Healing and Heathens

Let me introduce myself.  My name is Erin.  I could tell you a lot about my history, but if you’ve got Fibromyalgia like me your eyelids are probably already starting to get heavy, so I’ll spare you.  What you need to know is that I’m a nurse, I’m a parent, and I’m sick 100% of the time.  My mission in life, now that I’m not able to work as a nurse any more, is to share my struggle with other chronically ill parents and make their own chronic illness parenting impossible slog a little easier.

That’s right, I said impossible.  There is nothing quite so impossible as being a parent, and throwing chronic illness on top of it makes the challenge downright disrespectful.  But I’ll let you in on a little secret:  A lot of things are impossible.  I learned that as a nurse.  Being a nurse is a completely impossible proposition.  Just ask one of us.  It’s been impossible since Florence Nightingale crawled from bed to bed on her hands and knees attending wounded soldiers when she was too exhausted to stand.  It’s been impossible since my mother and grandmother wore white caps and snapped to attention when a doctor walked into the room.  It was impossible when I worked as the only nurse for 50 patients, but I did it for 15 years.  Brave and brilliant men and women just like you are scattered across the planet doing the impossible every day.

Unfortunately the easiest way to explain this to you is a bit boring so it will be short.

Energy Budget

Your energy is a budget, just like the budget you use to pay your bills.  Normal people have a solid checking account and a savings, to which regular deposits are being made.  They are basically your average upper-middle class American, whether they realize it or not.  The reason that healthy people are constantly telling us that we just have to try harder, push harder, tweak our diet or activity just a bit, is because this is all a normal, healthy person has to do in their day-to-day energy budget to make ends meet.  Just like a financially solid person won’t have to alter their lifestyle too much when they have a car repair or paternity test to pay for, a healthy person can make minor mods to their daily routine to cover any stressful situations.

We are different.  Oh Joy.  But I’m not telling you anything you don’t know.  If you didn’t know you were different from a healthy person, you would be watching Netflix instead of reading this.  The energy budget of a chronically ill person is like the bank account of an average American: meager and frequently drained.  We have to scrimp and pinch and adapt and go without just to do the things that every person needs to do to survive.  When something big comes along, there is nothing left, and we have to either get REALLY creative or find somewhere to sell a kidney. I’m kidding.  You should not be selling a kidney when you have Fibromyalgia.

Passing Impossible

It does not feel like you can afford to take it easier on yourself.  It seems like you have to flog your own back just to get out of bed.  The healthy people around you are telling you how easy your life is and how there is no possible reason for you to feel so bad, especially if your disease is invisible.  The truth is productivity is about ten times higher when the amount of time spent flapping around trying to pretend a debilitating illness is not taking over your body is decreased.

So you know that parenting with a chronic illness is impossible.  But if you’re a parent, you’re doing it.  There’s a lot more to this, and I know I can’t see inside your life, but I feel pretty secure in saying that you REALLY need to go easier on yourself.

Parenting with Chronic Illness Tip List

So let’s get practical.  Your energy budget has to stretch just like a grocery budget.  Though it’s kind of generalized, there are two strategies to stretching that thing like a wad of cheap taffy.

1. Find places where your energy is being used needlessly

These are the holes through which your precious resources will leak like a sieve.  PLUG THOSE LEAKS, CAPTAIN NEMO!  One of my personal leaks was standing during my morning routine.  Sitting in a folding chair has saved my tush and put the fun back in putting on makeup.  Another was realizing that the laundry basket could be dragged behind me down and up the stairs instead of holding it at a back-breaking waist height.  We have spent our whole lives being told that we can do anything, and that’s true.  But just because you CAN, that doesn’t mean that you MUST. Ask yourself what you MUST do, what is WORTH doing, and what is MOST IMPORTANT to do.

2. Involve your kids

We all want to keep our illness as far away from our kids as possible.  I would argue that your illness, being a part of your life, is legitimately their business.  Involving them is going to bring you closer.  Think about it from their perspective for a second.  They could know something is wrong, but you say everything is fine.  Instead of knowing they truth they imagine all the different unknowns and possibilities (kids can get pretty creative with the horror stories they tell themselves).  You may think you can hide it, but sooner or later most kids are going to figure things out.  If you were them, wouldn’t you prefer knowing that mom or dad are sick, but that it doesn’t mean anything is going to happen to take them out of your life?  Wouldn’t it make you feel more trusted and included and loved within the family if your parent confided and explained their health struggles?

The choice is yours, of course, but keeping up the facade of a healthy parent to a sharp-eyed kid can be so much more effort than it’s worth.  The beauty of including your kids in your universe of sickness (sick-a-verse) is that they learn enough to fill a textbook.  Many valuable lessons about the human body and how it copes with sickness are learned.  Compassion, and that everyone they meet is fighting a private battle is learned first-hand.  They learn to seek creative solutions to problems.  Sometimes they even discover hidden talents.  My teenage son would still not know he has a knack for cooking if I weren’t too busted some nights to make dinner. Because he was aware there was a need, he stepped in to fill it.  Yes, he volunteered to learn to cook.  Now he will never have a problem wooing a woman that likes to eat.

3. Spend as much time as you can with other parents who have chronic illness, or at least people who are supportive of your battle

Do not allow yourself to be surrounded by people who constantly question your need to take care of yourself.  This is important whether or not you have kids, but when you’re a parent it becomes doubly so.  Kids will see the way people treat you, and grow up believing it is normal, so make sure you demonstrate healthy relationship habits to them.  If you wouldn’t tolerate someone doing or saying something to your kids, do NOT tolerate it toward yourself.

4. Above everything, don’t let anyone else decide what is right for you or your family

There may be a lot of people who give you a lot of advice, but they are not your child’s parent.  Nobody else lives your life in your body.  Nobody else is responsible for your children’s happiness or well-being.  That is your sacred right as a parent. You should put as much of your energy as necessary into exercising and defending that right.  People are mean.  People accused me of keeping my kids from them because making it out of bed to take them to family functions was not possible.  Guess what? They don’t get a vote.  Yes, they love my kids, but they are not responsible for my kids.

5. When all else is done, do not forget to have fun with your kids

It is not necessary to take your kids to amusement parks or buy them toys or even leave your bed to have fun with them.  Just have to be willing to play along most of the time. Don’t let your illness steal any more of your precious happiness than you have to.  Take care of yourself!  You’re the only YOU you’ve got!

About the Author

Erin Shaffer is a nurse, a mom, and an interested observer of her own body. She currently lives in Houston where she, her husband, and her parents all take care of each other’s chronic illnesses.  She also home-schools her son Alex (age 15), her daughter Jasmine (age 6). If you want to read more, check out veryriskywords.wordpress.com, @riskywords on Twitter, chronicmamakitchen on Instagram, or look up The Chronic Mama on Facebook.