Multiple sclerosis is a strict teacher, and the lessons never stop. As I got to work on this post about what I’ve learned from 40 years of MS, writing it taught me I still have a lot to learn. The piece was due on November 8, so I started it 4 days ahead, thinking that was plenty of time. The next day, MS showed me how wrong I was.
That day, I developed a nasty urinary tract infection. I’ve had those before and treated them without major problems, but this time there was something new. My bowels stopped working and I needed to go to hospital to get control of them. I was there for 4 nights and came home still needing to rest.
So, I couldn’t finish the article until now, and I learned something very valuable: Don’t wait until the last minute, because with MS, there may not be any last minute. Don’t put off important things, such as showing people you love them. Do them now. We’re not going to live forever, and MS reminds us of our mortality every day.
MS teaches other valuable lessons, which inspired my book The Art of Getting Well.
The first of these is to slow down. Don’t rush by your life; go slow and appreciate it. When I’m out with other people, it sometimes bugs them the way I stop to look at flowers or watch the birds. I usually leave early to get places, so I don’t have to hurry. I try to focus on one thing at a time and not multitask, because my MS brain won’t do two things at once.
MS forces us to learn skills. The most critical skill I have learned from MS is how to find, ask for, and accept help. Whatever our disability score, we can accomplish most of what we need with the help of other people. Helpers can be family, friends, neighbors, health professionals, or government agencies. But a lot of people won’t ask. American culture has an almost insane focus on individual self-reliance. We’re not supposed to need help; it makes us weak or dependent.
For me, extreme independence is a myth, a bad idea designed to get us to buy more stuff. MS disabused me of the belief I could do everything for myself. Other people can’t either, and they make themselves crazy trying.
People have other reasons for not seeking help. Helpers may not do things the way you would prefer. We might feel we’re in their debt and worry about how we will pay them back. We might feel guilty for not being able to do for ourselves or worry that a helper will take advantage of us.
Some people are good at being helped; others not so much. There are communication skills and attitudes we need to learn to be a good “helpee” and not get victimized by helpers. Fortunately, MS usually gives people time to build up those skills before our needs become too great.
Another crucial attitude for living with MS is valuing yourself and standing up for yourself. We have to be able to say “No” to other people’s demands if they interfere with our resting, exercising, or other needed practices that keep our bodies going. If people keep their heat on too high and it’s knocking me out, I need to be able to tell them to turn it down.
Like many of us, I’m still not very good at this. I’m much more likely to advocate for you than for myself, but MS keeps trying to teach me.
People talk a lot about things like work/life balance, but with MS, balance is not optional. If we overdo things or push too hard, we risk collapsing, while if we sit around all day, we lose the functions we have. We have to keep moving, but we have to recognize and respect our limits.
Part of keeping balance is finding our rhythm. I can’t tell you how much easier things go when I have a regular routine. I also think rhythm helps our bodies function, which you might notice if you try walking to music.
The other part of balance is flexibility. MS is one long process of adjustment. You wake up in the morning, and you can’t just assume you will be able to jump out of bed. Every day can bring a new challenge, so we have to learn to keep adjusting, keep modifying, keep getting help, keep maintaining the functions we have.
One of the most important things I’ve learned is to focus on my body, to put my body first. If it’s hot out and I don’t tolerate heat, I’ll stay inside, maybe go down the basement where it’s cooler. I’ll stay up late once in a while for an important occasion, but I try to get enough sleep before and after. The other most important thing is gratitude for what I still have and can still do, instead of focusing on what I have lost. I find that being grateful brings me happiness.
I wish I could graduate from the school of MS. I used to tell MS, “I’ve learned what you’re trying to teach me, now can you let me go,” but apparently I’m still a grad student. I’ve got degrees in coping with reality and accepting myself, and while I’d love to be able to play basketball and hike in the woods, like I used to, I appreciate the wisdom MS has taught me.
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Photo Credit: Artur Debat / Moment via Getty Images
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