Sunday, July 3, 2016

The Spoon Theory written by and spoken by Christine Miserandino



I’ve been searching for an effective way to let my teen know understand my MS. I told her about what it does to the body, how it makes me tired and how it effects my body. It was clear that she didn’t understand because her eyes glazed over half-way through my multiple attempts to explain what’s changed about me. Of course, I also am still discovering what has changed as well, as you know. When I posted my last blog to Facebook, a friend of mine asked me if I knew about “The Spoon Theory.” He told me that he’d tell me about it when he saw me.


Patience isn’t my strong suit, so I hit up Google and found Christine Miserandino, a writer, blogger, speaker and an active lupus patient advocate. Her “Spoon Theory” is about communicating chronic illness to others. You can either read it on her blog, or you can watch the video. Honestly, she’s such a character, I was very glad when I found the video posted below. Now she has Lupus, which is different. But because there are many symptoms that are shared with MS, it was one of the possibilities that had to be eliminated in order to give me my diagnosis. But for those who have trouble getting people to understand how it feels to have a chronic illness such as Fibromyalgia, Lupus, MS, and Rheumatoid Arthritis, this might help. 


Tuesday, June 28, 2016

What you can't see may surprise you

It’s been a crazy few weeks while I figure out this rather nebulous “thing” that’s inserted itself into my life. I keep thinking that I might have imagined the symptoms and if I ignore my MS it won’t be real. I'm not used to having physical limitations. Ask my mother, I’m the queen of burning my candle at both ends and have done it since I was nine or ten years old. I just truck right on through and then wonder why my body suddenly tells me I've had enough. So when my symptoms manifested rather largely on a Tuesday, they didn’t get in the way of working the crazy hours I’ve been working. And I did not give myself time to recover at all so that on that Friday of that week I crashed and burned.

Let's just say that I didn’t have a true grasp of the concept of fatigue being a physical symptom until I had to call my husband so that he could give me a ride home from work. Mental exhaustion I'm familiar with, as I am with sleep deprivation and how depression makes you feel like sleeping. This was my body feeling like I was loaded down with sandbags, with my brain still fully alive. I took a nap but then had insomnia that night. The truth is that my immune system is attacking my central nervous system. That by itself is hard on my body and stress (physical and mental), heat, fatigue, or illness make it worse. Even after all of that, I feel stupid for being freaked out by it.

It’s very interesting having an “invisible disease.” The things that have changed continue to surprise me and aren’t things that are immediately obvious to others. I spend a lot of time reassuring those who love me that I'll be fine. And of course, I will. But that doesn't mean my life isn't challenging in a way it wasn't before. When I’m feeling good, I can’t just do “all of the things” to try to compensate for those times I’m not good. It's difficult to enforce my limits with others when I don't seem sick.

I'm sure people wonder how I can run 2-3 miles 3 times per week most of the time but also need certain accommodations for physical limitations at the same time? It seems asinine in my own mind that I would consider getting a handicap parking permit while continuing to be a runner, and maintaining a career where I stand 99% of the time. When I asked my neurologist about it I expected him to at least roll his eyes.

But he didn't, of course. He listened to my internal conflict over what is "knowing my limits" compared to "giving up." It was particularly awesome that he shared his own personal experience with pushing his own body past its physical limitations. (I can't say I'm overly surprised that he's a triathlete.) I had to be reminded that the human body is only capable of so much, and on top of what is normal, I have MS. If I want to maintain my quality of life, I have to make smart choices.

So what does that mean? I know if I want to do something that involves slightly less than ideal conditions, I have to to make adjustments in order to make that possible. I budget my energy and choose my battles. If I want to go running on a regular basis, I should try to do that before it hits 70 degrees outside. If I want to do a race as temperatures rise to the 90s, I slow down and understand the possible pitfalls. I'll be honest. It still doesn't seem like this is my life I'm talking about. After all, I'm the one on the left in the photo below. I'd just done a 5K with my 13-year-old daughter at my side. It was fun and I finished strong. And doing it felt important in a way it never had before.

My Daughter, Sydney and Me. 

Tuesday, May 31, 2016

The Wall

Yeah, it’s been awhile. But I didn’t want to just run my virtual mouth in this space. I don’t want it to be a daily piss and moan blog because who really wants to read that? I did feel inspired today to share my thoughts with all 4 of my readers. ;)

I’ve been struggling, since my diagnosis, to make peace with the fact that I have MS. After all, confirmation that all of the weird crap that was happening to my body had a name and while it’s sucky, it isn’t the worst case scenario. I also understand that a positive outlook is vital to my overall well-being and in all likelihood have a hand in determining the course of the disease. I’ve had a lot of time to mull that over.

A friend, and former neighbor of mine was diagnosed at the end of last summer. And while I’m significantly older than she is, she’s excellent company. She’s so vivacious that it’s difficult to be in a bad mood with her around. She also happens to have kids that my kids love to play with. When I did the 2016 Walk MS: Madison, WI with my family we met up with hers.

And while no two people’s MS is the same, she understands what I’m going through in a way that someone without MS can’t. That was a hug that was a long time coming. And it was nice to talk about the stuff that sucks in the midst of catching up a little over that 3 miles.

The most memorable thing about that day occurred early on when we watched someone go by in a wheelchair and she asked, “Does it freak you out to see that?”

My answer? “No. The possibility of going blind freaks me out more.”

Before then, that particular fear was something I had only ever shared with my husband, early on in the diagnosis process. I can’t think about that for too long without coming a little unhinged even though total blindness is as likely as the possibility of ending up in a wheelchair. Statistically speaking, it's not actually the norm. But the unpredictable nature of the disease is that it could happen without warning and there's nothing I can actually do to prevent it entirely. Suffice it to say that when I’d learned that my optic nerve had not yet taken damage was one of the best things I’d heard since the results of the spinal tap came through.

I went on a run this morning. I have a race at the end of the month. It would be nice not to burn out in the middle and I’ve slacked off a bit in that department. I’d been going on walks here and there and I really don’t enjoy it as exercise. That’s more of a social activity for me. I love running no matter how slow and un-glamorous I am while doing it. It gives me time to think. It’s an activity I love because it shows me what I am capable of physically. I’m 42 years old, overweight (though cutting back on my portions and adopting better eating habits has helped me lose 25 lbs. since the beginning of the year), and of course there’s that pesky MS thing I’m supposed to be making peace with.

When I run, I make a choice to actually do it no matter what. I do it in spite of how tired I am and much it hurts. Training for a race means that I challenge myself to run farther each week before I hit “the wall.” I become able to run farther because I don’t give up. I love to run because I’m in control even though I’m really not. I’ve begun to push myself again and in that, I’m relearning my body. I muscled through shin splints, pushed myself over a hill I’d forgotten to expect and I punched a hole through the wall when I hit it. What I realized was that while I’m out of practice, I don’t run like I have MS, I run like I don’t have MS. 

I don’t have to make peace with it in order to have a positive outlook about it. 

Holy crap what a concept! MS sucks. There's really nothing good about it. Why on earth would I want to make peace with it? I just know that I'll always find a way to keep going because I know exactly what I'm capable of. 

Friday, April 22, 2016

When too much information doesn't have all of the answers even if I have a really awesome husband named Tom

Have you ever had so much to say that you didn’t know where to start? My original purpose of this blog had to do with my recent diagnosis of MS, ironically, during MS awareness week. Yep…this girl’s definitely aware. And I’m the type of person who likes to busily look for solutions to the big problems so that I don’t fall apart. It’s not as cold and calculating as it seems. I am simply aware that I don’t always have the luxury of melting down in the moment. So I like to get all of the information, deal with it, freak out afterwards.

MS is such a pain in the ass this way. There’s information. But I’m not entirely convinced that most of that comes from people who know what the hell they’re talking about.

Think about it this way. When you read “my recent diagnosis of MS” some of you know pieces of what it is, whether it’s a list of symptoms or a memory of someone you knew who had it. I know that the first time it had been brought up to me, this was the extent of my knowledge of what MS was. And there are those who have up close and personal experience with MS. They either have it or they know someone who has it. And this group feels strongly about how one should approach having MS. Now, make MS a disease that is diagnosed by eliminating all other diseases, disorders and medical conditions that share symptoms of MS. And there are as many different experiences between patients who have the disease as there are patients with the disease. Though statistically speaking, it isn’t at all a certainty that I’ll need a wheelchair or that I’ll become disabled before I need to retire. However, if I lose my mind someday, chances are it’s because I forgot where I put it.

I stayed off of web forums during the diagnosis process. Nothing is more misleading than vehemently declared anecdotal evidence that EVERYONE needs to follow. And if anyone tells you that getting spinal tap is paramount to torture should try being the mom at Warped Tour. But as I’m dealing with the changes and challenges of actually living with it, I’m scouring the internet for stories of people who have had similar concerns. It was my hope that others could shed some light on what they’ve done to either make it better for themselves, or to cope with the reality that there are some aspects of this that are un-fixable. There are many things about health and wellness, pain management, fighting fatigue, fighting the bankruptcy inducing healthcare system in this country…

(Yeah, I went there. You don’t want to know what I just deleted.) 

Aaand…back to the point. The advice out there... Some of it speaks to me. Some of it is total garbage. There’s a plethora of information that floats somewhere between yea and nay. What I could learn about my situation has been helpful, if for no other reason than to know I’m not alone. But there are things people don’t seem to talk about and even then literature you get upon diagnosis danced around but ultimately failed to answer some of my questions. It doesn’t take a degree in medicine to tell me that having an incurable disease with an unpredictable prognosis will mess with a person’s self-image and emotional well-being. But of all of the contributing factors discussed repeatedly, there wasn’t a single reference to the possibility that having MS would change my face.

Fuck.

I’m not fishing for compliments or sympathy. I'm just being honest. I’m not saying this to get people to tell me how bad it isn’t and how much worse I could have it or that they don’t even see it. I know all of these things. I know it’s superficial. But it sure as shit isn’t nothing. It’s my face. Today I freaked out. Tomorrow I'll work on how I'll deal with it.

Thursday, April 21, 2016

Blah...blah...blah...and some Chicken Shawarma

What does a person write on the first post of a new blog? It’s been awhile since I’ve blogged, much less started a new blog. I lose interest in it I guess. I like Facebook because the information hits a lot of people quickly. I like Twitter because it restricts my wordiness a bit. But if someone wanted to get to know the real me, those places only reveal things like my unhealthy infatuation with Richard Armitage and my weird sense of humor. Oh! And of course since I parent 3 kids (2 at home, 1 grown), work for a living and basically have no life, I post photos of my food, pets and kids.

Now, I won’t promise you that I won’t do that here from time to time, but a blog gets a little more personal. I also don't claim to be interesting or that you'll get my sense of humor. There might be TMI. I might say things you don’t agree with or don’t like. But since this blog is about me those things are easy to avoid by not reading my blog. I’ll try not to be an asshole about it. I said try. I would appreciate the same in return. I'll post something real later. But for now, here's a photo of some chicken Shawarma I made last week.