Thursday, July 31, 2014

What is it like to have a Chronic Illness?

Having a chronic illness, visible or invisible, impacts the everyday life.  While chronic illnesses vary I do think that they have all one common denominator: lack of energy.  Every person has suffered some type of illness at some point.  We all know that when you have an infection or a virus, your body works overtime and as a result you are less energetic. You call in sick to work, you sleep longer, you take some medication and hopefully feel better in several days to several weeks.  Now, hang on to that tired sensation and stretch it over two months, two years, two decades....  What would that mean for your life?

Let's see if I can break this down a bit further for you.  Let's say that the normal person has 100 energy dollars (ED) to spend each day.  By the time you get home from work, you have spent 60 ED. That leaves you with 40 ED to do with as you would like that night.  You make your dinner (5 ED - lots of chopping!), you do some laundry (20 ED), take out the trash (1 ED).  Other nights you might go out to dinner with friends (30 ED).  You go to bed each night and apart from minor illnesses wake up with 100 ED to spend the next day.  Minor illnesses take varying amounts of ED, but you have sick days so you can call in sick when work would be too much.

All those crazy symptoms that the body of a chronically ill person's puts out are often bad enough. However, those same symptoms also consume ED.  The body needs energy to put those symptoms out or to compensate for a deficiency in the system.  Medications to control symptoms often also consume ED.  So some medications are worth the energy cost and some are not.

Depending on the severity of my chronic illness I can honestly say that I have had as little as 30 ED to spend on a day. When I was working full time, I generally had about 65 ED to spend on a day.  My family needed my income so that meant that I worked and really did nothing else.  Some days at work took more energy than I had.  It times of fair health I could then borrow from the next day and just hope to make it to the weekend.  Eventually I borrowed too heavily to meet the needs of the current day or habitually borrowed over a long period of time.  Weekends would then become inadequate to make up that deficiency.  I would then use my vacation time to simply stay home and rest.  Nearly all of my sick days were used simply on the most extreme manifestations of my chronic disease.  Medical leave became necessary several times.

Additionally, I had a reoccurring commitment on Thursday nights after work.  In order to attend that event every single week, I had to get permission from my boss to work a later shift on Friday.  Sometimes I simply could not borrow ED from Friday and would have to miss the Thursday event even with this compensation.

For all of you saying that clearly I was a poor employee, ask my employers.  I was still routinely promoted, recognized for excellence of work routinely and at review time, and doubled my salary in six years at the same company.  I spent all my ED for the day at work and my family had to take care of the other things that needed doing at home.  Sometimes I had some ED to help out, but those were definitely exceptions.

But, I was not lazy.  I was not taking advantage of someone else.  I simply had nothing left to give that would not jeopardize the income needed by my family.

I no longer work outside of the home but instead stay home with my children.  What does that mean for my day? Certainly I have much more control over my daily activities but do spend much of my ED on caring for my sweet blessings.  On the fair days, we are busy in the mornings and more sedate in the afternoons.  On poor days I orchestrate instead of participate.

The guilt, though, and the longing for a normal amount of ED!

I do hope that this glimpse into my life has blessed you in some way.