take something for that.
Sometimes I try to analyze what might be causing the bad day. Am I warm, did I catch a virus, am I stressed out? Did I do too much yesterday, or neglect to exercise, or eat something unhealthy? Sometimes I figure it out, and sometimes the cause remains unknown. I just have to rest.
I know I’m totally blessed to have a life in which I can zone out like that. You may not have that freedom, but I encourage you to rest when you can.
Remember: There will always be ups and downs, but they are not permanent. We will have good days and bad days, good and bad weeks, months, even years. A bad stretch doesn’t mean we’re getting worse; a good day doesn’t mean our MS is going away.
If we have too many consecutive bad days, we might want to let a doctor know. Something could be wrong, but most of the time, ups and downs can be managed. Wishing you more good ones.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
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