coping-with-a-setback

Coping with a Setback

It’s tough to cope with a setback. Setbacks stink, and they, well, set us back. How often have you started with a specific goal in mind only to find that something gets in the way of completing it? It might be a person dragging their feet on a project, a health obstacle, or poor timing, so it doesn’t work out.

Every Sunday, I set a small goal for myself for the week: complete my chores each day promptly so I might spend more time with Jai. I might start off strong, get ahead by two days on Monday only to have something happen Tuesday and Wednesday to get me rushing to finish my chores if they get finished at all. As the week marches on, I get farther and farther behind on my tasks until its Sunday again.

It never seems to fail that each time I get two steps ahead, something sets me four steps behind.

It’s frustrating when this happens. Every time I set a goal for myself, with or without expectation, something gets in the way. The trouble is, it isn’t every time that this happens. It only seems like it due to negative bias. But often it’s enough to leave me to feel discouraged that I am getting nowhere near achieving my personal goals.

The Source of Setbacks

When I recognize that I am slipping down a discouraging path with a setback, I try to reach a space where I can understand what is happening. Some delays are out of my control: the car needs an oil change, and thirty minutes last two hours because the car is due for a maintenance check. In this scenario, I have a choice to make: deal with the issue at hand, and get the car checked out, or skip-it and allow a possible issue fester into an expensive problem.

I choose the setback because I know not dealing with the critical task at hand, maintaining the health of my vehicle, can cause more stress in the future. Yet, time was lost that I planned to devote to something else, and that feels frustrating.

Another source of the setback may be of my own making, typically through self-sabotage. I am aware enough to know that I am the source of it, yet sometimes I continue to engage in the self-destructive setback. This may be dropping the ball on a project, not responding to essential communications, or participating in toxic behavior to avoid dealing with the situation.

When I get a setback that is out of my control, I get more frustrated. When I create my own impediments, I have only myself to blame. I can choose to change my behavior to have a favorable outcome. But when the setback is external, I get more discouraged because I don’t know how to fix it. It’s out of control, which makes me feel out of control.

But I am learning how to better deal with it.

Self-Compassion and Gratitude

When I feel out of control, especially amid a setback, I have to find a healthy way to control the situation. There is only one thing I can control, and that is my reaction to the setback. Through this, I can manage the next couple of steps I take. This is my response, how I deal with my response and deciding what my options are.

Depending on the scenario, a setback might feel like a permanent roadblock, but it does not have to be. I have options for finding a way around it. If I react like I’ve hit a dead-end, I won’t try to find an alternative. If I respond like I can turn around and try a different path, I am more apt to consider my options.

And sometimes a shut door is a shut door. There is wisdom in knowing that there are no other options over assuming there are no alternatives.

To healthily manage my reaction to a setback, I engage in self-compassion and gratitude for the situation. I tell myself, “it’s okay that this might not be your ideal situation, but you will do the best you can with it.” I follow it with gratitude that I am given a chance to learn more about what I can do. Adversity, via setback, is often the best tool to teach us about ourselves.

I don’t seek out setbacks, nor do I martyr myself in the middle of one. Rather, I take the “life gives you lemons,” approach: if I am stuck dealing with it, might as well make the most of it.

Despite what it sounds like, I don’t believe life purposely sets out lessons for us. The lessons are always there, it’s just a matter of, are we listening to them? Setbacks are one of those lessons we can’t avoid, so we should look to them not as keeping us back, but teaching us patience perseverance, and humility.

Each setback isn’t an addition to a lesson, it’s just a chance to deepen or refresh what you’ve previously learned.

Maintaining Focus

There isn’t one ideal way to handle a setback. But I have found one thing, besides self-compassion and gratitude, that helps me get through it: maintaining my focus.

A setback often derails us mentally and emotionally. We might want to complete a particular task this week, and an injury prevents that from happening. Rather than focusing on the injury beyond healing, focus on what can be done in the meantime.

Keep yourself focused while moving forward.

Sometimes it hard to keep that focus if it’s a long-term setback. If that’s the case, consider re-evaluating your goals, if only temporarily. Refocus on another goal that might help you achieve your sidelined goal. Look for alternatives, but keep yourself focused on moving forward rather than staying stuck in one place.

Respecting the Setback and Ourselves

The key to dealing with a setback is respecting the lessons and our ability to listen. Delays aren’t inherently a bad thing, though they do get a bad rap. They are frustrating simply because they put a pause on our expectations, and makes us feel stagnant. Yet, a setback can be a good thing.

I view setbacks as an opportunity to take a break. When I create the hindrance, often it’s because I am doing too much and not listening to my need to slow down. I unconsciously self-sabotage because it’s the only way I will listen to taking a breather.

When the setback is out of my control, it allows me to regroup, figure out what happened, and decide on my next step. Delays will enable us to take the time to reassess what is going on in our lives, especially if we usually don’t give ourselves permission to do so.

It is hard to cope with setbacks, but we can and will each time we experience one. And that’s okay.


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celebrate-life

Celebrate Life

Today I wanted to focus on celebrating the big things since we discussed celebrating the small stuff on Monday. So, why not go for the most significant thing worthy of our celebration, and that’s life itself? Why not celebrate life?

Living with a chronic illness makes celebrating life hard, but it can be done. We might wish things were different, hope that we were healthy. But let’s be honest: if we were healthy, there would be something else to make celebrating life difficult. It’s in our nature to skew towards the negative.

We all wish for what we don’t have, no matter how rich or healthy we might be. We are always desirous of something, and with that, we sometimes forget the most important thing out there: that we have our lives.

Using Mallory Smith as an example, let us celebrate each day despite the setbacks we encounter.

Appreciating Victories (Big and Small)

Each day we wake up is a small victory. If you wake up with no pain, a victory. If you wake up with no exacerbation, a victory. If everything is going well, then that’s a victory! That is a moment worthy of celebration.

Maybe you don’t take each (relatively) good moment for granted, but there might be moments where you forget. I often forget to appreciate the exacerbation-free days. I am reminded to recognize them when I am in the middle of a particularly frustrating exacerbation episode. At that point, it’s too late. I am in the past, appreciating what I had; or in the future when the event is over.

Neither of these options is ideal because I am struggling to maintain my mindfulness practice, which can help me manage my discomfort and stress.

It’s difficult to appreciate life with a chronic illness. The absolute uncertainty of when we’ll experience a flare-up is frustrating. Deep in the moments of an exacerbation brings us to the breaking point. Yet, we have to press on. The moments our illness minimally impacts us are worth appreciating.

Allow yourself to celebrate the mundane. Try not to feel weird about it because it’s something everyone, healthy or chronically ill, should do. Celebrate over social media if you need to, let others know what’s going on in your life but do not worry about getting validation. You probably won’t get it, or you’ll get a negative person trying to bring you down. Ignore them because it’s your celebration. Not theirs. If it’s important to you and you are the only one who matters.

Putting it into Perspective

A few months after my diagnosis, I was in the position of being “at least I’m not them,” for some stranger. It was not a good feeling to be the subject of someone else’s perspective-check. Yet, it’s a mindfulness exercise, recognizing that while your life might not be where you want it, there is always someone worse off than you.

To put it into context: I was in group therapy at the time, and it was my final session. As I was doing the “graduating out” exercises, the person taking my spot overlapped and was in their first session, seated beside me. I described my life with MS, how I was coming to terms with it, and I noticed this new person writing furiously in their journal.

I later learned that it was poor form for the facilitator to allow the journal into this safe space.

Curiosity overcame me, and since they were sitting next to me, I peeked over to see what was on the paper. I saw the words “…she has MS, at least that’s not me. I am lucky not to be her.” I was humiliated to see those words. No one else in the group had MS, so it was clearly about me. I could feel my anger towards this person rise and towards myself for being put into a position of pity.

Was that a breach of privacy to peek at what they wrote? Perhaps, but they didn’t exactly try to hide what they were writing. The journal was wide open and tilted towards me. Not knowing this person or their situation, it’s possible they wanted me to see what they wrote.

I recognize the importance this practice plays in our lives. It allows us to acknowledge that while our situation is not ideal, we could have it worse. Often it is said to us by others either as a means to comfort us or get us to be quiet about our situation.

So it’s a mixed bag as to whether this type of perspective check is healthy or not. I am not going to endorse it one way or the other beyond recognizing the importance of maintaining perspective.

For this person, perhaps I was able to provide small comfort in their life. It was incredibly humiliating and yet positively humbling. It would take a few more years before I had a better perspective, but I learned at that moment that I am not as perfect as I thought I was. It humanized me to myself. I know that sounds weird, but for years, I had an inflated sense of self as a coping mechanism. I was out of touch with reality, and this private journal entry broke through that.

It gave me perspective in a different way that it gave the writer perspective. I suspect, given what I remember of what little they shared about themselves, I probably gained more from the whole experience than them.

Mindful of the Moment

Practicing mindfulness is a chance for us to appreciate life.

When we celebrate the moment, at the moment, everything melts away. I am fortunate enough to spend a week or two on the shores of Lake Michigan every year. Looking out at the endless watery horizon, I can put everything aside and focus on that moment, staring off into the distance. It grants me an opportunity to put my life into perspective, but also recognize how fortunate I am.

We may not be able to spend a few moments in a place conducive to personal reflection, but we can spend time being mindful of our life. We can appreciate being able to breathe on our own; our ability to walk or if we can’t, the tools available to us so we can remain mobile; and we can appreciate the support network available to us, regardless of its size.

Take time to connect with the ground beneath your feet, the chair you sit in, or your bed. If you connect with the earth, reflect on all the other people who stood in that spot throughout time. Feel a connection to the faceless masses over several millennia. The animals, the plants, and all of life that experienced the same place you are in right now. Feeling that connection to others, allows you to feel a connection to life itself.

Celebrate that life.

It’s typically in these moments I feel small, but not in a negative way. I recognize my space and place in the universe. My existence is not even a blip in time or space. My problems, concerns, and worries will not matter in the end.

What is important is what I do with my blip in time.

Celebrate Life

Take some time to celebrate your life, as it is, no matter where you are in life. Put it into proper perspective, experience the benefits of mindfulness, and take time to decide how you want to spend your time. Do you want to engage in negativity beyond healthy expressions, or do you want to enjoy the time you do have, as imperfect as it may seem?

Choosing to celebrate life will help you feel better, lower stress, and find the personal satisfaction you might be searching for, despite your chronic illness.


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Appreciating the Small Things

One afternoon, Jai and I walked to meet Ash at work. In the middle of the walkway was a considerable Skink that I almost stepped on because I wasn’t paying attention. This was the second time I almost got this little guy because I tend to be single-focused to keep Jai moving along. Each time I almost step on the little lizard, I feel bad. They are just sitting there, on the sidewalk, appreciating the midday sun. As the Skink scuttles off to avoid my feet, I give a moment of appreciation for them. Here, in a major metropolitan area, is a reminder of nature and a moment to appreciate the small things in life.

Now that I am aware that this is the Skink’s favorite sunning spot, Jai and I keep a lookout for him each time we visit Ash. It’s an opportunity for Jai to learn more about his local ecology, and me to appreciate its size and coloring. With a toddler, each Skink-sized stick is our sunning friend, and each little Skink discovered is the big one’s “baby.”

Watching Jai get so excited over discovery is one of the sweeter moments of parenthood. These are the moments he and I treasure, but often get lost in daily life. I have chores to do, posts to write, and training to manage, that I often forget the importance of slowing down and appreciating the little moments.

Appreciating the small things in life is so integral to de-stressing and finding inner satisfaction.

Don’t Get Bogged Down

Appreciating the small things is not an opportunity to practice avoidance. Sometimes, we use little details as an excuse to procrastinate. Try not to get so bogged down in the minutia that you lose focus of your goals. You may even miss the more significant moments worthy of our appreciation when we focus too strictly on the small stuff.

That said, it’s essential to strike a balance between the little and big things in life. Take time to appreciate the moments you might overlook, but don’t let that consume you. On Wednesday, I will focus on the more significant parts of life worthy of our appreciation.

Grateful for the Little Stuff

How do you determine that something is worthy of appreciation? Why is it important to appreciate?

If the moment or experience strikes a positive response from you, it is worthy of appreciation. Looking at a cute dog walking down the street is an opportunity to appreciate living alongside our canine companions. Hearing a child’s unbridled laughter across the store is a moment to enjoy living in the moment like a child. Seeing a stranger do something kind for you or another stranger is a moment to appreciate the kindness in the world.

These are three moments we might miss or not devote the level of appreciation they deserve. If we want to rewire our brain, take the time to be mindful, and show gratitude in the small things is another area to start. Engage in the feelings a dog, child, or stranger brings up in you. A dog might make you feel good because of how cute it is. A child’s laughter might make you feel good because it reminds you of positive childhood experiences. A random act of kindness might make you feel good because it reaffirms your faith in humanity.

These are all moments of mindfulness. The small things in life tend to only happen in the current moment, so when they arrive, embrace these moments and appreciate life as it currently is. Not how you wish it would be, or your past. These little moments keep us from focusing on the negative that bog us down.

If we are busy appreciating the little things, we do not leave room to focus on the negative.

Take the rest of the day to find moments to appreciate. Observe others behaving kindly. Enjoy a stranger’s happiness. Give your companion animal an extra scratch and take comfort in the feel of their fur (or scales, or feathers).

Find some time today to appreciate the little things in life and see how they add up to the richness and positivity of your day.


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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.


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Practicing Mindfulness with a Chronic Illness

I’ve mentioned mindfulness often in passing on the blog throughout the year, but I haven’t devoted a full post to it. For August, I want to celebrate all the small victories we have in our lives and one way to recognize them is through the practice of mindfulness. Mindfulness is an easy practice for someone with a chronic illness. Mainly because we are mindful without realizing it: daily we observe our bodies, how the body reacts (or does not react), where our moods are, and what we need to do to make the day manageable.

If you’ve engaged in mindfulness practice without realizing it, let’s take some time to focus it towards our emotional health. You’ll find it will help you manage your mental and physical health along the way, which complements any care your healthcare team recommends.

What is Mindfulness?

What do you think of when someone says “let’s practice mindfulness”?

You might envision a person in yoga class, or a Buddhist monk sitting cross-legged with their eyes close. Yes, these are classic examples of mindfulness, but it’s not limited to a form of Eastern philosophy. If you hold to a particular set of beliefs, you might be afraid that practicing mindfulness comes into conflict with them. I can assure you that mindfulness does not conflict, especially if you strip it down to the very basics.

If you’ve sat in a quiet moment, speaking to your Higher Power, that’s mindfulness. If you’ve ever visited a therapist and they wanted you to focus on the moment, that’s mindfulness. If you sit back and observe the world moving around you with no other thoughts than the present, that’s mindfulness.

Mindfulness, very simply, is inhabiting the current space you are in mentally, emotionally, and physically. It does not need to be attached to yoga or meditation. It is observing the moment.

What are you doing right now? Are you reading this post on a phone/tablet or your computer? Are you sitting down or standing? Are you fully engaged with this post or are you multi-tasking? Sit for a moment and think about what is going on right now while you read this.

Mindfulness observes the physical actions you take, the thoughts you think, and the emotions you feel. Often we get frustrated because we might try to sit for a session in mindfulness and our minds wander; something itches; or if you are in the middle of an exacerbation, you focus on that.

All of those “frustrations” are happening at the moment, and therefore they are a part of it. Ultimately, there is no right way to practice mindfulness. If you are not focusing on the past or the future, you are being mindful of your moment.

The goal in mindfulness practice is to keep ourselves grounded in our current moments as much as possible. It is meant to release us from any stress we feel about a future project or the shame of a previous social encounter. We often get caught up in things we cannot control (the future) and things we cannot change (our past), that we forget the current moment.

Nothing goes away when we engage in our mindful practice, but we do get a chance to give our mind a bit of a vacation and re-prioritize. It helps us appreciate what we do have, rather than what we don’t.

Mindfulness and the Chronic Illness

I spoke about the importance of gratitude in last Monday’s post. If you are struggling to get into a space of gratitude, mindfulness will help you get there. When we practice mindfulness, we are unconsciously appreciating the current moment. When we re-wire our brains to engage in gratitude more often, we can help manage our chronic illnesses in a healthy manner.

Mindfulness opens us to looking at the moments when we aren’t experiencing an exacerbation or feeling pain. Sometimes we forget the moments when our illness is leaving us alone, and mindfulness refocuses us to appreciate those moments.

Even when experiencing an exacerbation or pain, we can use mindfulness to refocus the pain or discomfort of the exacerbation. It’s not a cure-all, nor will it make the exacerbation/pain go away, but it can help manage both. Many of our exacerbations are brought on by stress, or made worse by it, and mindfulness is a great stress-reducer.

Even if the practice of mindfulness proves to be nothing but a placebo, the placebo effect is genuine , and mindfulness practice is one of those scenarios of “if it works, or doesn’t cause any harm, why not do it anyway?” It may be helping you better manage your pain, it may have you appreciating each day a little more, or it may help you get into space to begin your own wellness journey.

Silver Linings Abound

Through mindfulness can we take a few moments to recognize life’s silver linings.

While dealing with a chronic illness, we must collect all the bright spots we have in our lives. If we focus too much on the illness itself, it can crush our resolve, our ability not to allow it to control us. We experience pain, physical and emotional, so much more when we let our illness overwhelm us.

However, when we are mindful of the present moment, we can see that not everything is grim. Our thoughts may drift to the negative, but if we refocus on the current moment: the current lack of exacerbation, the current lack of pain, the current lack of drama or stress; do we see that we might be in the middle of a bright spot.

We may be more receptive to trying something new in our lives if we become more present. That may be trying a new medication, taking on a healthy endeavor, or allowing ourselves to begin the process of grieving that might be previously repressed.

It’s a chance for us to no longer view ourselves as victims of our illness, but our illness as just one more thing to overcome in our lives. To be clear, our illness can victimize us by taking things away, but we do not have to act like victims. There is a healthy way to cope with our darker emotions and thoughts relating to the illness, but being unwilling to make healthy changes is not the way to go.

Mindfulness can show us the way that we can make changes. We can be healthy. We can control how we respond to our chronic illness.


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