learning-to-manage-expectations

Learning to Manage Expectations

Learn to manage your expectations.

It’s one of the first things your healthcare specialist says to you after receiving your diagnosis. While my neurologist never explicitly said it to me, it’s implied. Granted, they have high expectations for my wellness, often higher than I had for myself. But when I was in the hospital, pre-diagnosis, that was one of the first things the hospital neurologist said to me in response to my health concerns.

Whether it’s been said or not, it’s something we learn quickly with a chronic illness. We must manage our expectations because we have no choice.

For many of us, we have the following expectations in life: we’ll be healthy, achieve personally, and go far professionally. Often these expectations get scrapped in favor of coping with a chronic illness diagnosis. We might have pain to manage that prevents certain exercises. Our fatigue gets to be too much that we cannot do the same personal tasks we once did. Or our workplace can only accommodate our illness so much before we see colleagues surpassing us.

The expectations we once had slip away and we feel nothing but discouragement. But do we have to let those expectations go?

John Gary Bishop says in Unf*ck Yourself that we should “expect nothing, but accept everything.” It’s perhaps the healthier way to approach the “manage your expectations” conversation. We should scrap all the expectations we have for ourselves and accept whatever life sends our way with an open mind.

This refers to the positive and negative expectations we place upon ourselves.

Why We Set Expectations

Why do we even set expectations in the first place?

In childhood, expectations are placed upon us and for us. Parents might expect us to take on a level of responsibility around the house, or they might share their desire to see us succeed when we become adults. We extrapolate this external expectation and internalize it for what we think we’re capable of doing. Expectations drive our dreams and our desire for achievements.

But rarely are limits placed on these expectations, and as a child, why should it be limited? We imagine being firefighters, doctors, and presidents as our career goals, not wanting to pick between the three. We expected to achieve anything, especially when told we can be whatever we want when we grow up.

Illness or not, we learn quickly that there are limits to our expectations. Not all of us will get into an Ivy League school. We will have to choose between a firefighter, doctor, and president for a career, if only to pick one to focus on at a time.

Life will not work out the way we expected. And then we get our diagnosis.

The Problem with Expectations

The obvious problem with expectations, at least at first, is that we are often unprepared for the letdown. When we don’t achieve the way we expected, it can feel like a failure. For some, that can lead us to shutdown and get stuck.

When we set expectations early in life and achieve them, it’s often viewed as a good thing. Rightly so, you set a path for yourself and achieved your goal. Rich Karlgaard writes about the problematic relationship Western culture has with early bloomers in his book Late Bloomers. Western culture is so hyper-obsessed with the Mark Zuckerbergs, Elizabeth Holmes, and Malala Yousafzais, that it overlooks those who quietly grind away to achieve their success later in life (30s and beyond).

Because there’s an intense expectation for early success, often when we leave high school or college without making some “30 under 30” list, there’s a feeling of panic. This can bring our personal expectations down, or cause us to stall out for a few years.

This is one problem with societal expectations: we misplace expectations on people who may not be emotionally mature to handle the pressure (for reference: Elizabeth Holmes, Martin Shkreli). When young people are pushed to succeed early, they forget that a window does not close as soon as they turn twenty-five. That window for success stays open their entire lives.

If you are alive, you still have the chance to bloom and succeed.

The second problem referenced in Karlgaard’s book is that early bloomers do not know how to handle failure in the same way late bloomers do. When you are a late bloomer, you get used to “failure;” you get used viewing it not as a failure but as a learning experience. Late bloomers are better equipped with managing their expectations.

Learning to Manage Expectations

In life, there are two sets of expectations: “positive” and “negative” ones. This is a false binary, but I am going to use it for clarity sake. Positive expectations are the goals we set for ourselves that we want to achieve. Negative expectations are the times we don’t believe we can achieve it.

At the time we receive our diagnosis, we might drop our positive expectations: career, family, personal goals; and replace them with negative expectations: lack of mobility, exacerbations, and limitations.

For example: before my diagnosis, I intended to become a University professor. After my diagnosis, I dragged my feet because I assumed I wouldn’t be able to handle the rigorous testing due to memory issues. I replaced a positive expectation, “career goals,” with a negative one, “my memory prevents me from achieving.”

If you are like me, a late-bloomer, hopefully you know how to handle disappointment and also view perceived failures as learning experiences. Transfer that awareness to how you view your illness: manage your expectations away from the negative reasoning of “I can’t do this,” to positive “why not try it anyway?”

Often after a diagnosis, we work our way through grieving for our health. It’s a healthy and necessary process, but sometimes we decide to get stuck on the negative thinking. It’s easy to look at all we think we can’t do, rather than focus on what we can do.

But you might surprise yourself if you take a moment to release the expectations you place on yourself. Yes, you may be struggling to walk or get out of bed today because you physically cannot do so, but does that mean you should indulge in the negative expectations of what you can’t do?

No.

There was a time after my diagnosis where I didn’t think I could run or do anything active due to numbness and fatigue. I was in a negative expectation mindset. I actively decided to remove all expectations on myself and said, I can do something. It won’t look the same as a person without an autoimmune diagnosis, but it will be something.

The moment I removed all my expectations (negative and positive), I found I was able to achieve.

I actually found I went farther than before my diagnosis because I removed all expectations I placed upon myself and my abilities. Even when I was “healthy” I had numerous expectations that prevented me from achieving.

This is because when we manage our expectations by removing them, we remove the mental obstacles that prevent us from attempting in the first place. We go out and attempt to achieve without thinking about the limitations we might have. We may still stumble, but it isn’t a failure as much as it’s a learning experience.

If you were an early bloomer, this is your opportunity to bloom once again. Or, as it is in my case, my chance to bloom later in life.


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: Canva

Advertisements

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.


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:  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.


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