During the many years in which I have lived with rheumatoid arthritis, I have learned firsthand the importance of controlling the thoughts that often bounce around my head. Quite often, especially during my worst moments, telling myself that things will get better makes me feel…well, better. And telling myself that things will get worse will make me feel…you’ve got it — worse!
Now, I am in no way saying that I am denying myself the ability to connect with what is happening to my body, nor am I preventing myself the opportunity to experience the highs (yeah!) and lows (I believe that life is not about being happy all the time…) that often mark my days. What I am doing is accepting that being an optimistic realist is one of my most essential coping skills, when it comes to living with this disabling and chronic illness.
It’s easy to remove the obvious, major thoughts of self-doubt and self-blame (or at least it’s easy now, looking back on the past few years). What is a little more difficult is to recognize and eliminate the numerous little voices of non-support than present themselves all too often. Having focused on this finer level of negative thoughts during the past few months, I have been able to see a noticeable improvement in how I deal with the challenges that come my way. I feel much less stressed than I used to, and this in turn makes going through each day not only possible but even more enjoyable.
When I woke up this morning, I immediately knew that I was not going to go swimming. It wasn’t that I was in particularly bad shape; I just felt a little more tired than usual. So without so much as a second’s hesitation, I decided that it would be best to stay home and rest. I made this decision, and moved on with my day. No regret. No sadness. No unhappiness. It’s not like I’m going to stop swimming forever…it’s just that today was one of those days when I needed less physical activity, and more rest. Only this morning did I stop and realize that this was the first time I’ve made the decision to not exercise without feeling guilty, without thinking that maybe I should have just pushed a little more and gone through with my usual morning routine. Experience has shown me that some of my biggest setback were triggered by pushing myself just a little too hard.
Just a little over an hour ago, I experienced a pretty strong flare involving my hands, elbows, and shoulders. As the inflammation increased and my joints and muscles began to give out, I bundled myself up for the event (today is colder than usual) and selected some music (Chopin’s Nocturnes and Golijov’s Oceana) from my iPod to listen to. As I lost the use of my upper body, and as the pain once again peaked, I was surprised at how amazingly calm I was. No, not the “I need to calm my thoughts” state of being that so often accompanies the symptoms of my disease, but a complete and total calm. There were no thoughts of what I should or could instead be doing, no guilt about “resting”. Every thought that crossed my mind was one of 100% support for what my mind and body were experiencing at the time.
All of these feelings are new to me, as is my ability to remain calm during a flare (this is been one of my personal goals for more than a year now). And in certain ways, this newness is still a little bit uncomfortable to me. Not that I’m complaining though…I know that this is something that I can totally get used to!
I can’t eliminate my pain and disability, but I can get rid of those thoughts that don’t provide me the support that I need to continue moving forward!
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
RA: Ready For Action
With the help and support of friends and physicians, I am trying to look at the diagnosis of Rheumatoid Arthritis as an opportunity to learn and grow and not a condemnation to sit and decline.
Read More: http://ra-readyforaction.blogspot.com/
Inflamed: Living With Rheumatoid Arthritis
I’m from Minneapolis, MN and was diagnosed with rheumatoid arthritis in July 1997. The diagnosis was a shocking, devastating blow. The only person I knew who had RA was my grandmother who got it when she was in her 60s, I believe. Growing up I watched her struggle with great pain and become crippled by the disease. The day that I was diagnosed I remember going home from the doctor’s office and crying alone in my room thinking about my grandmother’s ugly twisted fingers and collapsed knuckles. Was that also my fate at age 18? I had been an active kid and teenager. I played basketball, fastpitch softball, tennis, and just really enjoyed being physical and running around outdoors. I also played the piano for nine years and loved to paint and draw and create art. I dreamed of traveling the world and doing so many things. Now with the daily debilitating pain of RA, I felt helpless and alone. How could I possibly live these dreams when I could barely take a shower or get dressed on my own? It didn’t seem fair.
Read More: http://inflamed.wordpress.com/
I Don’t Know…It’s A Mystery!
I’m a 20-something girl who grew up with Rheumatoid Arthritis. Now I’m married, we have two kitty children and I get myself into all sorts of shenanigans. This blog is about those shenanigans.
Read More: http://lydaclark.blogspot.com/
A Steadfast Love
I am a 40 something mother of three college aged sons. I enjoy spending time with sons when their schedules permit. One of my favorite places to be is in the kitchen baking. The fragrant smells radiating from the kitchen are always comforting and welcoming. I am also a person who lives with an autoimmune disease called Rheumatoid Arthritis. It is a debilitating and often painful disease with no cure. I am so thankful for my Heavenly Father who comforts me when no one else can. He gives me strength when I do not have any left. He surrounds me with His peace that passes all understanding.
Read More: http://cammieskitchen.wordpress.com/
Hi, I’m Kelby! It’s nice to meet you and thank you for visiting my blog. I’ve been diagnosed with ankylosing spondylitis for 11 years now and have been on Remicade for 10. If I don’t get my Remicade every 4 weeks, I end up in excruciating amount of pain. Other than that I’m technically in ‘medical remission’.
Read More: http://peacheyplanner.wordpress.com/
I have mixed connective tissue disease. For me this includes Lupus, Rheumatoid Arthritis, Scleroderma, Polymyositis, and Raynaud’s. Just so my nervous system didn’t feel left out I also have peripheral neuropathy. Osteoporosis too. But stick around because this list tends to grow!
Read More: http://autoimmunegroupies.blogspot.com/
About me… Well, I’m a stay-at-home mom of two children. My son is getting ready to start pre-school and my daughter is just beginning to toddle. I’m married to my high school sweetheart. He’s a little goofy sometimes, strong others, and I wouldn’t have it any other way! A little competitive by nature, I enjoy challenging myself and coming out on top. One of the biggest challenges I’ve been faced with is Rheumatoid Arthritis. These days, I do my best to not let it get in my way. I love to be on adventures and try to figure out mysteries. Tending to be a little more on the analytical side of things, I believe there always has to be a reason for everything or it doesn’t make sense. Somedays, I wish I could shut this part of me off. Then again, I don’t think I could be me without it!
Read More: http://dreamzncolor.wordpress.com/
Lissa Rachelle Robillard
I am an Artist. I am a wife and mother. I am a self-seeker. I have RA but am not defined by it and I believe that anything worth doing,is worth doing with passion!
Read More: http://lissarachelle.com/
Young Arthritis Network
No matter how many time’s I’ve seen my rheumy over the years I still leave disappointment and please don’t get me wrong my rheumy is fantastic he’s given me a new lease of life but I always leave feeling deflated. I ask myself why I fell like this? Is it because for many years I was told I would grow out of JA ?Do I expect too much?Or maybe I forget my rheumy is not god he doesn’t have all the answers or at least the one I’m looking for the big C – Cure . Am I alone in feeling like this ???
Read More: http://youngarthritisnetwork.blogspot.com/
The Raw Food Cowgirl
I am an artist/photographer, animal lover, horse breeder, organic gardener, wife, and mother. In 2007 I became a RAW FOODIST with the hope of curing my rheumatoid arthritis and fibromyalgia. Within months I was able to quit all pharmaceuticals. My chronic pain was significantly reduced and I lost 70 pounds. This is my continuing story.
Read More: http://www.rawcowgirl.blogspot.com/
“I was diagnosed with Rheumatoid Arthritis in 2008 and started this portrait project of people who have RA and other autoimmune diseases as a way to cope with my illness and spread awareness about invisible illnesses. My hope for this project is to show the world that there are a lot of younger people out there who are dealing with complicated and often painful chronic illnesses. Also, I think it is so important for the newly diagnosed to be able to see all of these beautiful, happy faces and know that they are not alone.” -Jodi McKee
If you are interested in participating; please contact Jodi.
About half a year ago, I was in really bad shape. My rheumatoid arthritis was out of control, and I could barely move. Seemingly simple things, such as taking a bath or walking around the house, started to become almost impossible. Mentally, I struggled…but I continued to stay strong. I’ve learned from experience that losing hope, especially during the middle of a severe flare, makes coping with the pain and disability even much more difficult that it already is.
And no matter how many pills or shots I took, I experienced absolutely no pain relief. I started to get a little anxious…how could I possibly cope with this overwhelming pain, all on my own? So instead of getting scared, I decided to turn those words on their head, and do exactly that. Learn how to deal with the pain. All on my own.
Now don’t get me wrong, my aim was not to be some sadistic Stoic. I had previously tried many, many different options in an attempt to reduce my pain. And when the pain didn’t go away, I found myself experiencing more despair.
So part of my thinking, months ago, was to focus my thoughts and energy on full acceptance of my chronic pain. The more I thought about it, the more I realized that my stress and unhappiness were not related to actually dealing with the pain that was present, but were a result of the fact that this pain would just not go away.
Living Beyond Your Pain: Using Acceptance & Commitment Therapy to Ease Chronic Pain
A rich and rewarding life is possible for those of us who live with chronic pain. Based on acceptance and commitment therapy (ACT), one of the most promising and fastest growing psychotherapies being practiced today, this book breaks with conventional notions of pain management.
These “feel good” approaches—including the use of pain-killing medication—all work to prevent painful sensations. The ACT approach, however, begins with the assumption that pain is a normal part of living that teaches us a lot about the state of our bodies and minds. Attempts to avoid it often cause more harm than good.
By accepting and learning to live with pain, you limit the control it exerts over you. Mindfulness exercises, in particular, help you transform pain from a life-defining preoccupation to a simple experience. From this strong position, you can make choices that will lead to the life you’ve always wanted. Committed action is the way to make it happen.
This morning as I was swimming (an hour in the pool gives me a lot of time to think), I realized just how far I’ve come in terms of accepting my chronic pain. While I know that acceptance is a process that never ends, just the fact that I was there exercising on a cold winter day showed me that I have indeed learned how to live beyond my pain.
A couple of weeks ago I pulled out my copy of Living Beyond Your Pain and quickly read through the chapters. As I moved through the book, which is structured as a self-help workbook, I was struck with how much sense there was in its text. Compare this with my first reading, years ago, when I was intrigued but still absolutely horrified that chronic pain is exactly that…chronic, and that one of the best coping mechanisms is to accept it, incorporate it, and live beyond it.
And the fact of the matter is that even though so many aspects of chronic pain remain outside my control, how I react to this pain is something that has and will always be within my control. By learning this, not just in my head as I did the first time I read this book, but in my entire being as I have come to do so over the past few months, I have realized that by accepting and learning to live with my chronic pain, I have been able to limit the control that it previously exerted over my life.
I live with chronic pain and disability, and I also feel great. These things are no longer mutually exclusive in my life, as they once were.
Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!
New World Report Shows More Than 1 Billion People With Disabilities Face Substantial Barriers In Their Daily Lives
9 JUNE 2011 | NEW YORK – The World Health Organization (WHO) and the World Bank today revealed new global estimates that more than one billion people experience some form of disability. They urged governments to step up efforts to enable access to mainstream services and to invest in specialized programmes to unlock the vast potential of people with disabilities.
The first-ever World Report on Disability provides the first global estimates of persons with disabilities in 40 years and an overview of the status of disability in the world. New research shows that almost one-fifth of the estimated global total of persons living with disabilities, or between 110-190 million, encounter significant difficulties. The report stresses that few countries have adequate mechanisms in place to respond to the needs of people with disabilities. Barriers include stigma and discrimination, lack of adequate health care and rehabilitation services; and inaccessible transport, buildings and information and communication technologies. As a result, people with disabilities experience poorer health, lower educational achievements, fewer economic opportunities and higher rates of poverty than people without disabilities.
“Disability is part of the human condition,” says WHO Director-General Dr Margaret Chan. “Almost every one of us will be permanently or temporarily disabled at some point in life. We must do more to break the barriers which segregate people with disabilities, in many cases forcing them to the margins of society.”
“Addressing the health, education, employment, and other development needs of people living with disabilities is fundamental to achieving the Millennium Development Goals,” says Robert B. Zoellick, President of The World Bank Group. “We need to help people with disabilities to gain equitable access to opportunities to participate and contribute to their communities. They have much to offer if given a fair chance to do so.”