fatigue

But you look healthy

A ‘complaint’ I find occassionaly from people with Chronic Illness is frustration when people say “But you look healthy”.

I think I understand that complaint, but as a parent with a child with a chronic illiness “looking healthy” messes with how I evaluate situations.  My daughter is happy and looks healthy during the day afternoon.  She does school work and goofs around as I would expect.

She won’t get up in the morning.  She probably won’t get up until close to noon.  Is it fatigue? She is on some powerful medicine that absolutely has fatigue side effects.  She went to bed at 8-8:30.  She is a teenager – teenagers frequently are difficult and stubborn.  She looks healthy, all outward appearance (save one) look good.

So as a parent I have to evaluate whether my kids are healthy enough to go to school.  Fever? – Nope. Runny nose? Nope. Puking? Nope.  Sounds like a school day.  All symptoms I can physically see.

You went to bed at 8?  Yep.  Ok you had plenty of sleep – go to school.  Oh you’re still tired.  How am I supposed to process that?

Again,  I think I can understand the basis for the complaint about “looking healthy” and it is way too easy for people to judge and evaluate other people’s situations.  But we evaluate situations based on how we ‘know’ the world is supposed to work.  How else are we to make decisions?  I’d rather you just not be sick 🙂 but we all have to deal with the world as we find it.

E

Advertisements

Chronic Illness

Every so often there is a ‘human interest’ story on the news.  Some remarkable young child is undergoing medical treatments.  Disease is destroying the child’s body and yet he or she is happy and optimistic.  These are ‘great’ emotional news stories.

But from my experience, it’s not how the story plays out.

Raising kids is crazy hard.

I’m stubborn.  That’s why I enjoy endurance sports, I don’t stop.  To live with me you have to be just as stubborn.  But raising stubborn kids provides its own set of challenges.  You want your kids to get up on time, go to school, learn, study, have good character, have friends, play sports (run?), and eat food.  My stubborn kids push and resist at each of those items.  My job as a parent is to mold them.

That’s hard.

But what do you do when one of your kids is fighting a chronic disease?

When a parent excuses away a bad behavior of a child do you roll your eyes?

I do. It’s just so easy to make a snap judgement without understanding the whole situation.

What do you think if I told you my child can’t wake up on time for school because of exhaustion?  My child looks healthy.

If you told me that your child has this problem I’d tell you to have your kid go to bed earlier. Most kids don’t want to wake up on time and you simply need to be firm with the rules.

Really?

Perhaps.

Maybe I’m dealing with a stubborn kid or perhaps 12-14 hours of sleep and exhaustion the rest of the day is from something else?  How am I supposed to tell the difference?

I am not particularly nice and friendly when I’m tired.  What type of behavior should I allow from a child who is seemingly perpetually exhausted?

What do you do about medicine?  We go through more than a dozen pills a day, we were doing two dozen at one point.  I hate pills.  I don’t understand why people pop Ibuprofen during a race, don’t you understand the potential consequences?

Have you ever seen a child routinely take a half dozen pills before breakfast and a half dozen pills for bed time?

Every day.

Forever.

Thank God we aren’t doing 3X a day right now, that was rough.

Google is the worst Doctor in the world.  I’ll ask Google about side effects.

Fatigue – Brain fog – Insomnia

Whatever–  How do you tell what is a side effect in a kid and what is simply a kid growing?  How do you handle education when medical conditions and medicine impact learning?  Did she score poorly because she is a kid slacking off or because of medicine? Do you coddle her or scold her for the performance? I don’t know.

What about the pain?  If a kid is physically hurting you’d normally have them skip school for the day.  But what if you don’t know if the pain is going to last days, weeks, or months?  Do you skip school for a month?

Explain to a 13 year old why she has to take horrible steroids that make her gain a ton of weight.  In a short period of time.  Noticeably fast.

Then turn around after that regiment is done and give her medicine that suppresses appetite and then have to force her to keep on weight.

Explain to a child who doesn’t want to take medicine or go to doctors anymore because it’s not working anyway?