Monday, April 15, 2013

Patients for a Moment: The Stresses of Chronic Illness

Welcome to the April edition of the Patients for a Moment (PFAM) blog carnival.

Patients For A Moment is a patient-centered blog carnival - for, by, or about patients - that was started by Duncan Cross. The goal of the carnival is to "build connections within the community of people who blog about illness, disease, and disability. This includes doctors, nurses, caregivers, even policy wonks – but especially patients."

This time participants answered the call to write about The Stresses of Chronic Illness: all the big or little things that cause you stress and make life with chronic illness challenging.

I am pleased and excited to present these 16 17* responses.  Each one tackles the answer to this query from a different perspective.  After reading all of these posts, I can honestly say I need to take some time to appreciate all the different ways of thinking about this topic, as well as review the wealth of suggestions for coping with stress.

So let's dive into the discussion, shall we?

Stressed Because Being Sick Changes Everything

Dear Iris does the best she can with the limited energy she has, but she still keeps getting behinder and behinderer (real words, she promises!)  In The Stress of Living with a Chronic Illness she talks candidly about all the ways having lupus has changed her life--not all for the better.  She blogs over at Sometimes It Is Lupus.

Lorna from Life with RA is a Pain admits that she has a lot of stress in her life, from multiple sources, much of it linked to her chronic illnesses.  So much stress in fact that she isn't sure what to do when her usual stress-relieving strategies don't work. So she's inviting you to read her post Stress And Chronic Illness and leave her a comment with your stress-busting suggestions.

"Chronic illness feels like a constant fight against your circumstance," says Rosemary of Seeking Equilibrium.  When she was healthy, she used to love flying through life by the seat of her pants; now that she's sick, life is more like one great, big pain in her fanny. Read more of her wry and poignant insights in Here's My Number So I'll Call You, Maybe.

Symptoms = Stress...and Stress = Symptoms

In her post The Stress of Chronic Illness: How Stress Triggered My Sleeping Chronic Illness, Julianna from What the Jules discusses how the stress of her "healthy" life created the conditions for the seeds of her chronic illnesses in her body to germinate, sprout and grow.  She now copes by figuring out healthier and easier ways to do things, the basis of her new, lower stress lifestyle she terms "chronically awesome."

If you live within an invisible chronic illness, you will be able to relate to what Cheryl says about living a dual existence, i.e., what you "looks like" versus what you "feels like."  And if you live with her particular invisible illness, you'll understand when the first question she asks you is "Where's your bathroom?"  Click here to read The Bathroom Burden at Wings Like Eagles in the Desert: A Journey through the Wilderness of Chronic Illness.

In PFAM - The Stress of Having a Chronic Illness - Fibromyalgia, Laurie writes honestly about what it is really like for her to live with fibromyalgia, stating that the pain is not just physical, but emotional too.  Her funny and sad portrait highlights the daily stresses that are part of her now "half life."  See for yourself over at Hibernationnow.

Sometimes it's denying the need for some honest-to-goodness help that causes the most stress when it comes to living well with chronic illness.  The Afternoon Napper makes this point quite brilliantly in Whichever Way You Swallow It - A New Medication Adherence Method.  Please head over to The Afternoon Nap Society to see for yourself...

Anya of The Patient Patient knows that her physical illnesses create stress, anxiety, depression and loss of self-confidence.  She recognizes that getting overwhelmed by these feelings can, in turn, worsen her physical health.  In her post Feeling stressed about being stressed!, she explores the mind-body connection as well as explains her approach to stress management.

So there are the stresses of everyday life and then there are the stresses imposed by chronic illness.  So what do you do?  Well Donna Kay created a plan to manage her everyday stressors so she could focus on taking care of her health and taking advantage of opportunities to have some fun too.  Visit Healthier Stay to view her post My Routine For Spontaneity.

Health Care Stress

When you're chronically ill, is it too much to ask for something in the health care system to go smoothly, just once?  Leslie of Getting Closer to Myself discovered that the answer to that question is a discouraging, "Yes it is." She shares her story of how procuring a prescription turned into an annoying and unnecessary ordeal in A “Bitter Pill”: Weighing In On Our Broken Healthcare System.

Dana at Chronically Mommy shares her post The Stresses of Chronic Pain--Misconceptions and Stigmas! with us.  In it she discusses the misinformation friends, family, health care providers and the public believe about what it means to live with chronic pain.  She points out that those mistaken views and opinions often translate into health care for patients that emphasizes learning to live with pain instead of offering treatment plans to help us manage It.

When it comes to managing fibromyalgia symptoms, most reputable health websites state that "your doctor's treatments combined with good self-care will decrease pain and minimize symptoms."  Selena from Oh My Aches and Pains! believes that she is doing everything she can with her self-management techniques; what she says is missing is a doctor that understands her pain AND is willing to treat her for the long haul.  Learn the whole story when you read The Stresses of Seeking Medical Treatment for Fibromyalgia.

Chronic Illness, Stress and Relationships

The stresses of illness sure do complicate our lives and put pressure on our relationships, especially our marriages.  Fortunately Helena learned three strategies that can really make a difference when stress from illness impacts our partners and passes that knowledge on to us in her post Illness, Stress and Marriage at Chronic Marriage.

Our partners can feel stressed out when they don't get what they need from us because our chronic illnesses get in the way. Thankfully one of the members of Rona's health care team helped her with a very important relationship issue, advice she shares with us in Shhh! I'm Going to Talk About Chronic Pain and Sex at her blog BerryMorins Bits and Tips.

Kathy at FibroDAZE found out that stress can rear it's ugly head at any time, like after an exhausting trip to the grocery store. While resting in bed afterwards, her thoughts turned to questions about what the future holds for her and her husband as she ages with chronic pain.  Check out Grocery Store Blues and let her know if you think about these things too.

But Wait, Is All Stress Bad?

Yes, sometimes the symptoms of our chronic illnesses stress us out.  Maria at My Life as a Puddle empathizes with you, but also encourages you to transform your stress into success by not letting your symptoms hold you back from doing things you really want to do. Read how she did this in her post Hyperhidrosis & Yoga.

O.K., so stress may (or may not) make the symptoms of your chronic illness worse.  But Duncan points out that it can also be a good thing, as in motivation for getting out there and enjoying life to the fullest despite being chronically ill.  Take a moment to reflect on this message in PFAM: Avoid stress, avoid life which can be found over at Duncan Cross: ill. humored.

That's all for this edition.  I hope you have as much fun reading this as I did putting it together.

Here is where I would direct you to the blog of the next host for PFAM...but instead I am going to ask for volunteers!  We need 8 people to come forward and graciously offer to host PFAM at their blog for the months of May, June, July, August, September, October, November and December 2013.

This is your opportunity to help keep this blog carnival tradition going.  Hosting is easy and I can certainly answer any questions you might have about how to do it.  To learn more about being a host check out the Application Information for Hosts here.  Then contact Leslie at gettingclosertomyself at gmail dot com if you are interested.

Also, don't forget to check out the PFAM website and like the PFAM Facebook page.

*My apologies to Dana from Chronically Mommy for temporarily omitting her post.  I rectified my error on 4/16/2013.  I blame the huge fibro-flare I am currently enduring for making it harder for me to be organized and pay attention to details (amongst other things!)  As someone who also lives with chronic pain, I know she understands.

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Unknown said...

I greatly appreciate the participants' honesty, humor and insight in their stories. Each gives me inspiration and knowledge.
Thank you so much for the opportunity to participate in this blog carnival.

James Reese said...

Hello I am wondering if any of you have had an experience like my wife and myself have had. I put a short My Story on my website about what we did and how we succeeded with a very serious health crisis. It took world wide research and many years to win. If you have had something similar I would be interested in hearing about it. My site is www.thereesewellnesssytem.com. Its nice to hear from those who have been down the path and won. Thanks Jim