Patient Blogs | Multiple Sclerosis
Self-Monitoring Our MS: The Best Self-care Practice I Don’t Do
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Do you keep track of how you’re doing with multiple sclerosis (MS)? Do you write down when you fall, when your legs are stiffer, how much energy you have on a given day? Do you keep track of your medication and write down when you take them? Those practices are called self-monitoring, and they help us live better and help our doctors treat us better. 

Most people with MS do not self-monitor. I know I don’t, and this failure has caused problems for me. But what can I (and others my situation) do to change?

Why Self-Monitoring Helps

Some MS nurses in the Midwest studied how keeping track of symptoms and quality of life could help people living with MS. The article they wrote wasn’t for patients; it was for professionals to get them to encourage us to monitor. They wrote, “Ongoing monitoring of physical, social, and cognitive/mental functioning is important to determine both appropriate counseling and treatment.” 

Like, if we start a new medication, how does the doctor know if it’s helping or not? How do we know? The authors suggest keeping track of a wide range of physical and emotional symptoms. They said our relationships with others, ability to work, to sleep well, and think clearly are important and should also be recorded. 

Over 40 years with MS, I’ve had a lot of changes in function, but since I didn’t write down when things happened, I don’t remember when they happened or what I was doing that may have made them worse or better.

My doctors certainly don’t know my history. Either I never told them, or they’re not my doctors anymore. It’s a mistake to count on doctors to remember your history for you. They don’t care about us as much as we care about ourselves.

The nurse/authors write that keeping good records and sending them to our health care providers (HCPs) will help everyone keep track of what’s going on. Mail or email them, or bring them with you to appointments. That information will help us and our HCPs to set priorities for a visit.

They can put copies of your reports in your chart. I wish I had done this in the years leading up to my disability (SSDI) claim. My docs would have had documentation about how work was getting harder and how my disabilities were progressing. If I had documented my progression, I might have qualified on my first SSDI application, instead of needing appeals and lots of examinations to qualify.

What to Monitor

There are several peer-reviewed questionnaires to record quality of life with MS (MSQoL.) I don’t really like any of them; they are too long, they ask about things that don’t apply to me, or they leave out things that are important.  You can look up or ask your neurologist for a copy of any of the five or six available monitoring tools.

Or you can make up your own, asking about what’s relevant to you. I’m trying to do that now. I’m including things like falling, leg stiffness (can I straighten and bend them?) energy level (how often do I need to lie down?), how long does it take to get dressed, and how hard is it?

You will have your own list, which might include sexual function, social interaction -- are you getting lonely? – sleeping, bladder and bowel function, or other issues of concern to you. Tremors? Muscle weakness? As we know, MS can affect almost any part of our bodies and minds, so your list will probably be unique to you. 

Mental health monitoring is important – are you sad, are you isolating, are you happy? You might do a short depression screening on yourself once a month. Depression screens are on the internet. Keeping records of emotional changes can prevent some serious depression.

Monitoring Our Self-Care

Do you write down your medications and record when you take them? Skipping meds or taking extra doses can really make us sick -- like with Copaxone, a drug you’re supposed to take three times a week, at least 48 hours apart. It would be easy to make a mistake and miss a dose, or take them too close together.

I don’t take a disease-modifying drug, but since I developed neurogenic bowel – which feels like the world’s worst constipation – I’m on several OTC meds to help the bowels move. I’m supposed to take a fiber pill twice a day. If I go a day without a movement, I add a stool softener the second day. If that doesn’t work, I’ll take a suppository on the third day. 

That schedule works pretty well, but how do I remember what day I’m on? (In fact, I just now realized I forgot this morning’s fiber.) A weekly medication box helps with remembering medications, but I don’t know in advance when I’ll need the stool softener or the suppository. 

Self-monitoring would also help me keep up with exercise, meditation, and other practices. If I don’t write them down somewhere, I might forget some things I really want to do. For example, I feel much better on days when I get outside and days where I see other people. If I keep records, I might notice, “Wow. I haven’t been out in 3 days. No wonder I’m feeling sad.”

How to Monitor

OK, now I’m getting into the hard part. Self-monitoring only works if you remember to do it, and if you do it in a way you can easily refer to and understand. 

Some people keep records on their devices. There are several good apps for medication reminders and others for keeping track of symptoms. If you’re not that comfortable with tech, you can buy a notebook or two and make lists of what symptoms and what practices or meds you’re monitoring. Or make a nice-looking chart for 1 week or month and make a bunch of copies. 

We need some way of recording our symptoms, such as a numerical scale of severity of things like fatigue, pain, confusion, and other symptoms, where maybe 5 is the worst and 1 is the least. It’s also good to write descriptions of things like spasticity (One I wrote recently: “I woke up with my right leg crossed over my left, and I had to use both hands to uncross them.” My physiatrist was interested in that.)

Barriers to Self-Monitoring

I know monitoring is important, so why do I still resist it? Am I just lazy? I believe the real reason is: I’d rather not think about it. In my late 50s, I went through about 2 years of fairly rapid progression and wound up in a wheelchair. I didn’t record at all during that scary time, and now I can’t even remember exactly when it happened or how I felt. 

I focused on other things rather than what has happening with my body. I’d probably do that again because who wants to focus on such hurtful things? If I had kept track, though, I might have been able to get some help from doctors or physical therapists or other healers. But I was scared so I ignored it.

Other reasons people don’t monitor include not knowing how, having too much confusion in their life, being too busy taking care of a home, or too tired after a day of work. 

But it’s worth it to set aside a few minutes each day to write down on paper or an app what’s happening and make sure you took your meds. 

NARCOMS, a national registry that monitors your progress every 6 months, is at www.narcoms.org. I usually like filling out my NARCOMS survey. It takes about 30 minutes, it makes me think about how I’m doing, and it contributes to the scientific understanding of MS.

 

To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.

 

 

 

Photo Credit: Arijit Mondal / Moment via Getty Images

 

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David Spero, RN

David Spero, RN

Diagnosed since 1989

David Spero, RN, became a writer and health coach after being diagnosed with multiple sclerosis in 1989. He writes books and blogs about living with chronic illness and the social causes of illness. A married father of two and grandfather of one, Spero is active in causes including health care, peace, and the environment. See his books; follow him on Medium or Twitter.

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