Wednesday, March 27, 2019

MS Awareness with a Dose of Pollyanna and Kintsugi




So March is MS Awareness month. An entire month devoted to intentionally raising awareness about MS, as opposed to the other 11 months when raising awareness is purely accidental. Rather than the usual “please don't tell me how good I look” post, I thought I'd try something different.

Before I do, though, I have to ask you some questions. While looking for a picture to go along with my post, many of the MS Awareness month pictures had the caption "With awareness, there is hope". Does that mean without awareness, there is no hope? For me to have hope, does every single person in the world need to be aware of MS? Must they be aware of MS in general, or my MS? No offense to the author, but I think we could have done much better.

Thanks for indulging me. Now to resume my regularly scheduled blog.

I want to list what I consider to be the positive things I learned from having MS. This will unquestionably put the spotlight and pressure on Pollyanna, huh? Here we go, in no particular order:

I've learned how to prioritize what (who) is important. Of course, I have to make revisions every so often, but it helps me focus.

I've learned to be more tolerant of people. Being so forgetful, fatigued, and having a general feeling of malaise most of the time has helped me to overlook a lot. That said, when I've had my limit, I've had my limit.

I've learned to recognize my limits and respect them. Most of the time. When my body or brain says, “enough”, I try to chill a bit. Unless I'm driving or in the middle of the grocery store. Wegmans doesn't have a napping area. Wouldn't that be something? That might be an idea for another post right there.

I've learned that being tolerant of people includes being tolerant of my shortcomings, too. That does not mean that I have given up, but as someone who is a perfectionist at heart, I've become more accepting of my best effort. If it falls short of what I call perfection, c'est la vie. I used to say something like good enough isn't good enough. Now, sometimes good enough is good enough.

I've learned that when someone says “you look really good” or “I would never know you were sick” I need to take it as the compliment people intend it to be and not get indignant about having MS.

I've learned that along with being tolerant of people and accepting compliments, I need to be less judgy. As I well know, simply because a person looks fine does not mean they are fine. Just like that inspirational meme you see every so often that goes something like, “Be kind because everyone is fighting a hidden battle”, I try to overlook many things. Again, though, when I reach my limit, I'm done. I am after all, only human.

I've learned how strong I actually am. Even when no one else knows what it takes for me to complete a task, I know. I can tell myself that I'm a badass for doing it all the while knowing my own body is trying to take me out.

I've learned to be proud of what I can accomplish. Another meme you see sporadically that I relate to goes something like this, “Just because someone doesn't see your value, never forget your worth”.

I've learned that no one is me. By that I mean I've tried to stop saying things like “if I can do it, you can do it” or conversely, “if they can do it, I can do it”. No. Everyone has their own limits. Sometimes you can push through them, sometimes you can't. Everyone is different, every day is different. Still, sometimes I make an extra effort, and sometimes, I expect others to make an extra effort as well. Again, I am human.

A while back, I read about the Japanese art of Kintsugi. It's basically taking something broken, and using the imperfections to make something more beautiful. Going back to the “knowing your worth” philosophy, no matter how broken we are, aren't we all more precious than pottery?





Tuesday, February 26, 2019

I'm Still Here

How many times have I been taunted by this blank piece of paper? Countless. I load the program I use, and this blank white rectangle glares at me, daring me to fill it with words. Not with just any words, but words that mean something. Words that say something. Words that matter. Ah, but there's the rub. Matter to whom? Matter to me? Matter to you? So I sit, blinking my eyes at the blinking cursor. After a while, I close the program and do something else.

Today, though, today, I decided to take the dare and put words on this rectangle. You may ask yourself why today? You may also be thinking, darn, I thought she had given up this blog. I decided to write today, because. Because tomorrow is far away. Because tomorrow I might not be able to put words together coherently. Some of you may point out that I don't really do that now. Still, I am writing.



I had an appointment with my neurologist yesterday. Bottom line from that appointment is that we need to do an MRI fairly soon. Brain AND C-spine, with and without contrast (so, like 4 MRI's, really). I may or may not be transitioning into secondary progressive MS. A lovely little stat my neurologist told me: 20% of MS patients transition into secondary progressive within 15 years of their diagnosis. My diagnosis date was October 2004. So I have an 80% chance of not transitioning and I could “just” be having an exacerbation.

See, here's the thing, though. I look okay. At a glance, I may seem like someone who didn't sleep well (I didn't) or someone who might be coming down with something, or you might think I look fine. You can't see the tingles rippling through my body like rivers of electricity. You can't see that I'm having issues with my right eye. You can't see that my balance is questionable (until I do the sidestep jig as I inevitably do). You can't see the constant headache that no medicine can take away. You can't see the tuning forks vibrating in my legs. You can't hear the voice inside that says don't get up, stop trying. You can't see me struggling or fighting. Make no mistake, I am. I am struggling and I am fighting.



The fight is getting more difficult. More difficult to just get up. More difficult to move around. More difficult. But not impossible.

So whatever the MRI shows, I'll face it with tears, anger, sadness, laughter, aches, phantom itches, stumbles, smiles, and scowls. Just like I do now.

Until next time...



If you're curious about the different types of MS, WebMD has concise and easy-to-follow information here.