Shocking Our Routine When Others Visit

Rhythm is instilled in us. It allows us to have an understanding of what works for us to survive within this life we live. It is a way to feel immortal in our very mortal bodies. In a rhythm we are able to figure out a way that allows us to move in and out of our days within life, allowing for us to be able to set up what we know can and can’t be done with our chronic illness. It makes us feel a little bit more human for a moment to feel that there is some kind of continuous normality of grounding ourselves, yet we feel invincible when we have a rhythm that works. Those rhythms change and can look different within our day to day normal lives, but there is a heartbeat of life that keeps us feeling like we have a sense of control and a sense of understanding what is happening from step to step. It is our new normal, it is a rhythm we are constantly shifting and changing to make it more normal feeling. It may be a work in progress, but it is ours.

 

Each personal rhythm is created by how we walk through life in little moments. When do we get up, when we shower, how we shower, how do we move within environments, how we interact with weather or temperatures, what we eat, how we eat, how we choose to interact with others, and so many other movements. Your rhythm is essentially the safety zone of your routine. With chronic illness, these little movements and moments become under a magnifying glass, because we are taught in those moments are limits in such great detail. Our rhythms are created through our illness based on what can and can’t be done. As we walk with chronic illness we understand the very delicate balance it requires to maintain any rhythm, and the extremely hard work it is to find and carry that rhythm.

 

We come in contact with someone else’s rhythm, little adjustments are made and sometimes in extreme cases, our rhythm collides to completely unravel itself. As humans, there will always be other humans around us and sharing bits of their rhythm with us in each moment of connection or near connection we have with them and visa versa. Within the season of holidays our personal universe seems to intertwine with a lot of others, making our rhythm adjust in ways we aren’t expecting and frankly our rhythm can be adjusted before we even realize it. There are some people who are absolutely more in tune with intentionally seeking out a rhythm that is good for them while others are completely unaware of their universe they have created for themselves, but when someone has chronic illness it is an every moment understanding of how to move from one position to the next. It is about creating a rhythm that is built from a completely different shattered rhythm.

 

We hold that rhythm a little closer than most because it took a while for us to accomplish it and it is very much a work of art that is still in progress. When we come into moments where we know our rhythm has been bumped into, with either little or major shift from someone else’s rhythm, it is an adjustment and potentially a little difficult to readjust. It is difficult because we would love for our rhythm to be elastic, and these moments require us to realize how manipulated they can be, along with how much work it will take. When having people over for the holidays or going to others homes, it can be a change. It can be so exciting to be with others in the holidays, but there are so many effects it can have on our rhythm. Below are ideas to maintain the rhythm you worked really hard for, to respect others, and enjoy the exciting moments to come!

 

When Having Guest Over

Finding a rhythm for yourself to best enjoy the holidays and those you love.

– Know your limits and what you are willing and not willing to do.

– For those that add unnecessary stress to your life, figure out how to make conversation light or surface level to avoid aspects of the conversation that could hinder your health.

– Find a place in the environment where you can step away for a moment or two when you find yourself having symptoms or maybe just give yourself some time as a gift.

– Know you only have to share what you want to share.

– Even if the guest has been to your home frequently, they won’t ever fully know what it is to live with you. You don’t have to tell them everything, but coming up with a way to say that you just need your space or that you are ok, will help you in a lot of situations.

– Before guests come make sure that if there is anything you don’t want them to know about, it is tucked away. If you have medications, or specific items that you feel shouldn’t be out, just tuck them away in a spot where you know you personally can access them easily, but your guest can’t.

– Understand that they have a routine as well, so being away from their home is an adjustment to them in a different way potentially.

 

Consider the different situations with your caregivers and/or those you live with.

– Talk to your caregiver/those you live with about the potential schedule when guest come.

– Help them understand your limits, by letting them know what parts you feel that you would be up to doing.

– Ask them what they would be willing to still help you with during the visit.

– Figure out some private way that you could get their attention so they know you are having symptoms and stepping away.

– Ask them what their expectations of you may be or the role you may play during the visit.

– Consider having a conversation about what is ok to talk about with your health and what isn’t ok to talk about.

 

When going to someone else’s home.

Figuring out what works best for you.

– You don’t have to tell them everything about your life or your health, but give them a typical routine or what you feel you could do. This way they can figure out their schedule.

– Give them a list of food allergies. If you feel more comfortable you could potentially bring your own food.

– If you require a certain kind of bed or shower ask them about what they have that help you. Or if you can’t go up the stairs, let them know.

– Consider anything that you can provide for yourself, or bring. Knowing that it is not our home and we have very specific requirements, figure out if you can problem solve on your own. If you can’t then tell your host what you may need from them.

– If you bring a large quantity of things, make sure your host knows. This way they can adjust their home to fit certain sized items.

– Make sure you give them a reasonable amount of time to know all the above. This way it gives them enough time to adjust if need be.

– Don’t expect your host to pay for anything extra to accommodate you. Figure out the best way to either pay them if they purchase things, or bring as much as you can of your personal required items.

 

Creating a balance for your caregiver/those you are traveling with.

– When traveling with someone make sure they know what you need their help with.

– Give your caregiver/person you are traveling with a list of your medications and main doctor names just in case something happens.

– You want them to enjoy the trip as much as possible, so don’t expect too much from them, rather enjoy the moments with them.

 

Questions:

Would you rather someone come to you or you go to someone else’s home for visits?

 

T r u l y ,   L i n d y

Before and Coming

 

Hello Hello!

 

I am so glad you are here! For those who have been here before I thank you with so much love! For those who are new, I am so excited to meet you and that you are here! The past couple weeks I haven’t been posting on Nuanced Living. A small break was needed, so to start the next phase with you I wanted to recap and share again all the post that have gone live so far! I hope you enjoy!

 

Post that have gone live so far!

(organized by most recent)

Fixing the Uncertainty of Timelines

FREE 2018 Calendar!

Redefining Limitations with Chronic Illness

The Right Questions to Ask Your Doctor

Understanding Chronic Illness Through Interpretation

Creating a Life You Love Despite Chronic Illness

Easy Tools to Gather Medical Records

5 Ways to Make the Expectations of Self Easier

How to Be the Best Caregiver For Your Life and the Patient

Understanding Medical Expenses

How to Deal with Our Every-changing Body within Chronic Illness

How to Find the Best Caregiver

What Does the Journey with Chronic Illness Actually Look Like

What is chronic illness?

 

Have you seen the shop yet?


 

Don’t forget to print off the free 2018 calendar for you and to share with friends!

 

 

 

What is to come within the next few couple months?

In the next few months Nuanced Living will be opening up about a lot of different topics regarding life with chronic illness, expanding, along with introducing several new products (including free ones!)! So excited for you to come back and see what we can learn together!

T r u l y ,   L i n d y

Fixing the Uncertainty of Timelines

 

Our bodies have shifted, making our lives come to a stand still and the things that used to be reachable are out of sight entirely. We see the world around us and the cultural norms of what an idealistic life should be in every aspect pass us as if it has forgotten us. We may or may not have chosen certain routes, but yet it still seems upsetting to feel that we don’t have the option of even saying yes or no. The option of having a say in our timeline, seems laughable in away. Chronic illness can seem to take control of a lot of our situations, including our overall timeline and how our life plays out. Below are ways to shift our timelines to be what we desire within our new world.

 

As individuals in this life, we look to those that are similar age or with similar ambitions to figure out where we should be at, what our goals for the next few years should be, if we have the best of what could be. As an individual with chronic illness, we often feel mentally that we want to be a part of those goals and that life, but realistically our bodies hold a different more pressing perspective of life. No matter what your chronic illness is, you find yourself standing still even if for a moment as people seem to gather their lives “seamlessly.” No matter the stage in your life or what it looks like, whether you have the perfect job or aren’t working, if you are married or not, if you are in your twenties or in your sixties, it can be jolting to your reality, but it doesn’t have to affect every aspect of the realities of your timeline.

 

We go through different stages of figuring out what is happening to us, the realities of what is about to happen, and what our life looks like. As time goes on the impression of these things seem to get greater and greater. We see the details of the differences between us and the world and what our world should have looked like. This is where we have the power to take control, to grab our timeline and make it something unique. It may not look like the worlds, but we have the ability to figure out how to stand up for it in such a strong way to make our new reality beautiful and our time lines our own that we are proud of.

 

How to create our best timeline?

Patience:

We have different stages of grieving within our body so make sure to set the limits of what you can’t do based on your personal understanding of self. At the end of the day you are the only one to truly know what your limitations are. Having patience for the journey and with yourself is key. Understanding that our timelines will shift and change, and like all others we truly have no clue what the world will hold. There will be several stages and processes within this life, along with the face that you yourself will change, so making sure you are patient and setting realistic timelines that are flexible will help.

 

Standing in Confidence:

There is a difference between standing within life and being grounded in life. We all have a perception of ourselves and where we should be, but what is it that we are really chasing? Figuring out what you stand for, who you are, what your life actually looks like, and what you feel you have power over to create your timeline. Having goals that we set for our lives and not discrediting anything that we desire creates timelines. Write down the things that you want and yes they may not come in the way or the time you thought, but never believe you are not worth having something. Chronic illness is not a power that we may have asked for and it has its limits, but it grounds us in being stronger in the individuals that we want to be, rather then the ones that are perceived or that we feel we should be.

 

Our Approach:

Social media, realities of life, whatever it may be, warps our view of what life should be. It sets standards upon us that usually aren’t realistic when having chronic illness. When figuring out how to look at these outlets, consider the simple idea of encouraging someone else who is doing something incredible within their life, because their successes in no way take away from you or your successes. Each of our lives is very different from one another and it is important to uplift people and figure out how we can be uplifted at the same time by others to have the best life within our own world.

 

It May Happen:

Don’t ever have an individual tell you that you need to be ok with something you aren’t ok with. Others may have an expectation for you, but don’t let them. Each individual on this earth has gone through very different experiences on so many levels, so create a perspective of your timeline that fit you. Others are going to have perceptions and expectations based on their own personal experiences. Let them know how you feel, and let them know how they can be a part of your timeline without dictating it.

 

Having Faith:

Faith is a very personal experience and there are so many interpretations of what it means. Sometimes having faith within our own strength is what may be needed, while other times it is finding strength in a higher power. A powerful tool many with chronic illness have used is allowing for the idea that we have no control over our timelines and what is happening to us, giving that upset and worry to something else to watch over. This is a decision that is based on your faith and your interpretation of faith. It isn’t always the only solution, but rather a piece to help create the best timeline. Also having faith in yourself is important because you can get through whatever is thrown your way!

 

 

Questions:

What was the biggest shift within your timeline and how did you become ok with it not being on your time lines?

 

T r u l y ,   L i n d y

Redefining Limitations with Chronic Illness

 

Limitations of life are typically defined by fear or moral base, our physical body doesn’t always come into play until we are hit with something like chronic illness. The presence of if we want to do something or if we should do something, based on illness. It now sets our limits. Our personal definition of limits is very different. We define our personal limits based on how we live life. As chronic illness takes over our physical capabilities, slowly or quickly, we discover limitations of life are now dictated more by our body. Some of us don’t really understand limitations of life until we have chronic illness. As chronic illness shifts within our life, our definition of limitations shifts with it. Some limitations can be constant, but some limitations can be temporary. We learn to redefine it because if we don’t it consumes us with a stress of incapability.

 

 

Our body or cavity becomes more defined. We know what is happening, we still are the same person mentally as we were before, but our awareness of our body becomes more apparent, especially when we try to push our boundary limits. Our personal limits can be going to work, maintaining your job, maintaining friendships, going out in certain types of weather, consuming different foods, going to different places, being able to do the dishes and so many other examples. It can be any gesture of life. When we realize a limitation, not by choice, but by body it can be the worst feeling. We face them head on at the moment, which especially depending on our activity this can be extremely challenging. When we realize our limitations are more recognizable then we desire, that is when we can get a choice to take care of ourselves, even when it is overwhelming and frustrating to figure out a rhythm. When we are able to recognize the challenging moments within our life, we are able to recognize us and figure out a plan to move forward with everything. Below are a few ways to help you face limitations and help redefine them to fit a life you still desire.

 

Personal Experience: One of my hardest limits I found with chronic illness are the ones that affect the day-to-day aspects. I so enjoy cooking and with all my nerve pain throughout my body, it had affected by fatigue in my arms, so my arms started having tremors, which meant I couldn’t hold a cup without two hands or hold a utensil. So I had to give up something that not only I loved, but I had to ask someone to help me with the basics needs of living. It was extremely frustrating and overwhelming, because not only did I know it was happening, it was so visible to everyone around me. It created definite limits to my life and it required me to ask someone for help. It was a stretch of my patients and taught me a lot within the process of how to maintain my emotions and not get frustrated by what is happening with my body. Thankfully this limitation only lasted about a year, I found treatment for the tremor symptom alone. It was one of my successes within this health journey. Although I may have found a treatment to cover up the symptoms, if I don’t do the treatment it comes back right away, along with when I have been in a lot more pain my tremors come back. So it isn’t an everyday symptom, but it still occurs. I am faced with limitations every day from symptoms that have and can’t be treated. Almost every day I am reminded or discover a new limit, but my desire is to live a life I love, despite the limitations.

 

Ways to help redefine the definition of limitations to your personal life:

 

The “can do” and “sometimes can do” list.

This is a concept that has got me through almost all of my limitations. Create a list of things that you love that you know you can for sure do and then instead of creating a list of things you can’t do, create a list of things sometimes you can do. This is a list of everything that isn’t on your “can do” list. Maybe it is simply a mental list that you make to yourself, maybe it is a list you share with others especially the ones you live with or your caregiver. No matter where you have it or how you hold it, it allows for you to not get rid of all the things you feel you can’t do. The “sometimes can do” is a list intending to say I may not be able to do it now, or in certain moments, I may not know when I can do it if ever, or I can’t complete this task during symptom flares. It gives yourself permission to not use the word “can’t,” along with allowing you to give yourself permission to also say that your symptoms are not in a good place to complete a task now, but you could get to it later.

 

Finding a moment of peace within the overwhelming realization.

When finding ourselves in an overwhelming amount of upset and realization about our limitations, maybe even a new limitation, pause within that moment and figure out a way to ground yourself to take a minute to figure out what your limits are extracting the emotion from the situation, as much as possible. Then step forward and try again, if you keep finding yourself in that place, don’t give up hope just know that this moment is not the moment to evaluation your limits. This moment doesn’t define your limits. When you find yourself in this situation make sure to step back and figure out how were your symptoms when you stepped into this situation, try again at a point when your symptoms are better to see if you can do it and then maybe put that task on the “sometimes can do” list.

 

Learning a new language for yourself.

When we readjust our thinking about what limits mean to us, we often discover that our personal boundaries have now shifted. We let the ones that we know we can rely on in, we push the people we can’t deal with their stress away, and we figure out how we can care for others and reshape our relationships. With this we learn to ask for help, we learn to say no in a stronger way (since our health that relies on us to not deal with unnecessary stress), we put ourselves first saying we have to take care of us first, we learn a whole new vocabulary. You will define and redefine this as you learn what your limitations are.

 

Understanding that limits, like our health are constantly changing.

As your health shifts and your chronic illness develops into one thing or the next, we learn to redefine what our limitations are and what it means to have limitations. We will constantly be changing our vocabulary of what our body can and can’t do. Patients can be one of the hardest things to do, but it can also be the most helpful tool, to understanding what is going on within your life.

 

 

You may find yourself in a moment that you’ve done a million times prior, that can’t seem to stick in that moment, let go and allow yourself to find yourself doing one of the above to figuring out if you are redefining your limits again.

 

Questions:

What is your best life tactic that you find helps when discovering a new limit?

 

 

T r u l y ,   L i n d y

Creating a life you love despite chronic illness!

What does it mean to create a beautiful life, when you have chronic illness?

When we feel like our life is hardly beating, surviving in the chaos our body itself created, it is hard to consider the fact that our lives can be pulled from this current mess enough to filter in a life we love. Those who have chronic illness go through a phase within the journey where the ability to create a good life or even a life is not a possibility. We are so focused on the current situation of what is actually happening during this time. As we find ourselves standing still with the life we once knew falling at different speeds around us. We feel the weight of not only our personal selves trying to pull to grab onto something but the weight of each piece of familiarity that slips quickly from us. This is temporary. Once we are able to understand our body a little more and what is happening to our world, we are able to steady our feet, even if not fully and start moving within this new life. Senses start to figure out how to embed in this unknown landscape, not as fast as most the world, but gathering fallen pieces to build something different. We reshape our lives based on what we knew, what we now know, and what is unknown. Even though our world seems to be in pieces, we start to find flowers growing in the rubble. This allows us to create a beautiful life despite chronic illness. It is a life of broken pieces that are going to be very familiar too quickly, but it can be a world that we can create something beautiful out of the overwhelming and unwanted world to see light again, to become aware with our senses again and to regroup to the understanding of who we want to be. A life you love can be created individually, despite this unwanted gift we have received.

 

A new product, two art prints in one package called the Create a Life You Love Art Print, is now sold on the Nuanced Living Shop for only $2! It is an instant download once purchased for you to print right away to be a helpful tool to organize your medical records more easily!

How can you create a life you love?

Understanding that it is ok to be happy!

We often are taught that it is ok to be sad in this world because the world usually requires strength. Projected sadness is a gift, strength is a gift, happiness is a gift, but we all have those gifts. When we are given a chronic illness people often assume or create a projection that we have to be sad or down in order to not be doing well or struggling with a chronic illness. They don’t realize that our happiness isn’t a string attached to our chronic illness. Give yourself permission to cry when you need to cry in the boundaries you have personally set with others, but also give yourself permission to laugh, to be happy, to embrace the emotions of joy! Even if you are in the ER (Emergency Room) and your sibling says something to try to cheer you up, you can feel whatever you want in any situation. Give yourself a gift by not shutting out your happiness. We are already struggling to figure out how to have constant strength in this situation, so allowing yourself to have any emotion and allowing ourselves to share it when we want to share it despite others judgments, is crucial.

 

Redefining and seeking your definition of what a beautiful life means.

Every single person has a very different perspective on what the definition of beautiful is. The perspective that we have maybe on what our past look like. We understand what our past looked like and the makeup of what made it beautiful, making the transition to the new life difficult. Sometimes we just want one more breath of the past, of our past bodies. Figuring out what defines a beautiful life now, even if it means completely redefining what beautiful means to you currently will be key to future happiness. Seeking beauty within chronic illness, will allow you to set aside the ideals of the past, but recognize the beauty in the moment and the future. It is a lot harder to do than say, and may take time to figure it out, but continue to try to redefine the definition till you have it figured out.

 

Have the courage to let go of the things that you can’t change.

We can’t change things we don’t have control over. Life itself brings challenges to anyone in any situation. These challenges are pieces we can’t control and can be overwhelming, yet when chronic illness is then added to the mix, life seems too much when challenges arise. Sometimes the unnecessary stress requires boundaries, cutting it from our lives, or simply not giving it the brain space it craves for. Figure out how to find what you need to bring you back to the enjoyment of life and not get dragged off in one direction or the other by unnecessary stress.

 

Don’t set unknown limits.

When facing a chronic illness, we hear constantly about the “what we shouldn’t do” and the “can’t dos.” We face the challenge of what we personally know our are limits, but when outside sources seem to create a greater limit boundary we feel overwhelmed by the lack of potential for our situation. Yes, there will be limits, days of limits or even weeks of limits, but understanding that we don’t have to set limits that are unknown is ok. We are individuals facing similar issues to others, but it will look very different on each of us, so don’t set limits on the “what ifs.” With that said you don’t want to push yourself in a direction that allows you to make poor decisions. So if you are wondering if you can do something or not, not only check in with if you should, but also take baby steps so chances of something going bad are less likely to happen. Don’t set the limits of your life based on unknowns, but also make sure that you are making the best choices for your life that are healthy, happy choices.

 

 

Now go find create your version of a beautiful life!

 

A new product, two art prints in one package called the Create a Life You Love Art Print, is on the Nuanced Living Shop for only $2! It is an instant download once purchased for you to print right away to be a helpful tool to organize your medical records more easily!

Questions:

How do you create a life you love despite chronic illness?

 

 

T r u l y ,   L i n d y

 

image source: @NuancedLiving

5 Ways to Make the Expectations of Self Easier

How our expectations of self have unwillingly shifted based on chronic illness:

After the symptoms have hit our lives, we find ourselves crawling into ourselves, into the world we have now created where we feel sanity is keeping us afloat. Our standards of ourselves have shifted unwillingly and our standards of others even more. What used to be a life of picking out what we craved from the millions of options within this world, is now figuring out how to mask the details of what we have become and forced to the choices that still seem tangible. Our sense of awareness leads to the idea that we are so far removed from what was, but at the same time understanding the limits and expectations that have unwilling shifted based on our symptoms of chronic illness.

Some aspects of our lives that have shifted are pieces that seem impossible to maintain, though they are basics of what keeps us going and fundamentally taking care of ourselves. We can’t even uphold these basic needs because energy is lessened and we are trying to figure out how to use the little amount that we have. As our lives have shifted, making our expectations of selves different. We are painfully aware of how the way we dress changed, how our friendships seem to drift, how the environment we live in doesn’t have the same feel. They shift because they are hard to maintain and depending on what our symptoms require we may simply just need things to look differently. We may not want them to shift, but figuring out how we can best live within the new normal will allow for those moments that we want to crawl deep inside ourselves less painful, by nurturing the basics of our lives we desire despite everything the symptoms cause.

Below are 5 ways to make the expectations of self, easier despite chronic illness, by touching on different areas of our lives.

 

5 ways to make the idea self expectation seem easier!

 

  1. Reshaping what relationships look like.

    It is important for each of us to connect with people in one way or another. Our relationships shift based on; how much time is spent with them, when we spend with them, what we do with them, and maybe even how we are symptoms are when we are with them. Initially, when we have symptoms, our social life will feel as if it came to a complete stop and be very different. We never know when we are going to feel ok enough to spend time with loved ones and it may be months before we get back to someone. Surround yourself with people who will understand that you care deeply for them, but seeing them on a regular base is more of a want then a reality. Also the type of ways you can spend with them may shift and change, you may find yourself having more conversations over the phone, coffee dates during hours that you usually have fewer symptoms, having plans in environments that won’t affect your symptoms, or creating plans with a group so you can step away if needed. Create a list of places you feel comfortable spending time at and figure out when your best hours are (when you tend to have the least amount of symptoms), and set aside one or two times a month to spend with someone. Also, give yourself credit that you may not feel good, so you can always change plans!

 

  1. Understanding the foundation of who we are.

    Symptoms can take control of our emotions and set us up in a spin where we can’t focus on anything but what is happening to our body. We lose what we thought defined us as a person. We deal with life differently than we previously did, so how can we figure out what kind of humans we want to be despite all the changes, the upset, the stripped life of what we thought defined who we are? We figure out through chronic illness what is important at the core and how we want to be defined. We as individuals may feel overwhelmed by our new situation, but there is also the idea that we are still us fundamentally, with the ability to have control of making decisions within our circumstances. We get to decide how we interact with others, our choices, how we decide to get through life, how we love and care. Figure out what is important to you fundamentally and figure out what kind of person you want to be and yes it is so hard with chronic illness, but we have the best version of us.

 

  1. Staying motivated to do the basics.

    Basic hygiene can be brushed off or set aside so easily because even those are so difficult when we are having symptoms. The idea that a shower takes so much effort and brushing your teeth twice a day, ha try for maybe once a day. We have little energy, but there is a list of what our body requires along with what health care providers require, which makes the basics fall to the side. Create a list of basics that you feel you don’t do within your daily routine, but need to. Pick one of the items and focus on it till you get the foundation of it in your routine, then add another. Figure out when the best time tends to be to do the task if you need help with completing the task, or even what tools help you complete the task in the best way despite your symptoms.

 

  1. Figure out what motivates you.

    There are days when waking up n is all that you can do. There are days where getting out of bed even seems incredibly difficult. Not only do we deal with symptoms, but our lives that are now a result of our symptoms, like it or not require us to find a great motivation to keep moving forward. A motivation that allows us to get out of bed, helps us to move forward with treatments, pushes us to take care of ourselves in the best way, and encourages us to keep seeking the best lives. These motivations can come from anything. Some examples may include; your kids, your spouse, your pets, yourself, something living you have to take care of, having a deadline, accountability, plans, knowing your importance within a situation, a higher power, a good book you want to finish, etc. It may change day to day, depending on what you need to do for that day. Create a list of things that motivate you to keep moving forward and carry the list around with you or place it somewhere that can be a reminder of the motivations within your life.

 

  1. Creating a “can do” and “maybe sometimes can do” list.

    Saying “I can’t do it,” is really hard to wrap our mind around, so let’s create the idea of “sometimes I can do it.” This means that maybe some days you can do a project with such ease (even if it is just for 10 minutes), sometimes you can do the project with a stop and go process, and sometimes you just need to do something different. These projects can include; house chores, work requirements, socializing, etc. Feeling that you can contribute to this world is important, not only for you and what you are personally experiencing but in general to your people. With this said, though, there are some things that we can for sure do and there are some things that we “sometimes can do.” You’re “sometimes can do” list will probably seem a lot longer then your “can do” list, but this allows for you to feel that if there are days where you can contribute and days where your energy needs to be spent somewhere else. There might also be items on your “sometimes you can do” list that you may never get to. Don’t worry about it for a second. Create the two lists and talk to the people you live with. Remember the list can always shift and change.

 

Question:

What is the hardest self expectation you know you have to maintain and how do you maintain it?

 

T r u l y ,   L i n d y

 

 

How to Deal with Our Ever-changing Body within Chronic Illness

When our bodies seem to take control in such a negative way, we find ourselves holding onto the idea that we will be able to grasp onto a moment when our bodies are completely back on track. We believe we could potentially get to our normal lives and maintain that level of health as we keep moving forward within a certain standard of life. With chronic illness our bodies are constantly adapting to our surroundings, our intake, our personal thoughts, our experiences and the actual realities of our body functioning differently. Sometimes we are able to and capable of finding that moment, but the majority of the time people tend to find themselves holding onto those moments for a little bit before they disappear again, looking differently each time they appear. Each element of our bodies is going to respond differently, making it so we don’t know how it will respond to treatments, how it will respond to the actual illness itself, or how it will respond to life. Yet we hold onto an idea of what we believe our own lives could look like, along with figuring out how to live those lives within the moments we get, while trying to figure out what is really going on.

What does the idea of “our bodies are constantly changing within chronic illness” actually means?

Our bodies are ever-changing for a multitude of reasons: getting older, what we expose ourselves to, how great of a steward we are of our body, how our body shifts and responds to different elements, what treatments we try, what our symptoms actually look like, what the progression of your chronic illness looks like, and more. We may even have days or weeks where we feel like we may have figured it out and then all of a sudden something changes or shifts. Chronic illness creates a reality amongst us that makes us understand dramatic changes within ourselves. Good days versus bad days, even good moments versus bad moments.

Even when we feel like our bodies are a complete mess and we try to press through those moments in fast forward, we still have the hope that it will change to a better self. We understand that now we are learning constantly the subtle nuances of how our bodies are shifting and changing based on this new element within our body, and yes it so sucks, but we are also trying to figure out how to live life the best within the ever-changing body, so that our body doesn’t affect every aspect within our lives negatively.

 

What does it feel like to be in our bodies when it comes to change?

Below is a simple glimpse into what it may feel like to live within a body dealing with chronic illness as our bodies shift:

– There is a stronger awareness of what it means to have physical constraints, and the concept of living within a cavity that we don’t have ultimate control over.

– We want to try to get to an end point where we feel back to “normal,” where we don’t have any symptoms or at least are able to maintain a life we previously have chosen, without limitations within the chronic illness frame, while also trying to realize this is maybe our new normal.

– We are constantly trying to figure out what the best new normal is, whatever that may mean to you. Knowing even the new normal shifts and changes.

– There is a constant push of our bodies to go through a lot in order to seek freedom from the symptoms. We constantly are seeking solutions and willing to try almost anything to figure out something to be a release for symptoms.

– Constantly having the strength of trying to understand what it will look like to be “ok” and seeking a great rhythm, while knowing something could easily happen again.

– It does not affect only our body, but every aspect of our life and how we interact with this world, knowing plans could be affected and our ability to complete tasks changing based on how we feel.

 

What does “living well” even mean and how can we adapt to that when our bodies are constantly changing?

Every single one of us have a different version of “living well.” Sometimes living well is being content, seeking happiness, being able to enjoy the people around you, and indulging in simple aspects of life like bathing in the sun or drinking the best cup of coffee. While others seek a different type of living, creating a standard for themselves and those around them. They may want as specific career, certain type of family, the ability to climb a mountain, or the ability to seek the unknown without any limitations. The aspect of each individual is chronic illness doesn’t change what we may desire for living well, but ultimately our definition of living well shifts based on our perspective of living with chronic illness. It does not have to be a bad thing, and some may say the shift of what living well means is actually a good thing.

Figuring out what the future may hold and how to be able to live our best within that can be one of the greatest challenges, because you are seeking your life’s future. Understanding what it means to take care of yourself and move forward at the same time, understanding that we can’t pause our life and we are trying to figure out the best way to maintain it and love life through the unwanted storm given. It means that chronic illness will not take away your identity and who you are as a person, it won’t even take away your ability to enjoy life, but it does play a role on the limitations of how you enjoy your life.

What is your version of “living well”?

What are some ways to make the process and changes a little easier?

– Don’t ever doubt your ability.

– Give yourself the time you need and the life you deserve. You are still the same person you were pre-chronic illness, with similar interests and even more knowledgeable than before. So allow yourself to understand that even though your body changed, that doesn’t mean you deserve anything less. You deserve to be loved, you deserve to seek out the best treatment options to figure out how to make some days less worse then others, you deserve to still take interest in things you did before, even if it looks different.

– Evaluate your body constantly, so you know what is going on, what rhythms you can may expect and what to do if there is a change.

– Figure out what “living well” means to you. Write down ten things that would make you feel that you could live life well, then work on one that seems to be reachable this week and work towards bringing that into your life.

– Be patient with yourself. You may not know how you are going to feel day to day, but knowing that and taking the steps to care for your body the best you can within those moments is so important.

 

Conclusion:

We don’t want to find our best selves within our past, we want to find our best selves within our future. Meaning although you have a chronic illness, it doesn’t stop your life, and it doesn’t mean that you can’t have an incredible life. Yes, it will bring the greatest challenges ahead of you that you have every experienced and it will push your limits beyond what you thought you were capable of, but finding happiness despite the insane amount of stress around you can be possible, even though our bodies are constantly changing and figuring out what is going on with ourselves.

 

Question for you!

What does “the new normal” mean to you?

 

T r u l y ,   L i n d y

 

 

Photo Source: @LindyJacoby

What Does the Journey With Chronic Illness Actually Look Like?

While walking along a forest path your senses become on high alert, seeing an ever-changing environment around you, with the warmth of the sun in glimpses. You know you aren’t the first to experience the path simply by the obvious signs of wear and tear alone, but rarely do you encounter another soul.

If you have brought a companion along with you, there are times when the footsteps of one another get farther apart seeming as if they may disappear, while other times the footsteps get closer, maybe even too close. You may see one or two souls that you have never met before, that may pass you in some way with simple acknowledgments. More often than not you find yourself on the path alone, seeking your personal journey.

The path somehow becomes the boundaries of your journey, only allowing the tips of its vast landscape to be touched by you. The trees are there, the plants are there, there are birds singing somewhere, a whole world is there, but you feel that you have to stay on the beaten path either by the idea of being guided, personal comfort, or simply knowing this could be the only way to get where you need to go.

Every once in awhile you’ll stumble upon off trails, which look like fewer people ventured on. Certain off paths aren’t worth bothering with to you, while others you may just be too curious to not seek out its potential. Each off trail brings its own personal journey with either ending randomly, having a glimpse of something beautiful at the end, or is a place of rest till you are guided back to the original path.

We have all walked it, with only a few unreadable or confusing signs pointing to suggested locations, but where do we end up truly? Sometimes those journeys lead us where we wanted to go with interesting experiences along the way, sometimes it is a simple loop to end up where we started, or sometimes we have no idea where the journey ends up.

Within our personal health care paths, we experience similar concepts that we do within the forest path; our senses are on high alert seeking the beautiful world around us till we find our destination, while simply not knowing where the path will lead us and having the restrictions of our bodies to guide us through it. It is a path that obviously has had multiple people travel it, but very few people exist completely on the journey with you. Often the journey with chronic illness can be truly empty, overwhelming, many moments of thin hope, healing, defeat, with a multitude of paths that can be taken or not. When navigating the beaten path our journeys may be frustrating at times, but there is also a beauty in how we grow as individuals within ourselves amongst this journey. Knowing somewhat to expect helps us grow to our best abilities even when times seem too hard to deal with.

 

What are the general stages of a chronic illness journey within healthcare?

Each one of us, no matter if you are directly dealing with chronic illness or have a chronic illness, has a very different path from one another within the journey of health care, but there are general similar stages we process or go through, even if we process them differently. No matter where these stages originated from, it seems to be the rhythm people tend to go through within the health care system we currently have established. The stages give us a general sense of what we all can go through within our journey with chronic illness or really anything healthcare related. They are in the order that is typically presented and guided by a health care provider, as a general guideline rather than your personal “for sure” pathway.

Stage one: Do you have any concerns with your body?

This is the stage when you personally feel that something is going on with your body that feels wrong. You find yourself asking; How do I feel? Do I know what is going on? What are my limits? Should I seek medical advice? What medical advice should I seek? It is that stage where something has affected you and seems off that it pushes you out of your personal limits enough to then seek medical advice.

Stage two: Where do I seek medical advice?

A question to consider is; where do you start seeking out your medical advice? Most of the time people will either start with their Primary Care Provider (PCP) or if it is more urgent the Urgent Care or the Emergency Room. Sometimes they are able to solve the problem, but usually, if you have a chronic illness they will bring in more specialized doctors into the conversation, typically doctors that deal with the specific part of the body that you are having concerns about. There are many different forms of health care. Depending on what you believe, insurance, or several other reasons, you have the right to seek out certain health care provider that you prefer. This stage is about seeking proper health care advice for what is going on with you, to help you get the best care possible.

Note: Legally only a licensed (and depending on the chronic illness only a specific) doctor can technically diagnose you. You may not feel comfortable with a licensed doctor and seek other forms of help. Seeking medical advice from anyone outside of a licensed doctor leads to suggestions, with potentially their own diagnosis. That diagnosis may be classified similarly to medical terms, but they are not allowed to use those exact terms or potentially treat you within those parameters. Even if your issues aren’t diagnosed doesn’t mean you don’t have problems, it just means it will be treated differently. This is great to note if disability benefits through social security will have a role within your health care. Look at the state you live within to get exact requirements, but often they require “official diagnosis.”

Stage three: How do I know for sure what is going on with me?

During this stage, doctors will have created a few potential options of what could be occurring with you and then they create a list of tests, procedures or even medications to figuring out exactly what is going on with us.

Any form of chronic illness is a large label to place on anyone’s medical chart, so this stage helps prove as much as possible that something is happening to you, not only what specifically is happening, but how it is affecting and where it is affecting. This is a stage of creating evidence of an official diagnosis.

If they are not able to rule out different hypotheses or they can’t find anything they may request more tests, procedures, or other forms of trials to continue the search of figuring out what is going on with you. Depending on what is going on with your body, this process can last a few weeks to several years. This is because chronic illness can appear differently on anyone.

Stage four: What is going on with me? 

Finding a diagnosis can be overwhelming and a relief. We know what is now going on, but now we know that something is going on and we have to try to figure out the next steps. During this stage, a diagnosis will be presented to you. Sometimes doctors will tell you over the phone or they may set up an appointment with you. It allows for you to understand what is going on with you and if there may or may not be something else going on along with it.

Stage five: What does my treatment plan look like?

Once diagnosed with any health issue, your doctor should present a treatment plan. The treatment plan could involve a wealth of treatment types including; medication, physical therapy, or even surgery. This is a stage that can help try to resolve, lessen the symptoms occurring, or help you go into remission. It is a stage that takes a lot of understanding of how your personal body will react to each potential treatment attempt. Treatment plans are an ever-changing process. This stage you may make you feel stuck or that it requires a lot more time than you would like because along with your doctors you are finding the best formula as well.

Stage six: How do I manage my health issue to the best of my abilities from here on out?

This stage of the process is an ongoing stage for the rest of your life. With chronic illness, you are seeking out what works and doesn’t as our bodies are ever-shifting. Although we may find a formula that works we will be constantly changing, growing older, experiencing new themes in life that will shift how our bodies respond. This means we have to learn how to be the best advocates for ourselves to make sure that we are equipped with knowing when things seem off and need adjusting.

 

Know that it is actually normal to not go down a straightforward path. When your path seems to go in several different directions know that it is ok and more likely expected. During certain parts of our path, the stages may seem to blend, testing new theories, pushing new limits, finding new issues and continuing to face the next steps within our life. It is about managing personal health issues as our bodies themselves constantly change and also knowing the right steps as we step away from our doctors a little bit more and more to manage this on our own more easily, along with knowing when to bring your doctors back in.

Nuanced Living is founded on being a resource for being the best advocate for yourself within your healthcare and life.

What is my personal experience on my path?

I have always done a western medicine approach for a multitude of reasons; partly because my anatomy is vastly different than most and they have already mapped my anatomy so it makes it easy when I see doctors, there is the idea of insurance, along with the type of chronic illnesses I have it allows for more options to be on the table. I have experienced different forms of treatment through other branches of medicine outside of western medicine, but for my foundation, western medicine has been the most formal component of my formula.

Why are our journeys with chronic illness so different?

No one with chronic illness asked to have a chronic illness, but yet it affects our lives in every single aspect, ultimately reshaping them. It doesn’t define us but makes us carry its weight. It is something that can come from any number of sources, an injury to even genetic or maybe both. There is a range of sources that can start your chronic illness, which instantly affects us differently, but even within our subcategories of chronic illness it truly looks different amongst each of us.

Some doctors might refer you to either as “typical” or “atypical,” which are terms to describe their own perspective of what is occurring with you. This basically determines the start of your journey. To doctors, they will perceive the way you carry your illness as something that they believe can be treated within a certain system that seems to work for “most” people or if they will start a different series from the beginning that is not typical. In the end, no matter if you are “typical” or “atypical,” you will have to have a unique treatment plan tied to you. The terms simply just help them know where to start your treatment options.

Our bodies are so different from one another. We are coming to the table all differently based on; how we treat our bodies (do we exercise, do we smoke, etc), what we have experienced within our life (have you had a traumatic experience, do you work outside or inside, etc), in general our makeup as humans (is our anatomy the “typical” human form), and how we wear our bodies after the fact of symptoms (do we push ourselves physically, do you continue certain habits, etc). We are all very different especially when you add all those factors together that make us as a human being. Unfortunately, since our bodies are each a unique equation the way of chronic illness looks on us will be very different. We may or may not carry similarities within our chronic illness categories, but fundamentally we are all so different. Our bodies all need to have a different formula to make the new normal ok.

Chronic illness is a powerful term that shapes this blog, but yet it doesn’t come in one form or look the same to anyone. Every single person that encounters chronic illness has their own map of how chronic illness affects their lives and senses. Some even have multiple chronic illnesses that somehow create a perfect storm in their bodies, which still pushes them throughout the day to find the new normal.

Nuanced Living is about exploring all aspects of life since chronic illness has such an effect on it.

 

Why is the journey with chronic illness so lonely?

Typically when we each of us start on this path, we often don’t know the outcome or what is even wrong with us. We aren’t really sure which other individuals have the same things to set ourselves amongst them. Once we are diagnosed we look for others with the same chronic illness. We seek these people and often crave them because we want to know that there is success within the journey that we are now stepping onto. We soon realize once we are within those categorized everyone is on a different part of the path and everyone has had very different journeys along the path.

So many people have gone through this path before, but it can be so lonely. As a result of our bodies being so uniquely different, it requires us to understand that we are on a path to get the best healthcare for our body and we need to make the best choices for our path, despite others. It is important to understand this is our process rather than get caught up in someone else’s process and not entirely be able to fix us. Simply put, what may work for one person will not always work for you.

Surrounding ourselves with support is so important, and so is knowing that this body is our own and we ultimately need to make the best choices for ourselves along this path, even if at times it does feel lonely.

 

Conclusion: What does the path with chronic illness look like?

To understand the basis of our journey comes in the form of general stages but also knowing that we all go through this journey very differently. Even though there are so many differences within each of our journeys we are still able to create a foundation for ourselves and constantly grow within our new normal so our path continues to be the best within its own elements, no matter how hard it may get.

 

My question for you!

What stage(s) do you feel that you are currently in?

 

T r u l y , L i n d y

 

 

photo source: @LindyJacoby