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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Featured photo credit: Canva

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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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Featured photo credit: Canva


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Externalizing My Illness

Since my diagnosis, I’ve had days where I took my chronic illness out on others. Especially those closest to me. Ash has (and still does on my bad days) weathered my emotional storms. There are days where I cannot effectively handle my emotions, and he’s stayed strong for me.

I’ve gotten better, but at the beginning of my health journey, I would purposefully nettle or act in a manner to stir up trouble in my relationship with Ash. I recognize now that they were moments where I projected my emotions onto him: I was upset with life and I wanted to externalize those feelings by taking them out on someone else.

Misery Loves Company

It’s true. Those who are miserable love company.

We’ve encountered it at one point or another: people bringing us down because they feel miserable. Strangers driving badly because they are angry; customers yelling for the manager because of a perceived slight; or a friend undercutting our happy moments by inserting a negative non sequitur.

Personally, I dealt with colleagues who blamed me for their personal problems and close ones not invested in my personal success because of their lack of success.

When others project their misery onto us and we engage with it, we become miserable ourselves.

The Misery of Chronic Illness

A chronic illness is misery enough: fatigue, mental & emotional frustrations, and other painful physical exacerbations to name a few. Often times making it through the day is about maintaining our emotional fortitude. Some days we make it at the end of the day not feeling entirely awful and other days we give into our emotional misery.

When we have a day where our illness overwhelms us, it’s easy to feel miserable. There is a time and place for grieving, but when we externalize that grief beyond ourselves and at others that it becomes problematic. Venting to others is reasonable, we cannot keep everything in, but if we snap at a friend of family member; say something we know is particularly hurtful for the sake of hurting them; or try to manipulate the situation to make someone miserable, we go too far.

I think if we need a moment to vent, especially relating to our illness, we should find someone who understands and preface our venting with “I am not directing any of this at you. I am having a bad day with my illness, so I need someone to vent to…may I?” Not only do we provide them with a warning, but we also give them with the ability to say “no” as well. It is important to respect their decision should they say “no.” They may be having a bad day as well and they cannot provide adequate support without harming their own health.

When we take our negative emotions and energy out on others, we bring them down and we run the risk of alienating those we care about. A day may come where they recognize that they need to remove us from their life to stay healthy.

Acknowledging the Double Standard

When I recognized my bad behavior, I saw that I set up a double standard. It was okay for me to behave badly, but not okay for others to behave badly around/toward me.

I got so caught up in my MS that I didn’t take the time to recognize my expectations for others and how high they were. While it is important to have expectations for those who surround us, after all those expectations can protect us from toxic relationships, the expectations should be reasonable.

I put pressure on others, they were not aware of this pressure, where if they did not listen to me or acknowledge my pain in a particular moment, then they were a poor friend. These were relationships where it was weighted towards me, where I took a lot out of the relationship. So in the moment where they demonstrated some resistance to my one-sided behavior, I dismissed them as a poor friend.

Yikes.

Adding in a chronic illness, it’s easy to develop a built-in excuse for our poor treatment of others. We can have an (understandable) chip on our shoulder because our bodies betrayed us. We feel we’re owed something, so we take what we are owed by externalizing our feelings onto others. Should others treat us in a similar manner…

Once I recognized the double standard I set up for myself and those around me, I was able to take steps to stop engaging in that double standard. I have yet to reach out to those I’ve hurt, I am not at that point yet, but I know I can stop behaving in a manner that is toxic and harmful to others.

I can also take the steps to be more mindful of other people’s journey and respect that they might be going through something equally troublesome that causes them to behave a particular way. It’s never used as a means to excuse bad treatment, but as a means to be compassionate to their situation.

Resisting the Urge

I built up a pattern of bad behavior of taking my chronic illness out on others over years. It’s going to take a long time to unlearn the bad patterns and relearn healthy ones. I still have urges to take my emotional pain out on Ash, but I am quicker to apologize if I do, or I try to preface by saying I need a moment to vent.

I’ve been slowly pulling myself away from toxic sources that might cause me to backslide into negativity and making my peace with my MS. Recognizing that I was externalizing my pain was also a major step in the positive direction. Knowing what I am doing helps eliminate the desire to keep doing it.

Having a chronic illness is no fun, but it’s no one else’s fault that I have one. Not mine, not friends, not strangers, nobody. Taking my emotional pain out on them accomplishes absolutely nothing because I tend to feel worse afterwards.

I have learned to resist the urge as much as possible, but be gentle when I have a moment when I do give into it. Apologize when necessary and understand when others are in a similar space. It’s a way to lower my stress and manage my MS in a healthy way.


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Featured photo credit: Matt Hardy on Unsplash


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Frustrating Personality; Strong Emotions

I’ve often thought to myself, “Man, I have a frustrating personality.” My combative nature negatively impacted my personal relationships. For a long time, I wanted to change my personality, but I believed when I was told that personality is fixed. If I was a pushy person, then I would always be assertive and no deviating from that behavior.

I am discussing personality because it’s one of those things that I highlighted as a dislike in moments of self-reflection. I can imagine some introverts wish they were more outgoing while some extroverts wish they were more introverted.

Since becoming more self-reflective, I found my personality shifted without realizing it. It’s not a significant shift, but I am noticing that life is a little easier than it once was, despite the chronic illness. I would fight certain aspects of my personality, but now I accept them. I’ve found this openness levels me less stressed and more personally satisfied.

Personality: Inflexiable?

So is the personality inflexible? The answer is yes and no.

Often major life experiences can shift our personality one way or another, but there are core things about ourselves we cannot easily change. An introvert cannot become an extrovert overnight. They might be able to have more extroverted moments, but they may never reach the same levels of extroversion as someone else.

There are five traits to our personalities. These are the dimensions that help define and shape who we are:

  • Openness
  • Conscientiousness
  • Extraversion
  • Agreeableness
  • Neuroticism

Each of these aspects is flexible in of themselves, but the degree of flexibility will vary from person-to-person. As I go through each trait, you may notice that you were once curious about a new venture that you are now extremely cautious. This is where the personality shift comes in and why they can be more flexible than you expect.

As I go through each type, I place no value judgment on the examples I provide.

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I Want to Make Personal Changes

We all reach a moment where we say “I want to make personal changes.”

That moment comes when we are unhappy with our lives, or our relationships, or how we manage our chronic illness. When we say “enough,” we self-reflect. But when we self-reflect, we realize that there’s a lot of changes that need to happen to become our ideal self. And that’s where the desire for personal change can stop.

We should acknowledge that we don’t like making these changes, but that they still need to happen.

I Don’t Like This

Humans are complicated creatures, so there isn’t one source for what frustrates us. While I can point to specific influences in my life as the reason why I think a particular way, there is a lot more going on in the background. Many times, I am unaware of these background influences. I just know that I think I am inadequate.

Rationally, I know these thoughts are false. But these thoughts and actions have a hold of me and make it difficult to see past my flaws.

I am lucky that I can point to some situations in my past as the source of what I need to change. That isn’t always the case. There are reactions I have, and I don’t know where they come from. In these situations, it makes it more difficult to want to make the necessary changes.

Knowing the source of my anger makes it easier to acknowledge it and be mindful of it. I may not always successfully deal with it, or even attempt to deal with it, but I am more likely to try and do something when I am able to say “oh, that reaction stems from when the kids in the neighborhood wouldn’t play with me.”

In cases where I don’t know the source of my behaviors, I am more likely to be resistant to making positive changes. It’s stepping into an unknown, and I don’t like that. I don’t have control over what’s happening or what I am thinking. But I know I have to make a change because continuing behaviors that are unhealthy aren’t helping me manage my parenting or my MS.

Hopefully, this resonates with you. You may feel similar: I don’t know why I behave this way, and I don’t want to take steps to change because the idea is discouraging. Know that you are not alone, especially in your chronic illness, and you can make those changes because I know you can. You want to achieve your goals and the only way to do that is to make changes to the unknown and what you don’t like.

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