Just days before her 25th birthday, Elizabeth found out she has MS. She now wonders if the “full life with all of the trimmings” that she had planned will be possible, given her fatigue and other symptoms.
Wellness toolkit (the tools used by Elizabeth and more)
I know I can do this - May 2012
I found out I had MS 10 days before my 25th birthday. I remember sitting in the doctor's office, confused about what my diagnosis meant and how it would affect my future. I had just finished graduate school, I was in my second "real" job ever, and I had been planning on a full life with all of the trimmings: a marriage, career, kids and travel. I remember wondering if any of those would be possible with MS. I suddenly didn't know what I'd be able to do and for how long.
The diagnosis took a while to get used to—and still does. I approach my two hours in the MRI tube as an annual exercise in patience, which was never one of my strongest virtues. And each day still brings the unknown. Will I have enough energy to do everything I planned to do today?
The kind of fatigue MS has saddled me with can be unrelenting. I find myself constantly working, both physically and mentally, to overcome it. There are times when I think I'll never feel good enough to move around again – and why bother? I'll just feel crappy again soon enough.
Exercise definitely makes me feel better, but should I power through the fatigue? And how do I know when to listen to my body? The signals can be confusing. I am seeking better coping mechanisms for my fatigue. A better, more flexible schedule would help me stay active. I find that when I feel really good, I tend to go all out and do as much as possible. When I'm fatigued, finding the motivation to be active again can take days, even when my energy’s back. It's hard to overcome the fatigue mentally, as much as physically.
In the next few years, my husband and I hope to start a family. Such a life change is sure to bring with it its own set of challenges. I want to pass on healthy habits to my children – the habits I need to learn myself – and follow a path toward better wellness as a person who has MS, not as someone who is defined by it.
MS takes a lot away. I'd like to be one of the people who can say they've gained something as a result of this diagnosis. I want to change my frame of mind from "I think I might do this" to "I know I can do this."
To tell or not to tell – July 2012
How do I tell them? My friends on a popular social media platform. All 268 of them. Some of them I haven’t talked to, really, since the day I left high school, or in a few cases, middle school. Others I talked to yesterday or the month before. Regardless, the majority—about 90% of them—haven’t the faintest idea that I have MS or that I’ve been living with it for 5 years or that it’s been in the back of my mind every day, informing more decisions than I care to admit. How do I tell them about MS when I’m about to start this exciting program, Everyday Matters?
When asked by the coordinators of the Everyday Matters program if I was ready to be “out there” about my MS in a very public way, I truthfully answered no, but that I’d figure it out as I went along. In the few weeks I had to prepare, I visited a whole range of emotions, from elation to fear to determination. Would people be mad that I’d never shared this before? What if someone stopped talking to me? What if a future employer found out? How would I deal with the attention, the questions, the scrutiny, since I, print journalist by training, was used to writing about the news, not being the story?
Then I met the other four participants—Brenda, Connie, Sallie, and Jim. (If you haven’t met them through this site, please take the time to do so.) I came away from our weekend-long meeting with a new feeling—one that I’ve never felt before in relation with my disease: a lack of fear about others finding out about my diagnosis. Here were four other people who had found the strength to come forward and say, “I have MS, and I want to be a part of something bigger.” Plus, we were in this together. If they could do it with me, that would make it seem much less daunting.
Now to Break the News
When I first was diagnosed, my first resort was to turn inward. I didn’t want to be seen as “damaged,” or as less of a person now that I had a long-term illness. I didn’t want pity or concessions. I didn’t want the first words out of someone’s mouth, after “hi,” to be “how are you feeling?” with the sad, “I know you’re sick” eyes. I wanted to be treated exactly the same way as before, even if I didn’t feel exactly the same way as before about myself, physically or mentally.
But now, I want people to know because I’m no longer afraid of how they’ll treat me. I’ve come to the realization that I’m still the same Liz, the one who laughs at every joke (no matter how groan-worthy), lives for trivia, and has a relentless sweet tooth. But most importantly, I want to show that a person diagnosed with MS could be your friend, your coworker, your former college roommate—and this is just one of the stories.
But how to break the news? I’ve posted this message: “Exciting news! I’ve been selected as one of five participants for Everyday Matters, a program sponsored by the National MS Society. I’d love it if you’d follow my blog, watch the videos, or leave feedback. And yes, I have MS. I was diagnosed 5 years ago in October 2007. My goal in the program: to learn how to live better with a disease that can change daily.”
I know MS has taught me something in the past five years: I’m no longer afraid of what anyone will say in response to that message.
Fatigue – August 2012
Today, I'm trying to find happiness in small things. I don't feel especially happy or like there's much in the future at the moment.
I had a rough weekend. Saturday morning saddled me with a fatigue that didn't let up all day. I didn't feel like myself until about 10 p.m. Though I didn't spend the entire day doing nothing (my husband, a rabid movie buff, not to mention comic-book nerd, took me to the movies for a nice day out), I felt like this past Saturday was just one in a long string of weekend days where nothing distinguishes among the fatigue.
Sunday went a little better--I reorganized two cabinets and cleaned up the kitchen counters in my constant battle against clutter. But the loss of Saturday--one of only two weekend days in an otherwise packed week--just seemed like such a waste. And it happens more times than I care to admit.
To get to my job, I have two options: take the train line in my town that takes nearly two hours to reach Penn Station (I can almost walk faster at certain points), or rouse my husband (summertime only) to drive me 20 minutes to another station, where it only take 45 minutes. I know what you're thinking: why don't I live closer to work? Well, we’re very fortunate to own a house, Dave lives close to his job, and truthfully, who wants to pay, at minimum, $3,000 a month for an apartment that, in any other city, would be described as a generously sized walk-in closet? Plus, city life has its charms, but I don’t care for schlepping my groceries home.
By the end of the week, I'm exhausted from the commute, the people, and the bustle (ironically, exactly the same thing that attracted me to the NYC-area in the first place). But it's the MS-brand of fatigue that really takes the wind out of me. Muscles long forgotten about--or didn’t even know existed--ache, refusing to move the way I want them to. Showering and dressing can take up all of my strength rather than feel renewing. My brain doesn't work as well either, descending into a fog where even conveying a simple idea is a monumental task. I remember one ambitious Saturday not too long ago. Determined to overcome the fatigue since it never seems to matter what I do regardless, I was sorting through a storage shed. It took me nearly 3 minutes to ask Dave, "Could you get the suitcase?" because though I could picture the exact suitcase I was talking about, I had utterly forgotten the words. And since Dave hasn't (yet) learned how to read my mind, he didn't know what I wanted. I started to cry from frustration. But he told me that no matter how long it took me to say something or remember the word, it was OK. That tomorrow I would feel better. That later, I would feel more like myself. That after I got some more rest, I would be able to do more. In that moment, I just hated feeling so helpless.
So today, I’m still feeling some fatigue remnants. The mercury is registering over 90 degrees, and though I’m ensconced in the air conditioning, the thought of even a short walk around the block seems overwhelming. I’m trying to do my three gratitudes for the day, to remind myself that though, in this moment, I feel like I’ve been stripped of some of my freedom, I have much to be grateful for. I could just use some help.
Stress and MS – August 2012
I feel like I could write a book about stress, just from my own experience these past five years. I mean, life is stressful without a chronic illness that has no chance of going away, isn't it? And then suddenly, there you are, living your life, with all of its demands and craziness and then you get the diagnosis. You have MS.
I have MS. What? I mean, I can't have MS. I have a job. And a commute. And plans. And no time for this. Learning to plan around a disease? I can barely plan my breakfast for the next day. Having to think ahead about stuff? None of these things were in my realm of imagination at all, especially not as a 24 year old (and let’s face it, I’m not much better today).
Do you know that after five years of living with MS that I still have trouble with the stresses? You'd think by now that I'd have everything down pat: the doctors' visits and the modified behaviors (why am I waiting for the bus in 102-degree heat instead of hailing a cab?). There are some days when I still feel like I'm newly diagnosed and just learning everything for the first time, when I think, "why are my feet numb? I'm not sitting weird..." before I remember that, duh, that's the MS creating those wonderful sensations.
While talking with life coach Michelle about ways I could try to reduce my stress for the week, I found myself actively stressing about the solutions I came up with. Find 15 minutes to sit by the bay? Where was I going to find the time, much less the willpower, to put myself in the car (forget the walking shoes; any weather over 90 means I'm in air conditioning) and drive the 2 minutes to go sit at the beach, where I knew I'd just worry about all the things I could be doing instead?
Clearly, Project De-stress isn't going to be an overnight success. Or even a weeklong one. Really, despite tossing it over in my head countless times, I can't put a deadline on it--and anyone who knows me knows that I love a deadline (and the mandatory procrastinating that goes with it). To make this work without a deadline staring at me, I'd have to come up with some sort of attainable goals, even if they are silly on the outset, and do this in baby steps.
In Shawn's book, The Happiness Advantage, he talks about the "20-second rule." Our brains desire the shortest way possible, and any hurdle--even one that would take a mere 20 seconds to clear!--can stymie the pursuit of a goal. So this week, I'm going to go through to find some of the 20-second barriers (shamefully, some are even less than that) that are keeping me from becoming a creature of less stress--and hopefully healthier and happier in the process. I’ve decided that, using some of Shawn's principles in his book, I was going to make things as easy as possible for myself and remove some of the barriers I'd created--most of them mental.
My first hurdle: making my morning routine less stressful. I don't want to get up any earlier (6 a.m. is already blasphemy in my sleeping-late primer), so how can I find ways to make it less stressful for me to get ready in the morning so that I don't leave the house ready to tear a fellow commuter's head off?
Why do I put away my lunchbag every day, even though I'll need it again in the morning? Because a magazine shows a clutter-free kitchen counter? Now the bag is out and as packed as possible so I don't scurry in the morning for my lunch things. Stress saved.
Why don't I take a few minutes each night to put out one, or even two, possible outfits so that I'm not standing in front of my packed closet lamenting my lack of choices (or overwhelmed by them)? Stress saved.
Why does the laundry have to be done a certain way at a certain time? Can't it wait until I have more energy, or why can't I train my perfectly able husband to do it (OK, well, at least the stuff that I don't fear shrinking myself)? Stress saved--and I didn’t fold a single towel this week.
I won’t bore you with the details--and it’s not like I woke up one morning as chipper and stress-free and discovered the secret to living with less stress. If I did, I would write a best-selling book. But perhaps all of these experts are on to something. And maybe I just have to learn to give myself a break once in a while and realize that MS or no, I’m only one person with limited resources and energy no matter how good the day. I should be trying to make the best of every one of them.
Gratitude – August 2012
I am not defined by my MS. I am not defined by my work or my job. I am not defined by any type of bad day or week I might be having. Whatever life throws at me just makes me stronger. Challenges are to be met with eagerness and with the expectation that overcoming them will lead to personal growth and lessons for the future.
In spite of the ways I am feeling today, I’m doing my three gratitudes:
Today I am grateful for the sun that is shining (even if it is making the temperatures rise and bothering my MS symptoms), for a home that is comfortable, and for my family who reminds me of how lucky I am.
Exercise and MS – September 2012
When I was little, I once asked my mom if someone could sleep a lot one night and then not need sleep for a few nights after that because they'd already gotten a lot of sleep. She explained that, no, you can't stockpile sleep and that you can only make it up when you get overtired.
As a child, I often wiggled the most delays possible around bedtime--I needed a drink, then the bathroom, then a different PJ because I was too hot--before the lights went out. Even then, I would read my chapter books by the dim light of my small nightlight, straining my eyes in the near dark just to finish the next adventure of my favorite characters. True freedom came one Christmas when I received a purple flashlight, and along with it, a new way to read my burgeoning collection of books: under the covers.
Of course, I never wanted to get up the next morning. But I also place part of that blame on family genetics too. My maternal grandmother never woke up early, and I proudly carry on that tradition.
Now that I have MS to deal with, I treat every morning that I get to sleep in as a gift to myself. Eight straight hours of sleep is something that I never thought I'd find myself wishing for--well, that and my own laundry machines (no more coins!).
Yes, in college, there were certainly days, if not weeks, where I'd be wishing for 8 to 9 hours of uninterrupted sleep, awaking to no homework or duties at the school newspaper. But this new want of sleep--the should-be-patented MS brand--is constant. And sometimes, I find myself exhausted right after I get up, having only a few minutes of feeling rested before the fatigue settles in again, and I start counting down the hours until I can get between the sheets once again.
It does have its upside: I can fall asleep practically anywhere. Give me 15 minutes on the commuter train, and I'm fast asleep, letting my book go unread, or much to my husband’s dismay, on the couch, during a particularly long movie.
But I don’t want to sleep my life away. One of the things I find most ironic is that everything I’ve read and heard says that it’s good for those with MS to engage in exercise because it’ll give you the feeling of more energy. But where do you get the energy to start? It feels like a catch-22. To exercise, I need energy, but to get the energy, I need to exercise.
Also on the to-do list: tamping down the perfectionist tendencies. I’ve lost count how many times I’ve started on an exercise program only to give up because I missed a session and then threw in the proverbial towel--even when I know it makes me feel better.
So in addition to making sure I’m getting the rest I need (within limits), plus removing my stress-inducing tendencies (pardon me while I make tomorrow’s lunch), what are some other good mechanisms for making things easier on yourself, especially when your “Type-A, I can do everything” personality has always put higher demands on you?
No goal is too small – October 2012
When I look back on how far I’ve come since I started on this journey, I’m trying to realize how proud I should be, despite my mind’s insistence on pointing out the disparity between my idealized standards for how far I thought I should be versus how far I’ve actually come. I changed some things in my life, and I’m making them stick.
My wellness goal was to learn how to eat better, make more time for myself, and to get more active, despite the MS-induced fatigue and pain. When I first returned from Denver, Shawn’s book in hand, I was like, “This should be easy. Just break things down to manageable chunks, advance to harder challenges over time, and soon, you’ll be doing everything in no time!”
Um, not quite. I forgot things like: our brains like our habits just the way they are, thank you, and trying to change a habit is harder than changing a tire with rusty lugnuts. I also forgot that I’ve developed certain habits to make my life more manageable in innumerable ways. And clearly, my first impression of “manageable chunk” and what is actually a small, manageable goal differs greatly when we’re talking about changing habits. Think you can change one thing about yourself that you’ve been doing for more than a decade, keep track of it, and do it successfully for three weeks? OK, now add about 10 more “small” things to change, plus do all of the tasks you normally do in day-to-day life. I got overwhelmed pretty quickly.
Initially, I thought that certain actions were too small, too insignificant, wouldn’t make a difference. But, you know, they’re not, and by accepting that I needed the extra help in adapting to change, the rest came more easily.
The best example is when I resolved to do some exercise most days of the week. In the past, I’d been my own worst enemy, making it an everyday-or-the-highway situation, allowing no room for error or for real life. In the past, I had a specific outfit and shoes and time of day and TV show I’d want to watch when I exercised. If all of these planets didn’t align, then I didn’t bother exercising. But now that I’ve broken down exercise into a more manageable chunk (just need the stationary bike and a decent pair of shoes), I jump on whenever I can—and only hold myself to 10 minutes. That way, when I make it to 10 minutes, my brain scores a victory, even though I usually keep pedaling well past it. Guess what? I’ve actually done more exercise in these past few weeks than I have in the previous six months.
What this experience is teaching me is what it means to make real, lasting change. It takes the smallest actions to start making the biggest changes. It also takes consistency and believing that I can do those things—and enlisting those closest to me to keep me on track. Perhaps more than getting regular exercise, this was the best lesson to be learned of them all.
Striving for imperfection – October 2012
I’m such the older sibling. I’m Type A to a fault. Everything must be done perfectly, or else it’s not worth doing. Even if I can’t control something, I’ll worry about it anyway because (clearly) that will have an effect on the outcome.
My younger brother, on the other hand, doesn’t seem to have a care in the world. Everything just falls into place for him. He doesn’t worry about a lot, and he lives a pretty happy life because of it. He focuses on what’s important and doesn’t pay much attention to the rest. I want to be more like him.
This journey is teaching me that my quixotic quest for perfection is more foolhardy than ever—and it’s affecting my health, my relationships, and my life in more ways than I can count.
In pursuing my wellness goals, I’ve had some success—and a lot of “not success.” More than anything, I learned how get back on track when I start veering off. My past failures on the getting healthy route all have a similar theme: I psyche myself up for a goal, stick with it for a maximum of two weeks (or in what has to be a record for fastest time of giving up: 1 hour), fall off track because real life interfered, and then didn’t bother getting back on track because in my head, I knew that my efforts hadn’t been “perfect,” and really, what’s the point if I knew I’d failed so soon.
This time around, I’ve been striving for imperfection. Last week was a killer for me. I was overbooked, and so I didn’t exercise as much as I should and made some less-than-stellar food choices. I didn’t block out any time for exercise, and I felt the difference when I got back on the exercise bike this week.
But that’s what’s different with me now. I got back on track. I got back on the exercise bike (for my self-imposed mandatory 10 minutes…which then turned into 25, 30, 45) this week. I started to plan my meals again so I wouldn’t fall victim to the cookies calling my name during a slump in energy. I approached each decision as a chance to make a difference rather than tallying up my victories and my perceived failures and seeing which column had the higher total before deciding whether to proceed. In other words, I didn’t hold myself to some “perfect” standard that, as a human, I had no chance of ever meeting.
Perhaps the biggest lesson in all of this is I’m starting to realize that I don’t have to be perfect to still make progress. Now I feel stronger than ever because I refocused and resolved my will to meet my wellness goals. It’s the choices I make every day that matter. It’s that ability to right myself when I start veering down the wrong paths that mean more than living “perfectly.” I think my brother would agree.
Putting the focus back where it belongs – November 2012
When I list my priorities, I don’t usually even rank on the list. The first few spots on my list are taken up by family, friends, church, and work. When I do make the list, it’s usually somewhere near the bottom.
One thing I’ve been learning through the Everyday Matters program is how to put myself back into the equation—or really, how to put myself on the map at all. For the first time, I’m considering what’s the best for me. When I’m wavering in a decision—do I take the time to do something that will help me?—one line I’ve found myself repeating is, “If I don’t take care of myself by doing this now, how much will it take to fix the damage later?” It can be anything—from taking the time to pack a lunch so I don’t spend the money or the calories on takeout to making a shortcut to help myself later.
This summer, my husband had a health emergency. A few months prior, it had been me with the medical issue. Throughout, we joked that the other one had to get better so that the “focus go back where it belonged”—on the spouse not in the hospital. This was said totally tongue-in-cheek and was done to hide true feelings of being scared and fearful.
But I’m adopting that tongue-in-cheek saying and making it my own. I’m putting the focus on where it should be. Not that I’ll be focusing solely on myself and no one else. I’m actually just taking the time to evaluate how I’m feeling, what’s the best course of action for me, and truly, if I don’t take care of myself now with this action, be it taking a walk or making a meal instead of getting takeout, how much work will it be to make it right again?
The end, or the beginning of everything – November 2012
I can’t believe this is my last entry for the Everyday Matters program. When I think back to that warm (too warm) day in June when I found out I’d be a participant, I had no idea where this program would take me. I’ve come so far, but I know I have much more to go—in fact, it’s going to be a lifelong journey.
I attended the National MS Society’s national conference in Dallas, TX, November 7-9, and got the chance to see Jim, Sallie, Connie, and Brenda. It was evident we’ve all changed since July. We presented our journeys to attendees, and it was hard to not cry when we heard about the struggles and breakthroughs everyone had had.
What am I doing now? Since July, I’ve gotten a new job with a better commute so I’m not so tired. I also removed myself from an environment that was increasingly dysfunctional—and was having a negative impact on my mental and physical health. The evidence it was a move for the better was a week after starting at my new job, my father remarked to me that I seemed very relaxed. And I was. It was like a huge weight had been lifted off. I have free time again—and I don’t have to elbow anyone for a train seat.
I’m also continuing on the fitness / health journey. It’s a long one, full of metaphorical potholes and pitfalls and setbacks. But I’m chugging along, trying to figure out the ways I tick the best.
I’m also using the arsenal of tools I collected from Shawn’s book. This morning, I awoke cranky (not unusual) and feeling disengaged and discouraged (which was unusual). So while getting ready, I supersized my three gratitudes by naming as many as I could in the time it took to wash my hair. Do you know that I felt immensely better? Little instances like this that make me realize how powerful these happiness tools are. It’s not that using these strategies implies I live a fairytale life free of cares and worries. It means I can pull myself out of ruts, that I can reconnect with myself and others in meaningful ways, that I can rebuild during difficult times, and that I can still feel empowered even when negative voices tell me I have no power. I’m even finding them helpful as I deal with the symptoms of depression.
In this half a year, I’ve met some amazing people who have shown me what perseverance and determination can accomplish. I’ve also realized how much work I have to do in my own life to live the way I want to. I was pretty low in July and could barely see the light shining down the shaft of the hole I felt I’d fallen into. Now I feel like I’ve climbed out of the hole, brushed myself off, and am ready to tackle those problematic mountains that have existed for years. I’m not saying that you read Shawn’s book and instantly you’re happy. I’m also not saying that it doesn’t take hard work, lots of tears and struggle, and support from those closest to you. What I am saying is that these strategies can make a difference. Start small—smaller than you think is necessary. Go slow. Reward yourself for the small victories. Don’t punish yourself for the setbacks. Reassess where you are over time. You will see a difference. Even the smallest differences can lead to the biggest changes.