is-there-a-positive-in-an-exacerbation

Is there Positive in an Exacerbation?

Ask yourself this: is there anything good that comes from a chronic illness exacerbation? The obvious answer is no. The hidden answer is yes.

Exacerbations do a number on our bodies and psyche. They are physical and mental setbacks that leave us feeling stuck in place until they are over. They can cause long-term damage or help progress our disease farther along.

Stating that an exacerbation can be “good” is unconscionable. As people coping with a chronic illness, we want to avoid them at all costs. Absolutely. But that isn’t always possible. I am aware that I could become a Zen Master and banish all the stress I feel in life, and still get hit by an MS exacerbation without warning. That is the very problem with a chronic illness: the unpredictability.

The key is to find a silver lining in the middle of each exacerbation as much as possible. There will be moments where maintaining optimism is near impossible, and that is fine. But in the moments we can find a ray of sunshine, we should embrace positivity.

The Frustration of an Exacerbation

Exacerbations slow us down. They can land us in the hospital for treatment, and they can leave us searching for more answers on how to best approach our treatment.

I hate exacerbations because of how much they set me back. Before I managed my MS, I would be in the middle of an important project, and an exacerbation would slow me down for several weeks while I recovered. My usual MS symptoms, like fatigue, often cause me to take a day “off,” while I recover in bed.

I often wonder if my body coordinates the timing of the exacerbation as a form of self-sabotage. I get ahead, and my exacerbations/symptoms pull me back.

There might be some truth to that conspiratorial belief. I am pushing myself so hard that I do not listen to my body, so my body has to get my attention. Fatigue, L’Hermmittes Sign are red flags that I am not taking care of myself.

And if I continue not to listen, the exacerbation comes along to stop me in my tracks and take a break. But by then, it’s usually too late, and I may not know the extent of the damage done by the flare-up.

Gratitude in the Lowest Moments

We know that exacerbations are annoying, we know that they can be damaging, so how can I find the positive in these adverse chronic illness events? What follows is what works for me, so your own experience may not reflect my own.

I learned that an exacerbation is an excellent opportunity to practice gratitude. Sometimes the flare-up affects my depression, so finding appreciation might be impossible. Literally, because the exacerbation is the source of a mental block. If this happens to you, try to remember not to feel discouraged because it is out of your control.

But in the moments where this isn’t the case, where the exacerbation impacts your body, where you can recognize what is going on, we can practice gratitude. This isn’t something you will be able to whip out on the first go, it will take practice. A lot of practice. Gratitude and positivity are hard to be the first thing we reach for in our lowest moments.

What would gratitude during an exacerbation look like?

Take time reflecting on the points I’ve listed below and try to find gratitude in at least one of them. If one of the points don’t fit or bring on further negative thoughts, move on, and find another aspect that can help.

When you find a point that works, take time to examine it thoroughly. Reflect on each part that you are grateful for, each positive experience you’ve had relating to it. This will serve as a healthy distraction from your exacerbation.

  • Your medical team. How quick are they to listen to you and respond to your needs?
  • Your support team. This might be your family, professional nurses/helpers, and beyond.
  • Your social network. Both online and offline. How well do they listen, respond to your needs, and help you through your tough times?
  • Your financial situation. Is it favorable or not? Do you have the means to care for yourself?
  • Your overall health outside of the exacerbation. What are you usually able to do and looking forward to once this resolves?
  • Your professional situation. Are you satisfied in your professional life, and do you find validation there? Are they supportive of your case?
  • Overall survival security. Do you have a home, food, ways to clothe and take care of yourself? Ability to get around, even if it’s less than ideal?

Hopefully, you’ll find plenty of things to be grateful for running for this list or have a starting point for your own gratitude list. It’s essential to find things you do have in your life, despite this low point, and focus on them as a means of distraction. The idea is to help uplift you until you recover.

Searching for Positive

I will acknowledge that it’s privileged to say that there can be a silver lining in almost every situation. Certain fundamental conditions need to be met before taking a step back and look for the positive. I am sure a number of my readers are in that position of privilege, but I won’t make a sweeping generalization.

That said, try and look for the positive even in the middle of your exacerbation. Finding the positive does feel futile at times, so don’t feel pressured if you can’t find it. There are going to be good moments, and there are going to be bad. When you first start off, there will be more bad moments until you get more practice.

The key is to retrain your brain to not focus on the negative, but be receptive of the positive. This will be an uphill battle, as our biology steers us towards the negative. We are no longer running from other apex predators when we walk in the woods, so take time to retrain the primitive brain.

Exacerbations, while overall, are not a positive experience, they can give us a chance to find the positive in our lives separate from the negative experience. They give us a chance to slow down, appreciate what we do have, and find a way to retrain our brains to focus on the positive aspects of life. It’s not ideal, it never is, but it’s one way to cope with an uncontrollable situation.


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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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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.


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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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declutter-your-mind-book-review

Book Review: Declutter Your Mind

After finishing Unf*ck Yourself, I did what many readers do and look for more books to read. I find that similar books help commit what I want to learn. One of the books that popped up was S.J. Scott & Barrie Davenport’s book Declutter Your Mind. I figured I would give it a go, considering July is all about mindfulness and loving ourselves. One thing often stands in the way of my own journey of love, and that’s the clutter that takes up space in my mind.

This book seemed like the perfect follow up to Bishop’s book since I still had some clutter holding me back. I wanted to get some new techniques, ideas, and perspectives to removing the clutter that prevents me from fully loving myself.


Note: I was not compensated to review this book, I am sharing my thoughts as it might help readers on their journeys. All links are unaffiliated and I receive no monetary benefit by providing them.


Book Information

Title: Declutter Your Mind: How to Stop Worrying, Relieve Anxiety, and Eliminate Negative Thinking 
Author: S.J. Scott & Barrie Davenport
Date Published: 2016
Publisher:  CreateSpace Independent Publishing Platform
Pages: 156
Genre: Non-Fiction, Self-Help

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