Something that amuses me.

Over and over again, I’ve read about how exercise can positively impact the intensity of MS fatigue.

Nearly every disease has information that says that those who exercise fair better physically than those who do not exercise. Something about this feels like a cosmic joke to me. Of course those who exercise fair better physically – THEY CAN ALREADY WORK OUT! So – what about those of us who aren’t already working out? How can we make that leap?

You know that heavy protective lead vest that they put on you when you’re getting x-rays at the dentist’s office? For me, at least, MS fatigue feels like wearing a vest like that all over your body. It makes moving take a ton of willpower and energy.

Telling me that running 20 minutes a day on the elliptical machine will make me feel better when walking to the bathroom is a feat is like telling someone with food poisoning that they’ll feel better after they eat something to settle their stomach. It might make sense and even be EXACTLY right — but on some deeper, human level, it sounds like the most ridiculous, difficult thing you could possibly do to yourself.

So, when I hear learned, highly-respected doctors saying that they don’t understand why so many of us with MS gain weight and decrease exercise, it makes me cock my head and think, “Really?”

I think one of the biggest barriers to happiness and positive increase in health for those of us with chronic illness is constantly being bombarded with thoughts of what we CAN’T or shouldn’t do, and not thoughts of what we CAN do.

Granted, it’s the squeaky wheel that gets the grease, and our bodies are squeaking loudly, begging for rest that unfortunately never feels restful. It’s hard to think about what you can do when you can’t stop thinking about what you want to do and are unable to do.

So, how do you get around that? It seems like for many of us, we play the “wait to get better” game. We think to ourselves, “Ok, I feel like crap today, but tomorrow, when I wake up and feel better, I’ll definitely go to the gym.” It seems reasonable. Today we’re letting ourselves rest, and tomorrow, we’ll do what we know we need to do to feel better.

Instead, tomorrow comes, and we feel the same or we feel a little better or a little worse — but no matter what, we know that we have to take things moment to moment. So if we feel better, we work out – and then are *done* for the rest of the day. Heck, we’re out of spoons! If we feel worse, we “take off” another day, and if we feel the same, we hem and haw over whether or not to work out because we’re afraid of making ourselves feel worse today or tomorrow by using all our spoons.

We’re so filled with sadness and anxiety over what to do that our fatigue just makes it that much harder to make decisions. We forget that *very* little things matter and can make a *huge* impact.

For me, my dog makes all the difference. Every day, I try to walk past one more house before I come home. Some days, I can only make it 5 or 6 houses. Other days, I can take the whole block. Some days, like today, I can’t take him out at all and have to get Adam to do it.

For those who can’t walk or who are couch or bed-ridden, there are still ways to get exercise. Even better, you can exercise only during the commercials, and still get the benefits of exercise.

The objective of these exercises is to stop muscle atrophy, tone, and strengthen. It is *not* to raise your body temperature (which can be a huge problem for those of us with MS), and it is *not* to get your heart rate up. It’s to remind you what your body can do and make you feel more capable on any given day.

The easiest exercise that I’ve found is to sit on a stability ball

when watching TV or being on the computer. Assuming that you have good posture, this will strengthen your back, abs, and help with stability.

The other day, I was looking at the Listerine website trying to find coupons when I noticed that they had 12 routines by Denise Austin that show you how to work out while watching TV. You may need to register, but it’s free and I’m sure we all have our spam accounts.

I also really like Pilates. There are tons of Pilates exercises that you can do in bed – things as simple as leg lifts.

Other things that you can do:

Sure, it kind of stinks to have your workout labeled as for “seniors” or “the elderly,” but we take as many pills and get the same looks from people, so why not take advantage of something made for people like us? Who knows – maybe one of these days me and some friends will make a video for people like us – in our mid-20’s and disabled.

Until then, I’m going to take baby steps towards lessening my fatigue and feeling good about myself. I hope you do too. 🙂

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The Spoon Theory

Recently, a friend of mine sent me an email with this story. It resonated so strongly for me that I felt compelled to share it with you all. It makes a very good point – especially with the fact that you can’t know, from day to day, how much you can or can’t accomplish.

THE SPOON THEORY
by Christine Miserandino
http://www.butyoudontlooksick.com

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.

As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.

As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.

At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.

I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.

She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?

I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting.

She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.”

I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about.

You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.

I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”.

I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.

We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.

When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.

I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared”

Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.

After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”

Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too.

I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
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For more on The Spoon Theory, spoon merchandise, and other pearls of wisdom, visit But You Don’t Look Sick.

So… what’s this all about anyway?

Initially, when I came up with the concept for In It For The Parking, I was thinking I would document and discuss what life is like with MS… but then I realized that MS is different for everyone. Once I had a seizure disorder, I figured, “Hey! I’ll do a site for people with seizure disorder! Or with MS AND Seizure Disorder!” but that would mean that this site would exist for maybe 20 people in the whole world.

So, I looked at my life, my friends, and what would make the biggest difference to my (at that time theoretical) readers. I realized that I didn’t know anyone who hasn’t at one time or another come into contact with chronic illness. Whether it’s cancer, leukemia, muscular dystrophy, autism, fibromyalgia, or any of the hundreds of other conditions that require sustained lifestyle changes, caregiving by family and friends, and a positive outlook.

“In It For The Parking” summarizes my attitude towards my disabilities. I always joke and say that I’m just in it for the parking – or in it for the perks (like riding the carts at the airport!).

Remembering that I am not defined by my illnesses and recognizing the benefits (whether hidden blessings or not) of my situation are two of the ways I cope with the changes in my life and the frustrations of being chronically ill.

This blog is all about living well, finding your happiness, maintaining positive relationships, and caring for ourselves and our caregivers.

Every day, we can find ways to bring joy to ourselves and others. This way works for me. 🙂

It’s all about attitude.

I was diagnosed with MS during my 4th semester of law school. For those of you who are unfamiliar with the way law school works here in America, it’s a 3 year (or 6 semester) program to attain a Juris Doctorate. The old adage goes like this, “First year, they scare you to death. Second year, they work you to death. Third year, they bore you to death.” This is only mostly true, since you’ve got more electives your third year.

In any event, when I had my first serious MS exacerbation, it was March 20th of 2007. At that time, I was working on a 30 page seminar paper, a 17 page contract, and was fighting to keep my scholarship. The entire account of my event that day was 3 lines long, with the title being “Today’s fun and frolic: 5 hours in Urgent Care.

The thing that was really telling to me was looking back at the entries thereafter which talk about the papers I was working on, the number of hours of reading, managing a fledgling relationship, and going to karaoke. I had pins and needles or couldn’t feel most of the left side of my body when you touched it, but that was no excuse in my mind for not getting my papers done, not reading for class, or not going out with my friends.

When I didn’t know it was MS, I didn’t let it stop me from doing ANYTHING that I wanted to do or felt like I needed to do — and when I *did* find out what it was, over 2 months later, my wonderful boyfriend Adam reminded me of the most important thing ANYONE has ever told me regarding MS.
He held my face in his hands and said,

“You are the same person now that you were this morning. We just have a name for what’s going on with you now, and we can start treating it so you can feel better. This doesn’t change who you are or how much I love you.”

That moment made all the difference in my life. I started treatments for MS while continuing an externship in the business affairs department of a major record label. I continued through law school. I had this thing we liked to call “the nods” that started in October of that year. Nowadays, I know that I was having simple partial seizures. My face and hands would lock up, or I’d have an atonic seizure where I’d just kind of “plop” for lack of a better way to put it. My head would nod despite myself… hence they were “the nods” and were just part of MS fatigue in my mind… still not a reason to stop doing things, especially things as important as exams! So, my last 3 semesters in law school were each punctuated with taking exams while simultaneously having atonic seizures. And oddly enough, my grades were better because of how hard I studied with the brain fog I was having from the MS.

I’ve had so many people tell me how brave I am to keep on living the way I do — how inspiring it is to them to see someone with so many reasons to fail still “pressing on” and having a good life. I’ve always found this a little more than slightly amusing, mostly because it almost never feels like a choice to me. The funny thing is that I can objectively see what they’re talking about, but still can’t imagine having lived my life in any other way.

It wasn’t until I was in the hospital this past July that I was forced to acknowledge the extent of my current disability. Honestly, I hate that word — but it’s accurate! It forces me to face that I have limits, but it doesn’t tell me what those limits are.

I believe it was Eleanor Roosevelt who said that no one can make you feel inferior without your consent. The same is applicable to diseases. Just because I can’t drive doesn’t mean that I can’t go places. Just because there are days that I can’t walk doesn’t mean I can’t or shouldn’t exercise at all. Just because I have fatigue doesn’t mean that I’m lazy or worse, that I should ALWAYS give in to it.

I can say without hesitation that over the last 3 months I have needed to go easy on myself. I haven’t been exercising. I haven’t been going out much, and I haven’t studied or looked for a job… but I have also been having tons of seizures while they get the medicine levels figured out. During that time, I’ve gotten to read a lot of other journals, join several support groups, and to get back to myself.

I find that I’m happiest when I focus on life and MS is just a part of it. It’s when I let myself feel like a victim of MS that I am absolutely miserable. I’ve seen so many others fall into that way of thinking perpetually – like they’re never going to get better, or worse, they should change their lives to being shut-ins because they are ashamed or feel like a burden to others.

If there’s any message I can give to the world, it would be for everyone (especially those of us suffering with chronic disease) to know that a good attitude is the most important thing you can have. If you don’t have it in you to change your attitude on your own, then go get therapy. It can make all the difference in the world. It certainly has for me.

These past 18 months have seemed like years of growth all pushed into the tiniest time frame it could possibly squeezed into. MS has done me so much good that I often think of it as a blessing in disguise… because really, more than half of happiness is in your attitude, and that’s something you can choose to change any moment of any day.

You have it in you to make today great. Get to it. 🙂

A New Take On An Old Favorite

If you had told me when I was 11 years old, writing my first public forum entry on my parents’ 386 that someday people would keep online journals where the world could see them, I would never have believed you. I would have laughed and said, “That’s so stupid! EVERYONE CAN READ IT!”

How do I know this for sure? It’s not just an active imagination. I know because my 11 year old self said so just a few weeks ago.

You see, I have Multiple Sclerosis which has caused a seizure disorder.

Recently, I spent 12 days in the hospital while doctors monitored me, put me on all kinds of meds, and ran more tests than I could count. To be fair, I was totally blitzed out of my mind on medication and having very large seizures every few minutes, so I think I could probably count to 12, solely thanks to the Sesame Street pinball song.

During this stay in the hospital, several strange things were happening to me. The strangest of them all was akin to time travel. You see, my brain reacts very differently to seizures than most people. I don’t generally lose consciousness or sentience, but when I do, I wake up totally disoriented, thinking I’m a different age, and wondering where the hell I am and why I feel so bad.

Sometimes I’m 8 years old, thinking I’ve upset the teachers at day care. I’m sure I’ve done something wrong because I feel just awful. I *must* be in the process of being punished.

Sometimes I’m 22, newly married, and want to know where my (now ex) husband is, and if he survived the car accident I *surely* have been in. My current boyfriend (who always looks dashing when I see him “for the first time” again) takes particular pleasure in letting me know that my ex is out of my life, and how much better things have gotten for me.

Sometimes I’m 19, think I’m still at Berklee College of Music, still playing drums, songwriting, and singing. When that happens, I usually assume I’m late for an exam. When I find out I’m 27, I get pissed that I “sold out” and yell about how I should have rock band and a CD out by now. (Hey, I’m not getting any more marketable or younger!)

Other times, I’m lucky enough to be between the ages of 11 and 13. During those times, I freak OUT about how awesome laptops are, because I always ask if I can log onto Shadowscape – the BBS I used to frequent all through middle and high school – and every time I am astounded (and sometimes a little scared) by my Blackberry Curve.

Last time I “was” 11, my mother tried to bring me back to the current timeline by talking with me about computers. (I still know facts, and remember feelings about things – so sometimes hearing theme songs to TV shows or talking about things that really excite me can bring me back to the current timeline.) She asked me if I had updated my blog. Of course, in 1992, there really was no such thing.

I looked at her incredulously and said, “Blog? That’s a weird word. What does that mean?”

“Well, sweetie, it’s a short version of ‘Weblog.’ It’s like a diary that you keep on the world wide web.”

Because I was one of the biggest nerds I knew growing up, I knew all about the web, but still preferred the local BBSes to IRC, ICQ, or the *very* young web. (You know – back when Prodigy and CompuServe were still viable competitors to America Online.)

I laughed out loud and said, “Mom, that’s about the dumbest thing I’ve ever heard. Why would ANYONE put their diary on the internet? EVERYONE COULD READ IT! Seriously, you know me better than that.”

It was then that everyone in the room (including my neurologist) started laughing but me. That’s when they told me that I’ve been keeping a blog almost daily for the past 10 years of my life. Of course, it was a little bit of a shock, but when I came back into my 27 year old current mindset about five minutes later, I couldn’t help but think it was hilarious too.

I’ve been out of the hospital for 10 weeks now, recovering while coming up on anti-seizure medications. I can’t drive. I can’t swim. I can’t bike. Hell, I can’t even safely shower alone some days.

But I can read.

And I can blog.

For the last 6 years of my life, I’ve been active on LiveJournal. I’ve made more friends there than I ever could have hoped for or expected. They’ve seen me grow immensely – through graduating college, starting and ending several different businesses, getting married, getting divorced, building a new life, starting law school, being diagnosed with MS, graduating law school, and landing in the hospital during the last crucial weeks of bar exam preparation – so it wasn’t a huge surprise to anyone when I asked them the question that has been weighing very heavily on my mind: What now?

See, I’m the person who makes things happen. I’m always on the go. I’m always organizing events, hanging out with people, learning more, doing more – and now, at least in the immediate foreseeable future, there’s not a lot I can do – at least not much that I could think of.

So I asked my friends – the people I trust more than anyone in the world – and they came back with 3 very solid answers: become a life coach, just rest up for now and still become an attorney, or become a professional blogger.

Being a life coach when I’m trying so hard to figure my own life out didn’t seem to make much sense to me. Sure, I’m a good listener, and have a lot of good coping techniques and organizational techniques, but really – where do I get off thinking I should tell someone how to live, let alone tell them to pay me for it?

Resting up and still becoming an attorney is entirely reasonable. I *did* just go through 3 years of law school, and I *was* planning to start my own firm. The next bar exam is in February – plenty of time to prep without unnecessary stress. Odds are, I will take that test. Regardless of the decision I make with regards to that, I figured it wouldn’t stop me from exploring Option #3.

At first, the idea of trying to be a professional blogger seemed ludicrous. I’ve been doing it for so long that I don’t remember life without blogging… but it was then that I read a post on the Daily Tao community that “The master does nothing, yet leaves nothing undone.”

Writing doesn’t feel like a job to me. I even posted from the hospital as soon as I could. Blogging is just something I do. It’s part of who I am. Could this be my calling? Who knows? Certainly, not me – but if happiness exists when one lives in perfect integrity with themselves, it’s worth giving it a shot.

So here it is: my “professional” blog. Welcome to my life. I hope you enjoy the journey with me.