Monday, April 15, 2013

Sjogren's Syndrome and Stress

Take a look at a question a reader recently sent to me in an email, wanting to know if lifestyle stressors can impact the frequency of flares and other symptoms of her Sjogren's. Like most sjoggies, this reader is feeling overwhelmed with the challenges of work and family and life combined with her autoimmune disease:

"......I've been totally exhausted. Coincidence or connection? I'm doing everything I can do reduce stress in my life but it just keeps finding me!
 ........people have said I need to manage my stress better. I think I do a fairly good job. There are days that I feel like I just want to crawl in a hole and stay there but I keep going. One of my friends said if all this happened to her she'd be in the fetal position. The stress is just never ending. 
How do I keep the stresses in my life -- that I can't get rid of -- from getting me down? Not just emotionally but physically. Any advice?"

Well. Tough question, isn't it? How to manage stress, especially the type that she highlights: the stresses in my life -- that I can't get rid of. Really stubborn ones like financial insecurities, family dynamics, job and working issues. There's no question that stress can increase flare frequency and significantly decrease quality of life.

I sincerely wish that I had an authentic solution to the reader's problems. My initial response to her was the usual stuff: "Stress causes elevated hormones throughout your body, which in turn sap you of vital energy. Even if you can't change the problems, your most important task is to take every chance you can to rest to replenish your energy stores."

Stress and the inevitable resulting fatigue are a universal problem for anyone facing a chronic debilitating illness. But how to address this?

Other bloggers, such as Jenny Pettit over at UII, comments on her fatigue issues frequently, and it seems that her discussion of stress resulting in fatigue is once again well stated. I referred to one of her blog posts just a few days ago. In it Ms. Pettit makes an interesting metaphor between taking out a loan to cover your financial obligations and spending more energy stores than you have : Can you "finance" extra energy? It seems that the answer is no.
"....But in the end, the only way to pay back energy is with energy.  You can't trade money for it.  If you use this energy now, you won't have it later - and furthermore, you can't spread out that "cost", you have to pay it all back right away which means you won't have any energy left for other things for a while........But when we take out the energy loan we can't pay back, all we really do is guarantee ourselves a whole lot more missed experiences.
Instead, let's build a new "bank" for ourselves, where we make deposits - running an extra errand on days we have some extra time, doing favors for others when we can so we don't feel bad for asking them to return them later, or even strengthening our foundations by doing things to make ourselves healthier through diet, exercise, and proper rest.  Let's create a culture where "saving" is good; where reserves are built up before they are drawn down, and where balance is valued.  We are not the USA; we do not have a national debt and cannot print money.  Just like our society is realizing across the country (and globally), it's time to make a habit of living within our means." 
What good practical ideas: thinking ahead and storing up energy, doing things for others so that one doesn't feel guilty or asking favors in return, and taking good physical care of our bodies with adequate rest and good nutrition.

But in addition to Jenny's excellent suggestions, there is an important addition I can make to her list. I would encourage the reader to spend a bit of her precious energy in cultivating relationships with those who are facing similar challenges. Find a support group, if possible. Go online and contact others via reputable disease organizations such as the Sjogren's Syndrome Foundation, or the AARDA. Read other patient blogs. (Ahem). Attend conferences or seminars.

Reach out for support, information, and coping skills from any sources you can. Stash those goodies away and use them in any means that is helpful to you.

So -- I'm asking y'all how YOU manage the stresses in your life. Share your wealth of experience and tricks of the trade with this reader, and all of us.


Heda said...

Good question. I'm hoping you get some equally good answers. My doc says stressing is a symptom of this illness and there ain't much that can be done about it. I hope you can tell me she hasn't got it right.

Blogger Mama said...

Find a hobby that you love and whenever you feel the stress getting bad, drop everything, and immerse yourself in your hobby for a little while. There have been studies that show that doing things you love will bring down your blood pressure (stress levels).

Amy Junod said...

I cringed when I read that Heda's doc told her that there's nothing that can be done about stress. Ugh! While anxiety is part of the whole Sjogren's Soup Mix, I do not believe that our desire for lessening it's intensity should be dismissed so quickly.

I have collected an arsenal of tools to help with anxiety and stress. Today happens to be one of those days where I realized I was on my 7th trick to calm myself and nothing was working.

That's where Julia's blog is a lifeline. Seriously. Sometimes connecting with others dealing with the same crisis is key to finding some sort of peace in it.

I love our Dallas area Sjogren's Foundation group. What a great swapping of info, support and positive energy. Truly uplifting.

Blogger Mama's idea to drop everything for taking time to do something that brings you joy is great. Think of it as if you're taking some time out for "treatment" of some sort.

Years ago I found gardening to be a great source of peace. Mother Nature always drops something special for me to discover if I'm good and put myself in "time out" long enough to notice.

I love yoga. I never thought I would enjoy yoga. (I'm not talking about extreme yoga) I love the peaceful centering- meditation really.

Meditation (or prayer), reading or audio book listening (my eyes are often too dry to read), searching the internet for peaceful images (google images for what ever source of inspiration you need...peace, joy, funny, etc.), coloring (hey, it's fun), watch funny videos online, love on a pet and most important, live in this moment. That's a toughie but a goody to master. Yesterday's worries will taunt you like a hornet. Tomorrow's worries will drain you of any energy you have left. This one moment, NOW is all yours to use as you wish.

Those are my tips. Like I said, I was on number 7 of stress battle this morning. Some days are just like that. And that's OK. There is no shame in admitting that it's OK to not be OK.

Ellen Z said...

I try to grab every bit of humor that comes my way. A lot of it is laced with anger: "My cats Sally and Lydia will answer the phone and fix me up a nice moist bowl of gruel.Humor me; fantasy helps." I wrote a while back. I can't read much but audible books keep me saner than i might be. M.C. Beaton's Agatha Raisin series is just right for me at the moment.

Shara from Seattle said...

You need to build your personal power kit.I like art therapy, sex, singing and music. Most of all, I like to talk to Our Father, He understands what we are going through. He didn't create this disease.
Turn off the feakin telly. Close your eyes and look toward any sun you can find and absorb some vitamin D. If you are on the west coast with Fukashima fall out, take extra iodine.
Write post it notes around your house, Mommy has an invisible disease and she needs your help with....Laundry, whatever and write down how you would like it done. Go through your home and check the items you can make more efficient.

You need to start thinking out of the box because that is where you live now.

Pray for Wisdom first. I pray you survive and thrive dear heart.

It took a long time but, I just keep getting better with age, you can too.

Thank you Julia, I wouldn't be in this position of helping others the way I do, if it wasn't for you!

I read Julia's blog every morning with my coffee. She is on the ball with finding other friends with Sjogrens or autoimmune disease. It was a huge transition but I couldn't have done it if I didn't have here blog.

Vickie said...

I think we all too often don't ask or accept help when we need it. It somehow makes us feel "less" and we already feel like we are not whole. I had a dear friend that passed away from cancer. She was full time National Guard, and a Wonder Woman type. She said that was the hardest lesson - to learn to accept as graciously as we give. And to go back to what you have said, we need to remember to laugh.

Jenny P said...

I could go on and on about this topic, but this time I'd like to just offer a tiny, specific tip I've developed.

Personally, I struggle a lot more with the stress of making small decisions, so when I know I'm getting particularly overwhelmed, I identify decisions I can ask others to make. A common one for me is to ask my husband to make decisions about dinner, and I actually think he appreciates that because it means I won't bite his head off over nothing, but also because he likes knowing something concrete he can do to help me. The point here is for me to not make any decisions - he picks what we'll eat, gets/cooks/orders it, and dishes it up. And while this should be small beans in my whole day, handing over this task is often the difference between depleted and disaster:)

Andrea said...

I learnt a great trick years ago: when you are overwhelmed by what you need to get done, take at least one item OFF your list. Most of us go around trying to work out how to fit it all in rather than freeing ourselves. I even do this when we are having friends over for dinner and I am getting too tired cooking: I choose at least one dish that we really don't need. It's a wonderfully freeing feeling.

Another trick that is easy to forget when you are tired and stressed is that exercise helps you cope better with any stressors and actually gives you MORE energy - you just need to make sure it's the right type and amount of exercise for you. I personally love Chi Ball and feel like I can deal with the world and my illness so much better after a class.

Shara from Seattle said...

I did that! Those are some of my tools. I scratched off grocery shopping and sent The Mighty Sandra to go do that for me. Still had to make dinner though.

We had parked far away from the doctors office and we walked then. I usually get my walking by going to the craft store.

Melody said...

I saw my allergist today and discussed the connection between the stress in my life and these constant sinus & respiratory infections I've been having for months. Then I found a quote from The Concious Life -"when there is no satisfactory closure to something that negatively affected your life, you will continue to hold on to the energies generated by your emotional response to it. The suppressed energies may stagnate and lie dormant for a period of time, but sooner or later, it will manifest itself in one form or another."

I've been journaling for the last couple of years as a way to release the emotions that I feel like I can't express in any other way - my main stressors are my children living in my home! I read somewhere that the act of physically writing something out is calming. It does help but I think I also need to find a counselor to help me find something else.

I love all these suggestions. And I agree, Julia's blog is a great place to find advice, humor and connections.

Anonymous said...

This is very helpful. I feel so alone.