Welcome! ... What is it like to live with a chronic illness?

Dealing with any chronic health condition, and/or illness, can be a daunting task in-and-of itself. While there are numerous aspects that affect one's everyday functioning and survival, one of the greatest frustrations is the lack of understanding, compassion, and tremendous judgement experienced by an individual struggling with any chronic health problem. While it may be difficult to relate to someone who battles a chronic illness, it is so important for those on the outside looking in to make their best attempt to understand their loved one's challenges.

Several years ago my mother stumbled upon a wonderfully written document called "The Spoon Theory." This piece details what it is like to live with a chronic health condition in simple and relatable terms. In my opinion, it is a must-read for anyone whom is seeking to better understand what it is like to live in a body which is chronically ill.

Trust me ... this piece is enlightening and extremely insightful.

This blog is a commentary on my own very personal, and sometimes very painful and challenging journey, with chronic health conditions (including the auto immune diseases Psoriatic Arthritis & Ankylosing Spondylitis, Fibromyalgia, Hashimoto's Disease, Hyper-Mobility Syndrome, PCOS, as well as a spine condition called Spondylolisthesis), and the medical system. While I am not a doctor nor a medical professional of any kind, I am most definitely one very experienced patient! My hope is to share my gained knowledge and experiences with others who deal with similar issues.

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Tuesday, August 30, 2011

Just Surviving with Chronic Illness ... Lessons of Balance & So Much More

One of the bigger lessons I have been taught repeatedly while dealing with chronic illness is simple enough; it's a funny thing we call balance. Learning how to NOT overdo things when I do have the energy to accomplish everyday tasks and life's more complex challenges alike. And it's something which is so much easier said than done. Such anxious and frenzied rushes to "get things done," are specifically in attempts to make up for the wasted time which has gotten away from me, and that time slides away with great speed and ease, much like sand sifting through an hour glass, picking up speed with every passing moment. So much time and pure "life" feels wasted, robbed, and sadly forgotten, for lack of better words, during those all too common and frequent periods when I feel so horrible. This lesson has not been an easy one. It sounds so simplistic, yet for me, for whatever reason, it is so very complicated and a huge challenge. It's frustrating for sure ... it's even overwhelming at times. It seems as though every aspect of my life is fraught with this battle, and I cannot begin describe how very disheartening it can be. Even when it comes to writing, blogging and working on my websites, all things I love to do and bring me some sense of normalcy, success and productivity, I am faced with this ever present battle and I'm getting so very tired of it! Can you hear my pure and obvious irritation?!? LOL ... Yes, I believe I've thoroughly expressed it. And, I am fairly certain that you can relate to this internal tug of war as well. 

Plain and simple, I have been experiencing writer's block recently. And, while my life, and all of the battles within my war with the medical system, my body, my life and my health, continue marching forward, I feel even more frozen than usual. I feel this strange, and albeit, an unsettling combination of sensations where I have so much to say, so much to share, but no words to properly and completely express my many emotions and experiences. I want so desperately to use my life, and all of the things I have endured as a result of my health struggles, to be both a means of finding some sort of healing for my mind, body and spirit, as well as a vehicle to reach that ever elusive feeling of success, self satisfaction, and a greater life's purpose. While I am both encouraged and strengthened to see and hear so many other's stories similar in nature to mine, in some strange twist, I feel more defeated, unneeded, and no longer unique and special in what I have to contribute to this world. A strange jealousy factor without a doubt. One of which I feel guilt and confusion too.

You can feel so alone when you're chronically ill, especially when you're so young.  As a way of finding some hope and understanding, reaching out to others whom also find themselves similar circumstances, can be both empowering, in addition to ushering in some relief from that ever-present sense of loneliness. But still, even with the smaller victories, those "good days," the brief glimpses at the smallest peak of light near the end of the dark tunnel, even with the occasional cheerleader found in the most unexpected person, place and time, the sadness and uncomfortable silence is palpable. I guess one could say that I've been feeling somewhat depressed as of late. A state of mind and being which I am not one to admit so quickly. Perhaps I'd rather tell myself something different than what my inner self truly feels. Whether it's a way of remaining positive - a fake it til you make it type of thing. Or more simple in terms and listed as basic denial. Maybe it's more likely something of a combo platter. I am not entirely sure. What I do know is that it's a sense of melancholy and fear which I cannot seem to put my finger on. 

We all need something to look forward to, some excitement and joy in our lives, and when reviewing the last few years, I can securely state that the much needed sense of happiness, peace, excitement and/or thrill for life has been lacking in my world of simply surviving. Some days that "simply surviving" mind set is enough to consume me. I don't want that to be the case, nor do I look to make it happen, but it does exist. I find myself unable to look forward, maybe because I am still stuck wadding through my past. I try to just be in the moment, just make it through, making a conscious effort not to dwell on all that's been lost to the days gone, but also unwilling to gaze into the future, as I find myself overwhelmed by too many emotions to count. Other days, perhaps even the ones where I feel a little better, I feel so lost and scared, wondering if my life will ever be more than just surviving to another day. I think anyone who loses so much so young can relate to that kind of desperation. At least I'd like to think so. Whomever created the saying "sick and tired of being sick and tired" was very brilliant, as I am beyond sick and tired. 

We do have a tremendous impact on our own health, our body, mind, spirit, attitude, future's, so much of our lives and even a bit of others' lives as well. And while we can attempt to steer in a certain direction, as a simple fact of life, we do not have control and power over everything, in fact, we seem to have only a little power and control over a few things ... the rest, left up to fate, destiny, random events of reactions for each action, and a great many other beliefs, concepts, and philosphoies. I apologize, my intention for this post was not to get too philosophical, although for whatever reason, I am tittering on the edge of that broad, questionable universe. Anyways, my point was to transition to the subject of dreams and how they are clearly intertwined with my ever-evolving nutty life and existence. For a while I stopped having dreams, if not simply because I asked for just that - not to dream - as it was just too much on top of everything else. Funny thing to say and hope for, huh? Recently I began dreaming in my slumber once again, and strangely it's only increased my sadness. Perhaps because I am dreaming of things I wish I had, things I feel slipped through my finger tops, things I once nearly had as  a reality and lost with tremendous resistance, only to break my heart into tiny pieces for years to come. I often find myself thinking that when I'm better, when I feel normal, healthy, you know, like a normal human being again, I will be able to reach for those dreams, to heal those relationships, to have all I ever wanted, dreamed of (literally I suppose), and anticipated. Sometimes these visions bring me joy, promise, hope and inspiration, ... and then other days, it's quite the opposite, and I awake even more fearful, depressed, anxious and sad than before. I know dreams are said to be the mind and spirit's way of processing events and feelings in one's life, at least that's what I tend to believe. Some of those dreams feel so impossible now, so far away, so unlikely, and well, that only generates more sorrow to further envelope my already exhausted and lost being. 

This post was not created with the intention of being so solemn, but it certainly appears to have gone that path, doesn't it?!? As I've stated many times before, my hope for sharing my experiences and subsequent emotions here is with the desire to help others, to offer some hope, and even some true knowledge that if you're facing similar battles at this moment in time, you are not alone, even when it feels as though you are living in a deserted waste land of illness, loss, misunderstanding, hopelessness, and desperation for some real life. Not just a life where you are simply surviving to make it to the next day. I know my words, my attempts to touch others lives', is nothing close to that of a magical cure nor a fix for what you may be enduring at this very moment. I wish it was. I wish I had a magic wand. 

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About Me

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My interest for all things related to health & illness arises from my own struggles with chronic health conditions. I have found it most therapeutic & empowering to write about my many experiences within this realm. Through education, my own research, and my ongoing personal challenges, I am teaching myself how to become my own best advocate. To learn more about me, please see the page entitled "About Cat" located at the top of the page. If you have any questions or comments, you are welcome to contact me through the "about" section listed above, or email me at healthandillness@gmail.com. Please note that this address is also linked through my profiles. Blessings of health, energy and peace.

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