Getting My Act Together: Staying Organized Despite MS

By: Jeri Burtchell

It’s easy to let fatigue be my catch-all excuse for why things are in disarray around here, but if you’ve known me for more than 16 years I’m not fooling you. Actually, I prefer my mother’s excuse for why I’m not very organized…

“You’re an artist, Jeri, and artists tend to be messy because their minds are busy creating.”

Sometimes, though, it seems my messy ways have only created more headaches and hurdles for myself — something I seem to have less patience for as time goes by.

I’ve decided to try a new tactic, though. It’s called “be kind to yourself.” So now, when I see self-made obstacles to stress-free living, I try to take off my blinders and correct one small thing at a time, making my living space – and my life – more “Jeri-centric”.

Case in point: Every time I need a pen I head for the three side-by-side pen cups on my desk. They are overflowing with pens I’ve collected on trips out of town and harvested from the copper-rich soil of pennies at the bottom of my purse, where together they perpetually weigh down my every move.

In what has become an exasperating ritual, I select a pen, begin to write, only to run out of ink three strokes into my thought. Frustrated, I put the pen back in the cup and select another. I’m often doomed to repeat this process four or five times before chancing upon a pen that can outlast my need for ink.

When my brother recently visited, he noticed this ritual, and asked me why I didn’t just toss the ones that don’t work. Such a simple, logical question and yet it had never occurred to me. Most likely because tossing the pen meant being near the trash can and required additional physical exertion. Yet in the grand scheme of things he was right.

Immediately I took all three cups to the kitchen counter where, one by one I assessed their capabilities by scribbling on a notepad. If it didn’t produce, it faced instant death by trash. In the end I had one pen cup full of pens that write, and had freed up two coffee cups.

I felt so good about that accomplishment, (and the way I am rewarded with ink every time I grab a pen to jot a note), that I’ve decided to see where I can make other small adjustments to be kind to myself. Here are a couple other ideas that I came up with. They might seem like “no-brainers” to a more organized person, but to me they were epiphanies that keep on giving, making me appreciate each day how thoughtful I was to make these small adjustments in my recent past.

● I went through all my spiral notebooks I keep around for work and ripped every page out that had anything written on it. Then I created project file folders, sorted all the notes for each project, and filed them. Now I no longer spend half an hour leafing through notebooks frantically trying to find minutes of a certain conversation.

● I went through a couple of piles of “chronologically filed” papers I’ve been meaning to go through and made three stacks: 1) Important/Save, 2) Needs Action and 3) No Longer Relevant/Trash. Things like the deed to the house and my passport went in the first stack, bills to pay went into stack two, and expired coupons, magazine subscription offers, or grocery lists from a month ago went into stack 3 (a.k.a. the trash can).

It’s amazing how easy it is to stay up on paying the bills now that I know where they are! And when it was time to take my son to get his Learner’s Permit at the DMV, I knew without a doubt where I could find all the necessary proof of ID for both of us.

My new hurdle is maintaining this level of order. But I’ve discovered that if I spend a little time at the end of the day making sure my work area is organized and the papers are filed it’s amazing how easy being kind to yourself can be.

Herding all the pens back into the cup corral at night and leaving myself a to-do list for the next day makes waking up the next morning a whole lot easier. It’s like I’m finally working with myself instead of plotting my own destruction.

So be kind to yourself and spend just a little time organizing a bill-paying station or home workspace with all of the things you might need. Cutting back on clutter-induced stress can have lasting benefits. Now if the bills would just pay themselves I’d be all set!

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

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Tips for Staying Organized

Organization is a personal character trait; to some it comes naturally, to others it is a struggle. One thing is certain; organization is about finding a system that works for you. There is no need to justify something that works to your benefit, regardless of other opinions of that system.

Consistency is one of the more important factors when discussing organization and managing one’s life. They say it takes 21-days or three weeks to make a habit. This may be true for some, but it is stressful to think about counting down 21 days just to find some level of consistency in a routine.

For those who struggle with being organized, or feel that they need more organization to help with day to day activities, the following suggestions or tips may be helpful:

Sort at the Source:
Stay on top of mail and paperwork as it comes through the door. Sort through the junk mail and place it in the trash or recycle bin. Place bills or other important documents in a space that is meaningful for you, and where you will know where to find them when needed.

Put it Away:
It sounds like something you would tell a child, but this simple step can help those who seem to misplace items. You are more than likely to remember where something should be, but is it in its place when you go to look for it? When you are done with an item, put it back in its place. When items get left out of place, they can easily be lost.

Allow Plenty of Time:
When we are rushed, mistakes can happen or things can get lost. Allow yourself plenty of time to complete a task and complete one task at a time. Time management and organization often go hand in hand.

What tips or suggestions do you have regarding organization? Have you found a process that works for you?

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Preparing for Spring

Welcome April! We here at MSAA are looking forward to April and the wonderful blog posts scheduled. When thinking about spring, it is difficult not to think about spring cleaning. It’s a time to (hopefully) put away some of those winter sweaters and fuzzy socks and breakout the shorts and sandals. This period of transition is also a great time to think about organization and cleaning.

Did you know there are several suggested origins for spring cleaning based on religious and cultural practices? One is traced to the Jewish celebration of Passover. Prior to the celebration, the home is cleaned in order to rid the home of any bread that is leavened with yeast. Another suggested origin states that prior to the Chinese New Year, the Chinese sweep their floors and clean their homes to rid it of bad luck and misfortune that may have accumulated during the previous year.

Spring cleaning origins also date back to prehistory, and represents the time when it was easiest to conduct a good cleaning of living spaces. Extra light allowed people additional time to truly see the messy state of their caves, or huts.

In preparation for this month’s topics, we have linked below several blog posts that have been written highlighting organization and cleaning. This topic will continue throughout the month of April, please feel free to leave a comment under the blog with personal tips or suggestions.

Please note: MSAA offices will be closed Friday, April 3rd.

Enjoy these pieces over the holiday weekend:

Get Organized: Tips for starting your new organized lifestyle.

Spring Cleaning: The concept of spring cleaning can represent anything you want it to.

Keeping Track of your MS: “Tips” on how I keep track of my MS.

Resources:
http://home.howstuffworks.com/home-improvement/household-hints-tips/cleaning-organizing/spring-clean-in-spring2.htm

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Keeping Track of Your MS

We all trust and hope that medical providers keep accurate records and maintain documentation in an orderly fashion. But things happen – papers get misplaced, lost, or destroyed and when this happens, the patient suffers.

So what can be done in advance to reduce the chances of this negative effect?

Keeping track of your medical records is the best way to assure that the information about your MS treatment stays organized. However, this can mean different things to different people. Finding a way to organize and keep your medical records in a way that makes sense to you is important.

Some individuals may find sorting records by year helps to track progression or change over time. While others prefer to sort based on testing or specialty, tracking things such as MRI results, bloodwork, or therapy. No one way is better than another. It is about finding a way that makes sense to you and one that will help you along the way.

Take into account the type of materials needed to organize your medical records. Three-ring binders are helpful in securing documents, making sure they stay in place and are not easily lost. Dividers and tabs can be used to distinguish a change in the record, whether it’s a year, type of test, or doctor. Labels written on with dark marker can be placed on the outside of a binder to help identify what is inside.

Depending on the size of your medical record, bring the record with you to an appointment. It can be used as a reference with the doctor, or can be a place to take notes during a visit. After the appointment, ask the office staff to make a copy of any records discussed at the time of the appointment and place them into the organized medical record.

By keeping track of your medical records, you are taking an active role in your health care. In which way do you keep track of your MS? Which system works best for you?

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Inside My Bubble, Prepared for Anything

By: Jeri Burtchell

I like to think of myself as a planner. Now, before those of you who know me collapse into uncontrollable laughter, let me explain. I don’t plan as in “wedding planner” or even use a “day planner.” In truth, I’m a perfect candidate for one of those intervention reality shows.

I never said I plan in a structured, well thought-out manner. No, I’m motivated by more of a panic-driven, deeply troubled, “what-if” thought process I learned from my mother. I have cultivated an emergency response for every possible scenario that could come along in life. I have prepared for catastrophic events that may or may not ever happen.

Mom and I have our fire season evacuation box, our hurricane season supply stash, and when I travel I have a whole suitcase packing ritual designed to make life easier in the event that things go wrong. When connections are missed or there are bathroom emergencies, I know I can count on the contents of my purse or roller bag to rescue me.

I like to think of this as part of my MS Bubble. Since I was diagnosed in 1999 and have come to realize how unpredictable it can be, one small thing that gives me solace is having my MS Bubble.

Jeri blogIt’s a sort of invisible force field I’ve visualized that surrounds me. Inside I have everything I might need to deal with unpredictable events. Things that define my comfort or bring me joy are always close at hand.

Others might say my bubble is nothing more than my “comfort zone,” and in the classic sense, I guess it is. When I’m working, it’s right here at my desk. In my bubble/comfort zone, I keep the necessities of life. I have everything from a box of tissues to device charging cables.

While others look at my workstation and see a chaotic mess, I see a symphony of bubble-friendly instruments, each playing a part in bringing me comfort. I choose to forgo the aesthetic appeal of minimalism. I’d rather have clutter, as long as it’s purposeful clutter. Who can say I won’t need that thermometer mere inches from my keyboard?

My sweater stays on the back of my chair, always at hand in case I get chilled. Slippers are close by.

My smartphone is the most indispensable tool in my bubble. It connects me socially, delivers my mail, reminds me to take medications, tells me what the weather is like outside, and will distract me with games if I let it.

The point is, I have made my life as comfortable as I can, given the unpredictability of MS (and of life itself!). Although my bubble does not appear to be in any semblance of order to the untrained eye, it works for me.

I haven’t “planned” my bubble this way as in planning-a la-Martha-Stewart. It is only an ever-evolving collection of habits and things that aid me in everyday life. So I am soothed by the knowledge that, even when my MS symptoms are acting up, my MS bubble is always there, ready to comfort me.

Perhaps it’s eccentric of me to imagine this “bubble,” but visualization is a coping mechanism that works for me. I once got through the claustrophobia of an unmedicated MRI by imagining I was at the beach. My “vacation” was so enjoyable I was almost sad when the MRI ended. The protective “bubble” just works for me.

If you can develop coping strategies – whether or not they involve visualizing your own bubble – whatever works to keep you calm, centered, comfortable, and in a joyful state of mind is all that matters. So think about your situation and what things bother you the most. Then go about “planning” to deal with them ahead of time.

Create your own comfort zone, your own MS Bubble.

And if you’re a friend or family member of someone coping with MS, you might want to consider memorizing these 12 things you should never say to someone with a chronic condition.

But please add one more: Never say, “I took the liberty of cleaning up your desk. Hope you don’t mind – it was a real MESS!”

Why, that would just burst my bubble!

References:
Photo credit: Jeff Kubina, used with permission under the Creative Commons License
http://www.healthline.com/health-news/ms-12-things-not-to-say-022814#1

*Jeri Burtchell was diagnosed with multiple sclerosis in 1999. She has spoken from a patient perspective at conferences around the country, addressing social media and the role it plays in designing clinical trials. Jeri is a MS blogger, patient activist, and freelance writer for the MS News Beat of Healthline.com. She lives in northeast Florida with her youngest son and elderly mother. When not writing or speaking, she enjoys crafting and photography.

 

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Let Us Help You Help Others.

Help Sign Shows Lost In Labyrinth

by Kimberly Goodrich, CFRE, Senior Director of Development

In previous blog posts and articles in our magazine The Motivator, I have addressed the controversy over whether charity ratings are really helpful in giving a true picture of an organization’s effectiveness in meeting their mission.

Earlier this month, I attended a luncheon on this topic with Steve Nardizzi, CEO of Wounded Warrior Project (WWP). Nardizzi gave several examples where ratings from charity watchdogs were not helpful in determining if an organization is meeting its mission. In some cases the ratings were even misleading. One example was the Central Asia Institute, formerly run by Greg Mortenson co-author of Three Cups of Tea. When Mortenson was ordered to pay back over one million dollars in misused funds, his organization had a four star rating. How does this help us decide where our dollars should go?

This makes it harder for the donor. There is no one single number that tells us if an organization is doing a good job or not. We need to dig deeper and ask questions about goals and impact – not ratios. Ask about the people they help. Is that number growing? Are they feeding more people? Saving more forests?

WWP continues to grow despite mediocre ratings. Why? Because its supporters see the incredible impact they are having on the lives of wounded veterans. Eight years ago they had higher ratings, but only 10 million to spend on programs. By making a conscious effort to invest in fundraising, marketing, and staff, they now have lower ratings, but spend 176 million on programs for veterans. By ignoring the ratings and focusing their resources on their mission, more veterans are helped. And really, isn’t that what it’s all about?

At MSAA our mission is to improve the lives of those living with MS. Like WWP, the amount we spent on fundraising went up. Some think this is bad. However, this increased fundraising helped our overall rating to go up. This increase in fundraising led to a significant increase in revenue (16.5% growth last year). This increased revenue in turn allowed us to help more people living with MS. Our toll-free Helpline assisted 6% more people. We provided ongoing MRI assistance to 9% more people, and diagnostic MRI assistance to 70% more people than the year before. Our mobile phone app was downloaded by an additional 7,000 people who now use it to track their symptoms and improve their daily lives. These are increases we are proud of and that make the decision to invest in additional fundraising streams worthwhile.

What numbers would mean the most to you? How do you think we should decide if an organization is meeting its mission and therefore worthy of our donations? We’d like to hear your thoughts. Help us help you to help others.

*About Kimberly

I am the Senior Director of Development at MSAA and have worked in the nonprofit arena for over 15 years. I love reading, running, theatre and the Green Bay Packers. I volunteer with the Disabled American Veterans teaching outdoor sports like skiing and kayaking to injured veterans and find that I receive much more from them than I am able to give.

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Spring Cleaning

To many people springtime symbolizes a fresh start. The change in seasons from winter to spring offers hope and the opportunity to make changes and do some “spring cleaning” for many. When people hear this term, different pictures may come to mind, like cleaning the house, washing windows, or cleaning gutters in preparation for upcoming summer months. However, the concept of spring cleaning can represent anything you want it to. One type of cleaning can be shown in the physical sense – like washing floors, walls and windows. Another form can include straightening out closets or reorganizing drawers and files. Or in another sense, this spring cleaning can be more personal in nature, one in which the ‘cleaning’ occurs on the inside. It may be an opportunity to make changes or adjustments to old routines, to set new goals, or to just make time for yourself, to clear your mind and open yourself up to new possibilities. Spring cleaning doesn’t have to mean giving the house a makeover; it can mean something more personal and private – a cleansing of sorts that may not necessarily be visually captured, but a cleaning that you know has occurred.

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