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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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Gratitude

Looking for an easy way to hack your brain? Consider practicing gratitude on a daily basis. It’s rather simple, but sometimes hard to do. When we practice gratitude, we are stating to ourselves and those around us that we are worthwhile and we appreciate our life. Gratitude is so important to our overall well being, it really does re-wire your brain to focus more on the positive and make healthier choices.

Gratitude can help you manage your stress, your illness, and how you operate in the world on a daily basis.

In the month of November, I try to focus on gratitude in some capacity. I decided to do it a few months early this year because gratitude should be a year-round thing. Doing it for a month out of the year, a week, or a day, is not enough to make meaningful changes.

Gratitude should come as a daily practice if we want to truly rewire our brains to be healthier.

The Science of Gratitude

Often we look for quick and easy solutions for our problems. Living in an age of instant gratification dulls our ability to be patient, so finding a solution to a long-term problem is difficult sometimes. With that in mind, gratitude is one of those easy to do exercises that offers a short-term response with long-term ramifications.

Have you found yourself feel better after doing something nice and unexpected for someone? Or when you express your appreciation for someone without cause? It might be a temporary good feeling, but science backs up that these moments, when added up, can re-wire your brain to be more receptive to positive experiences.

But when you are dealing with a chronic illness, sometimes the last thing you want to do is express gratitude for yourself or the world around you. After all, your body’s betrayed you. Often all we can think about is what we lack, such as our health, and not what we have.

When we take the time to incorporate more gratitude in our lives, despite our illness, we rewire our brains to spend less time on the negative aspects. Focusing on the positive brings us into a space to make healthier decisions for ourselves and can lower our overall stress.

And stress is something we strive to avoid in chronic illnesses.

Creating Space

We must be present in our lives, chronic illness or not. We choose to take a chance to do what needs to be done, or we choose to let life happen to us. If you struggle, like I have, with incorporating gratitude, consider creating a five-minute space to practice one instance of gratitude each day. Often the recommendation in the morning to set the tone for the rest of the day, but if that’s not possible, do whatever time works for you.

I learned this lesson recently: there’s an expectation to do things at a specific time because “that’s what’s right,” but that may not work for you. If your moment of gratitude is in the middle of the day or before going to bed, then do it then. When it happens does not matter. Just that you are doing it.

Try to set the alarm at your preset time if you often forget to do something, and commit to a short practice of gratitude for five minutes. Five minutes out of all your day is but a drop and passes by rather quickly.

Practicing Gratitude

Find the practice that works best for you, there are so many ways to practice gratitude. Try until you find something that works, don’t settle on what you think you’re supposed to do. Here are some suggestions to get you started.

  1. Buy a gratitude journal and follow the prompts
  2. Think of something silly about yourself that you love
  3. Do a random act of kindness for a stranger with no expectations of a acknowledgment/validation (i.e. don’t post about it on social media)
  4. Compliment a stranger on something you genuinely like about them
  5. Create and maintain a list of things you appreciate everyday. Add a new one during your gratitude time
  6. Find a silver lining in a difficult situation
  7. Relish a challenge or adversarial situation, rather than taking on a victim role
  8. If you are able to, volunteer your time
  9. Surround yourself with people who are grateful and make you feel good about yourself
  10. Find a gratitude rock or object that you can keep near yourself at all times to remind you of being grateful

The Importance of Gratitude

We don’t have to wait until November to practice gratitude in our daily lives. If you want to work towards rewiring brain towards a more positive outlook, just start with gratitude. It’s still going to take time to undo what might be years of negative thinking, but it gets you into the head space you need to be in to be receptive to change.

That’s the best space to be in: open to making positive changes in your life if you’ve previously struggled with it. Gratitude truly is one of the easiest and quickest ways to get into a positive space for yourself. I am already finding that I let things go a lot quicker than I used to, and appreciate the moments I have more.


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Gratitude for Yourself

For the past two Novembers, I’ve spent the month examining gratitude in different ways. I am going to shake things up a bit by talking about gratitude in July. Why? Because it’s important to be grateful for yourself no matter the time of year.

If you don’t know where to begin when trying to love yourself more, try starting with gratitude. I find it’s easier to acknowledge what we are grateful for than what we might like about ourselves. For instance, saying, “I am grateful I can walk today,” might be easier to acknowledge than, “I love how I feel when I buy a stranger coffee.”

It might just be me, but if you struggle to love yourself, give gratitude a try.

What are you Grateful For?

Do you have any ideas about what you might be grateful for in yourself?

If you don’t, that’s okay, we’ll start off simple. Consider that you are alive, it might not be quite what you want, chronic illness or pain, but you are breathing. For each breath you draw, you are given an opportunity. You have unrealized, untapped potential.

I understand it’s trite to start with that, but I think when dealing with a chronic illness, we often forget that life can be worth living and that we should be grateful that we can experience life at this moment, such that it is.

Imagine dealing with your illness fifty years ago. Try one hundred. Now five hundred years. Suddenly, those week-long hospital visits seem less awful because we’re lucky enough to have them. This isn’t minimizing your experience, it’s putting it into perspective.

We live in a time, with medicine being as advanced as it is, that we can be alive. While my MS may not have slowed me down fifty years ago, there’s a chance I’d be blind, lame, and possibly erratic from the brain damage brought on by untreated exacerbations any time earlier than 1919.

Sure, it would be nice to be alive when all chronic illness is cured, so I never had to deal with my MS, but I’ve grown so much because of my illness. I am grateful for my life and to be alive right now. When I say that, I can feel a sense of love flow within for myself.

If that’s too much for you, or you can’t get past the hokey-ness of it all, which I understand, consider something you can do. Maybe it’s a talent you hide from the world, like realistic cat doodles. Or maybe it’s something people know about, your ability to craft a beautiful project without a plan or pattern.

Find something special about yourself that you may overlook, and express a moment of gratitude for it.

Why Gratitude is so Important

Science backs up the importance of expressing gratitude.

In short: we become more open to others and opportunities; we can improve our physical health; it helps us with emotional regulation; it increases our empathy and lowers aggression; we can sleep better when we’re grateful; it improves our self-esteem; and it reduces stress while building up our mental fortitude.

Several of these points are significant in the daily management of a chronic illness: improving our physical, mental, and emotional health; increasing our empathy; helping with sleep; and lowering our stress.

It helps us accept what we cannot control, and give us peace in the face of the uncertain nature of chronic illness. Gratitude, no matter the form it takes, can ease our suffering.

While gratitude will not cure our illness, it might help us with managing it. It’s holistic in nature and complementary treatment to the prescribed drug regimen you have with your healthcare team.

Best part? It’s free.

Gratitude in a Chronic Illness

Practicing gratitude while coping with a chronic illness is a puzzler. How do we engage with a practice of appreciating life when we see others surpass us in health? So many times I feel passed by from peers who have heaps of energy and drive that I struggle with daily.

Knowing that my MS has no specific trajectory also adds to the stress. While it shouldn’t progress to SPMS any time soon, what if it does? And when it does, what then? It’s hard to be grateful when there is so much uncertainty.

As mentioned above, there is a chance to be grateful despite our illness. We are fortunate enough to be alive when medicine can help us, either in managing the illness or make us comfortable.

Another perspective to take is that our illnesses allow us to have a clearer perspective of the world. We are aware of our limitations in ways that others might not be, and we know how far we can push ourselves. We’ve had our dose of adversity, things that used to bother us, might not anymore.

We can view each day without an exacerbation as a gift, something to be celebrated because we know what it looks like when we can’t walk or get out of bed. When we have an exacerbation, we can look at it not as a setback, but as our body telling us we need to slow down and take care of ourselves.

Exacerbations can provide us with the opportunity to try something new, like painting or reading a book or binge-watching a show we’ve been meaning to view. It sucks, for sure, but our gratitude for the slowdown can allow us to see the silver lining while dealing with the symptoms.

It’s important to take this perspective when it comes to our chronic illness: I cannot control it beyond my management regimen. Everyone, healthy or ill, has uncertainty in their lives. Everyone. I have the added benefit of the chronic illness, but it does not differentiate me from others as much as I think. Finding gratitude is not ignoring the illness but accepting that it will not be going away any time soon.

Finally, ask yourself this: if I cannot change my life with the illness, what can I change? The answer is your perspective by being grateful for what you do have and what you can do.


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Featured photo credit: Canva


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Book Review: Salt in my Soul

I knew it wasn’t going to be easy to read Mallory’s Smith’s book, Salt in my Soul, for this month’s book review.

Going into it, I was aware that the only reason I could read the memoir meant that it was published posthumously. Mallory kept meticulous, over 2500 pages worth of journal entries surrounding her journey with Cystic Fibrosis(CF). Before her double-lung transplant in 2017, she entrusted her mother with these entries, with the desire that if anything should happen to her, that her mother compile them into a cohesive book meant to help those “struggling with cystic fibrosis, loss, chronic illness, body image issues, depression, anxiety, or transplant.”

I would be lying if I said I jumped in immediately to read Mallory’s memoir when I received the book. It’s one of those books you have to circle a few times before committing to reading it. It has nothing to do with the writing style, and everything to do with the content matter. You know you are about to take an emotional journey with Mallory through her ups and downs, her victories and losses, all to end at the same place: her passing away.

Spending 294 pages with Mallory’s voice, told through Diane Shader Smith’s deft editing, you can’t help but fall in love with her writing style and ache when she aches, either through the physical pain brought on by the disease, or the disappointment in missing out on a potentially life-saving lung transplant.

None of this should dissuade you from reading Salt in my Soul, instead I hope it motivates you to read it for the gift of wisdom she gained during her fight. So much insight in such a young life, so much we can appreciate as we journey with our own chronic illnesses.

I am grateful to have the opportunity to read Mallory’s book for MS Mommy Blog, and appreciated reading someone else who had a similar philosophical journey as my own.


Note: I was approached to review this book, though I received no compensation to do so. All links are unaffiliated and I receive no monetary benefit by providing them.


Book Information

Title: Salt in my Soul: An Unfinished Life
Author: Mallory Smith
Date Published: 2019
Publisher:  Spiegel & Grau
Pages: 320
Genre: Non-Fiction, Memoir

Goodreads Link
Amazon US Link
Official Book Website

Salt In My Soul from Salt In My Soul on Vimeo.


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Stress and MS



Stress and MS.

These two go hand-in-hand. Without one, you wouldn’t get the other. Stress is a universal problem, something everyone deals with at some point in their life. Sometimes it is good, it motivates us to push through a problem for a solution. Other times it can hinder us and negatively impact our health.

I’ve talked about stress multiple times on the blog, but I knew that for MS Awareness month it deserved its own post. Stress plays such a big role in coping with MS, that for some of us, it induce our initial symptoms.

What is Stress?

Experts talk about stress on the morning talk shows. We complain to friends about it. Universally, we know and understand stress. But physiologically, what is stress and how does it affect someone who isn’t suffering from MS?

Stress is the body’s response to changes in mental, emotional, or physical changes. While the body is designed to handle stress, too much can trigger a negative physical reaction. If enduring a period of long and extreme stress, you are more likely to get sick. Your body starts to work against itself: ulcers, headaches, depression, anxiety/panic attacks to name some conditions induced by stress.

But it’s not always a bad thing.

Stress as a Positive

I firmly believe in good and bad stress. I thrive on positive stress: working on an important personal project and working up to the deadline to complete it.

Stress is one of the main drivers to get me to write as much as I do for the blog. It keeps me on track and keeps me posting.

I find that it’s such a major motivator in my life: I am freaking out to complete something, but I feel so productive once it’s accomplished. Turns out that “good” stress is a thing: it’s also known as eustress. Eustress we know we can handle and it’s usually short-term. It’s not necessarily easy to handle, but it’s manageable and can be used to drive us forward.

It’s what helps make an effort towards self-improvement.

Stress as a Negative

When we think about stress, it’s usually negative. It’s what causes us to freeze and feel burnt out. It’s hard to work through and can leave us feeling tense and angry.

This sort of stress is the kind that shortens your lifespan. It’s the kind that you have very little control over. When life throws hurdle after hurdle at you, and there’s no way to get out from underneath it, it’s this form of “distress” we experience.

This distress is where morning shows stake their segments upon. We buy books, browse blogs, pin ideas, and take classes all trying to cope with the distress we experience. We want to get rid of it because of how uncomfortable and miserable it makes us feel.

Unfortunately, we have very little control over when it ends and what it does in our lives.

Stress and MS

I spoke with my neurologist a year or so into my diagnosis and mentioned a potentially stressful situation. I asked him about how this situation would impact my health and my MS.

“Negatively,” was his response, “ask [those involved] to knock it off and do you want a prescription to give them?”

We had a good laugh over the absurdity of doing such a thing, but it got me to thinking. I was still in the middle of a stressful situation with graduate school and I wondered if it was contributing to some of the “secondary” MS symptoms I experienced: memory fog and fatigue.

I was not wrong: stress does lead to flare-ups. Curious enough, having MS (or any chronic illness) can cause stress too. It turns into a vicious cycle: you worry about the disease, the disease acts up, which stresses you out even more.

Exacerbations Induced by Stress

This study, published in 2004, looked at all the studies associated with MS, stress, and exacerbations over the period of thirty-eight years. They found a connection between stress that increases the chances of exacerbations with those diagnosed with MS.

If you have MS and found that your exacerbations or just your normal symptoms get worse when coping with a stressful situation, you aren’t imagining it. I personally found relief in knowing that managing my stress was a way to lower my chances of getting an exacerbation.

I understand that I am in a unique position to be able to manage my disease to lower my chances of an exacerbation. Not all people with MS are able to do so, if at all. There are days where stress gets close to causing an exacerbation, but I am able to recognize what is happening to help slow everything down to avoid it.

The Emotional Toll

Anecdotally, I can say for certain that extremely stressful situations, particularly relating to my personal life, increases my chances of getting an exacerbation. I was shocked at how quickly a flare-up appeared when I was in the middle of an extremely stressful moment and my arm started to go numb. Normally, I wake up with the exacerbation. It doesn’t literally happen before my eyes.

Thankfully, when I resolved the situation, the numbness went away within a day.

What’s most annoying about stress is that I have to plan my life around it. I have to take it into consideration when making major decisions. Will this freak me out? Will this bring on an exacerbation?

As I mentioned in my posts about toxic relationships, I’ve had to learn to be okay with cutting toxic people out of my life because of the problems the relationship induces. It’s discouraging when I have to manage relationships for my MS because there’s always this fear of lacking compassion on my part.

I’ve had to learn how to deal with feeling selfish which is always an uncomfortable place to be in.

Managing my stress is emotionally draining and stressful in itself. Later this week, I will discuss how exactly I manage it. Hint: self-compassion is involved along with learning to no longer care.


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Featured photo credit: Leah Kelley from Pexels