A different type of tired

Mom, can you make me something to eat? The heat of the shower really wore me out.

In most households this would be an odd phrase.  How I responded would seem even more odd, but in our household this is our new normal.

My response was how about something salty like popcorn. He agreed that would be great and I took him a bag of microwave popcorn, extra salt to pour on it and a Sprite. When he doesn’t feel well our first line of defense is to try salt and hydration.

I understand that what he is talking about is a new a different type of tired. He has become more aware of his body and how to communicate about how he is feeling.  Sometimes he just says he is tired.  Sometimes he says that he can’t focus and just wants to rest. Other times he describes it as “feeling heavy.”

My 12 year old has dysautonomia. It’s very similar to the kind that’s known as POTS, postural orthostatic tachycardia syndrome. He technically does not have pots because he does not have the tachycardia, heart racing, but he does have the pre syncope and dizziness and so many other aspects of dysautonomia.

In a nutshell, when I’m asked to explain what dysautonomia is, I have the other person think of all the automatic systems in the body they can think of. You know, like the heart, lungs, blood pressure, adrenaline, temperature regulation, digestion, all those things that you just don’t think about they just happened. For my son they don’t always work right.

Some days are better some days are worse. Things can even change hour to hour. What we do know is that we have to be prepared for anything at anytime. We now plan ahead much more than we used to. If we’re going to be out for most of the day the wheel chair goes with us in case he gets too tired. (Why my son has a wheelchair) If he’s going to be stressed or do more physical activity than usual we will try to rest up the day before and plan lots of salty snacks and lots of liquids for him to drink. We plan very little or nothing for the next day so he can rest, also. If his digestive system is acting up we don’t stray far from the bathroom. If he’s having difficulty with breathing with exercise and we try not to have him go up and down stairs too much or walk too far. In general we pay attention to how many “spoons” he has available or how much “battery power” he has left.

I also have to remember that what may appear as anxiety is part of his dysautonomia.  When he gets a little upset or scared or anxious his body reacts differently.  Instead of just a little adrenaline he tends to get an adrenaline dump.  His body reacts as though its a fight or flight situation, or in his case most often, freeze.  This can appear as him being stubborn and refusing to do something.  While he was in school this resulted in negative consequences from teachers and staff who didn’t understand the situation.  With the understanding of the underlying cause I am able to remember that he’s not giving me a hard time, he’s having a hard time.  I support him in the situation and then we talk about it after control has returned from his “feeling brain” to his “thinking brain.”

Another almost invisible aspect of dysautonomia to the untrained eye is brain fog.  Brain fog can look like forgetfulness or lack of focus.  Shaynen was diagnosed with ADHD in kindergarten, but now its hard to know what is being caused by ADHD and what is brain fog since they are both so similar.  Although he has an IQ well above average he has difficulty with school work often.  He can know a subject one day and the next day he can’t remember how to do the same problems.  He can discuss what he wants to write about, but then when he starts to write completely forget what his subject was going to be.  And the space cadet aspect of it. That can be the hardest.  He goes to do a task and forgets what he is supposed to do before he can even begin.

We work with the brain fog with a lot of understanding and plenty of lists.  Having a list of what needs to be done, even a list of how to get ready in the morning, helps him to be more independent.

Temperature regulation is another difficult aspect of dysautonomia.  He can become cold for no apparent reason.  Wrapping him in a blanket can help some, but usually this means he needs some extra salt and fluids.  The more difficult part of temperature regulation is heat intolerance.  In the summer we have to plan so that he is not in the heat more than a short time otherwise he gets dizzy and nauseous and generally doesn’t feel well for the rest of the day.  Generally if we go swimming he can stay out in the heat longer, but I have to watch him closely for presyncope episodes or dizziness.  I also have to remember that he will need to make it from the swimming pool back to the vehicle.  On more than one occasion I’ve had to carry him back to the van or have him sit by the entrance with family until I could bring the vehicle to him.

Showers have become a time of vigilance for me.  So far he has not reacted terribly from showers, but I know that many with dysautonomia react to a hot shower with fainting or dizziness.  So far he just avoids showers when he can and sometimes feels tired afterwards.  I remind him to keep the water cooler so it doesn’t heat up his core temperature too much and to be quick as he can in the shower so blood doesn’t have much time to pool in his legs.  I will sometimes help him wash his hair since raising his arms above his head can contribute to dizziness or pre-syncope episodes.

Some symptoms are unusual and to some people sound made up.  For example, he will get what he describes as cold pains.  Most often these happen when he has a fever or is not feeling well, although they can happen randomly as well.  The lightest touch to his skin is painful, like icy hot needles.  I especially hate these cold pains because just when I want to comfort him with a hug or tossle to his hair he cries when I touch him and pulls away.  I know that the only thing to help at this point is added fluids and salt plus some ibuprofen and rest.

In general Shaynen will most likely have to deal with aspects of his dysautonomia for the rest of his life.  We may not have even hit the worst yet since the changes of puberty can cause symptoms to become much worse even to the point of being bedridden for some.  We are working to keep this from happening of course.  Along with following his medication and supplement regimen we try to stay active as much as possible.  This is a careful balance to find because we have to be careful of his joints due to Ehlers Danlos.  The best thing for him is swimming or being active in water so we try to swim any chance we get.  In general we try to stay active as a family and especially try to have Shaynen do short spurts of activities with rest between.

To see how we arrived at a diagnosis for dysautonomia check out this other post, Dysautonomia Diagnosis.

For more information about dysautonomia in general check out Dysautonomia International.

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