Neither one is pleasant...

I have found that when I post things most important to me on Facebook, they largely go ignored.  Like this one:

One of the trials of Dysautonomia is POTS (Postural Orthostatic Tachycardia Syndrome). Diagnosis of Dysautonomia can often be a discouraging, despairing, arduous path. I literally had no idea what my diagnosis, soon to be exactly 3 year ago, actually meant even though I had already faced chronic illness for over a decade. Even if I had some understanding of the condition, I could not have fathomed what it would mean for me. Sadly, Dysautonomia is not only an adult condition. Even very young children are diagnosed with Dysautonmia, and even they face doctors and medical personnel who doubt and even ridicule their physical misery and accuse them of making things up or trying to seek attention. As an adult, I've been on the other end of that and barely survived the hurt and additional burden that brings. I cannot imagine children having to do the same.

Below is a post from a parent who spent four years trying to discover what was wrong with her son, even when the medical community was an obstacle to her efforts. She has an answer now and is searching for ways to help him, an 8-year-old who is facing an incredibly debilitating, incredibly complex, and largely unknown condition. 

"Does anyone have any tips on helping a very young child recently diagnosed with pots , my son is 8 we've been fobbed off by local hospital for the past 4 years saying were over reacting and our son is attention seeking after yet another collapse which are very frequent (had 4 yesterday) we decided to go private and travelled some 300 miles round trip and got the diagnosis of pots, finally we feel believed as u start to doubt your self were happy we have a name and our son can start getting to grips with the syndrome and what it means but more to the point how the heck do we help our child ??? I'm slowly gathering knowledge but these info sites aren't as good as asking others who live with it on a daily basis so any advice however small will be gratefully received , thanks in advance." ~ posted by Kimberley Watkinson on the Dysautonomia FB page.

Celebrate with me the courage and persistence of parents who refuse to give up searching for answers and for help for their children afflicted with Dysautonomia, when medical personnel go from being unhelpful to an actual hindrance. And pray with me for this mother, this little boy, and for all the parents and children who have to face this battle, often with little or no support.

Lord, have mercy upon the children who must face both the bewildering and debilitating things happening to their minds and bodies and the doubt, disbelief, and even disparagement of such by those in the very vocation who should be serving them. Christ, have mercy upon these children. Lord, have mercy upon them.

Lord, have mercy upon the parents of children who are suffering so who stuffer themselves in both witnessing the bodily and mental anguish of their children and face a lack of help, outright opposition, or both in their attempts to get help for their children. Christ, have mercy upon these parents. Lord, have mercy upon them.

Tomorrow marks three years since I received the diagnosis of Dysautonomia.  I had no clue, then, of the turn my life was going to take, or how quickly and abruptly it would.  And something else happened that day which makes that day all the harder for me.

But part of it being hard is wanting so very much for people in my life to ... well ... share this burden with me. If I were to say that I was starting to struggle with POTS in addition to NCS (Neurocardiogenic Syncope or more commonly known as orthostatic hypotention or vasovagal response), I want someone to understand without my having to explain and I want someone to remember after the explanation.

I have very much disliked the sensations of when my blood pressure and heart rate plummets upon standing or even sitting up from lying down. Setting aside the fainting, the sensation of something being so terribly wrong and feeling as if I am fading away ... or the world is fading away ... at the same time is just so overwhelming and so difficult to bear ... each and every time.

Now, though, with prolonged standing, POTS has become another burden to bear.

I am not sure if it is because there is so much other stuff going on or if it is just me and my heart, but when I become tachycardic, I do not recover as quickly as I can from NCS.  Lying down pretty much solves the low blood pressure and my heart rate will either stop falling or rise back to normal.  However, once the POTS starts, my heart rate remains elevated for long periods of time and I struggle to breathe.  I am also dizzy.  Even lying down.  The sensations and illness are as all consuming and debilitating as migraines, though in a different fashion.

Light and sound do not bother me, but I cannot read or watch television or even enjoy music.  Instead, I am trapped in this heightened state of anxiety (another symptom), with a racing heart and dizziness so great that the slightest movement of my head brings on another wave of dizziness.  All that is horrid, but I struggle to endure the shortness of breath.  In my head, I know that air is there for me and I will continue to breathe, albeit in a struggling fashion, rather than getting to a point of not being able to do so like with the asthma attacks.  I will not worsen over time, but neither will using an inhaler make it better.  Mostly, it is about waiting.  Enduring.

Enduring feeling anxious and breathless and dizzy, with your heart rate skyrocketing.

The odd thing is that I can feel it starting.  And, as yet, I have failed to acknowledge the danger zone in which I find myself and promptly go lie down.  No, instead, I try to finish whatever I am doing. I strive for closure.  And in so doing I race pass the tipping point and fall off the proverbial cliff.

And keep falling.
Alone.
Frightened.

Follow the link and read about POTS.  It is just horrid.  Overwhelming.  Almost too much to grasp.

For this reason, I weep, at times, for the children facing Dysautonomia and for their parents facing the suffering of their child.  In the quote I included in my post, the mother writes about how they spent four years seeking help for their little boy, all the while being told he was fine and just seeking attention.  Oh, how that angers me!

I would venture that 100% of adults struggling with Dysautonomia face the disbelief of real suffering and the condemnation for attention-seeking at some point.  In fact, I would proffer that most of them experience that much of the time.  But the thought of a child having to face and endure all these bewildering and debilitating symptoms and be chastised over his/her response to such, over wanting to be helped, just infuriates me.

I commented on the mother's post on the Dysautonomia Facebook page, primarily because no one else had done so.  I was afraid to do so, since I am not a parent and I have not been struggling to help and to find help for a child suffering from Dysautonomia.  However, I decided to write to her the things I would do if I were here, including the things I wish I had in my own life from someone helping me face and endure this devastating condition:

If you are Googling, you probably have found some of the practical advice, such as ensuring that he is hydrated and getting plenty of sodium. Eating small meals many times a day is also helpful. And naps are great friends.

But there are a few things I think that you could do for him, beyond the practical you will surely find online:

1. Tell him often how brave he is for facing this, being sure he hears that being brave is not about feeling brave, but about getting on with facing POTS even when he is feeling frustrated or confused or sad or tired of it all. Courage is continuing on with your journey, even if you are weeping and despairing as you drag yourself along the ground. Remind him that even grown-ups struggle to face POTS.

2. Stress with him how very mercurial and idiosyncratic POTS can be, so trying to predict and plan for how days will go is not really possible. Even though it has to do with autonomic nerve function, which is a discrete description, how that dysfunction is played out, even in the same body, is never discrete or predictable. "Going with the flow of my body" has to be his motto, above and beyond what others might be telling him to do or wanting him to do.

3. Read how others describe their symptoms and help him come up with words to tell you how he is feeling, both physically and mentally. That way, he knows that you know how he is doing. Think of it as developing a code of sorts that you can use to communicate when he either cannot focus on doing so or does not feel like doing so.

4. Help him identify things that make make his symptoms worse. For example, raising my arms while doing something makes doing that sometimes many, many more times difficult. Between the work of standing and the work of washing my hair, taking a five-minute shower can leave me breathless and shaking, as if I have just completed a marathon. But it took me a long, long while to realize that washing my hair with my arms raised up was as hard work as standing. Bending over is another activity that is sure to make me near-faint or faint upon straightening up. Bending over is such a natural response, a natural activity, that I still do so even though I know it is a problem. My best friend often reminds me of things that are "triggers" for me.

5. Help him come up with a list of things he can do to help navigate the emotional storms that come with facing chronic illness. A Go-To list or basket of things that can help, ranging from passive to active: listening to music, watching something, playing a game (card, board, or computer), reading a book, making a list of things to do on a better day, naming three achievements from the day before, an art activity, singing, being read to, making models, etc. People's lists can be different, but the items on them all have the same goal: to help focus on the external, rather than the internal, to focus on something other than what is happening in your body and/or in your mind. The key to a successful list is to have a variety of things so that there is at least *something* that can help you get through the bad moments.

6. Help him come up with simple sentences to explain to others the things that are happening with his body, so that he can talk about POTS and how it affects him. That way, he can make it real for others, helping to dispel to some degree both the ignorance and the disbelief he will oft encounter.

His mother responded with deep gratitude, saying that she had found the practical, but nothing on how to help him cope mentally.  

Therein lies the rub.  It really is as much a mental battle as it is a physical one. By this I mean, not only are you mentally affected by symptoms such as cognitive dysfunction and anxiety, you are also affected by mental fatigue, the fatigue that comes from facing this wretched condition, this failure of your body's autonomic functions, each and every day.  It never ends.  Some days are better than others. Some days have fewer symptoms than others.  But none are good days physically.  None.  All of that has disappeared.  And somewhere deep inside—for me at least, though I suspect for many others—there is a part of you cataloguing the symptoms, marking the decline, staring down the inexorable path to place where even your "good" days are ones you would not wish upon your greatest enemy. 

How in the world does a young child handle this?

I have been struggling, mightily, with the realization that I just cannot walk about where and when I want to do so.  I can never be far from a wheelchair if I want to be out and about.  Oh, I can—as I have unwisely done—gather myself together and work on some physical project, such as helping someone with his or her house or yard.  I will work for a spate of time, holding at bay the pain and fatigue and failures of my body.  Then, I go home and collapse.  For days on end.  I sleep and sleep.  For a recent helping project, I was so weak afterwards that for three days I could not lower myself down on the toilet.  All I could do was fall on it.

I realized, recently, that to cope with what is in my mind and my heart over watching what is happening to me—and being so utterly alone with it—that I think I disassociate from toll the labor is taking upon my body so I can accomplish something, so that I can be helpful just one more time.  Even now, I know that those instances of "just one more time" are rapidly coming to a permanent end.  Just as I cannot walk my way through grocery shopping anymore, I know that I will not be able to power my way through weeding or painting or burying a drain pipe.

I absolutely, utterly loathe POTS more than anything that has entered my life in the past few years.  I will take the fear that accompanies the vasovagal response and fainting gladly rather than the terror that is the inability to still my racing heart, spinning head, or labored breathing.  To be forced to just endure the symptoms and the sensations and the feelings and the thoughts that accompany them.  To endure them with only a puppy to help me.

But it is not just enduring POTS because I have stood too long.  It happens when I have been sitting too long.  When I have not been resting enough.

And then there is the fact that the gastroparesis is now an almost daily battle, as is small bowel bacterial overgrowth (SBBO), both from the slowing and periodic failure of my digestive system.  My abdomen is always swollen in some fashion and it is now always painful to some degree.  Sometimes the pain from this is so great that all I can do is lay on the floor and writhe and whimper.  I never fathomed how overwhelming and even violent mere nausea can be.  I oft faint when bowel movements are nearing because of bulk passing by the vagal nerve.  And I oft scream actually having a bowel movement because other nerves have become ridiculously sensitive.  The nerves in the back of my head are so sensitive now that I need ice packs to even lie in my recliner, much less try to sleep at night. I am so tired that I am often two tired to fall asleep.  The pain from the permanent tendonitis in my elbows, particularly my right elbow, from the muscular weakness, flairs frequently now, not periodically.  I faint and fall more frequently.  I am more confused.  I leave the doors open and the stove on more often, even with the signage I have about the house.  I struggle to figure out what day it is.  And so much of what I can cognitively process is delayed, which means I am often correcting problems after the fact rather than preventing them.  I have more instances of aphasia.  And if I do not remember to keep the day's medication 4-part compartment by my side, I will miss every single dose, forgetting that I even have pills to take all the day long.

I am changing, lessening, disappearing.

I see it and I frenetically try to look away from it.

I mask and pretend.

I hide.

And I am afraid.

I am alone with these things and very, very frightened of them.
Of me.
Of what is to come.

I dared to respond to that mother's plea because I rejoiced that that little boy is not alone, that he has people in his life intimately familiar with his condition, his symptoms, and his battles, who are fighting for him when they can and are championing him when there is nothing else they can do.

He is not alone.

I am Yours, Lord.  Save me!