Coping With Chronic Illness - Dealing With Its Unpredictable Nature

Be Flexible Like A Gymnast

Unpredictable Chronic Illness - Be Flexible.

“Today is canceled, go back to bed.”  

When you live with an unpredictable chronic illness you really do live day by day, hour by hour.  At any given moment you may have to chuck the plan aside and go to bed.  You don’t always have control – even if you’ve been trying to be good and take it easy and take care of yourself. 

Or, sometimes we push too hard.  Sometimes we just can’t help ourselves.  We just can’t stop until it’s too late.  And then we pay for however long we pay.

Sometimes we just rebel against taking our medicine for a day or two.  Every now and then we eat things we shouldn’t.  Sometimes we have really high expectations for ourselves and it turns out we can’t even get out of bed that day.  Sometimes you forget that doing this smaller task means you cannot do this other more important task.  Sometimes everything just goes wrong.

Being flexible is going to be necessary.  So, today is canceled.  We’ll do it another day.  Or we won’t.  That’s the way it is. If we are not flexible we will break.

Set Priorities

Sometimes the whole day falls apart and we will only be able to accomplish one thing (and one thing is optimistic – sometimes we can’t do even that).  We have to make some really hard decisions about what is most urgent and what is most important to us.

Say you were supposed to do dishes, make dinner, and have one-on-one time with your daughter today.  But, it turns out you really can’t do them all.  Which one are you going to choose?  Dishes might be urgent.  But your daughter might be more important to you.  

Decide what your priorities are.  It will help you take care of the most important things now and tomorrow and the next day.

Do Not Over-Pack Your Schedule

We should not live on the edge of what we can do all the time.  It leaves no room for an inevitable crash.  We must have some breathing room in our schedule.  It has to be OK that we crater.

Again this requires making really hard decisions.   What is necessary?  What is important to you?  Now cut it down by half.  Maybe that is a reasonable amount for you to do.  Maybe it’s still too much.  Cut it down some more.  

Give yourself the room you need to be down and out at unpredictable times.  This may mean changing your work, not working at all, letting go of things you used to do.  Just don’t give up EVERYTHING.  Keep some of the things you love if it is at all possible.  Or maybe you can discover something new (and more reasonable) to love and be involved in.

Be Creative

You may simply not be able to do things in a “normal” way.  But, if you think long and hard, if you brainstorm with others, and if you try different techniques, you may be able to find creative ways of doing the things that are most important to you or the most necessary.

For instance, in the example above you had to choose between doing dinner and spending time with your daughter.  Depending on your daughters age, maybe you could do both.  Could she help you get dinner together?  Can you sit and give her directions?  I find that many of my best “talk” times happen when we are busy doing something else.

Give Yourself A Break/Stop Saying Such Mean Things

The guilt can be overpowering.  Living with a chronic illness you are simply not going to be able to do everything you want or need or aught to do.  You won’t be able to do what everyone else wants either.

Give yourself a break.  If you could help it don’t you think you would?  When the energy is there, you have both the motivation and the ability to act.   When the energy is gone, both the motivation and the ability disappear as well.  

Stop saying such mean things to yourself.  You are not lazy or useless or stupid (or un-spiritual).  You are sick.  Sometimes our bodies do not give us a choice.  You will pick things back up later.  The quicker you accept what you need the quicker you can get back up again.  

If your illness has an unpredictable nature it can be very frustrating.  You constantly have to recalibrate.  You're never quite sure where you stand or what to expect.  And there is really no way to get a perfect balance.  But, being flexible, setting priorities, allowing ourselves room to crash, being creative,  and giving ourselves a break can help us make the good times last longer and get back up after a crash sooner than we would otherwise do.

And now it’s your turn.  What do you do to help you cope with the unpredictable nature of your chronic illness?  I think this is an important topic.  Won’t you share with us?

Other Coping With Chronic Illness posts: 


 It's OK to grieve your losses
Knowledge is power
Do not eat, breathe, and sleep your illness
Part 1 - Friendship is a basic human need (the dilemma)
Part 2 - Friendship is a basic human need (who can be a friend?)
Part 3 - Friendship is a basic human need (10 ways to be a good friend while chronically ill)
Part 4 - Friendship is a basic human need (How to be a friend to a friend who is chronically ill)
2 Reasons why lying keeps you sick
Let go of the dream, accept reality, and be happy (it breaks your heart and then rebuilds it)
Accepting reality - what it does NOT mean
3 Ways to advance in a new direction
18 Ways to ward off sadness
I Can't Do It Alone
Talk.  And Talk Some More.
You Do Not Need To Justify Your Existence


Energy Economy posts:

How to get food into our mouths while chronically ill part 1
Food part 2
Food part 3
Grocery shopping and chronic illness
Wardrobe considerations for the chronically ill - part 1
Wardrobe considerations for the chronically ill - part 2
15 suggestions for Leaving the house while chronically ill
14 suggestions for cleaning the house while chronically ill
Personal hygiene and chronic illness
Dealing with people while chronically ill
12 Ways to simplify your grooming and dressing routines
10 Ways to COPE with Cognitive Dysfunction (Brain Fog, Fibro Fog)  
10 Ways to COMBAT Cognitive Dysfunction (Brain Fog, Fibro Fog) 

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