setting-reasonable-long-term-goals

Setting Reasonable Long-Term Goals

One of the hardest parts of having a chronic illness is the uncertainty that comes with it. How long will my attacks last? How long do I have before I get permanently worse? What’s the point in setting reasonable long-term goals if I don’t even know what’s going to happen tomorrow?

It’s very easy to go to a negative place with a chronic illness. Even today, after feeling settled about my diagnosis and where I am in life, I have moments where I get negative about my situation. There are days where it feels like the MS is overrunning my life.

That’s why taking the steps for self-improvement can be hard because it feels hopeless to even start. But I want to say that no matter where you are at in your illness, there’s always an opportunity to set goals for personal growth.

Long-Term Goals as Complementary Treatment

The very act of setting a long-term goal while dealing with a chronic illness is a declaration that you are fighting the disease. It’s acknowledging that the disease will not be completely control your life – but you will be getting the control back.

Recent studies focused on the importance of setting goals, specifically with patients diagnosed with a chronic illness. Working with healthcare providers to establish long-term care goals related and unrelated to chronic disease management found that patients benefited from patient-centered care.

Additionally, setting goals outside of disease management, such as making lifestyle and wellness changes for overall health, found that patients positively benefited when no longer focused on disease management metrics.

When we focus on creating beneficial long-term goals either with disease management in mind or not, there are positive outcomes that manifest from the simple process of making the goals. It’s saying “I am going to be here a while and I am not accepting defeat in my disease.”

Hope, while there seems to be very little of it nowadays, does play a role in disease management. It’s not about being unaware of the reality of the situation or not being realistic about the diagnosis. Rather, I would argue it’s a statement that you make to yourself and with others that you are not allowing the illness to have the upper hand despite the ways it manifests.

By maintaining hope and setting long-term goals, you are taking on a more active role with your care and helping to stack the odds in your favor by doing what you need to do to get the best possible care given the circumstances.

Setting Reasonable Long-Term Goals

If you are taking the 2019 Wellness Challenge with MS Mommy Blog, you probably have a long-term goal you’re working on this year. Why am I bringing this up now, at the end of January? Mainly because if you are like me, and I am admittedly average, it’s around this time that I struggle to maintain my resolutions and goals.

I am also bringing it up because it’s to recognize and honor the importance of long-term goal making. I think it’s normal for people to discount the importance of goals, especially when coping with a chronic illness of sorts.

If you haven’t established a long-term goal for 2019, it’s never too late to start. The key is to set a reasonable goal that you know you can undertake.

Even if the goal is to have a five-minute conversation with your healthcare provider about the direction of your care and you know it will take all year to work up the courage to do so, this is a reasonable long-term goal to set for yourself.

This is why I settled on the S.M.A.R.T. method to work through this year. It keeps your goals grounded and applicable to whatever you are looking to do for the year. Make sure you sign-up for the newsletter to get the latest information on how to help set up reasonable long-term goals for the rest of the year.

This Coming Month

February will be focusing on the importance of self-compassion and chronic illness, especially when it relates to self-improvement and wellness. It’s easy for us to get caught up in feeling frustration with our limitations and chronic illness. But if we practice self-compassion and go easy on ourselves whenever possible, we’ll find that maintaining our goals will be easier.

Stay tuned for February.


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Featured photo credit:  Samuel Scrimshaw on Unsplash


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.


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Featured photo credit:  Katie Moum on Unsplash


roadblocks-with-a-chronic-illness

Overcoming Roadblocks with a Chronic Illness

If you are taking this journey to wellness with a chronic illness, an understandable first concern will be: what about the normal roadblocks I encounter with my illness? What if I have a flare-up and cannot do anything for weeks time so it sets me back?

These are valid concerns and I am here to tell you that it will be okay when that happens.

Despite my best efforts, I still get mild MS flare-ups throughout the year. Because of my blog, I’m more aware that during the transitional times of the year, spring into summer, summer into fall, I am more likely to have some form of a flare-up.

These flare-ups can set me back a day, a few days, a week, and in one extreme case, a few months (though that’s been a while). 

I have learned to accept that these flare-ups are normal and move forward in my journey in spite of them.

New Journey; New Frustrations

Whenever starting a new journey there’s always moments of self-doubt. Will I succeed? What will the success look like? What would failure look like? How do I avoid failure?

There are always a ton of questions. When dealing with personal goals that require us to do extra work, such as adding in an extra walk for the day, looking over a boring task that you’ve been avoiding, or working through a particularly emotional part of your life; it’s easy to get stuck and want to avoid dealing with it altogether.

That’s part of the problem, something gets frustrating so we put it off and then we get discouraged and the cycle continues. Adding in a chronic illness where things happen out of our control adds an additional layer of frustration.

Chronic Attacks!

In the Multiple Sclerosis communities, we have many different names for when the illness/disease takes over: flare-up, exacerbation, and my personal favorite, the relapse. If you have another autoimmune disease, chronic illness, or personal wellness roadblock, you might have a different name for it.

To avoid confusion, let’s just call it an “attack.”

Attacks happen. You know they are going to happen and that might be discouraging, but it’s part of your normal like it or not. We might as well take a moment and embrace it. Our normal is not the same as anyone else’s normal. Let’s be honest: no one’s “normal” is like anyone else’s with or without a chronic illness.

The best thing we can do in these situations is to recognize that attacks will happen and prepare ourselves for dealing with them effectively. If you know what triggers an attack and how to manage it, then make a game plan.

Make the Changes Anyway

Since we know roadblocks with a chronic illness are going to happen anyways, there’s never going to be a good time to make the wellness changes you’ve been wanting to make. That’s why now is the time to make those changes regardless.

I would love to have a day where I don’t deal with any fatigue so I can do my yoga or respond to a bunch of emails that end up taking several hours. But I won’t get that day and if I do, I cannot plan for it. Chronic illness never allows me to fully plan when and if things get done.

If I want to do yoga or be productive, I have to make those changes regardless. Roadblocks with a chronic illness are normal, so it makes sense to accept them and work with the roadblocks when it comes time to start a wellness journey.

It sounds like I am saying “just do it,” and on the surface level, I am. But what is different is how you approach the “just do it” attitude. I am reducing a very complicated situation down to changing perspective because that’s the first step in a very difficult and very personal journey.

It’s all a Matter of Perspective

If you’ve been in the middle of your illnesses long enough, it’s easy to forget what it’s like to have a “normal” life. Concerns for attacks can rule your days, so you forget how different concerns would interfere with those who don’t cope with a chronic illness.

A car breaking down can take someone out of commission for weeks at a time, like an episode for us. Twisting an ankle might keep a person from exercising for a week until they recover, just like an attack.

Sure, we have the added concern the same things that happen for “normal” people happening to us PLUS dealing with an attack, but the point is –  everyone has things that can bring up a roadblock and stymie all progress made when trying to live a wellness-based life.

Maintaining the perspective that there is always a concern for an attack, but focusing on it ending (even though you don’t know when) and finding small ways to work around it will keep you going. Obviously, some attacks will prevent you from moving forward because if you are bedridden and there may be little you can do to adjust. However, if you are bedridden but able to lift a weight, even if it’s a book for a couple of repetitions, the very act of doing something may be enough to help keep you going.

Adjust your perspective to see that you are not alone because everyone has roadblocks, and that your roadblocks just look a little different than others.

Roadblocks with a Chronic Illness

As you begin your wellness journey, expect the roadblocks or attacks to happen, and embrace them. I am not recommending leaning into them to make excuses, but say to yourself: well, this is going to happen and I can’t necessarily change it, so I might as well work around these roadblocks to bring about a positive change in my life.

I cannot guarantee it because I am not a healthcare professional, but there’s a chance recognizing these attacks as normal and adjusting your perspective to be prepared for them might help lessen the attacks when you get them. It may never prevent them and what damage/time taken away from your life, but when you are ready for something you know how to effectively deal with it.

I have found that I’ve shortened the length of my attacks when I am prepared and don’t allow the attacks to discourage me or my progress. I tend to have an attitude of “well this is an annoyance, but I clearly need to slow down because I am overworking my body in some way.”

This suggestion and method of approach are not “one-size-fits-all” but if you’ve never tried to prepare yourself for these attacks in mind, it would be worth trying to account for them over the next couple of weeks.

For Wednesday, look for a post on how to begin the process of planning for and accounting for roadblocks.


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Now What? Beyond the Diagnosis

This post was originally published in March 2018.


On Wednesday I published a deeply personal post about the first couple of months after getting my MS diagnosis and how I went through the coping and grieving process. Because it was an emotionally charged post, I wanted to balance it out with a post about finding acceptance and the healthy ways I’ve tried to manage my MS both physically and mentally.

First, let’s get this out-of-the-way: Any changes made you have to want for yourself and they will occur in the amount of time appropriate for you.

Do not let people, myself included, tell you that you have to make changes in a specific timeline or before you are ready.

Do not read this post and feel like you aren’t doing enough to manage your grief or your diagnosis. You are unique and different from me and that’s okay.

You will make the changes when you are ready.

Despite this, there are things I cannot recommend:

  • Staying stagnant and giving up
  • Engaging in self-destructive behavior
  • Refusing to be open to new experiences

In my last post, I engaged in all of the above behaviors at one time or another, so when I say I cannot recommend them, I say it from personal experience. If you find that you are engaging in one, some, or all of these behaviors, it means you are still working through your grieving process.

That’s okay, but ideally, you want to move beyond the grief at some point because it brings personal peace that makes the pain and frustration more manageable.

So what does it mean to transition into acceptance?

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Self-Generosity

This post was originally published in December 2017.


At this time of year, life can get overwhelming. There are social, familial, and professional obligations that all demand our full attention. While these demands don’t go away, they do seem more urgent at the end of the calendar year.

It is easy to get caught up in these demands and struggle to prioritize them (and sometimes they don’t allow for reasonable prioritization). It leaves a person feeling frazzled, burnt out, and hating the holiday season.

That isn’t the case for everyone, but I am sure we’ve all had moments in life where we would like to skip straight to January 2nd and move on with our lives.

We’ve run into others who feel this way: try going into a mall around this time of year. I’ll just leave it at that.

Piling on top of the usual life demands are calls for generosity from various organizations at the end of the year. Commercials are filled with pathos-based appeals to get the viewer to donate to various causes. Religious leaders ask their people to open up their wallets and give money, toys, or time to those who are less fortunate. Stories of tragic events lead to calls for donations of food, items, and blood. Passive social pressures increase: social media pages are flooded with posts from others announcing their generosity.

It gets extremely overwhelming.

The issue is, that when we think about the term “generosity” we think about it as giving to others. But look at the definition of the word:

Generosity
nounplural generosities.

1. readiness or liberality in giving.
2. freedom from meanness or smallness of mind or character.

3. a generous act:
   We thanked him for his many generosities.

4. largeness or fullness; amplitude.

Dictionary.com

Nowhere in the definition does it specifically define generosity as an act we give to others. It is an act of giving and love, but with no defined recipient.

When we get caught up in the minutiae we completely forget about the importance of taking care of ourselves. We are told that we should be generous with our time and care for others, but it’s extremely hard to care about another person if we don’t take care of ourselves.

If we care for our own needs first we can be more effective for others. And when everything becomes too overwhelming, we might be able to see through it with less stress and frustration.

The Importance of Self-Care

I saw this quote posted on a friend’s Facebook wall and it was the foundation for this post. I kept the original formatting:

self care isn’t always lush bath bombs and $20 face masks. sometimes, it’s going to bed at 8pm or letting go of a bad friend. it’s forgiving yourself for not meeting your impossible standards & understanding u are worth it. self care isn’t always luxury, but a mean for survival

Cheerful Nihilism

Self-care quotes, personal revelations about self-care, articles expounding self-care all make the rounds on a fairly frequent basis. Some of them connect with us and others we either ignore or go, “yeah, if only it was that easy.”

All the wisdom in the world about self-care/self-generosity does not mean anything if it doesn’t connect with you. And let’s be blunt about the quotes/revelations/articles: they aren’t saying anything new. It’s all steeped in common sense.

We just need them to remind us every so often.

I am not an expert that can espouse pearls of wisdom of how to better take care of yourself, but I do recommend that you be more generous to yourself. Allow yourself to be more selfish.

But this isn’t the same when we think about being selfish. This is a loving selfishness.

Recognize that you need to take care of yourself before you can care for others. The Mayo Clinic recommends that caregivers take care of themselves first before they take care of others. They acknowledge that a person must be selfish if they are going to be an effective long-term caregiver.

Everyone is a caregiver. For some, it’s for another person; for everyone, it’s themselves. We all must care for ourselves.

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