Getting Organized and Staying Organized: It’s a Lifesaver When Living with a Chronic Illness

By Stacie Prada

I love being organized. I love containers and labels. I love having my finances organized and being able to find paperwork when needed. It brings me a sense of peace to plan things, be prepared and know what to expect. When everything has a place and is put away, it brings me joy. Living with a chronic illness like multiple sclerosis can be the exact opposite of that. It’s unpredictable, it disrupts plans, it can be invisible, and often it doesn’t have a logical reason behind the symptoms it brings. It can be manageable, but it’s not curable. Unlike my belongings, it can’t be fixed and controlled.

I know not everyone shares the love of organization that I have, but I promise you that small efforts into organizing tasks, time and belongings can make any person’s life less stressful. When keys are put in the same spot each time I get home, I don’t spend any time looking for them when I’m rushing out the door. When household goods like toilet paper are purchased before I’m down to the last roll, I don’t need to make a special trip to the store when I might be tired from a long day or experiencing MS fatigue. When I fill up the car’s gas tank when it’s half full, I won’t be late for an appointment because I needed to refuel on the way. If I bring snacks and water when I leave home, I’ll spend less money stopping somewhere to get them and I can control what I eat or drink. I have the option to get something different, but I won’t be forced to have something I don’t want. It takes less energy to stay organized than it does to deal with the chaos disorganization can cause, and putting effort into organization helps me live with MS fatigue with a semblance of grace.

My days rarely go as planned. There’s always something that comes up, and if I allow time for emergencies or unexpected opportunities, I’m less likely to get stressed about it. When my finances and home life are organized, I’m better able to roll with inconveniences instead of them disrupting my entire schedule. With MS, having an exacerbation can put everything on hold. Needing to schedule doctor appointments, get daily steroid infusions to calm down the immune system, travel to clinic appointments, and focusing on recovery becomes a priority. Everything else gets pushed aside. If I’m not organized, it can be costly and chaotic. Bills paid late can incur interest and late payment fees. Missed deadlines can create consequences that increase stress even more. Stress can contribute to MS exacerbations and symptoms, and it can become a downward spiral for our health.

But it’s hard to get organized in the first place.

I’ve had my share of shame surrounding disorganized papers and things in my life.  When I inherited decades of paperwork from my mother after her death, I kept a lot of it in the attic. When money was short, it was hard to stay on top of financial paperwork. As time passed and I lacked a good organization method for new papers coming into my home, the boxes of paperwork stored in the attic grew. These boxes held unimportant paper along with important documents and possible treasured keepsakes. The idea of going through all of them was overwhelming and easy to ignore if I didn’t venture up the drop-down ladder to the attic.

Along the way, I bought a book that guided me through tasks to complete to become financially organized. It had assignments to do each week and promised complete financial organization within a year. I followed it diligently, and the papers in my home along with my financial tracking became something of beauty to me. The boxes in the attic remained untouched.

Then I moved, and something needed to be done. My new home was one-fifth the square footage of my old place. I was embarrassed that I didn’t know what was in the boxes, nor could I recycle or trash them without going through them. Luckily, I had two friends who never judge me poorly and are extremely generous. They offered to help, and I’m so grateful that I overcame my embarrassment and accepted it.

I think there were about 30 boxes that we took directly to a friend’s garage. The following Friday night, we met for dinner and afterward each brought a martini to my friend’s garage where we spent five hours going through boxes. My instructions were to sort through things into recycling, donation, trash and keepsakes. We would identify anything that might look important and hold it up so I could say whether I wanted to keep it or not. As stressful and overwhelming as the project seemed to me to do alone, it ended up being a really productive and fun evening. We laughed over old photos, drawings and notes, and we told stories about ourselves. By the end of the evening, we’d whittled the number of boxes for me to keep down to five that could fit into my new place and be dealt with another time. That weekend, we took the paperwork to shred to a local free shred event, and we dropped off items for donation at a local charity. Trash was picked up with the garbage within a week.  What would have taken me months to go through and caused a lot of stress became an opportunity to connect with friends and make a fun memory.

For tasks that need to be done regularly, I prefer to do them throughout the week. Growing up, my family’s method for cleaning the house was to do an all hands-on deck cleaning session once a week. Sure, we cleaned up the kitchen each night and tidied up after ourselves, but a full-home clean would take a few hours each Saturday morning. I hated it. It felt like punishment, and it had to be done before we could do anything fun. I learned years later of a method where cleaning could take 15 minutes per day, and I joyfully converted my approach. Now I use that method for a lot of things I need to do. I don’t combine everything into one session; I split up chores into small fairly quick tasks. Some are maintenance done daily or weekly, and others are done monthly, seasonally or yearly. I wish I had a cleaning person, but for now I don’t feel comfortable with the expense. With this approach, I’m able to keep my place tidy and company ready within a few minutes. This works well with my MS fatigue issues, since accomplishing something in 15 minutes and resting is doable. Saving it to do all at once can be exhausting, it might limit my ability to do anything else that day, and it might require recovery time beyond the one day.

How to Get Organized

There are lots of good reasons to be organized, but that doesn’t always lead to action. I like the specifics of what I can do to make my life easier.

  1. Enlist help. This is especially useful for big projects that only need to be done once.
  2. Break up tasks into small and consistent routines. Success builds on success.
  3. Do one thing at a time. Don’t worry about everything, just focus on one thing to improve. Getting overwhelmed will just lead to inaction and no improvement at all. Any improvement is better than none.
  4. Cleaning in five to 15-minute spurts rather than long sessions can accomplish a lot while accommodating fatigue issues.
  5. Pick the one thing that causes the most stress and focus on how it could be streamlined. The library and internet offer a wealth of suggestions and resources. Find one that makes sense and try it. Keep it if it works, and try something else if it doesn’t.
  6. Consider organization as a lifelong component of living well. It might take five years to get each aspect of a life more organized. As life, health and obligations change, so will our organization methods.

Having control over things in life builds confidence and eases stress. Chronic illnesses like MS can be unpredictable and suddenly disrupt our plans significantly. Being organized with belongings and doing tasks as part of a routine ease stress.  Knowing what needs to be done and where to find things makes it easy for friends and family to help us when called upon. Tasks become more difficult when we don’t feel well, and being organized can allow us focus on our health and recovery. If things are organized and planned, then impromptu things don’t worry me. I can add them without overloading myself. I know for certain that being organized enriches my life and allows me to say yes to more experiences.

*Stacie Prada was diagnosed with RRMS in 2008 at the age of 38.  Her blog, “Keep Doing What You’re Doing” is a compilation of inspiration, exploration, and practical tips for living with Multiple Sclerosis while living a full, productive, and healthy life with a positive perspective. It includes musings on things that help her adapt, cope and rejoice in this adventure on earth. Please visit her at http://stacieprada.blogspot.com/ 

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About MSAA

The Multiple Sclerosis Association of America (MSAA) is a national nonprofit organization and leading resource for the entire MS community, improving lives today through vital services and support. MSAA provides free programs and services, such as: a Helpline with trained specialists; award-winning publications, including, The Motivator; MSAA’s nationally recognized website, featuring educational videos, webinars, and research updates; a mobile phone app, My MS Manager™; safety and mobility equipment products; cooling accessories for heat-sensitive individuals; MRI funding; My MSAA Community, a peer-to-peer online support forum; MS Conversations blog; a clinical trial search tool; podcasts; and more. For additional information, please visit www.mymsaa.org or call (800) 532-7667.

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