• Six ways to thrive with (or without) chronic illness.

    Living with chronic illness requires compromise.  The first compromise is energy and it comes down to simple math.  If Johnny has five energy bars, but completing all goals of the day subtracts eight energy bars, Johnny will be in energy bar deficit.  This is a simple truth for all people, but the energy bars are already reduced for chronic illness people.   There are many reasons for this, all of which contribute to the problem.

    Fatigue is a cloud embedded in the muscles of the day. The scientific contributors to fatigue aren’t something I can explain.  Suffice it to say the illness itself takes a toll on all systems of the body, this in turn leads to fatigue.  Diet is part of the problem, blood health such as anemia and low platelets are problematic, chronic pain, and side effects from medicine, neurologic and  muscle involvement are also contributing factors.  Going back to Johnny, if Johnny has five energy bars, but his illness swallows three, how many energy bars does Johnny have at his disposal?

    The answer is six.  That sounds funny, but here are six ways of getting more out of your energy bars, whether one has chronic illness or not.

    Sleep —  adequate sleep can make or break your day, illness or not. If you don’t get enough rest, you have started your day in deficit energy bars. Find out the source of the sleep problem.  Is it sleep apnea, diet, reaction to medications, stress, worry, pain?  There are medical and non medical ways to address these problems.  The first line of defense is proper exercise, diet and attitude.  A positive attitude goes a  long way.  You need medical help for apnea and perhaps to manage pain.  Illness can undermine sleep, but you can’t let insomnia undermine sleep  without it effecting memory and energy.  Talk to your doctor about sleep problems. Don’t ignore them!

    Pain — Chronic pain eats up the energy bars.  There are medical and non medical ways to deal with pain.    Getting out of bed hurts.  But staying in bed hurts too. What are you gonna do?  Get out of bed of course!  Set some goals for gentle exercise, but get moving. The more you move with pain now, the longer you will be moving in the future. Of course, this is not so true for  ALS, or Lou Gehrig’s disease.  My page mate, Cathy Speck, can give the definitive answer on that. My experience with Lupus is that I need that jog, without it my tongue becomes sharp and my attitude is snappy. It wipes me out, but I need those beautiful endorphins.   If taking pain relievers helps, take them then exercise, but exercise if you can.

    Diet — Food is good medicine.  To me, food is the first medicine. What food medicine are you putting in your body?  Entenmann’s doughnuts and french fries?  Oh Pishaw! Fruit, beans, vegetables are your best friends.  Consider a food elimination diet.  Find out what makes you feel good and what makes you feel fatigued.  There are anti-inflammatory foods too.  I definitely have put a lot of time and energy into eating carefully. I am not perfect, but reducing refined sugar and flour, growing a garden and eating fresh fruits and vegetables are all things that help me.  I do live in California and have the luxury of already being a gardener and living in an agricultural area. However, the point is, food is your first medicine. Eat wisely.

    Time management — Plan your day. Make lists, do what you can, then relax and don’t beat yourself up. These days I am meal planning for the month.  I have a copy of my plan on my phone, on the frige and on the computer. I shop accordingly.  I make part of tomorrow’s meal today, that way I reduce the time and energy required to cook.  For example: If I made mashed potatoes and a Celebration roast, I make enough mashed potatoes for tomorrow’s Shepherd’s Pie.  I am also “getting busy” with the crock pot.  My illness zaps me hard at about 7:00 every night. It’s like clockwork.  A pain suit zips up around me and I can’t get out.  Knowing this, I do as much as I can before it hits. The rest can wait.  I also plan for exercise, plan for time with friends, and I plan for naps and sleep.  The hardest thing for me is learning to say NO.  Time management requires one to say NO to people. You can’t do everything, so say NO if something will zap you of too many energy bars, otherwise, plan accordingly.

    Attitude — Pain, fatigue, insomnia, being overwhelmed, these are attitude downers.  What lifts you up?  Running on Saturdays with my coach lifts me up.  I can’t do all the days of training I want to do, but getting encouragement from other’s makes a difference in the quality of my life.  My friends have a hoop circle and meet weekly to hula hoop, that’s pretty fun.   The point is, surround yourself with fun loving people.  If you are immune compromised due to medication, there are safe ways to be out of the house.   When I am in bed and not social, I write about it. This lifts me up.  When I need quiet time, I paint. The point is, there are always good and positive things to do, but you have to find them.

    Don’t beat yourself up — You are doing more with less.  As long as you are getting up each day and smiling or finding wonder and beauty, you are doing great.  What did I leave off?  I wonder what other people do to stay healthy, happy and holy?

    • Jesse, very wise advise for daily life as well. Hope you are taking all your own advice and suffering less.

      • Maya North

      • January 16, 2013 at 12:07 am
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      I have pain days where I can barely move or think. They are blessedly rare. It is incalculably difficult sometimes and people who do not deal with chronic illness have no idea. Thanks for helping them learn and giving those of us who do have a clue some *very* good ideas! XXXOOO

      • I have days where Lupus and fibromyalgia team up and head right to hell. I don't go anywhere those days. I mainly sleep and when I get some energy, I do something, just maybe something small. I haven't tried an ice bath, but I might see how that goes. I am sorry you have days like that too Maya. What gets me is that some people think that just because I had energy last Monday doesn't mean I am able to function today. Big hugs. Jesse

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