Loving Yourself #AtoZChallenge

Loving yourself     #AtoZChallenge

As a general rule, loving yourself is a necessity of life. Not the egomaniacal form of loving yourself mind you. But the kind of love you hold for yourself regardless of your physical abilities or health. The kind of love that permits you to not be perfect, providing you are doing your best in the given circumstances and situation. When you are chronically ill it can become a challenge to love yourself, and this is when you must do so more than ever.

When you can no longer do the things you used to, whether for work or pleasure, we tend to be harder on ourselves than others. When you don’t get the feeling of fulfillment from being good at your job, let alone being able to perform your job, we can wind up beating ourselves up emotionally. When you are faced with seemingly insurmountable challenges, it is easy to become overly hard on yourself.

More than ever before we must learn to put ourselves first in order to best take care of ourselves both physically and mentally. When we fail to realize that our body has new restrictions or needs, and we push past those so-called safe limits we wind up abusing our body instead of respecting it. While embracing the changes we face, and grieving the loss of our former selves, we can tend to internalize the negative emotions. This is detrimental in the obvious emotional aspect, but also physically as it can manifest into physical symptoms and complaints.

When facing a major medical event, it is more important than ever to all yourself to be human. Permit yourself to grieve your former sense of self, whilst creating a new one founded on your current limitations. Perhaps you are unable to physically perform in the way you have become accustomed. While certainly tragic, you are no less of a person than you were before. You must find the way in which you can still feel useful. Can you use your previous experience to create positive change in an industry? Can you use the knowledge and training towards educating others?

We must embrace who we have become, including any limitations we may have, and allow ourselves to be human. If you have a bad health day, allow your body time to rest without emotionally beating up on yourself for something that a is outside your control. Permit yourself a mental health day to step back and regroup should you need to do so. Then when you’re ready, get up, set your sights on a reasonable and attainable goal, and do your best to accomplish it. If you complete it, celebrate your victory!

What happens if you feel like you’ve failed you may ask? Well, you celebrate your attempt to accomplish it and realize that some things are out of our control. However, how you treat yourself is not only within your control, but it is a skill you must learn to use properly. If you need help to learn or re-learn how to effectively practice self-care and love yourself, there are a wide variety of resources available to you depending upon your situation and beliefs. Reach out to your primary care physician, a physical therapist, psychologist or even your clergy. There is no single right way to do this, we must each learn what works for us, and it is often a process based upon trial and error.

Do you have an experience regarding learning to love yourself again after an illness or injury? Share your experience below so that others may learn from it as well. We’d like to hear it!

Kindergarten? Relearning How To Live After a Life-Altering Diagnosis #AtoZChallenge

Kindergarten?      Relearning How To Live After a Life-Altering Diagnosis     #AtoZChallenge

When one learns of the diagnosis a significant chronic illness or injury, oftentimes they must learn the basics of life again. What do I mean, you may ask? Let me try to explain.

In kindergarten learn how to live and function among our peers and in the world as a whole. We learn increased balance and movement, more effective communication skills and how to use words to convey our thoughts appropriately. We learn how to work and play well with others. We learn the importance of self-care through naps. The last one may sound silly but bear with me.

When we are diagnosed with a life-altering illness or injury we are suddenly faced with a number of challenges. First, we need to learn how to live and function again, given our new situation and our new limits on our ability to function as we have become accustomed since we were young children.

We must learn to communicate with both our peers as well as those who are charged with our care. We must learn to do so in a clear, concise, way. While we are trying to learn how to communicate things our mind and body have never fathomed before, we must also learn to do so in an entirely new language. A language whose subtleties often elude those who have studied it for years to become the professional charged with your care. Not only are we, as patients, expected to learn and use it proficiently, but one without so much as a tutorial, Rosetta Stone, or even Cliff Notes. Further, our family and friends who participate in our care are also required to learn it, and use effectively use it to help us describe our symptoms that frequently even our physicians fail to understand fully.

We must become experts at pleasing our caregivers in order to achieve an appropriate diagnosis, treatment, and care. While we may become so frustrated with our inability to communicate the symptoms that we don’t truly understand how to describe, we may become so extremely frustrated that we feel like throwing a tantrum. However, we learned in kindergarten that this behavior is not appropriate nor acceptable. Pleasing our caregivers can apply to submitting to treatments you may not want in order to be able to rule out the provisional diagnosis so that you can get back on track towards finding the proper diagnosis.

We must deal with the very real loss of many of our former friends who fail to have the capability to understand or deal with our current medical situation. We must further learn how to make new friends who not only accept us as we are but often have a firsthand knowledge of our predicament. We must learn how to deal with the frustration, anger, denial, and flood of other negative emotions through constructive means. These may consist of talk therapy, biofeedback, stress management, or even such things as art or music therapies. This consists of learning a whole new way of life. A life we learned how to live when we were young children. Now, it seems, very little of that pertains to your new life.

All of the things we once took for granted as normal from a very young age, suddenly seem to have little bearing in our lives. Suddenly we find ourselves struggling both emotionally and physically to function from one day to the next. Then as if the injury isn’t enough, we are further insulted by being unprepared to manage our health in a system that requires us to be our own best advocate by doing our own research. This is one of the primary reasons I am so passionate about patient self-advocacy and empowerment.

Do you have a story you’d like to share about how you adapted to a new lifestyle after a life altering diagnosis? Please let us know in the comments below.

Just Don’t Say It! #AtoZChallenge

J is for Just Don’t Say It! Think before you speak!

There are times in our lives when we may hear distressing news from or about someone who we care about. At those times our natural reaction is to say something comforting to the person sharing this information with us. However, in an attempt to be caring and supportive, people may unintentionally say things that wind up being totally inappropriate for the given situation.

It isn’t that they don’t care. Conversely the opposite is often true. It is often a matter of being overwhelmed with the severity of the situation and having no clue what to say, but desiring to show support in a very difficult situation. Below we will see some of the common responses to situations, that often leave the person to whom you are speaking feeling more frustrated than comforted.

When hearing of a devastating illness, injury or diagnosis that will result in chronic health challenges don’t…

Say “Feel better soon!” – They likely will not get any better!

Say “It could be worse!” – They know it could, but to them this is as bad as it gets!

Say “I’ll let you focus on your health, and we can catch up when you feel better.” – By saying this you imply that you aren’t there for them during the difficult times

Say “Well at least you can still” <insert anything here>. – This undermines their legitimate feeling of loss.

Say “Things will get better!” – Especially when the person obviously is experiencing a permanent disability such as paralysis, or worse yet a terminal illness. (Yes I’ve seen it happen firsthand!)

Of course, these are only a few simple examples that come to mind to try to emphasize the importance of thinking before you speak. When in doubt as to what to say to someone about a situation, simply try being honest. Try explaining that you really don’t know what to say at the moment, but that you care and will be there for them (and in support of them). But if you make this offer to be there for them, you must be able and willing to follow through on your statement.

I could write tens of thousands of words on this subject, but for the interests of keeping this post relatively short for the #AtoZChallenge, I have chosen short, simple examples that will hopefully be relatable for the greatest number of people.

What are some of the sayings you’ve heard that have affected you? Please share with us in the comments below.

Inspirational #AtoZChallenge

I is for Inspirational

I can’t tell you the number of times I’ve been told how much I inspired someone to be better in their life. This applies to healthcare practitioners, other chronically ill people, and your average person you might see walking down the street. I appreciate the kind words, and it is nice to hear someone say something positive for a change. But to be honest, I just don’t see myself that way.

See I don’t envision myself as being that special. I do what I do because it is who I am. I’ve always been what some call a giver. Years before I even graduated high school, I joined emergency services. Not because of anything other than I wanted to help people, and I loved doing it. I was lucky enough to have a career in pre-hospital emergency medical services for many years before being diagnosed with a chronic and debilitating illness.

After my first (of many) diagnoses I promised myself I would find a way to continue helping people in spite of my illness. I became involved in a local support group for those with the same diagnosis. I began researching everything I could to not only help others but to help myself in the process. From the same early age, I was involved in volunteer emergency services in a variety of roles. All of these roles were rewarding, and I enjoyed each one in their own way. And I consider myself very lucky to have made a difference in more than one life along the way of the last few decades.

Others may see this as me being an inspiration to them. However, all I see is the fact that I have something to give, and in an effort to make sense of my own life and help others along the way, I plan to give just as long as I am capable. My ability to give has been severely hampered by physical restrictions of late, but I still have lots to give. I just don’t see how that makes me special.

I’m just another guy who is too stubborn (or stupid) to quit, lay down and die!

Has anyone ever called you an inspiration? How did it make you feel? What were your thoughts? Please share with us in the comments below! We’d love to hear from you!

Hopeful vs Hopeless #AtoZChallenge

H is for Hopeful vs Hopeless

For anyone battling a chronic illness, there is a fine line between feeling hopeful versus feeling hopeless. This line may well blur depending upon the day, the severity of the symptoms that day, and the overall quality of life. I’d be lying if I said I have never experienced even the slightest bit of hopelessness. It is what we do with that feeling when it arises, that determines what happens next.

When we hurt so bad we can barely manage to get out of bed to go to the bathroom, and there seem to be more days like this than not, it is very easy to feel hopeless. When you can’t make food for yourself because you are unable to stand to do so, it is easy to lose hope. When you are unable to bathe yourself or feed yourself, it is easy to feel as if all hope at life as you knew it is gone. If left unaddressed, feelings of hopelessness can spiral down a rabbit hole that has no return. It is important to acknowledge these feelings and discuss them with your family, friends, and caregivers. You are not alone in this battle, and the more people you have on your team, the better you will be.

The phrase that is the key, I believe is “life as you knew it”. Whether we like it or not, if we are facing a chronic illness, our life as we knew it before illness has little bearing on who we will become with the illness. The key to discovering how to remain hopeful is to embrace your limits, learn how to manage within those limits as best you can and continue to grow as a person. While we will have those moments or even days where nothing will make us feel better, it does not have to consume you.

“Losing hope is not a sign of mental illness. It is a sign of being human”. Dr. Charles, Psychiatrist, Chicago Med Television Show. Episode “Prisoner’s Dilemma” aired 22 February 2017.

What you do if you do lose hope, is what determines where you go from there. How do you battle the hopeless feelings when they occur?  What is your secret? Share with us in the comments below!

Giving in vs. Giving Up #AtoZChallenge

G is for Giving In vs Giving Up     #AtoZChallenge

When we are challenged with a chronic health issue, it is normal to have doubts as to the new normal of your life. With a new diagnosis often comes a plethora of uncertainty, which can shroud our minds in confusion. This is both expected and quite normal. However, it is imperative that we remain cognizant of the challenges we face as we or someone we love adjusts to a new health issue. [To be clear, for the purpose of this article giving in refers to acknowledging the need to adapt, and giving up is a permanent decision.]

Sometimes we are faced with choices in which we must essentially give in and realize that things will not be the same after a diagnosis. This is despite what we may want most in life. At this point, we must decide if we are willing to adapt (give in) to our new diagnosis and its’ limitations, or if we simply wish to give up on life as we know it. When considering all the available facts with which you make your decision, you should involve your health care professionals and those closest to you. I would be lying if I said there was one right answer, for it is an extremely individual decision process, based on the health information available to you.

Giving in means you can adapt, overcome, and excel despite your limitations. Giving up means you hold no hope whatsoever of any quality of life. Giving up is the last resort, and I encourage all of you to regard it as such. With technology and medicine advancing as rapidly as it is, there are many viable options to improve your quality of life, and subsequent happiness, despite your illness. Giving in means embracing your current health, and choosing to make the necessary changes to continue.

Unless you are faced with a terminal or other permanently hopeless situation, I urge everyone to make the conscious decision to try everything humanly possible to adapt to your situation and continue living to the extent allowed by your health. I’m not saying it will be easy, but I promise you that once you make it through the initial adjustment phase, it will become easier. It will also be extremely rewarding as you discover new passions and opportunities that will present themselves to you as you progress through your journey.

F is for Keep Fighting! #AtoZChallenge

F is for Keep Fighting!     #AtoZChallenge

When facing a chronic health issue it is easy to lose the determination to fight at times. Many of us display great fortitude when fighting chronic illness. We don’t necessarily do this because we are any better than anyone else. We do this because this is all we know. We keep fighting for the next potential treatment, or if we are truly lucky a cure. We often fight one day, week, or month at a time, just trying to make it until the we make it through, or are faced with another challenge in addition to the one we already had.

Many people who battle chronic illness are faced with more than one diagnosis, or even side effects of the treatments aimed at improving our quality of life. Occasionally even the most steadfast warriors experience a rough day. During such a day it is not unlikely that they will question the quality of their life. Keeping it in perspective it is often a matter of making sure the positive aspects of their life outweighs the negative.

It is during these times that even the strongest of us can find that we wonder if it is worth the fight. Wondering if it is worth it is not a sign of weakness. In reality, the strongest among us will eventually have a bad day or period of time in which we can’t help but wonder. It is what we do when we experience these difficult times that determine both how we react and how we will come through the tough times. Realizing that tough times happen even to healthy people, should help to keep things in perspective.

The defining moment for us is not how we battle daily life, but how we face the challenges in our low points. By focusing on the positive and realizing that the low points are temporary you can get through almost anything.

What do you do to get through the extremely challenging times in your life?  Share your story with us below, and most importantly, keep fighting!

E is for Being Excited About Life! #AtoZChallenge

E is for Being Excited About Life!     #AtoZChallenge

So you or someone you care about has a chronic illness. It isn’t the end of life as you know it.

Remember the excitement for life that you had before you got sick? You can have that again! Just because your health has changed, maybe even drastically, does not mean all is lost.

Today, more so than ever before, technological advances have enabled even the most limited in physical activity to remain at the very least mentally active. So if you have the desire, there are lots of things you can do to remain active and yes, even passionate about life!

Without going into specific examples based on your previous level of knowledge and expertise in any given area, there are still a variety of things you could do to occupy your mind and your time. You could use your previous knowledge to educate others. For that matter, you could use your current situation as a catalyst so that, when you are ready, you can share your experience with others. You could decide to pursue further education and new career goals.

Maybe you are not only chronically ill but also suffer from the effects of chronic pain as I do. If you find yourself unable to hold regular employment, all is still not lost. There are still plenty of ways you can continue to feel like you have something to contribute. Even something as simple as becoming a volunteer in a facility or unit that made a difference for you.

While maybe that isn’t as fulfilling in your mind as employment, I can tell you that there is something quite as fulfilling as being able to give back to those that have taken the time to help you when you needed it. Remember when you were at the worst possible point in your health and someone took the time to stop and talk with you? Remember how good it felt that someone actually cared who maybe didn’t need to, in the aspect that they weren’t being paid to do so? You can be there for someone else. Maybe you encounter a patient who could draw inspiration from the fact that you had been where they currently are, and you prevailed.

Become excited about life again!

Have you found a new purpose in your life after health issues? Share your story with us below!

D is for: Denial to Discovery

D is for Denial to Discovery

A common reaction to any real or potential major change in one’s health or life often begins with denial. Denial of the very existence of said matter. Denial that this could, in fact, be happening to you. Denial that things could even potentially be as serious as even the best case scenario you can envision, not too mention the worst case scenario. Denial is often tied closely to bargaining, depression, and a whole host of other emotions. But once you work through this, and come out the other side, you can begin the process of discovery.

Discovery of what your life will bring with the newfound knowledge of your situation. Discovery of how you will go on, and continue to move forward. Discovery of how you may well be able to live a full and happy life despite, or in spite of, the event you initially felt would end life as you know it. Discovery can be a huge motivator in pushing through the challenges in front of you.

It doesn’t have to be a life-altering event or illness. Maybe you have a boss at work that is making your life a living nightmare. So much so that you don’t even want to get up to go to work each day. By determining what is important to you, and what you can do to impact the effects of any challenge, you can begin to discover how to conquer that challenge. Is this boss someone you can strike some sort of happy medium with to coexist? Or do you feel it is time for you to move on and find another job? By simply answering this question for yourself, you can begin to discover what you will need to do to move through, and eventually past this challenge.

In the aspect of a healthcare crisis, once you discover that you are still the same person, with the same qualities that made you a good person to start with, you will begin to find your way through. I’m not going to lie to you, it may not be easy. You may have to adjust your sights due to limitations on your health. But, you can work through it! When in doubt, feel free to seek out support resources, whether it be your physician, a professional counselor, or even your clergy. You don’t have to go through the process alone.

Do you have a story of discovery you’d like to share? Tell us about it in the comments below, we’d love to hear it!

C is for Compassion

C is for Compassion

Compassion, as defined by Merriam-Webster, is the “sympathetic consciousness of others’ distress together with a desire to alleviate it”. Or in more simple terms, “it refers to both an understanding of another’s pain and the desire to somehow mitigate that pain”.

Compassion is often an undervalued trait in people as a whole, especially true in the field of healthcare. I’ve had some wonderfully compassionate and caring nurses, and physical rehab specialists of various disciplines, and physician assistants. These people were able to make a very challenging and difficult situation much more tolerable by the seemingly simple act of compassion.

But it really isn’t a simple thing. Some practitioners I’ve encountered, mostly very competent ones, had an apparent lack of ability to show compassion or basic caring for another person. To these few, I was simply a medical challenge placed in front of them upon which to practice their particular healthcare craft.

While these people seem to be the exception to the rule, I find it distressing that anyone in such a caring profession could be without the ability to care about their patient as a human being vs. an illness or disease. These few function as robots who take input in the form of symptoms and spit out a diagnosis in response.

Are we to blame for this, or is an inherent lack of ability to feel for their patients? Is it a result of the demands placed on our healthcare practitioners by an extremely taxed and highly regulated system of medicine? Did they somehow lose their compassion in the bureaucracy of our healthcare system which seems to be run by the insurance companies rather than sound medical judgment? Or have they simply shut off their emotions in an attempt to survive in the sea of healthcare battles they find themselves in on a daily basis?

This article is neither an attack on our healthcare system nor what may or may not be wrong with it. Rather it is simply some observations based on real life experiences that beg for these questions to be answered.

Share your thoughts, with us, below.