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Reaching Out to Others

I struggle to ask for help. Ash will tell you that he has to drag it out of me when he knows I am struggling. I will get frustrated in those moments and give into his offers for help. Here’s how bad I am: when I was pregnant with Jai, I refused to ask for help even when I needed it. I had something to prove, mainly to myself, that I wasn’t helpless. While being independent isn’t a bad thing, learning to be okay with reaching out to others is equally important.

It’s humbling when I admit I need help. It feels like a weakness when I do. I am not imagining it either, American culture does not encourage asking for help. With the reemergence of the “bootstrap” narrative, it can lead us to feel awkward when we want to ask for help. Individually, Americans are happy to help those around them. But looking on a broader scale, Americans tend to prop up those who find success with minimal help.

This can lead to the rest of us feeling judged anytime we need to get help.

It would be nice to do everything on our own, but with a chronic illness, that’s often impossible.

Chronic Illness & Asking for Help

Having a chronic illness means we will need to ask for help at some point. It may be from family, friends, or healthcare providers. When we ask for help, we are performing an act of self-care.

But getting to the point where we can ask for help is the trick. Often, we’re dealing with an invisible illness. When we reach out for help, and we know we don’t look/act sick, it can feel like we’re being unreasonable. For myself, I feel like I am taking advantage.

If I need help from anyone, I will bumble out justifications why I need the help. I often feel like others won’t understand, or I need to remind them that I have a chronic illness. At times, I feel like I manage my MS so well, that others forget I even have it. So when I need help, I am coming from a place of “they will think I am taking advantage of them,” or “they will think I don’t really need the help.”

I recognize that I am being unfair to others when I take this attitude. I am not trusting that they will understand or that they don’t remember. People remember I have MS when I tell them. It also comes from a space of not believing others when they say, “let me help you.”

Learning to be “Okay” with Help

It is okay to ask for help. For the most part, you know what you are capable of doing. So when there comes a time where you need to reach out to others, do it.

But if you ask for help, show appreciation for whatever help you receive. I have helped others, and sometimes I receive an insult in place of gratitude. You may find it’s a similar situation when you ask for help: you feel vulnerable, and when you do, you may be slow to express your gratitude. But you want to preserve your friendship and be able to ask those people for help again.

Be sure to express your appreciation. Be okay with asking for help. Work on releasing any feelings of vulnerability and look at getting help as a sign of your inner strength.

You Are Not Alone

Coping with a chronic illness is a lonely affair. Your symptoms, your struggles, your victories, they are all internal fights for the most part. These battles become hidden from the outside world. It makes dealing with a chronic illness one of the loneliest journeys you’ll make in your life.

But you are not alone.

There are support groups out there relating to your illness, online and in-person. If you are uncomfortable with the support group dynamic, you can always read blogs and lurk in forums. You can find connections out there and similar stories/struggles to your situation.

The more you reach into these safe spaces for your illness, the more comfortable you should become in recognizing that there is normalcy with your disease. When you normalize your experience, it should be easier to reach out to others to help you. You see that getting help is part of the disease and there’s no shame in doing that.

Help Others Help You

In September, I reflected on the need some people have to help you cope with your illness. You can always say “no” to their help, but sometimes they are insistent, and you do need them.

To be clear, you are under no obligation to allow people to help you if you don’t want it. But sometimes it is easier to give in to the insistence and let them help.

In these scenarios, have a pre-set list of things you are willing to receive help on. It may be driving you to appointments, meeting for social interactions over coffee/tea, or dropping a pre-made meal off. By having an “okay” list to draw from, you won’t compromise your values, and you won’t be left struggling to find something for your friend to do.

It’s hard to accept help from others, but we cannot pretend we are an island. Sometimes it’s essential to reach out to others and let them help us cope with our chronic illness.


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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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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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Changing Physical Appearance with a Chronic Illness

I’ve avoided addressing the elephant in the room since I started the year making personal wellness changes. It’s a sticky subject and somewhat challenging to address when it comes to a chronic illness. Chronic illness and/or disability make any meaningful physical changes difficult (if not impossible). If you are unable to move for more than a few minutes a day, then dedicating that time to exercise is furthest from your mind. Priorities change and addressing your physical appearance can drift towards the bottom of the list.

And that’s okay. Let’s move our intention away from changing our appearance, i.e., losing weight, and refocus on being healthy. Exercising does not need to be about losing weight, but about moving to help your body heal and thrive. Weight loss can become an added bonus, but not a goal.

I started the MS Mommy Blog to be a space where I detail my wellness journey into healthy living and eating. My journey was never about changing my physical appearance, it was strictly about setting a good example to Jai and taking advantage of a positive MRI result. I accepted the following three things: I would never dip below an overweight BMI, never have a body I would be proud of, and never find a source of natural energy.

Because of MS fatigue, I had little desire to go out in the blazing Southern sun and humidity to exercise. Eating was a pleasure I gave myself, especially when I was despondent post-diagnosis. I say all of this because I understand how hard it is to take the initial steps towards making physical changes, but it is possible to start the process no matter your ability levels.

What I am about to discuss is based solely on my personal experience and I am not an expert. Because this is based on anecdotal evidence, your own results will not match mine (and that’s okay). Everyone’s path looks different and that’s okay. Speak with your healthcare professional about your ability levels and any recommendations they might have for you.

Stuck in the Body

When coping with a chronic illness, we are stuck in our bodies.

If you are reading this with a chronic illness, you know this, but I say that for the benefit of those without a chronic illness. It’s easy for outsiders to forget that we are stuck with the body we are in, particularly if our illness is invisible. It’s in those moments we get the harmful comments of: “just get up and exercise,” “it’s in your head,” or “you don’t look sick.”

Getting those comments, and living in a culture where we often ignore invisible illness, makes any desire for change discouraging. We are stuck within numb, shaking, fatigue-ridden, weak bodies that don’t listen no matter how many times we yell at it.

Being stuck in a body is discouraging, especially when you see others chase after their physical goals. Or when you see people squandering their abilities. It’s even more frustrating when you start comparing yourself to others with your particular illness and see how they are able to be active ways you aren’t.

That’s where the first change needs to occur: stop comparing yourself to others. Those with a chronic illness and those without. And you have to stop listening to what people and culture tell you (this includes this blog).

The changes you decide to make must be in your time and in ways that work for you. Do not use this an excuse to not make the changes, you do want to take time to get healthier, but do it without any expectations beyond finding a way to feel better that complements your disease management course.

Determine what you can change & what you can’t

There is so much wisdom in knowing what you can change and what you cannot. There are aspects to our bodies we cannot change unless we had unlimited income, and even that’s limited.

The key is to figure out what is changeable and what you have to accept will be a part of you unless certain circumstances change. Once you know what you can change, then you have to decide how much you want to focus on it and how much of it you’ll put into the “secondary” goal category.

Everyone can lose weight, but do you want that to be a primary goal or something that happens as a side effect to being able to move more?

For some, the idea of losing weight is emotionally painful, so that should not be the first physical goal you make. Instead, if your healthcare professional recommends moving more as a means to help manage your illness, then consider adding a fifteen-minute walk in each day and build up to thirty.

Or if you are advised to cut a particular food from your diet for health reasons, rather than seeing it as a loss, view it as a challenge to figure out how to make alternatives to your favorite foods.

When you make the changes you can and frame them in more manageable ways, you should notice secondary benefits. When I cut sugar from my diet, I was shocked at how much weight I unintentionally lost.

Choosing Health

Focusing on physical appearance and any changes you want to make is discouraging. If you had a weight loss goal for this year, are you still sticking to it? Or have you given up on it entirely?

Revisit your goal if you’ve dropped it and refocus it to be about your health. Don’t think about the pounds you want to lose, but how you want to feel by the end of 2019. Not all of the suggestions below are about weight loss, but about finding ways to adapt to your chronic illness:

  • If your illness prevents you from walking more than five minutes at a time if you can safely do it, why not see if you can add on a minute or two?
  • If your weight prevents you from doing basic chores, why not focus on one chore to do and do it well?
  • If you are mostly bed bound and you want to get more exercise, consider small hand weights or a resistance band for twenty minutes a day.
  • If you want to eat healthier, why not consider dropping one sugary or unhealthy snack in your day? If you find you’re hungry, consider adding in water or some other healthy alternative.

All of these changes are small, and if you are getting started, that’s all they need to be. For myself, I found that small changes snowball into bigger ones because I was encouraged by my results to keep moving forward.

Learning to Love your Body

Before you reach your personal health goals, the first thing you need to work on doing is loving your body as it is, warts and all. This includes accepting the chronic illness that inhabits your body. You don’t have to like that it’s there, but just accept that it’s a part of you and you need to adapt around it.

When you take the time to accept your body as it currently is, in this very moment, it takes the pressure off of yourself. When you don’t meet your goals for the day, you can say to yourself “that’s okay, there’s always tomorrow and these things take time.”

Don’t take this as an opportunity to slack off, you still want to work towards making healthy changes, but you don’t need to put as much pressure on yourself that you might feel you need.

Additionally, when you learn to love your body in its current state, you no longer seek validation from outside sources. We look to media and others as opportunities to compare and rarely do we measure up. If we have friends and family influencing our decisions because of a snarky response, we may get sidetracked.

Rather, say to yourself: I am doing this for me, I am doing this to be healthy, and I am doing this because I want to make a change. Then mentally give the middle finger to those who want to keep you down.


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