identifying-chronic-illness-roadblocks

Identifying Chronic Illness Roadblocks

Each chronic illness is unique in its own way. If you have MS you know what to expect, but from MS case-to-MS case, what someone experiences is vastly different from someone else. This makes identifying chronic illness roadblocks particularly difficult if you are trying to figure out how to handle them.

I tend to be asymptomatic in a lot of health-related areas in my life. When I get optic neuritis, I get the vision blurring, but I don’t have any of the pain associated with it. Other people may get the vision and pain, while still others may just get the pain but no vision disruptions.

That’s why it’s important to focus on what happens to you in your situations, not what books or healthcare professionals say you should be experiencing.* Only you know yourself best, even if you haven’t taken the time to actively reflect on your illness.

Below are some questions you want to ask yourself and some tips on where to go depending on your responses. Use this post as an exercise in starting a plan for how to identify and manage your chronic illness roadblocks.

Identifying Life Goals

If you’re a newsletter subscriber, you’ve been working on creating some goals for this year. We’ve established 5 major goals to complete for 2019: 1 long-term goal and 4 short-term ones. If you are here to make some changes while coping with a chronic illness, ask yourself the following questions:

  • What is a specific goal I have in mind for myself?
  • How will this impact my life? How will it impact it for the better?
  • Is this a major life goal? (i.e. something that will alter my life path significantly)
  • Is this a minor life goal? (i.e. a small change I’ve wanted to make)
  • Is this goal related to my chronic illness and in what way?
  • How might this goal impact my illness postively or negatively?

Identifying Chronic Illness Roadblocks

Each chronic illness has its own set of complications that stick with us on a daily basis. It may be pain, numbness, fatigue, or some other invisible element that only serves to frustrate us. Take a moment to list out your daily symptoms when you are not experiencing an attack. Use the following ideas as prompts. You may need to take a few days being mindful of your schedule in order to accurately respond to the prompts:

  • My average energy level each day between 1 and 10 (“1” being no energy to “10” being on 5 cups of coffee) is:
  • My average pain level each day between 1 and 10 (“1” being no pain to “10” being necessary medical intervention) is:
  • What are my motor abilities on a good day? What are they on a mediocre day? What are they on a bad day (but not during an attack)?
  • How often do I have non-attack “low” days? (these may be days where one or more symptoms seem to be overwhelming)
  • How often do I have “high” days? (these will be days when your “spoon” or “matchbox” might be full)
  • Do my days have a cycle to them? Do I have more energy in the morning or in the afternoon?

Additionally, examine previous attacks brought on by your illness. Answer the following questions as honestly as possible. Contact your healthcare professional if you don’t remember or need clarification to get an accurate answer:

  • What attacks have I experienced in the past?
  • What happens in these attacks most of the time?
  • How long do they typically last?
  • How do I manage them alone? How do I manage them with my healthcare provider?
  • Do I know the source of these attacks? (i.e. if I am under a lot of personal stress am I more likely to experience an attack)
  • If I have a particularly bad attack, how disruptive to my life is it?

Make an active decision to chronicle your next attack. Write down the answers to the following points:

  • What happened just before it started
  • What was the first sign of the attack
  • How long did it go on for and what were the specific symptoms
  • What did you need to do to resolve it
  • What did you feel like after the attack (drained, relieved, etc.)
  • Is there a clear event that triggered it or a collection of factors

Making an effort to chronicle your future attacks will help you begin to recognize when you may be getting close to an attack and help you prevent it from starting or start the process of treating it.

I find that my L’Hermittes sign tends to appear when I am stressed out and goes away when I manage my personal stress levels. It’s a canary in the coal mine for me: if I don’t manage my L’Hermittes Sign and allow it to get more pronounced, then I may find myself in the middle of an even worse attack such as Optic Neuritis or lose limb functionality.

Plan to meet those goals

Once you’ve identified your goals and the chronic illness roadblocks (for “normal” days and attack days), it’s time to set up a plan on how to approach your goals. Look at the lists and examine any overlap or similarities in responses to the lists.

For example, in your personal goals, you may want to do more housework but found that on a normal, non-attack day you typically do not have enough energy by the afternoon.Therefore, you may want to schedule any housework you want to do in the mornings rather than putting it off until the afternoon.

Go through each goal and see how it might be impacted by your daily chronic illness symptoms. Then incorporate your attacks with your plans this year:

  • Do not be afraid of the schedule and to-do list. I realized in the months leading up to 2019 that I really needed to rely more on my planner and to-do lists in order to get everything done. My MS causes memory issues, so if something isn’t written down, it’s unlikely I will remember it.
  • Set up multiple goals that are situation specific. If you find that your attack leaves you bedridden for an indefinite period of time, set up a secondary goal that can be done while in bed. You may want to learn a hobby that allows you to work with your hands, or you might want to do more freelance work on your computer – have that goal take precedence when you are in the middle of an attack.
  • If you get tired at the beginning of the day no matter how well you space out your tasks, then front-load all your plans. Try to keep the amount to a reasonable number that you can achieve every day. Don’t plan for ten things if you can only reasonably complete four. This will prevent discouragement and give you a nice boost when you feel productive.
  • If you find that fatigue gets you and you absolutely must rest in order to continue forward, then plan in a daily nap at a specific time so you can help manage the rest of your day. If you are still working, try to schedule a break during this time to give yourself a few quiet moments.
  • If your attacks are ones that bring you to the hospital for a few days, pack a “go” bag ahead of time. Make sure to fill it with comfort and necessities, but also fill it with some of your smaller goals: easy to transport craft, a book you’ve wanted to read, some other project that you know you’ll be able to work on while recuperating. You won’t be scrambling looking for these items and it brings some control back into the situation.

These are just a few ideas to get you started on managing your roadblocks. The key is, if you plan to meet your goals, despite having the additional roadblocks, you’ll have more success.

Work with the illness, not against it

There is a temptation to either ignore or not factor in an illness when setting up goals. The issue with that is, while not acknowledging the illness might be for personal protection reasons, it’s setting yourself up for failure.

If I choose to ignore that fatigue is a problem for me, particularly after 1pm, then it is unlikely I am organizing my time wisely. If I want to successfully achieve my goals knowing that I need a nap around 1pm, then I will schedule only the important tasks before noon (to allow for some wiggle room). Any task completed after 1pm will be gravy and any task not completed after 1pm will be pushed off until tomorrow.

  • By identifying what is the source of your attacks, you can plan how to prevent or work towards preventing those attacks. It won’t be perfect or 100%, but it might help minimize the attack impact
  • Do not ignore the importance of the attacks. Many attacks can come out of the blue depending on your illness, but some are your body’s way of telling you something important. For me, it is telling me that I am pushing myself too hard and putting myself under unnecessary stress so I need to take a step back.
  • Do not look at an attack as a setback, but as an opportunity to reset and regroup. It might take you out of commission for several weeks or send you in the hospital, but this isn’t something that has to be negative, but turned into a positive: I need to rest and take care of myself, so let me do so in these moments.

Remember, being caring and loving to yourself should be behind all of your personal goals. If you want to make self-improvement goals, you are doing them from a place of wanting to love yourself.

Motivation, Motivation, Motivation

Figure out what motivates you. You might find that checking things off your to-do list motivates you to move forward. You’ve answered the questions why you want to make changes, find ways to actualize these changes in your mind.

If you want to keep sharp by doing some brain exercises, think about how nice it will be to be able to remember something without needing to write it down after doing exercises for a few months. If you want to find a new job because the current one is providing stress that exacerbates your attacks, then when you walk out of your interview should be a point of motivation.

Regardless of what it is that you want to do, maintain your motivation by seeing yourself where you want to be and the doing everything to get there. I found that beating my attacks back sooner than I did in the past as a form of motivation, which may work just as well for you too.

Keep moving forward

Attacks are going to happen. You will experience roadblocks. But how you manage the roadblocks will make all the difference. Always keep a plan in mind when identifying chronic illness roadblocks and making personal changes.

What keeps you moving forward? Share your thoughts in the comments below.


*I am not saying ignore or dismiss your healthcare professionals advice. I am. Please read my disclosure policy for more information.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit:  Katie Moum on Unsplash

Advertisements

Setting Attainable Personal Goals

Setting Attainable Personal Goals

A few months back I was looking for an effective way to create a one-year and a five-year plan for myself as a means to set attainable personal goals.

I was tired of coming up with the idea of doing something with no actionable plan to achieve it. I would say to myself, “I want to achieve x,y, z,” but had no plan of action. Many meaningful life goals require more thought and attention to details than simply naming them.

It was at this point I did some research and found a system that helped me better organize my thoughts, create a plan of action and feel like I could attain my personal goals.

Setting SMART Goals

Want to feel smart? Try setting S.M.A.R.T. goals.

S.M.A.R.T. is a mnemonic device for “Specific, Measurable, Achievable, Relevant, and Timely.” Created back in the early-80’s by George Doran, Arthur Miller, and James Cunningham, S.M.A.R.T.  goal creation started off as a business tool that worked its way into personal usage over the years.

Each word acts as a writing prompt, a means to get you thinking about each aspect of the overall goal. When it comes time to figure out these five elements to your overall goal, you answer the question each word presents. The question might look something like this:

  • Specific: can you be clear & exact about your goal?
  • Measurable: how can you quantifiably assess your progress within your goal?
  • Achievable: how realistic is this goal and is it attainable?
  • Relevant: do you have other goals and how does this goal relate to them? How well does this goal relate to your current needs/desires?
  • Timely: what timeline do you see yourself achieving this goal?

For a really clear explanation for each word, Mind Tools has a fantastic page breaking each word down with clear examples to get you started.

Read More


Organizing the Family Schedule

Creating a schedule for yourself is one thing. But scheduling the whole family? It can be like herding cats, particularly if several members of the family have different schedule styles or rarely check the family calendar.

In our house, Ash and I approach scheduling differently. While we have a shared calendar, how we maintain it differs. This doesn’t cause conflict, but we had a conversation a few weeks ago over how I schedule things does not work for him and vice versa. It was an interesting conversation and gave me more insight into how his internal logic works.

Communication is key to any relationship, so setting up a family schedule that everyone has access to and can update helps keep everything straight to avoid conflict and double-booking.

Analog or Digital Calendars: Why Not Both?

We have several different ways we highlight the month’s schedule in our household: analog and digital. In our closet, we have a hanging whiteboard that I update every month with the main activities going on in the household. Ash’s roleplaying games, Jai’s playdates, my appointments.

This helps me plan out my day as I am getting dressed. Do I wear nice clothes for that appointment/coffee date? Or do I spend the day in comfortable clothes because we’re staying home all day?

It allows for quick reminders and conversations that we might need to have in the morning before Ash leaves for work or I go for my morning run.

Digitally, Ash and I have a family calendar that we share together that contains the events pertaining to the family as a whole. Additionally, we keep separate calendars for our own activities, but we mutually share them so we’re aware of each other’s schedules.

Ash put down a reoccurring event in his calendar that highlights two days each week he can help me out should I need it. That way, if I am in the middle of setting up an appointment, but know that Ash will be the only one to watch Jai during that appointment, I can schedule it for a day that won’t conflict the most with his work schedule.

Likewise, Ash knows when he’s able to schedule is medical and social events around me because he can see everything on the family and my personal calendars. Once Jai is old enough, he’ll gain access to and control over his own calendar which will sync with ours so he can be responsible for his own activities.

It seems like common sense, but I’ve seen in several different parenting forums about the struggle of maintaining a common calendar between partners and children. It can be hard to set up, but if using a digital platform, easy to maintain.

Read More


Creating a Productive Schedule

Next to maintaining a clean house, having a daily personal schedule helps keep everything running smoothly because I love efficiency.

Ash will tell you that I get annoyed in the store if other customers navigate the aisles inefficiently and interfere with my shopping experience. Likewise, when I feel inefficient in my day-to-day routine, I get frustrated with myself. I am constantly trying to figure out the best way to manage my schedule in order to get the most efficiency and productivity within my day.

Having a toddler makes this doubly difficult because I have to be mindful of his needs and flexible to his own schedule. If he refuses to eat a meal when it’s time to eat, that can throw the day off because I will have to make sure he’s fed when he’s ready an hour later.

MS & Scheduling

With MS and any chronic illness that has some sort of energy or movement inhibitor, there are a limited amount of hours each day a person has to get things done. Those hours aren’t guaranteed because of the nature of the illness, therefore you have to account for the possibility of spending the day in bed and being okay with that scenario.

I’ve mentioned how important scheduling can be when dealing with children and MS. The key is to be mindful of when I have the most natural energy (un-caffeinated and no early morning exercise), what I want to get done during that period, and how I want to get it done.

My reasoning for this mindfulness:

  1. Knowing my daily natural energy peaks provides a baseline for the most I can expect to get done without any “outside” help. Drinking my morning cup of coffee or going for an early morning run/yoga session give me energy boosts that may not be there every day. If I set my daily goals based on my natural energy when I have days with an energy boost, I feel more productive which might help me get even more done.
  2. MS has forced me to prioritize my life where I have to set 3 major goals for the day during my high-energy periods. The first item is the most important where the third can be pushed back to tomorrow’s top item. Anything on my list that I complete beyond that helps feed the productivity ego boost.
  3. Figuring out how I am going to get something done is equally important. With my MS and a child, simply stating I will sit down and write a bunch of emails doesn’t cut it. I have to squeeze communications in while Jai is asleep or decide to multi-task laundry while I clean the kitchen during nap time.

Additionally, being mindful of my energy valleys is important. I know that around noon I start to get fatigued and after Jai eats lunch I am ready to lay down for a nap or rest between 2 – 4pm. On days where I am out of the house or so busy with a project that I miss my rest means that Ash has to take over parenting as soon as he gets home from work until it’s time to put Jai to bed.

I try to not overdo it, but I do find that because of the unpredictability of MS, it’s like a light switch. I will be fine, fine, fine, and then something flips and I am immediately exhausted with no warning. I try to be aware of any warning signs so I can rest before I overdo it, but most days I am too busy to pay attention.

I am still not sure if I have any warning signs.

Below are my tips for how I create an effective schedule that works with my MS:

  • Take a week or two to track your natural schedule. This will include your energy peaks and valleys, what you do when, and how you feel when you do it. Try to be mindful of whether or not you take an energy boost and how that affects your energy (medication, coffee, exercise, etc.).
  • Analyze your schedule and see if you can find a pattern. This is difficult with MS because each day can be completely different, but you might be able to see that around 10 am you have more energy than you do at 2pm.
  • Try to adjust your new schedule to reflect these high energy periods and schedule a rest during the low energy ones. Prioritize the more important items/appointments during a peak period of your day and not stress if the less important stuff doesn’t get accomplished until tomorrow.
    • If you work outside the home, napping at your work may not be a possibility, but finding a quiet space where you can sit with your eyes closed and undisturbed for 10 minutes might be something you can fit in. Scheduling meetings and important projects doing your high-energy periods work as well.
  • Embrace the productivity energy boosts when you get them. I find it invigorating when checking items off my to-do list. Those little boosts can be so energizing that it feeds into itself to get more done. Just be mindful to not overdo it and wear yourself out.

I think these tips are helpful for people without MS or an illness that interferes with energy levels, but it wouldn’t be my go-to set of suggestions for them. What follows are some broader observations/techniques that have helped me boost my productivity.

Read More


Purging Clutter

The hardest part of any clean: the purging of clutter.

So many things turn into clutter, even things that you wouldn’t normally consider: sentimental items, books, or stuffed animals. It’s like the gardener’s philosophy surrounding weeds: it’s only a weed if you consider it one or it chokes out other plants. It’s only cluttered if it gets in the way and you don’t want it.

The Difficulty with Purging Items

Why purge items? Besides the obvious answer: purging items helps clear out mental clutter as well. I find that I am so much happier when I have a cleaner space, free of unnecessary papers and items.

The issue is deciding what to get rid of and what to keep/store.

I have a slight attachment to items that have a perceived sentimental value. I have three bottles of wine I still haven’t opened that I bought just after I moved South 10 years ago. I have two bottles of wine I bought 6 years ago when I visited my hometown in New England. I just can’t bring myself to open these bottles because of what they represent: the beginning of a new journey and goodbye to an old one.

But they are taking up space and at this point, if they aren’t vinegar, I can’t imagine they will taste good. We aren’t talking about quality bottles of wine.

I am not ready to make a decision about these bottles because they aren’t taking up enough space to be troublesome. Should I need to make space, then I will have to consider drinking them or dumping the contents and repurposing the bottles if I need that sentimental reminder.

But I have plenty of other items in the house that needs to be purged: clothing, toys, books, memorabilia to name a few.

Before Jai was born I went through a massive purge throughout the house in order to make room for his stuff. I knew it would be the first of several, so it felt good to watch the trash bags pile up on the curb for collection and Ash leaving with a car filled with donation boxes. I hoped to do my second purge in the spring after Jai was born, but I wasn’t able to get to it.

Now that he’s almost two, it’s time to consider making another massive purge, which should be easier to do because I already did one round. This time I will have to get rid of Jai’s old clothing, toys, and utility items that he no longer needs. I have everything mostly organized so that part should be easy, but deciding which toys should go will be difficult. That’s where having a system helps me make the more difficult decisions.

Creating a Simple System

When I am setting out to do a mini-purge I unceremoniously create three different vessels to hold my items: a garbage bag for items to be tossed, a random box for items to be donated, and a catch-all area for items to be stored or put away. When I am more organized, like when I was pregnant, I create bins to put each of these items so Ash can pick through them to see if I correctly categorized his stuff that might be mixed in.

I find big, clear, plastic totes work best. Their size helps hold more stuff, but easy to pick through and move from room-to-room if need be. Additionally, they are great to be repurposed as storage containers for the items being stored. I label each bin:

  1. To Keep and Store/put away
  2. To Donate
  3. To Trash/Recycle

Scheduling purges in small doses help keep me focused, just like my massive cleaning sessions.  I try not to spend more than 10 seconds on each item. If I am not sure in that moment I will set it aside and move on. If I find another item that is similar and I am able to make a quick decision about it (usually toss/donate) then I will return to that previous item set aside and make a similar decision. The goal is to have less “unsure” items at the end of each session than before I started.

My Favorite Tips

These are some of my favorite tips for working through a successful clutter purge:

  • I spend no more than 10 seconds on each item to decide whether I want to keep, donate or trash it. Some stuff is easy, for the more difficult items I will set aside to decide later.
  • If I am struggling to decide on a sentimental item at the end of my session, I will put it in a fourth box: this box is meant to be placed in an unobtrusive spot for 6 months. If I don’t reach in the box for the item in those 6 months, nor do I think about it, then I can seriously consider getting rid of it. I take a picture if it’s really important so I can have that instead of the physical object.
  • If an item has utility value, I ask if I will need it within the next 3 months. If no, then I donate/toss the item, otherwise, I store the item until I need it.
  • If I have multiples of an item and I only need one, I will keep the “nicer” version which is usually the newer version or I organize the items so I use the old stuff first. If an item is unopened, but I know Ash or my parents can use it, I give them the option to take it otherwise it gets donated.
  • Getting rid of important paperwork: I purchase a “year” box from a popular store that sells containers and organizing helpers. This box has the current year marked all over it, so I know what year the items were put into it. I write this note on top of it: “important paperwork to be destroyed December 31, (year).” The year is always 3 years from the current year (i.e. if the box says 2018, I am going to destroy the box contents in 2021).
  • I try to remember that we have the internet, so if I do get rid of something and I regret it, I have the means to find it again from someone. This is particularly helpful with books, especially cookbooks. My next purge will probably include all my cookbooks because I rarely crack those open anymore (though I will save my novelty cookbooks). I find that I search online for all my recipes because it’s more convenient for me.

What are some of the ways you purge your unwanted items, especially when you have something it’s hard to get rid of? Comment with your tips and stories regarding how your item purge sessions go below.


Like this post? Make sure to follow me on your favorite social media platform and show some love by sharing it. Links found below.

Featured photo credit: Michelle Melton Photography