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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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Featured photo credit: Jennifer Burk on Unsplash

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Redefining the Internal Narrative

When I recognized that I was addicted to my anger, I realized it was sustained by my internal narrative. I used a lot of nasty words to describe myself during my mental arguments. As Gary John Bishop said in his book Unf*ck Yourself, we are constantly having internal conversations whether we realize it or not. There was no escape from this negative internal narrative. When I recognized the hatred being spewed at myself non-stop, I knew I needed to focus on changing my internal narrative.

We are dealing with a chronic illness, so we are busy fighting/managing our bodies. For some of us, we are also fighting our minds which makes our journey to wellness that much harder. When our bodies betray us via exacerbations or normal symptoms, it’s easy for our negative internal narrative to rise up and leave us wanting to give up. I wanted to share my experience with my negative internal narrative and how it led to moments of self-defeat. At the end of this post, you’ll find more detailed suggestions for dealing with your own narrative.

Content warning: there will be talk about self-hatred and self-destructive behaviors. In the section “Using the word ‘Hate'” you will find adult language as part of negative self-talk. If you find this discussion triggering, please do not read any further. If you or someone you know engages in self-harm, please know that you can get help

When the Internal Narrative is Negative

From childhood, I had a negative internal narrative. I was taught from the very beginning that I was fundamentally flawed as a person. Every time I did something “wrong,” it had to do with me being irredeemably bad. Thoughts were not separate from actions, so if I had a negative thought it was the same as though I acted out on it.

As a child, I learned to mentally flog myself. While I was taught that I had the means to get out of my “badness,” I still had to follow a strict code of behaviors, thoughts, and actions. Deviation from that code meant I regressed into “badness,” and I was to prevent that at all cost. Mentally berating myself helped me manage any external conversations about my behavior because I pre-empted the impetus of the discussion. I took the power out of the other side by mentally hating myself and regained a sense of control.

What I was doing in those moments was setting myself up for a lifetime of self-hatred that I am just now starting to unlearn and heal from.

An example: as a child on the playground, someone would say something mean to me. If I had a thought of “well, I hope you fall over and hurt yourself” as a means of coping with my hurt feelings, this was considered a moment of being naughty. I wished harm on someone, and this was wrong by the code taught to me.

Because I wasn’t allowed to have a “bad” thought, I had no way to manage my hurt feelings. Desiring for a bully to get hurt, provided I didn’t actually retaliate, wasn’t a bad thing. It was a healthy way to acknowledge they hurt me and I wanted them to feel the hurt back. It may have naturally led to understanding why the bully was mean: they were already hurting and taking their pain out on me.

Instead, when they said something mean and I thought about them getting hurt; I realized that my desire to see them get hurt was “wrong;” and therefore, the bully was right about me: I was whatever horrible thing they said I was. So it wasn’t just the bully picking on me, I was picking on myself. If I told anyone about the bully and my thoughts immediately after the incident, it was reinforced that these thoughts were wrong.

The internal voice I developed over my childhood was angry and reflected the judgments I heard by adults. Often the judgments weren’t directed at me, but at others in similar situations as myself. I would compare myself to the people in these judgment scenarios and recognize a lot of similarities in myself: “that person claims to be following a specific code of conduct, but look what they are doing. It’s so hypocritical.”

Oh, I would think to myself. I always wanted to do that thing they are doing. I guess that makes me bad because I feel/act that way in private. In those moments, my shame increased and my internal voice would get louder about how bad I was as a person.

This angry, negative internal narrative turned me into a bitter, anxious, and stressed-out person. I burnt out fast. This lead to a deep depression in my early twenties where I struggled to get anything done in my life. Every missed opportunity was not a learning experience but a personal failure. Every failure was fuel to my “I feel worthless” fire. Rather than persevering in the face of self-doubt and failure, I gave in and wallowed in the thoughts of how I was a bad person.

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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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Being Honest with Yourself and Your Chronic Illness

Self-reflection is worthless if you can’t be honest with your self. Speaking from personal experience, both through observing others and myself, humans are good at over-inflating their sense of importance and perception, and that rarely matches with reality. Add in chronic illness and it widens the gap between perception and reality: it’s easy to not be honest with yourself and how your chronic illness impacts your life. This gap can prevent you from making important life changes.

How so?

There are two ways it will go if you aren’t honest with yourself: one, you set your sights on something without considering your illness and your symptoms will prevent you from achieving that goal; and two, you don’t think you can do something because of your illness and it stops you from trying.

Growing up I had a family member who leaned into their illnesses (some real, many manufactured) to keep themselves from ever achieving their goals. They would get so close and then self-sabotage. Often the excuse was, “I can’t do x because my illness is preventing me from doing so.” Yet, they would be outside pulling weeds for hours at a time with no physical complaints.

They may have been honest with themselves about what they were capable of and weren’t honest with us. That’s a separate issue altogether.

I sincerely believe this family member, if they weren’t honest with themselves, would have taken over a chunk New England with their business. They had so much ambition, energy, and drive that they were the only one preventing themselves from seeing personal success.

It’s important to sit down and be honest with what your abilities are, what they really are, to see what you can do. If you aren’t honest, you will only find yourself discouraged and get in the way of your own success.

Start with Honesty

In the late ’70s/early ’80s, singer Charlene sang about a woman lamenting about the decisions she made in her life. After experiencing life in ways we only dream of, the “speaker” realizes too late that she never experienced the life she truly wanted. “I’ve Never Been to Me,” is one of those sappy songs from a different era (and is rather problematic for a modern audience), but I think the message stands. It’s wonderful to have a “perfect” life on the outside but if you aren’t honest with what you want, you will never find meaningful success.

Admittedly, it’s one of those easy-listening ballads that is very much an emotional guilty pleasure.

We can fantasize about the perfect life because it’s what we think we want, but it may not be what we need. There are things that we think we want in our life, things we think will make us happy – they will be our paradise, and perhaps if we get them, we will be satisfied.

And for a lucky few, that may bring about satisfaction. Winning the lottery may solve our money problems, but there usually is a whole host of other issues that pop up we don’t think about that spoils our happiness. What if our paradise is something more ordinary that we aren’t willing to admit to ourselves? That’s where you have to get to a place of personal honesty with yourself.

The Problematic Lie

Have you ever tried to lose weight through counting calories?

How successful were you? If you found success immediately, you may not be able to identify with what I am about to tell you. If you weren’t successful, you already know where this is going.

Even to this day, I struggle to lose weight via rigorous calorie counting. The idea is this: I am given a set amount of calories I can consume in a day. That number can go up if I exercise or stay the same if I do not. This set of calories will be just enough to keep my body sustained and healthy but allow it to lose weight over a specific period of time.

Simple, right?

Well, if you are like me, no. It isn’t simple and this is why: I lie. I lie to my calorie counting apps and more importantly, I lie to myself.

I will fudge the numbers a bit. I may count one less strawberry or inaccurate “estimate” my food amounts. I may overestimate the exact amount of exercise I do. And what happens when I do this? I don’t lose weight.

Why? Because I am lying to myself about what I am doing. Sometimes it’s intentional and other times it was to justify that extra late night sweet. But when I actually became honest with myself and what I was doing, I found I lost the weight.

This is just a lengthy way of saying, if you are lying to yourself about what you can and can’t do, i.e. I can’t do something because of x, then you are only hurting yourself. Or if you think you can do something, but you haven’t really self-assessed, you’ll only get frustrated.

Lying to yourself is problematic and will lead to you not finding success in what you want to do for personal wellness.

Being Honest with Yourself and Your Chronic Illness

The short answer to this post is: be honest with yourself. Be frank with your chronic illness. Be straightforward with your abilities. And finally, be realistic with your personal goals.

Yes, your illness may have taken away your mobility. You may not be spry like you once were. But has it completely prevented you from trying something new? Have you had to learn how to adjust to manage the illness? So why not adjust to try some dream of yours.

I’ve said this at least one other time on the blog: I wanted to be a writer since I was a child. I wanted to write fiction novels like Anne Shirley from Anne of Green Gables, so when Ash pointed out that I was writing for a living I didn’t believe him. I assumed my MS would prevent me from putting a cohesive novel together, but he was right. I’ve achieved my childhood dream, it just did not take the form I expected.

Who is to say that I don’t eventually write a fiction novel of sorts?

The point is, my MS did not prevent me from achieving my dreams. I had to be honest with what I was able to do and what I did to find success in some capacity.

If you’ve been easily discouraged in your goals or found that you never complete your resolutions, consider taking a few moments to ask yourself: have I been honest with myself and my abilities? Have the goals I created unreasonable for me to attain at this point (if ever)? Have I used my illness as an excuse to prevent me from making some type of change? Why is that?

Just take a few moments to sit down and see what answers you come up with, then loop back around to my self-reflection posts from last week. See what answers you come up with and where they might take you.


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Featured photo credit: Zoltan Tasi on Unsplash


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Become Your Ideal Self (Despite a Chronic Illness)

I have a bad habit of being repetitive and this blog is no exception. It’s not a bad habit as much as it’s ingrained from my years of teaching. I found that when I explained the same concept several different ways students had a higher chance of understanding and committing it to memory. It was important that they understood a fundamental point, so I wanted to do everything I could to help them. The same goes for this year’s blog theme: you’re here because you want to become your ideal self while dealing with a chronic illness, so I am going to hit similar concepts multiple times.

We have looped back around to working on becoming your ideal self, but this time we are hitting it with self-reflection in mind. I’ve broken down some key concepts I noticed in my own journey for today to help you work towards your personal goals. You’ll see a lot of repetition to previous blog posts and that’s intentional: we’ve been building on concepts this year to make the process easier to manage.

5 “Simple” Steps to Achieve Success

I dislike clickbait articles that say they can solve my problems if I follow specific steps. Life is never something that can break down in a series of steps. Sure, the steps can get you started, but it’s never that simple.

I am basically painting myself into a corner if you saw this particular section header.

The steps I am offering below aren’t actually simple, and they aren’t the limit. There are many, many other steps you’ll need to consider, but these steps are ones that are there to get you started. And when you are on your personal journey, you have to start somewhere.

So what are those steps?

  1. Selfishness
  2. Self-Reflect
  3. Self-Control
  4. Self-Compassion
  5. Self-Assess

Yes, there is a theme. It’s all about yourself. Because it’s a personal journey, it absolutely has to be about yourself.

You may have a wonderful support network, but even in your illness, you are alone. You are alone in your symptoms, you are alone in coping, you are alone in the management. You may have shoulders to cry on, but no one KNOWS your experience. No one KNOWS what you are going through because no one has the perspective you do.

Let’s break each step down a little bit further.

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