MS Understanding Month

March is Multiple Sclerosis Awareness Month.

Nineteen years ago today, I was diagnosed with MS. Beware the Ides of March, indeed.

Awareness means noticing that something exists. It can be as superficial as someone saying, Yeah, I’ve heard of multiple sclerosis. Or they may have heard a doctor bring it up on a TV show. If you ask them what they know about it, they’ll shift uncomfortably before finding a way to change the subject. 

The opposite of awareness is obliviousness. Since they don’t have multiple sclerosis, they don’t think about it. Or they might think it’s something in peoples’ heads. Even worse, they might not care. Yes, it is progress to get clueless people out of oblivion, but that’s a baby step. 

Awareness isn’t deep enough. True progress isn’t increasing the number of people who can say, Hey, I know that Multiple Sclerosis is a real condition. There’s a deeper need. It’s the realization of what people with MS need and deserve. It’s the need for people with MS to learn about this unwelcome roommate living in our house so that we can live our best lives. It’s participatory both for those with MS and those without. It’s more than awareness. It’s understanding.

I wish that March were Multiple Sclerosis Understanding Month. 

Understanding Multiple Sclerosis IS doing what is best for those with MS

Embrace Self-Care

Self-care. It’s considered a dirty word by some. Others may see it as selfishness. People with MS may consider it an acknowledgement of what MS has taken away from us.

But self-care is a sign of strength and control. It’s part of the healing process. It’s part of knowing who you are so that you recognize what you can do instead of being mired down in what you can’t. It’s power. 

When we’re not taking care of ourselves, we’re letting MS win. We cede control to this unpredictable illness instead of living despite it.

I haven’t posted to my blog in over a year. Any book, mailing list, or other “expert” sources would say that’s too long. For a while, I did buy into that guilt. After all, since I’m sheltering in place, I have more time to blog, don’t I?

No, I didn’t have time to blog. Sheltering in place brought a new series of messy situations, and I was adjusting to the changes brought on by the pandemic. I was still at home, but so were the folks who normally aren’t there. I suddenly had to adjust to the noise in the house from having two boys in different grades taking classes while their father was teaching collegiate courses remotely. Then add in the challenges of a sensitivity to sound and an open floor plan and life at home became a pressure cooker. 

Even regular activities like grocery shopping took on a new light. My husband was no longer picking up a few forgotten items. My boys were no longer eating lunch in their all-you-can-eat  school cafeteria, so I had to make sure there were lunch items around. Oh, and they’re teenage boys who consider 3 sandwiches and half a bag of chips a small lunch. 

Screw the experts.

Protect Your Self-Care

I have a hard time regularly setting aside time for self-care. Even those who are very good at scheduling self-care struggle with protecting that time. 

Sometimes self-care involves other people to either help or hurt. I remember to speak up. 

Having fun with my family is important to me, and it can be tough competing with electronics. When I was younger, my family played cards and board games frequently. During holidays, we’d play party games nearly every night. When my boys were littler, and I was more mobile, we’d hold Wii Tennis and Bowling Team Tournaments. So I’ve reminded the boys how much I enjoy playing games with them. Younger son has plenty of online party games we’ll play on weekends.

Unfortunately, others may not respect your self-care time or approve of how you care for yourself. People understand when I have plans with others but don’t give appointments with myself the same regard, I also run into situations where people try to join in when I really just want to be alone.

Here’s a pre-COVID situation –

Friend: Whatcha doin’?

Me: Just taking some time to myself.

Friend: Come over to my place and hang out.

Me: No thanks, I’m settled in here.

Friend: I could come over. I’ll grab takeout, and we can watch a movie.

Me: Let’s get together some other time. I’m just up for “Me Time”.

Disappointed Friend: Oh.

And after the call, I now have a guilt trip invading my self-care.

Understanding is NOT about others ignoring your needs because they think they know best

If I had a nickel for every time someone told me what I “should” be doing to address my MS, I’d top Powerball winnings. Armchair quarterbacking is far too common for folks with chronic illnesses. I’ve gotten plenty of unsolicited advice about what diet I should be following, what exercises I should be doing, and what I should be thinking. 

That’s the exact opposite of understanding. 

The unsolicited advice is coming from people because of something someone told them. I’m my mother’s Designated Multiple Sclerosis Patient. Because she loves me, she thinks that gives her the right to talk about my MS with anyone she talks to. And if she’s talking to someone who has a Designated Multiple Sclerosis Patient, she will be freely sharing my entire medical information and other intimate details about my life. Then she’ll bring the details about the conversation back to me. In future conversations, Mom will mention this person to me and want to share updates about what that person has done since our previous conversation. I do not know this person. For some reason, I’m supposed to keep a database of People With Multiple Sclerosis and prioritize thinking about and learning about them instead of the people that I actually see and know.

It goes beyond conversations. Read it in a magazine? Pass it along as well-documented research. Catch a three-minute segment on a TV morning show? Pass it along as expert medical advice. These people have never met me. They have never examined my medical chart or any of my medical history, but they have to be sharing important information critical for me. As long as anyone says multiple sclerosis, the information must be so valuable that I need to drop everything to listen and then follow. 

And the person is sharing information with you that you’d never before. Except when it isn’t.

Mom: Amy, I’ve just found out that your MS medicine could damage your liver,

Me: Of course it can.

Mom: You already knew?

Me: Why do you think my neurologist sends me for regular blood work? To check my liver.

Oh, and watch out if they’re not satisfied with your current health, because then you’ll get the amateur physicians in your realm planning out your future.

My Uneducated Medical Team (MUMT): You need to go back to physical therapy since you’re not going up and down steps.

Me: Going to physical therapy once or twice a week won’t allow me to climb stairs.

MUMT: But the in-home physical therapist said you were close!

Me: I’m strengthening my muscles in my online gym that focuses on MS so that I’ll be able to climb steps. I’ve already noticed that my arms and core are stronger.

MUMT: But you’re not going up stairs. And you’re not walking very much. You need to practice more each day.

Me: Could you remind me where you got your neurology degree?

MUMT: I KNOW I don’t have a degree. You don’t have to be mean.

Actually, I do. Sometimes it’s the only way to get them to stop.

One positive about the pandemic? Since my mom doesn’t use a computer, I can roll my eyes as often as I’d like during a phone call without a lecture. But when dealing with people online, make sure that eye rolls are on the list of 1000+ Things Not To Do On Zoom. 

There’s so much more….

I know, I know, I’ve got a lot here. But I also have only scratched the tip of the giant iceberg. I’ll pick it up more in my next post.