Day 18: Begin Organizationish

Back when I was fully capable of any and all everyday activity, I loved organizing things. I would organize our pantry every month or so, ensuring that all the cans and boxes of food were facing out, the shelves looked freshly-painted white, even labeling things (clearly I needed a life).

Organization, when you deal with a chronic condition that limits your ability is much more practical. I mean, I'm pretty sure I can figure out where the boxed pasta is, without a label directing me, you know?

So today, we'll start becoming organized in ways that are super helpful for life in our circumstances.

First thing we'll tackle is what I call condition-related organizers. These organizers are not for those without physical difficulties, they wouldn't know what to do with them. They are for those of us who need things like medications, tissues, activities to do, pain journals, etc.

To begin, think about where you spend the most time, and where you do different things. Maybe it's the kitchen, maybe you're like me and there is a couch or recliner where you often are, maybe it's your bed. Wherever the majority of living happens when your condition is at it's worse is where we're working today.

To organize this space, you'll first need to determine everything you'd like to have within hands reach. Here's my list to help you formulate your own (with explanations as needed).

List of Items for Condition-Related Organizer (next to recliner)

• Medications
• Lotion
• Hairspray, spray-bottle, brush (to do hair with)
• Mascara, lip gloss, hand mirror (to get ready) 
• Tissues
• Journal, pens and pencils (to help record life)
• Scissors (Surprisingly always handy)
• A couple grocery sacks (for quick garbage containers)
• Sunblock (so I can put it on the kiddos when they want to play in the back) 
• TV remote
• Water bottle

My laptop also could be added, although it's kept separate from everything else. 

Other ideas could include wet wipes, non-perishable snacks, other medical supplies, etc. 

So, all of this stuff is SUPER handy to have within hands reach. Having it already set-up for me ensures that if I wake up in the morning and start feeling weak, I can get to the couch and not have to worry about whether or not I have what I need. I basically have everything I need to survive several hours (except maybe a toilet...). 

All this stuff is also a total mess just left out on the end table, but it makes life so much more efficient. Today we'll ensure our life is efficient AND organized by finding a simple organizer for our items. Desk organizers work GREAT for this purpose. I found one that's pockets fit my medicine bottles perfectly! You can find basic ones inexpensive, or splurge a bit on a decorative organizer that goes with the space you love (keep in mind, you will be using this frequently!). Just be sure that everything fits easily, with a bit of excess room for that item you are sure to want to add later. 

Depending on your circumstance, you may have two condition-related (or more) spaces. Perhaps there are a million things you use in the bathroom, or when you wake up. Wherever you need a lot of random items to make life work smoothly with as little extra effort as necessary, set-up an organizer and get everything you need, right where you need it. 

It's just another way we can make ourselves more independent, and save our energy for the important things in life :) 

31 Days to a Chronic Clean

Day 12: Enjoy the Lush Feeling of Falling on Clean Surfaces

Yesterday we talked about how to approach more difficult tasks, like vacuuming and mopping (although for each chronic condition, these chores may be more or less difficult).

Today, we're making space for our bodies to be complicated by enjoying that progress.

So, whenever your body hits this day, enjoy the feeling of having cleaned your space. As much as I hate being stuck on the floor during a cataplexy attack, it's so much nicer when the floors are clean. It reminds me of what I can accomplish, even though some days are hard.

So when you need to take a break, look around your chosen space, and rejoice in the daily tasks of cleaning you've been doing each day to help keep this space a space where you can be, without stress, on bad days.

We'll hit it again tomorrow!

See 31 days to a Chronic Clean.

Day 11: Vacuuming, Mopping and other "Normal" Cleaning

Hello all, and welcome to day 11. Today, we're going to talk about something that for non-chronic sufferers is a one-line to-do item.

For those of us unique enough to struggle with chronic conditions, it's a bit more complicated than that.

It's time to discuss normal cleaning chores like vacuuming and moping and other chores, that for you may present challenges.

I used to love vacuuming. Something about the smell of cleaning, mixed with all those pretty straight lines in the carpet, I dunno, it just spoke to me, I guess. Mopping?! Yeah, I was a sucker for shiny, beautiful floors.

On hard days, with my chronic condition, these normal cleaning activities are frequently ignored. Why? Because my walker can still easily navigate floors that don't shine. Floors left untidy are a bit more difficult, so they are a bigger issue for me. Also, these chores require time, often standing/walking. That can be hard to do when I'm weak. It's just not a quick 5 minute job. Finally, the noise of the vacuum can be a trigger for my condition, and we all know that part of respecting chronic conditions is learning how to pro-actively treat them.

What normal chores do you struggle with? They may be these, they may be others.

Today, our focus is on adjusting our life to accept our limitations, and still accomplish these normal chores. I'll walk you through the adjustments I've made, and hope they help you to honor your own situation and still maintain a level of clean.


First, it's important to note what "the issues" are for your situation. I've already talked through this, but here's my listing for both vacuuming, and mopping.


Why Vacuuming is Hard

• Time it takes (about 20 minutes for the main living areas) 
• Physical strain of standing/walking/pushing and pulling
• Additional time spent unrolling cord, plugging in, emptying container, re-rolling cord, etc.

Why Mopping is Hard

• Physical strain of pushing mop hard enough to remove dirt/standing/walking
• Set-up time required
• Time it takes to complete

Writing this list, I realize that pre-condition me wouldn't have thought twice about these issues. Remember though, that's why we're here and not reading the latest cleaning best-seller. What is easy for people with bodies that function predictably day in and day out, isn't as easy for us. 

That is alright! We're smart enough to work around it. 

Once we understand why the tasks we've identified are hard, we can start to find solutions. Keep in mind, calling in help is an acceptable solution, depending on your situation. 

I decided that rather than stress over always having perfectly clean floors, I'd accept that these two tasks wouldn't happen as often. Is the inner clean freak panicking? Remember that being limited is part of our lives and choosing in what way to limit yourself is infinitely more satisfying than allowing your condition to make the rules. 

Now, I do time cleanings to try to align with when people might come over, as well as when my family and I have strength to do them. Rather than set a weekly time that my body is sure to break with, I instead tackle these tasks whenever I have the strength to do them, and record when they were done so I can monitor how often I'm doing them and adjust as needed. 

I've also adjusted the tools I use and how I use them. For example: 

• I replaced the regular sponge mop with a light-weight steam mop (steam mops can simply go over a trouble area multiple times to remove, without needing to use elbow grease). 
• I use a stable, wheeled chair when mopping instead of standing (be wise with this, obviously).
• For my birthday I asked for a robotic vacuum (this model) when it was on sale.
• Vacuum more efficiently (see this great, how-to) 
• Get assistance (I've trained my kids to help with these tasks, and it's seriously paying back big!)

Finally, I try to keep the need for cleaning at a minimum by using wet wash-cloths on sticky spills right away and using house-slippers instead of shoes that may track dirt around. If you can minimize the mess from the start, you're only helping yourself! 

A final note, we don't have pets that add to the problem, but I understand that pets can require much more vacuuming and such (not to mention care overall). Keep this in mind if you are a chronic sufferer looking to get a new pet and try to choose something that again, minimizes the need for additional work, if possible. 

See 31 days to a Chronic Clean. 

Day 10: Evaluate the Space Puzzle, then nap

Say, what?! 10 days in already?

Give yourself a pat on the back, you've been getting yourself to a chronically clean for 10 days already, that's no small feat.

Today, we're going to check in on one of the most important aspects of a chronic clean, our chosen space puzzle.

Remember, we chose a space to empower us to live a full life in the narrow space that is caused by chronic conditions. We honored ourselves by selecting the most important space to focus our limited efforts and energy.

So the first step in evaluating our space puzzle is to first, evaluate our chosen space. 10 days in, how are you feeling about the space you've chosen? Did you choose correctly? Is keeping this space tidy helping you feel more dignified? If so, well done! Let's keep with it! If not, re-evaluate. Here are a few questions that may help.

Where do I spend the most time when I am feeling my worst?
What space would empower me to feel more comfortable with my condition?
Is there a space I can keep tidy that will make me feel more confidant around others or when asking for help?

Your individual condition and limitations are your own, so you may need a more narrow or wide space than I do. That's the reality of the life we live. Honor yourself and your limitations and abilities by choosing a space that works for you!

Next, let's look at our actual puzzle. Here's mine again for reference:

How is your space puzzle working for you? Did you forget an important item? Are you struggling to complete most of your list over a 2-3 day period? If so, you may have overextended yourself a bit. Is each item manageable (less than 5 or 10 minutes)? Break down tasks that need additional break down in order to keep things simple and achievable on bad days.

At this point, if things seem to be working well, you may consider making note of which tasks to start with. This is a very personal decision and can be based on many different factors. For example, you may select the hardest task to do first or the easiest. I recommend considering doing the task with the most impact for you personally first (I'm a sucker for a cleared living room floor, it makes it so I can navigate my walker around easily). Ordering your tasks to get you the most benefit out of what you are able to do in a given way is just another way we are empowering and honoring ourselves and our condition.

Once you've evaluated your space puzzle, check to see how you are feeling. I sometimes get a burst of excitement after such an improvement and may want to start right away on my new space puzzle. If this evaluation has left you sleepy, exhausted, or in pain though, feel free to take a break, a nap, or whatever else you need to take care of your unique body's needs. We'll hit it again tomorrow!

See 31 days to a Chronic Clean.

Day 9: Dishes and Laundry

Here we are again, back to dishes and laundry. Why? Because I believe this habit can make the biggest impact on feeling capable and independent when talking about cleaning.

Habits are powerful, but they take time to develop. The popular saying that it takes "21 days" to make a habit, has been shown to be an underestimate, with researchers now indicating that building a habit depends greatly on the individual, and the new habit. The average time is 66 days, but harder habits could take up to 8 months before they come naturally, without thinking.

Don't get discouraged by this time frame though, since researchers also found that occasional missteps in building habits don't do much to dilute your efforts. This means for us that continually doing dishes and laundry each day will eventually form an easy-to-remember habit even though bad days are bound to happen for chronic sufferers.

The good news is, that dishes and laundry get a little easier each day you successfully complete them, so each day we're moving forward! For today, get each of these tasks done and recognize that you are moving a step closer towards your goals of an achievable, chronic clean.

We'll continue to revisit these two tasks, to ensure that this is one habit that slowly, over-time will become second-nature to even the most chronic sufferer.

Because everyone deserves to have clean clothes and dishes!

See 31 days to a Chronic Clean.

Day 8: Break

When you struggle with a condition that limits your ability to do there are a few important rules to remember:

First, do a little each day to help you feel dignified and productive.
Next, celebrate any and all accomplishments.
Finally, embrace the fact that you are in control of your attitude, not always your ability. Make room for days when you lack the ability you long for by preparing your attitude.

That's what day eight is all about. Day eight is about preparing yourself for bad days, for days when things don't go as planned. By planning breaks into your cleaning schedule, you give yourself permission to handle life as needed.

Taking a break can look different, depending on your needs. Let's look at some examples.

Today, I'm currently feeling quiet weak. I'm not able to do a load of dishes, or get laundry in at the moment. Mentally however, I'm feeling just fine. I don't feel emotionally burned out, which is great for me as well. Today, taking a break may mean forgoing doing the cleaning items I normally do to re-evaluate my approach. I'm thinking I'll look at maybe changing up when I do dishes and only worry about getting a load of laundry in in the morning, since I've had a few rough mornings lately. Then maybe I'll take time to read a digital book or my favorite fun blog.

Perhaps you may be having a day where everything just seems to be falling in, maybe physically you are struggling more than usual and that is making it hard to handle the emotional and mental stress. Maybe today, re-evaluating just sounds too hard and depressing. Maybe today's break needs to include some healthy pampering with your favorite movie or snack, or calling in a friend or family member to chat or to take you out for a bit. If so, take the break you need!!

Here are a few tips in taking breaks that will set you up for future success:

1. Give yourself permission, maybe even aloud if need be.
2. Take breaks that build you up. (Binge eating a chocolate cake may taste good in the moment, but may leave you with feelings of self-disgust or other unhealthy feelings. Let yourself indulge a bit in a healthy, moderate way. Maybe order in from a favorite sandwich shop if it's in your budget, or ask a friend to pick you up a favorite beverage to sip on.)
3. Use breaks as building opportunities. I love to spend time reading inspirational quotes and committing my favorite to memory. You may have your own loves that help you feel like you can do what needs to be done, maybe you are an ultra-planner and you can spend time planning a fun outing with a friend or family member. Using down-time to build yourself up often shortens down-time!
4. Take breaks as needed, but keep trying to get back to "real-life". Don't live in a limbo of "I'm taking breaks". Take a break, an hour, a day, and then get back to trying again.

So whether the break comes today, or tomorrow, take it when you need it and then move forward with the momentum you create when you love yourself enough to take care of the real you!

See 31 days to a Chronic Clean. 

Day 7: List The Little's and Tackle One

I wish I could let you into my life so you could see the difference between the capable me and the couch-dweller me. Thanks to medications and good circumstances, there are some days I am very capable (though not lately I'm afraid) during these times I do amazing things like cleaning the doors and walls (walls people, walls!), sanitizing the bathroom, wiping down all the drawer fronts in the kitchen, and other amazing things.

"Normal" people may not find these tasks too super-human, they may consider deep-cleaning an essential if not pleasant part of daily life.

For the chronic-whatever who considers going to the bathroom unassisted (other than perhaps a walker) a successful task completed, deep cleaning is deeply buried at the bottom of a long list of "May never do's". That's the reality of life for people who struggle with basic tasks. It's not a fun reality, but it is a reality that can never be truly addressed by cleaning gurus of our day who've probably never struggled to put pants on themselves a single day in their life. So, enter the little's list.

Deep cleaning when you don't move is going to be non-existent, except when help comes in. Embrace that. Embrace the space you've chosen. Embrace the choices you make to be proactive about your inactive condition. You are still beautiful, worthwhile, and needed. You can still make a difference, a little bit at a time.

So today, if you've got the dishes and laundry going we'll look into listing the little items that are on your mind and work on getting just one done.

First, some guidelines for your list. First, start and focus most on items that are in the space you've chosen. You chose this space for a reason, so honor it by giving it priority. Second, pick the most stressful item (not to do, but just the item that bugs you most) to do first, as this will have the most benefit to your perception of your home. Finally, no item should take longer than 5 minutes, so break them down as needed.

Here is my list based on my priorities:

• wipe down front door
• wipe down bathroom door
• quick-dust shelves and piano top
• tidy  linen closet floor

A few comments on this list. My first priorities were wiping down doors. This is due entirely to the mass of sticky fingerprints that has literally made the doors look dirty from doorknob down to floor. If you don't have a small child around, these items don't make as much sense. 

Notice how short my list is. I like to keep it to 5 items or less to keep it more manageable and to give myself a needed mental boost when the list is "DONE". More items would make it likely impossible to finish a list in a day, let alone a week. Keep your spirits up by keeping things realistic for your situation. 

Once you get this list done, take a deep breath and do the first item. Now check that sucker off! You, my chronically whatever friend have just done a bit of deep cleaning!!! Mind blown. 

See 31 Days to a Chronic Clean.