The Perfect Schedule by Camellia Phillips

I am a sucker for productivity audiobooks. I love listening to stories of how people have found the perfect system for creating better habits, finding better focus, or harnessing creativity.

Of course, I imagine myself in these stories. I envision days of productivity in the mornings, exercise in the afternoon, and fun in the evenings. Inspired, I pull out my trusty index cards and start mapping out the perfect schedule. I’ll get up at 6:30 am, then I’ll do 10 minutes of stretching for my perpetual neck pain, then I’ll read and get writing done and…

And then I wake up with a migraine. Or the seemingly permanent pinched nerve in my neck keeps me up late. My head is foggy. I’m exhausted. So instead of seizing the day, I stagger through it.

Once or twice, I have managed to achieve my perfect schedule for one or two days. But by day three, it inevitably runs me into the ground, and I spend a day in bed.

My perfect schedule is just a fantasy. And yet I cling to that fantasy. I keep trying again and again. But why?

The Allure of the Perfect Schedule

Do I think the perfect schedule will make my chronic illnesses less disabling?

Do I believe that “productivity” is the end-all, be-all of life?

Do I really think my body—the one living with pain and disability that is incredibly unpredictable—can fit into a schedule?

I’ve been pondering these questions a lot lately.

After 20 years of working full-time salaried jobs in the nonprofit sector, I’m now happily self-employed. For the first time in my adult life, I have the power to set my own schedule. I decide how many clients I take on and how many hours I work. I could even choose to fire a client and still be fine!  

But even though I have intentionally created this freedom and flexibility, I still find myself trying to design the perfect schedule. I cannot let go of the idea that I could be doing more.

I suspect I am not alone. Those of us with chronic illness understand that, for every choice, there is always a price.

Our energy is finite. Our bodies rebel when we try to do too much.

I’ve long known that one of my biggest migraine triggers is finishing a deadline. It’s not the stress that triggers the migraine. It’s post-stress. I recently discovered this is called a “let down” headache. 

But even too much fun can be a trigger. Last Saturday, I woke up with a migraine after spending an evening laughing with friends and their children. I wasn’t even up late. I didn’t drink alcohol or eat any trigger foods. But I’d smiled so much my face hurt. In the end, a migraine seemed a fair price to pay for that evening.  

Routines vs Schedules

Some of the most common advice for those living with chronic migraines is to keep a steady sleep schedule. We are supposed to make and stick to a consistent daily routine. We must eat well, get gentle exercise, and minimize stress.  

In other words, we must find the optimal way to structure our days and the optimal timing for our habits.

Yet, as I was hashing out my millionth version of the perfect schedule—one that would balance client work, personal writing, and rest and self-care—a friend suggested something that made me stop and rethink the whole endeavor.

She asked: “What if there is no perfect schedule?”

I knew the answer immediately. There is no perfect schedule, at least not for me.

My chronic illnesses are unpredictable. I can manage triggers, but I cannot control or confine my illnesses. I can only choose how I live with them.

Having a schedule implies control and rigidness. It suggests things must be done at a certain time and in a certain way.

In contrast, a routine implies a living practice. It suggests specific things to do but provides flexibility for when and how you do them.

Routines evolve. Routines adapt. Routines are not schedules.

Maybe, then, it’s time to put away the search for the perfect schedule. It’s time to stop “optimizing” my time and instead accept that each day will be different.

Some days will be great! And I can celebrate those. But I can’t reproduce them on command. That is the hardest part to accept. I don’t think I’m fully there yet not fully accepting of that reality. But at least I am aware of the real challenge ahead.

Camellia Phillips has loved writing since first grade, back in the days of graphite-stained fingers. Since then, her short fiction for children and adults has appeared in The Caterpillar, CALYX Journal, and cream city review, and her nonfiction has appeared in The Mighty, Spoonie Journal, The Chopping Blog, and La Dolce Vita Lifestyle Magazine. Her middle grade manuscript, Rat, Jack, and the Impossible Job, won Scribbler’s first-ever Manuscript Contest in 2022 and the Pacific Northwest Writers Association Literary Contest in 2021. She holds an MFA in creative writing from The New School. In 2019, she was selected as a 92Y Women inPower Fellow, a program for rising women leaders in New York City, but today she lives in a small village in Sicily with her author spouse. Camellia blogs about the reality of living and working with chronic illness—and having awesome adventures in the process—over at www.camelliawrites.com and www.ahouseinsicily.com.  

Finding New Ways to Foster Friendships By Camellia Phillips

When you live with chronic illness, friendships can be a blessing and a curse. Friends have buoyed my spirits in the darkest of times. But not every friend understands the reality of living with chronic illness.

Life with chronic illness is unpredictable. I live with chronic migraines and nerve pain. I never know when I’m going to have a flare. I can’t predict good days and bad days. I can do everything “right”—get to bed on time, get good sleep, exercise, eat whole foods—and still wake up incapacitated.

Planning can be an exercise in disappointment. If I buy concert tickets for a date six months from now, there’s a 50/50 chance I’ll be stuck home in bed. My migraines don’t care if it’s a friend’s birthday party or a baby shower or any other important or fun event.

If I ignore the pain and neurological symptoms and go out anyway, the next day will inevitably be even worse. “Pushing through” can easily double, triple, or even quadruple the length and severity of flares for me. Even if I’m not in pain at the start, the simple act of going out for an extended activity can leave me exhausted and in pain for days.

As Irene Roth shared recently, for all these reasons and more, chronic illness can be very isolating.

But during the forced isolation of the COVID-19 pandemic, I realized there was more than one way to be a good friend.

In fact, I nurtured and built some of my valuable friendships without ever leaving my little apartment.  

Messaging is for more than just making plans.

At the start of the pandemic lockdowns, it seemed like everyone got on Zoom. From happy hours to casual hangouts, people hopped on Zoom for a bit of human connection. I’m not a big fan of large group Zoom calls. Looking at a screen can be hard when I have a migraine and can even reignite a migraine that is on its way out.

For me, text messaging (using text, WhatsApp, Viber, etc.) is the easiest way to reach out to friends when I need support—and to provide support to friends who need it. Texting doesn’t require looking at a screen for long. Plus, you can send personal voice or video messages.

Unlike sitting in a coffee shop, I can reply when I am able. I don’t have to “perform” wellness.

On messaging apps, I can be funny or kind or silly or frustrated. My friends can complain about an extra bad day, and I can offer comfort and compassion. I can be the kind of friend who is steadfast and reliable, a friend who shows up—even if I’m stuck in bed.

Cultivating global friendships.

The collective move to “virtual” friendships during the early days of the pandemic also inspired me to connect with old friends who had moved away and make new friends in far-flung places.

One friend I’d lost touch with had moved to New Zealand. Pre-pandemic, it seemed like an impossible distance to stay in touch. But somehow, we started chatting online while we were both shut up in our apartments. Today, some three years later, we often message each other daily! We help each other sort through priorities and set goals and create accountability. All via text and voice messaging.

I also met people through online communities and cultivated new friendships. For example, I took a course about writing articles for children run by Irene Roth. With Irene’s support, I started writing about life with chronic illness for the first time. Inspired, I joined Irene’s online writing group and mentorship program. As Irene shared her own experiences with chronic illness, we started to grow a friendship that has been an incredible source of inspiration. And we still have not met in person!

Creating focused and supportive communities.

One of the most amazing things that happened during the pandemic was that I connected with a group of writers online. At first, there were a couple dozen people in the group. But pretty quickly we winnowed down to a core set of 4-6 really active people. For two years, four of us met every Saturday and Sunday morning to talk about writing and to do writing sprints.

One of the coolest parts: none of us lived in the same time zone. We were in NYC, Tennessee, Arizona, Brazil, and Canada! Since I moved to a new time zone, it’s been hard to join every single week, though I hope to get our sessions back on my regular schedule soon.

When I was starting my consulting business, one of my writing group friends was also rethinking her career at the same time. We became business buddies, checking in weekly about what we’re trying and learning in our new careers. The best part? She’s in Brazil and I’m now in Italy and our connection is still going strong!  

Feeling empowered to say no.

With chronic illness, there is always a price. When I wasn’t able to “go out with friends” for months on end, I realized just how hard going out actually is on my body.  And I’m not talking about drinking. I gave up alcohol more than 15 years ago because it triggers instant migraines.

Even seemingly simple things like sitting in a restaurant or chatting after a literary reading or even having fun game night at a friend’s house—they all take their toll. For many years, I’d ignored that toll because I thought it was the price of having friendships. 

As we emerged from the acute phase of the pandemic, for the first time in my life, I started to say no to social invites. Instead, I suggested other activities that were better for my body, like a phone call or an afternoon walk in the park.

Sure, with all these changes, a few of my more casual friendships fell away. But the ones that endured were the ones that mattered.

It’s so easy to fall into thinking that friendship and community only happen when we’re sitting in a room together or going to some event. But that’s not the case anymore—which is a blessing for many of us with chronic illness.

Camellia Phillips has loved writing since first grade, back in the days of graphite-stained fingers. Since then, her short fiction for children and adults has appeared in The Caterpillar, CALYX Journal, and cream city review, and her nonfiction has appeared in The Mighty, Spoonie Journal, The Chopping Blog, and La Dolce Vita Lifestyle Magazine. Her middle grade manuscript, Rat, Jack, and the Impossible Job, won Scribbler’s first-ever Manuscript Contest in 2022 and the Pacific Northwest Writers Association Literary Contest in 2021. She holds an MFA in creative writing from The New School. In 2019, she was selected as a 92Y Women inPower Fellow, a program for rising women leaders in New York City, but today she lives in a small village in Sicily with her author spouse. Camellia blogs about the reality of living and working with chronic illness—and having awesome adventures in the process—over at www.camelliawrites.com and www.ahouseinsicily.com.  

Focus on the Present

Mindfulness is the process of bringing our attention to what’s occurring in the present moment. When living with a chronic illness, it’s hard to know how mindfulness can help one feel better about oneself and live a better quality of life.

   When we have a chronic illness, it’s so easy to get caught up in future possibilities that may never happen, such as I’ll be in a wheelchair soon, or I won’t be able to work. There are less drastic what-ifs too such as, what if I don’t feel like getting out of bed tomorrow, or what if I can’t go grocery shopping because I feel awful?

   All of such what-ifs can set us up for undue frustration and even anxiety if it’s unmonitored. Mindfulness helps us return to the present. Most of our what-if statements are not correct. The worse case scenario doesn’t always happen, if ever.

   Here are some benefits to being mindful.

• You’ll eliminate unnecessary worries. This can help prevent anxiety and overwhelm.

• You’ll boost your self-esteem by increasing your self-awareness. You’ll realize that you’re okay in this moment, and this is the only moment that really counts.

• You’ll learn to stay present so that you can absorb more knowledge and improve skills.

Given these benefits, take steps to be more mindful more often. This will help energize you and also keep you positive and living a good quality of life.

But how can I be more mindful, you ask?  Well, here are a few ways to consider.

*1. Focus on your breathing for a few minutes. This can help you return to your surroundings.

*2. Try setting a meditation practice. There are plenty of mindfulness meditations, such as yoga, qigong, and body scan meditations, as well as progressive muscle relaxation.

*3. Limit your time on social media. This can distract your attention from what’s most important.

*4. Stay connected to your body. Do a short body scan or just see how your body is doing. Listen to what your body is telling you.

*5. Keep a gratitude journal. Identify positive parts of your day. Be sure to write them down.

Every moment in your life has a purpose, even if you have a chronic illness. You just have to slow down to become aware of it. But living with a chronic illness already slows us down. So, we should see slowing down as an invitation to be more mindful.

I hope you will try being more mindful. It will completely change your life.

Try it!

Irene Roth

What’s wrong with slowing down?

   There is nothing intrinsically wrong for the chronically ill to slow down except it’s not something we’re used to. It can be soul altering when we realize we can’t do as much we did before. Not only will we no longer get as much done every day, but we’ll always feel less capable of completing our goals because we’ll feel tired and in pain.

   Therefore, becoming chronically ill forces us to re-evaluate our priorities. This initially can make us feel less capable than we were. Remember, we can’t change our disabilities, pain, or fatigue, but we can change how we perceive and inter-relate with them. In other words, we can change how we perceive our pain, fatigue, and even disabilities.

   Thus, to change our perspective towards our chronic illness, we must realize that we need to slow down for our overall health and well-being. What’s more, there are benefits to slowing down.

Here are a few to consider:

• You won’t be as likely to be involved in a motor vehicle accident.
• You’ll get to appointments earlier.
• You’ll experience less stress.
• You’ll enjoy life more.
• You’ll pause to smell the roses.
• You’ll experience moments of peace.
• You’ll see and experience all the beauty surrounding you.

Given all these benefits, why don’t we embrace it? I think part of it is cultural. Given our culture of multi-tasking, we may feel inadequate when we don’t measure up to others. However, this type of comparison can undermine our self-confidence. This is because continuously comparing yourself to others is a waste of time, and energy none of us are exactly the same. This is especially true when we’ve become chronically ill. Further, we all experience chronic illness differently. So, comparing ourselves to others is not only a waste of time, but it can make us feel worse.

   The second difficulty with slowing down is that we may think that we will accomplish less. But this isn’t necessarily the case. We may actually get more done if we take regular rest breaks and slow down. Further, we’ll have more energy. Slowing down can help us feel healthier, happier, and more in control of our lives.

   The third thing difficulty with slowing down is that we’ll have to get use to not pleasing everyone. We can’t anyway. So why try? If you feel you can’t do something, just say no. Further, make sure you stand true by your no. Don’t cave [in]. Your friends and family must learn to honor your limits. And they will if they are true friends and really care about your health and well-being. However, you’ll have to assert your limits.

   If you are not naturally assertive, you may want to take an online course to improve your skills. Further, there are a lot of self-help books out there about assertiveness and standing your ground. Try reading some of them, those that especially resonate with you. To learn how to say no, try to practise it in front of a mirror when you are relaxed and alone. Then, when you get into a tricky situation where you must assert yourself, you’ll be more likely to do so.

   Remember, slowing down does not necessarily mean you’re inadequate. However, it does mean you must take concrete steps to take care of yourself by making your physical and psychological needs a priority. Make time to rest, meditate, or take a few deep breaths.

   Over time, this attitude of self-care and self-compassion will improve your self-esteem. Just start asserting your needs regularly. Take steps to make time for yourself. In the process, your self-confidence and self-esteem will strengthen. Further, the more often you stand up for yourself, the stronger and more confident you will feel. 

Don’t hesitate to slow down to live a good quality of life with chronic illness.

Irene Roth

Connecting Through Chronicity: Strategies for Combating Isolation in the Face of Illness

There’s no doubt, living with chronic illness opens up to a lot of physical, psychological and social challenges. Not only do we experience pain and fatigue because of our chronic illness. But other people who aren’t chronically ill may not understand what we’re going through.

This can make it hard for us to cope and have a ‘normal’ life, one that’s imbued with energy and vitality, leading to stress and overwhelm. We can feel unheard and it may feel like we’re all alone in the world because of our chronic illness and low energy that results. It can be hard to function when we see everyone is hurrying past us. Yet, we can hardly get through the day without pain and extreme fatigue.

When we feel less than others, a feeling of isolation and loneliness follows. People deal with loneliness very differently, depending on their personality and character. Some of us hate being alone and avoid it at all costs. Some others can tolerate being alone for a while. Still others set-up times for solitude regularly. And then at the other extreme, there are people who thrive on being alone so that they can replenish and nourish themselves. They are usually homebodies and they love their own company. Such people are in the minority. But still they exist.

Regardless of where we are on this social-aloneness- spectrum, this feeling of isolation and loneliness can be a real problem for the chronically ill. This feeling can cause undue stress and psychological pain. Some of us may even feel that other people don’t want to be around us because we can’t measure up.

This article is for people who either hate being alone, or tolerate it in small amounts. I believe that most people fit into this psychological framework. Therefore, I’ll offer a few tips on how to cope with being alone for those of us who are convinced that being alone is awful.

Here are a few tips to consider:

1. Realize that being alone isn’t necessarily bad. Our culture always seems to be socializing. In all the commercials on TV, people are usually socializing, eating some kind of takeout food, and smiling ear to ear. If we believe this is how we should also live, we will feel empty and left out because this isn’t the reality for the chronically ill.

Socializing all the time is definitely over-rated. There are people who love socializing and who always are actively engaged with others. Then we become chronically ill and we can’t do as much as many people. This can make us feel less than others.  

Further, if you have friends who don’t live with a chronic illness, they probably won’t understand if you have to take the evening off to rest. Eventually, you’ll have to find new friends, ones who understand you or at least are compassionate towards what you are going through.

You may feel alone for a while. And that’s okay. Take some time to journal, or find a few new hobbies. You may want to join an online group of people who are going through what you are. There are quite a few online groups out there.

So, you may have to look at your situation through a self-compassionate lens, not one created by our culture, but one that you create for yourself by accepting where you are, and recreating a life for yourself that’s in line with your new reality.

**2. Honor your new reality. Having a chronic illness can force you to rethink what’s most important. You may have to become countercultural. Many of us believe that if we’re alone, we’re naturally lonely. But this doesn’t necessarily have to be the case. Sometimes we may need to cultivate solitude. It is because it’ll help us feel less stressed.

Some individuals who live with chronic illness, such as fibromyalgia, for example, need pockets of peace and quiet regularly in order to function well. Noise and busyness may actually cause us to feel more frustrated, stressed, and even overwhelmed. Therefore, we may have to cultivate times of peace and quiet on a daily. During such times, try to do quiet things, such as read, meditate, or just do nothing.

Therefore, take the time to listen to what your heart is saying to you. If you need to have a quiet evening at home, sitting by the fireplace, sipping some herbal tea and reading a book, then make sure to make space for that. Or you may want to take a bubble bath and go to bed early. You’ll feel better tomorrow.

**3. Don’t compare yourself to others. Many chronically ill struggle to create a new life for themselves. They feel out of place because we can’t measure up to the societal yardstick of what we ‘should’ be doing and how they ‘should’ be living. Could this be because we’re always comparing ourselves to others?

If we look at how the media is encouraging us to live, it basically makes no sense, not even for healthy people. We are continually tempted to eat food that is filled with fat and sugar, some of which isn’t even real food. Commercials show people sitting in front of large TV screens watching sports, binging on junk food and drinking alcohol for hours on end. This is an unhealthy picture of how we should live.

Fitting in is always a problem for the chronically ill. We want to fit in, regardless of what it costs us. But sometimes the price is high. Before we push ourselves past our limits, we should realize that this attitude won’t help us to feel better. Instead, we’ll feel even more isolated.

Therefore, we must reassess our lifestyle so that it is in line with our chronic illness. For example, we must determine how much time we need to be social and when we need solitude, to do some of the things we really want to do, or just to rest.

We’re not automatons. Just because we’re living with a chronic illness doesn’t mean that we have to be sucked into a negative mire of loneliness. We can create a life that is healthy, sane, and one which will help us live the healthiest and most fulfilling life.

Rethink Your Life’s Priorities

 Let’s face it, living with a chronic illness is hard. There are days when you won’t feel like doing much because you won’t even feel like getting out of bed. Regardless of uphill battle, a better life awaits if we pace ourselves and redefine our priorities in light of living with a chronic illness.

   As you change your mindset, you’ll have to proactively deal with the physical and mental symptoms of your chronic illness. This requires that you work on developing a positive mindset when you’re tired and stressed. When you get to this stage, you have come full circle from your diagnosis to acceptance. You will also be ready to take advice from doctors, physiotherapists, and counsellors about how to realign your life with your new reality.

   Notice I said you should try to realign your life with your new reality of living with a chronic illness. This means that you have to rethink how you do some of the things you do in your life and reframe them. This is where changing your mindset comes in. This doesn’t mean that you must cancel your life or put it on hold. But it may mean that you have to re-prioritize things so that you focus on doing the most important ones first.

So, what does it mean to realign your life with your illness? 

Here are a few things to consider.

• Decide what is truly important to you and pursue only these things. Declutter unimportant things from your life.
• Take frequent or regular rest breaks during the day and make them a part of your routine.
• Realize you can’t do everything at once nor please everyone. So, take care of yourself first and foremost.
• Take the time to come to terms with your illness. This means taking the time to become aware of what it means to live well, despite it.

By taking these steps, you will feel less frustrated and accepting of your new reality. Making peace with it is so important to or health and well-being.

Realize you’re not alone

There are millions of people living with arthritis, or some other chronic condition. Some people may be even younger than you are. This realization can put your situation into perspective.

For fifteen years, I presented workshops for The Arthritis Society on different aspects of managing the symptoms of arthritis and living a healthy life. I met a lot of younger people who were living with arthritis or some other debilitating chronic condition. One of my youngest participants was only 24 years old. She helped me put my own diagnosis at the age of 40 into perspective.

Further, many individuals diagnosed with some type of chronic illness struggle with pain, fatigue, and stiffness upon waking. So, as far as arthritis sufferers are concerned, we mostly experience similar realities. We struggle, have bad days and better days, and have difficulty sleeping. This is all part of living with a chronic condition. When we’re experiencing a lot of pain on a given day, living well can be hard.

But it is in our best interest to do so. Not only will our life be easier, but we won’t feel as overwhelmed and frustrated. And if we stress less, we will probably experience less pain and fatigue. So, it’s a win-win for us.

We just have to create a winning blueprint for our lives, one that doesn’t compare our lives to the way they used to be before the onset of chronic illness. Instead, we must create a life that charts a new path in our lives by honoring and accepting our life as it is now.

Strategies for Cultivating Fulfillment with Chronic Illness

Living with a chronic illness requires a unique approach to life, one that transcends the boundaries of health challenges and embraces the possibilities for a fulfilling existence.

In this blog, I will delve into some practical strategies and mindsets that empower individuals with chronic illnesses not just to survive but to thrive in their pursuit of a meaningful life.

Here are a few to consider.

Foster Resilience Through Connection

The journey with chronic illness can be isolating, but building and maintaining connections is paramount. Strengthening relationships with friends, family, and support groups creates a safety net of understanding and compassion. Sharing experiences, fears, and triumphs with others who face similar challenges fosters a sense of belonging and resilience.

Empower the Mind through Mind-Body Techniques

The mind plays a crucial role in shaping our experiences, and employing mind-body techniques can be transformative for those with chronic illnesses.

Practices such as meditation, deep breathing exercises, and mindfulness can help manage stress, alleviate symptoms, and enhance overall well-being. By focusing on the present moment, individuals can find peace and purpose amid health challenges.

Create a Personalized Wellness Plan

Every chronic illness is unique, requiring a tailored approach to wellness. Collaborating with healthcare professionals to create a personalized wellness plan ensures that treatment aligns with individual needs and goals. This may involve a combination of traditional medicine, alternative therapies, and lifestyle modifications to address physical, emotional, and spiritual dimensions of health.

Adapt and Redefine Success

Living a fulfilled life with chronic illness often involves redefining traditional notions of success. Acknowledging that success is a personal journey, individuals can set and achieve realistic goals that align with their abilities and values. Adapting to changing circumstances allows for a more fluid and dynamic approach to personal growth and accomplishment.

Make Time for Creative Expression as a Source of Fulfillment

Engaging in creative pursuits can be a powerful outlet for self-expression and fulfillment. Whether through writing, art, music, or other forms of creativity, individuals can channel their emotions and experiences into meaningful and cathartic expressions. Creative endeavors provide a sense of purpose and contribute to a positive and empowered self-identity.

Educate and Advocate for Yourself

Understanding the intricacies of one’s chronic illness is empowering. By becoming informed about their condition, individuals can actively participate in decision-making processes regarding their health. Additionally, self-advocacy involves communicating needs and preferences effectively, fostering a collaborative relationship with healthcare providers, and ensuring that care is aligned with personal values and goals.

Find Joy in Everyday Moments

Living a fulfilled life involves recognizing and savoring joy in everyday moments. Cultivating gratitude for the small pleasures in life, such as a beautiful sunset, a heartfelt conversation, or a shared laugh, can significantly contribute to overall well-being. Mindfully embracing these moments creates a positive mindset that transcends the challenges posed by chronic illness.

Create Strategic Goal Setting for Long-Term Fulfillment

Strategic goal setting involves a balance between ambition and realism. By breaking down larger objectives into manageable steps, individuals can steadily work towards their aspirations. This approach not only ensures progress but also allows for adjustments based on health fluctuations. The key is to maintain a forward-thinking perspective while embracing flexibility in the pursuit of long-term fulfillment.

Most of us believe that it can be hard to cope, let alone thrive, with chronic illness. However, this isn’t merely a distant possibility; it is an achievable reality.

By fostering resilience through connection, empowering the mind, crafting personalized wellness plans, redefining success, embracing creative expression, advocating for oneself, finding joy in everyday moments, and setting strategic goals, individuals can cultivate a fulfilling and purposeful life.

Each step taken, no matter how small, contributes to a resilient, empowered, and enriched existence despite the challenges posed by chronic health conditions.

Try it!

Irene Roth

Revise the Negative Messages You Say to Yourself



We all say so many negative things to ourselves every day. This is especially the case if we have osteoarthritis or any chronic illness. We don’t feel our best. We may even experience brain fog or debilitating fatigue. These negative experiences can impact how we feel about ourselves.

I can’t go on like this!

What has my life become?

I’ll be in a wheelchair in a few years.

I can’t do anything anymore!

I feel sooooo unwell!

   If you start your day saying negative things to yourself repeatedly, you’ll set yourself up for a difficult day. This is because your negative feelings, emotions, and moods will affect how you function and cope. In other words, what you say to yourself repeatedly can become a self-fulfilling prophecy. So, don’t keep telling yourself you’re going to get worse. It’s hard enough living with the physical and psychological effects of your chronic condition without negative self-talk. Ultimately, this can have a negative impact on your self-esteem, if you’re not careful.

   It’s easy to feel sorry for yourself and not know how to move out of this negative mindset. Living with chronic conditions is hard. But if you keep dwelling on all the negative aspects of living with your chronic conditions, you’ll get sucked into a vortex of negativity to the point of feeling where you will feel stuck. You may even feel it’s unfair that you’re constantly experiencing so much pain and fatigue. I get it. It can be very hard to create a life that’s positive and self-nourishing.  But dwelling on your negative thoughts won’t help you either. You need to create a balanced approach.

BE PROACTIVE

   Ultimately, we must choose how we react to our pain. We can either be proactive or reactive. In other words, you can either do something proactive about what you can control about your chronic condition and symptoms or do nothing but enter the realm of negative emotion where pure frustration, angst, stress and much more reside.

   To alleviate as much pain and fatigue as possible, you must manage your life and symptoms proactively. Throughout this book, I offer many tips on how you can take steps to manage your life effectively. Choose a few tips that resonate with you and try to live a more balanced life. Therefore, you can choose to be reactive and miserable every day. Or, you can try to take steps to live a more positive life. The choice is yours. But notice that I said you have a choice because you always do.

   The good news is you are in charge of your health and well-being, even when you are negatively impacted by a chronic condition. You could either chose to live a self-empowered life, or give in to the pain and it’s resulting suffering. This can ultimately result in a lack motivation and resilience to live your best life.

   One overarching purpose of this book has been to provide self-management tips to empower yourself to live your best life. You didn’t choose to become chronically ill. However, you can choose how to live well, despite your chronic illness. You can choose not to allow your illness to steal your joy in life. You can take the time to reframe your life so you feel fulfilled and happy, even though you regularly experience pain and fatigue. Again, you can choose to be defeated by your illness or learn to live a good life in spite of it.

   The good news is when you feel self-empowered, you won’t feel as helpless over your chronic condition. Your self-esteem won’t suffer either. Instead, you will take steps to manage your life so that your authentic self remains resilient and you can cope with the effects of your chronic illness. To reframe your life requires a shift in perspective, one that’s overflowing with self-compassion.

   To bring this to fruition, take steps to empower yourself from the inside-out. It can be difficult to empower yourself to live a good quality of life if you allow your pain to impact every facet of your life. The good news is that you can choose to empower yourself to live a resilient life by taking care of yourself from the inside by practising extreme self-care.

   In this way, you will become more self-empowered and in control of your chronic condition. Further, this positive mindset will help you choose to be much more positive about your life. In this way, you can learn to manage the symptoms of your chronic illness effectively, one habit at a time. Remember, your disease is not in charge or your life—YOU Are!!!

   Choosing how you speak to yourself can help you become more proactive about your health and well-being by prioritizing what’s important and eliminating what’s not necessary. Try to work through your negative thoughts and emotions by journaling about them. Journaling alone can miraculously help you be more resilient and self-empowered. Let’s face it, it’s hard to live with a chronic illness. However, by learning how to manage your pain, fatigue, and negative emotions, you can live a good quality of life.

Don’t Let Your Pain Define You

Pain should not define you. Instead, what you should be an important part of how you devise your life from here on and who you are.

The more often you take steps to ensure your pain and hardships don’t define you, the stronger will your mindset be. This is because a strong mindset can now effectively help you control the symptoms of your chronic illness.

Therefore, to alleviate your pain, you must be proactive. Here are a few preventative strategies you can easily in corporate into your day.

1. Pace yourself.
2. Don’t rush. Instead, slow down.
3. If you feel tired, give yourself some grace and create space between activities.
4. If you have a lot of things on your to-do list, and you don’t have the energy to get it all done, revise your list. Make sure you only do the necessary things on your list. Are some things unnecessary?
5. Take a regular strength or extra strength Tylenol a few times a day, as a preventative. This should help you feel better at the end of the day.
6. If you are experiencing extra stress, find a way to take a break and do something enjoyable. Go into another room and relax. Or go for a walk, if weather permits.
7. De-stress your life. Stress can cause tense muscles and even more pain. You can do this by:

• Not hanging around negative people.
• Having a zero tolerance towards abuse of any kind from anyone.
• Be mindful of how you react to your stress patterns by recognizing them before they start negatively impacting your health and well-being.
• Try to develop friendships with loving and caring people.
• Realize that you are GREAT just as you are. You don’t need permission to take care of yourself.
• Don’t overdo it. Instead, just do as much as you need every day.
• Don’t fill every minute with activity. Instead, create times for rest and relaxation. Try to read, journal, doodle, or crochet.
• Take mini vacations if you need a break. This can be as simple as going to a cottage for the weekend. This will give you some much needed time away and some space to relax.

By taking these steps, you will be honouring your pain and preventing yourself from feeling overwhelmed. When you have arthritis or any chronic condition, you must take proactive steps every day to mitigate your pain. Otherwise, you will feel a lot worse about your life. These negative feelings can worsen your pain and fatigue levels.

Be Proactive About Your Health

There are many benefits to living a re-focused kind of life. Take the time to find the positives. Again, this is where developing a positive mindset comes in. Living with a chronic condition can have benefits.

When I was first diagnosed with fibromyalgia and arthritis, I’d go down negative vortexes of thought and emotion that made my life so much harder. It took me a long time to realize that I was hurting myself by allowing my negative thoughts and emotions to overpower the more rational and intuitive part of me. I felt cheated somehow. I wanted to do everything that I used to. But this was the wrong mindset to appropriate for me.

What I needed to do desperately is to listen to my body and slow down. But I fought this with all that I had. I felt like a looser when I didn’t get a lot done. Little did I know, I was actually harming myself in the process.

I viewed slowing down as a sign of weakness. But this was detrimental of my overall health and well being. Slowing down wasn’t negative. It was actually positive and in line with what I was going through at the time.

Here are some benefits to slowing down and changing my mindset that I learned the hard way.

• You’ll really notice so many things in your environment that you never did, such as the deep purple carnations and petunias, the different shades of sunsets, the dew in the morning, the feeling of peace on rainy days, and so on.

• You’ll slow down. When we rush, we stress more.

• You’ll resist monkey mind which is where your thoughts run from one thing to the next unconsciously. Instead, you’ll focus on what you’re doing in each moment.

• You’ll stop focusing on what you can’t do and only on what you can.

• You’ll take things as they come and not overthink it.

• You’ll leave earlier for appointments and reduce your stress levels.

• You won’t push myself past your limits but honor them.

• You’ll listen and honor your beautiful body.

• You’ll take the time to take four or five deep breaths throughout the day.

By taking these steps to slow down, you will accept your chronic illness and live a good quality life. Further, you will take steps to reduce your pain and frustration levels by being mindful of your thoughts and attitudes towards your illness. Your mindset matters. The more positive you are, the better will your quality of life be.