How NOT to Treat Yourself When Chronic Illness Strikes

Despite this culture’s obsession with good health, people get sick.
Published on July 12, 2011 by Toni Bernhard, J.D. in Turning Straw Into Gold

In 2001, I got sick with what the doctors initially thought was an acute viral infection. I have yet to recover. Diagnosis: Chronic Fatigue Syndrome—a little-understood illness that is as debilitating as its more justly named cousins that also compromise the immune and neurological systems. My case is particularly severe. I feel as if I have the flu without the fever—24/7. It is so disabling that I was forced to give up my beloved career as a law professor.

At first, I blamed myself for not recovering, as if it were a failure of will, somehow. In addition, I was embarrassed that I wasn’t the picture of good health. This sometimes led me to hide my condition, often to the detriment of my health because I’d fail to take action to care for myself properly.

These two reactions—blaming ourselves for our health difficulties and hiding them from others—are not surprising, given the barrage of media stories and advertisements telling us that good health is within our control: we need only exercise, eat right, and get enough sleep. This simply isn’t always the case. We’re in bodies, and bodies are subject to illness, injury, and aging despite our best attempts to follow these “prescriptions” for good health.

Read More: http://www.psychologytoday.com/blog/turning-straw-gold…

How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

HowToBeSickThis life-affirming, instructive and thoroughly inspiring book is a must-read for anyone who is—or who might one day be—sick. And it can also be the perfect gift of guidance, encouragement, and uplifting inspiration to family, friends, and loved ones struggling with the many terrifying or disheartening life changes that come so close on the heels of a diagnosis of a chronic condition or even life-threatening illness.

The author—who became ill while a university law professor in the prime of her career—tells the reader how she got sick and, to her and her partner’s bewilderment, stayed that way. Toni had been a longtime meditator, going on long meditation retreats and spending many hours rigorously practicing, but soon discovered that she simply could no longer engage in those difficult and taxing forms. She had to learn ways to make “being sick” the heart of her spiritual practice—and through truly learning how to be sick, she learned how, even with many physical and energetic limitations, to live a life of equanimity, compassion, and joy. And whether we ourselves are sick now or not, we can learn these vital arts of living well from How to Be Sick.

More Info: How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers (Amazon.com)

The author, Toni Bernhard, can be found online at www.howtobesick.com

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Joseph Bayliss

Joseph Bayliss

Real Profiles of Rheumatoid Arthritis
Real-Profile-Bayliss-Joseph
Photos © Joseph Bayliss

Name?

Joseph Bayliss

Age?

22

Location?

Dudley, United Kingdom

How long have you lived with RA?

While I wasn’t diagnosed until I was 10 years old, I’d had severe aches and pains in my legs since I can remember. Though we always put it down to ‘growing pains’. It simply never occurred to me to ask why I was the only boy who was in immense pain after a kick around or when we played soldiers in the school playground. It wasn’t until my right knee swelled up badly one day that I and my family started to worry. Unfortunately it took nearly a full year going from hospital to hospital until I was diagnosed with juvenile rheumatoid arthritis at the Birmingham Childrens Hospital. I have found it difficult to live with it ever since.

What advice would you give to someone who has just been diagnosed with RA?

Seek out fellow sufferers! The internet is wonderful for seeking out help and advice from people in the same situation as you, with the exact same feelings and physical challenges. Learn to understand the mental challenges that come along with any form of chronic condition, especially when chronic pain is involved. Find a good rheumatologist! Do your research, thanks to great sites such as RA Guy’s site, trustworthy information is just a click or two away.

Do you use any mobility aids?

I use a walking stick(s) quite often due to both pain and an inability to walk when the condition is at it’s worse. I sometimes use knee pads to both protect my knees and calm things down, they actually work surprisingly well. Had a stair railing fitted to help me with getting up and down stairs.

How has living with RA helped to improve your life?

Hmm, that’s a difficult one. I’d say I’m more understanding of the limitations and challenges disabled people suffer from and care a great deal about them. I appreciate a comfortable seat more then most, same can be said for baths.

Do you have any visible signs of RA?

Thankfully I currently have little serious disfigurement and the only signs of surgery are two small holes in my knees where cameras were used to inspect inside the joint.

Can you please describe some of your favorite coping strategies for living with RA?

I struggle to live with this condition daily, so I’m certainly no expert on coping with it to well. But I’d recommend writing down your feelings daily to help you mentally get a grip of matters and will help you understand your pain and the best ways to cope with it. Become part of a social environment where you can discuss RA, this can be locally or of course on the web, there are many great sites out there but it’s good to interact with people who simply understand. A weird one, but I’m a fan of self-hypnosis and it might be worth checking out.

Can you please describe your current medical (traditional and alternative) treatments?

Currently take Celebrex Celecoxib. Been doing the usual physical exercises to help the joints and muscles. Take painkillers to help with the immense pain, not sure where I’d be without them.

Is there anything else about yourself that you would like to share?

Yes, I’ve struggled with handling RA both physically and mentally. I’ve had spells of depression and even other related symptoms such as panic attacks and anger attacks. I think it’s important that those newly diagnosed are told about the mental challenges that RA can bring let alone the physical troubles. RA is as confusing to those who suffer from it as those who do not, so helping people understand this condition should always be of importance to anyone who is in such a situation. Don’t be afraid to ask for help, especially when it comes to doctors and specialist who will more then happily ignore you if you don’t speak up for yourself. Oh and stay strong!

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National Suicide Prevention Lifeline Is Featured In Marvel Comic “Captain America: A Little Help”

CaptainAmerica_ALittleHelp“Super heroes fight a lot of battles, but there are few more important than combating suicide,” said Tom Brevoort, Senior Vice-President of Publishing. “That’s why we’re making Captain America: A Little Help available for free via our digital comics outlets. If even one person calls this number instead of doing something very tragic, we know that means we succeeded.”

You can access the comic here

NSPL_Logo_ThumbThe National Suicide Prevention Lifeline 1-800-273-TALK (8255) is a 24-hour, toll-free, confidential suicide prevention hotline available to anyone in suicidal crisis or emotional distress. By dialing 1-800-273-TALK, the call is routed to the nearest crisis center in our national network of more than 150 crisis centers. The Lifeline’s national network of local crisis centers, provide crisis counseling and mental health referrals day and night.

More Info: http://www.suicidepreventionlifeline.org/

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RA Awareness: How To Submit A “Real Profile Of Rheumatoid Arthritis”

Just as all of us have the power to raise awareness of Rheumatoid Arthritis, we also have the ability to create an accurate depiction of the people who live with rheumatoid arthritis. Young and old. Male and female. Recently diagnosed and long-time RA veterans. There is no one “typical” representation of this disease.

Some of us have no visible signs of our illness and might often be told “but you don’t look sick!” Some of us might have crooked fingers and other damaged joint. Some of us use different mobility aids in order to get around. Some of us have physical scars from joint replacement surgeries.

Read and share some of the current Real Profiles of RA, or consider submitting your own. Let’s show the rest of the world what RA Superheroes really look like!

How To Submit A “Real Profile of Rheumatoid Arthritis”

1. Photos: Please submit 5-10 digital photos. I will collage these together. Photos of mobility aids, surgery scars, or any other aspect of living with RA are more than welcome, as are childhood photos and family photos. You will retain the  copyrights on all images submitted as part of this profile.

2. Questions:
Please submit answers to the following questions. If you prefer not to use your full name, free to use only your first name, initials, nickname, etc. If you would like to include a link to a Facebook page or personal blog, please let me know!

  • Name?
  • Age?
  • City?
  • How long have you lived with RA?
  • What advice would you give to someone who has just been diagnosed with RA?
  • Do you use any mobility aids? If so, please describe.
  • How has living with RA helped to improve your life?
  • Do you have any visible signs of RA? If so, please describe.
  • Please describe some of your favorite emotional coping strategies for living with RA?
  • What are your current medical treatments – traditional and otherwise – for your RA?
  • Is there anything else about yourself (need not be RA related) that you would like to share?

3. Please send the above items to rheumatoidarthritisguy[at]gmail.com.

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The Joy Of 6 Foot Band-Aids

Superman BandagesA couple of days ago, I told my physical therapist that my condition had to get better the following day, because if it got any worse I didn’t know how I was going to be able to handle things. As soon as the words left my mouth, panic filled my mind. There was a real possibility that I would indeed feel worse the following day, and if that was the case I had to be prepared for it. There was no sense in declaring defeat before something happened. I for one didn’t want to be that financial news reporter who declares that stocks have reached their low, only to have the drop precipitously the next day.

And it was a good thing that I started preparing myself mentally should things get worse, because that is exactly what happened during the following 36 hours.

Last night while I was sleeping, the pain was so bad that I was fully aware of it. Imagine (and I know that many of us have experienced this and don’t have to imagine it), being completely asleep yet completely aware of the intense pain, all at the same time. (This wasn’t the first time that this has happened.) And at a certain point, I just started crying…crying in my sleep. I was shaken awake, and told that I was having a nightmare. It’s funny, I thought…nightmares often result from thoughts that take us to someplace scary that exists only in our minds. What I was experiencing wasn’t a nightmare at all. In this instance, it was my reality

This morning I woke up, with images of 6 foot band-aids filling my head. Wouldn’t that be the best thing ever, to just wrap myself with one huge bandage from head to toe! (Although Elisabeth on Twitter did mention, what would it feel like to peel of such a thing? Ouch!) As I sat down to eat my breakfast, the pain once again began to take over. And I thought to myself, that yes, being in a flare is in many ways like being trapped in a nightmare. As often as I’ve gone through this before, there are times where it just seems like too much to handle, and I begin to wonder how I am possibly going to get through the day with so much pain and disability.

Fear.

As much as I try not to provoke such fear with thoughts that remain under my control, sometimes it just seems to appear out of nowhere, in a heartbeat. And the fear doesn’t just make itself present. It wraps itself around you, and makes you feel like you are drowning.

But I’ve learned that during these moments, I have two options. I can be consumed with this fear, and allow it’s grip hold over me to strengthen. Or, I can try to trick my mind. And no, by trick I do not mean that I should deny or avoid the situation that I am facing. Just the opposite, almost. I need to start to fill my head with pleasant thoughts. I need to maintain my confidence, and tell myself that I will get through this, minute by minute if I have to. I need to counteract these frightening thoughts and feelings in every was possible. (Like I said, I need to trick my mind.)

And it’s nice to know that this method works. My pain still continues to spin out of control (I have another physical therapy session in half an hour.) But at this moment,  my mind is at peace, and I am once again in control of my thoughts.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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