Thursday, October 29, 2015

Dysautonomia in Real Life

As we are nearing the very end of October, and so the end of Dysautonomia awareness month, I have a few thoughts to share about how Dysautonomia has affected our lives.

Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.

We have wonderfully understanding family, friends, and even acquaintances who want Amber to be healthy. They are always praying for her recovery and are extremely supportive of her limitations. I know for many people her abilities seem inconsistent, which is entirely understandable because they are. It all depends on how well her autonomic nervous system is working at any particular time.

Often people see Amber out with friends or family and are baffled by her perceived abilities. Out of concern for her health and general confusion, we receive a lot of questions. These are those answers:

1. She seems so exuberant. Is she really sick?
Amber probably rested for a couple of days and gave up other possible activities before and after the time you saw her. She also knows what will happen when the event is over and her medication wears off. She chooses to be herself when she can, instead of a sedate, sickly child.
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
This cost her dearly - tachycardia, joint pain, and exhaustion for days.
 2. Should she be doing that?
Mostly likely, no, she "shouldn't" be doing whatever she's doing. However she has to make decisions for herself and learn how to gauge her own body. I can't watch her every second of every day for the rest of her life. She will learn the consequences for various actions, like everyone must do, and decide if whatever she wants to do is worth the end result. We won't let her endanger herself, but will give her the room she needs to be independent.
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
She ignored her body too long, and ended up in pre-syncope with a heart rate near 200 bpm.

3. She was fine the entire time we saw her, how is it that she's sick now?
Are you sure she was "fine" when you were with her? Or was she covering up a racing heart, dizzy spells, and nausea? After almost every single activity, including church, she crashes when we are back to our car. Amber pushes herself to use the very last of her reserve at every event. She's usually about a minute away from a syncope episode we we get her in the car. This takes a toll on her body and she will be sick for at least a day after an episode like that. The doctors don't have to worry about Amber laying about the house. She pushes herself to be sociable.
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
She was in tachycardia the whole afternoon.

4. She's looking so much better now with more color. Is she well again?
Define better looking and you do know she's wearing almost as much makeup as me, right? Unfortunately, no she is not well again. She does have a more specific diagnosis that we are thankful allows the doctors to target her treatment and support her specific needs.

You only see Amber on her medication and well rested. No one outside of her family (or doctors) sees her totally exhausted and barely able to get upstairs, or having to take a rest in her bathroom because the shower was too much effort. You don't see her unable to sleep because of joint pain or subluxated ribs. You don't see her upset when we cancel activities after sleepless nights. She's rarely relaxed in public because her joints need the active support to keep things together. Despite how much she enjoys them, Amber has given up activities that cause pain, damage her joints, or cost her days of well-being afterwards.
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
This is what she usually looks like at home.

5. Can she eat that now?
I don't know. If she's eating it, either it recently passed a food trial or she's willing to be sick. Food trials are a regular way of life for Amber. Food that failed last year might be moderately tolerated after two years on her restricted FODMAP diet that allowed her intestines to heal. Other foods may pass one day, but not another when eaten in conjunction with different foods. Or a food might pass on a good health day, but then on another day contribute to an already in progress dysautonomia flare.
 
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
These fries were not too successful, but had been the week before.

6. Why can she do "X", but not "Y"? I see her doing the same type of activities as "Y" all the time.
When does event "Y" occur? Does attending mean Amber has to give up other activities she'd rather do? Or does it conflict with medical appointments?

Is "Y" really exactly like what you've seen Amber do? There are sometimes very subtle differences in activities that make a huge difference to how Amber's body reacts.

Do you know what repercussions Amber had last time she participated in "Y"? Perhaps she has decided it's not worth the price.

What season is it? Autumn is especially hard on her dysautonomia, but Winter is difficult for her joints. Perhaps Amber can participate in "Y" when she's had a few good weeks, but right now she's very symptomatic all the time.
Unexpected Homeschool: Dysautonomia in Real life. Explaining day-to-day living with dysautonomia.
Even little things can result in dislocations.

All of these questions have come from well meaning people that I've tried to answer as best I can in the moment. But in reality often I'm too stressed and exhausted to be coherent, and after a time it becomes too tiring to talk about my child's illness at every event we attend. I'd like to just go and let her have fun without explaining the ins and outs of dysautonomia. Unfortunately, I know it's hard for people to comprehend exactly what is wrong with Amber.

So, if you run into someone with dysautonomia in any of its forms (POTS, for example) or someone with EDS (Ehlers Danlos Syndrome), please try to understand that they don't always know what their limits are from day to day, so it will be impossible for them to detail it out to you.

And Thank you to all who have patiently stuck by and learned with us!

1 comment:

  1. What an amazingly well-written description of living with this and trying to find answers yourself to help your child.

    ReplyDelete

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