Beached whale syndrome...

At 2:33 AM, I realized that I was not, at that moment, nauseous.  However, what had started was the writhing, what I call beached whale syndrome because my abdomen swells and I lie on my side trying to find relief from the pain.  I also have to try and keep anything from touching my abdomen from my sternum to just below my hip bones.

I did not fall asleep until after 6:30 AM and did not sleep much between then and 12:30 PM when I crawled out of bed.  My goal, which I accomplished, was to have Amos tend to his needs, dress, drive over to Goodwill and drop off the 5 garbage bags of clothing and the other odds and ends I downsized (like my African thorn carving set from when I was a missionary and my shadow boxes full of miniatures), and then mail the suit someone offered to pay for shipping if she could have.

My reward:  Taco Bell.

Now, a couple of hours later, I am inordinately uncomfortable and nauseous, but not battling the violent waves of nausea.  No, this time is it the problems that I have with stool passing by my vegus nerve and am battling a rising tide of weakness, clamminess, nausea, and pain.  SIGH.

A short while ago, Michelle wrote this rather pointed blog post about one of the difficult sides of living with chronic illness that inescapable, given that our bodies malfunctions with dysautonomia are processes that must take place for life.  I was saddened with her struggle, but find her very brave for being so utterly blunt:


How the other half live.

Lying on my side I could feel the hard tiles under my shoulder and hip. Poor absorption of food for years on end has left me with little padding on the tender bones that poke out. I could take out an eye with the knob of bone sticking sharply from my elbow or the pointy bit of sternum that sticks out just above the ever present pulse that spasms and bounces. And here I was again, communing with the short and curlies, dust, and ever present Freyja hair on my grey terry toweling bath mat. At least this time it wasn't through collapsing limbs or plummeting blood pressure. Though when I say "At least" what I really mean is a long line of expletives stretching off into the distance, far beyond the dusty underside of my bed, that I can see through the doorway of the ensuite.

I try to find a more comfortable position but no matter how I brace my body it all hurts. The green and white box in front of me has two delightfully demented yoga positions to choose from. Bum up or on my side. Put one leg here, another over there. Bend this bit and that. I wonder if I simply adopt Child's pose, can I cry "Mummy!" Physical comfort is further pushed down as I contemplate the process ahead. If I had any muscle strength left my nether regions would be bracing right about now.

Delay. Delay. Double check the box. Close my eyes and think happy thoughts. But no amount of puppies and kittens is going to help. No happy place is to be found. But the pain in my abdomen begs "Do it. Please just do it." A desperate rock hard abdomen is hard to argue with. So I don the gloves, lube up the applicator and resign myself to the inevitable.

I lie on the tiles as I wait for the contents of the bottle to work. It's been over a week since I last went. I have taken a laundry list of medications to get things moving. I employed all the maneuvers given by the local continence nurses. I watched the videos and studied the leaflets. I "moo" like a cow while bent in two, feet up on an overturned basket. And still nothing. Things go in but they never come out. My gut the Bermuda Triangle. And so I had to cry uncle and go from softeners and suppositories to the big guns, the enema. Stories of people so impacted they vomit up poo a good incentive to forego any last remnants of dignity.

1 in 2 people live with chronic illness. In disorders like Dysautonomia continence is a hidden issue. An unpalatable issue, but a common one all the same. When I hear people say all I need is a positive attitude I wonder if they could be all Pollyanna as they stick a tube up their bum and squeeze fluid up into the dark recesses of their body. Or when they have to explain the intimate details of their bowel and bladder habits to strangers. Or when they have to see a physiotherapist to learn how to poo again. Or when they have to consider more medications and stimulators and flushing and......all so they can do the most basic of bodily functions.

The nausea, the pain, the worries about malnutrition. They are part of life now. But it is hidden from sight. I went for bloods and the nurse said I looked great. Then she looked at my sour face and mumbled that she guessed I didn't come in when I was really unwell. And that's the problem. So much is hidden from public view. And so many don't want to know.

You see chronic illness isn't something you simply positive your way out of. It's not a question of attitude. It is learning to manage sometimes incredibly confronting and unpalatable symptoms and their equally confronting and unpalatable solutions, or partial solutions as the case may be. If reading this makes you feel uncomfortable, imagine what it is like to live with it every day. To have use suppositories and enemas because there is no alternative. A reader can stop reading. They can turn away and forget. For those of us living with chronic illness there is no choice. We must live with the unpalatable. We don't have the luxury to turn away and pretend it's not happening.

"I could never do that!"

Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.

Those of us that live with complex chronic illness and disability are well aware of just what we have to do. What we can do. We do it and we get on with life.

And today I up my dose as it all starts to slow once more. And I talk to my nurse and I break out the gloves. And contemplate another day spent lying on the tiles.

Michelle

At a neurology appointment a couple of years ago, I met a woman whose teenage daughter has dysautomia.  She was desperate for information and asked me lots of questions.  Her daughter was, then (I hope not now), suicidal because she simply could not cope with the mess and indignity that happens when you vomit and or faint because you are pooping.  Her mother begged me for any kind of help with that. 

There is none.

You simply have to endure it.

I really liked this bit in Michelle's post:

"I could never do that!"

Actually you can. You do what you have to do. You do things you never thought you could. Because there is no choice. It is simply life.

It is hard to explain, sometimes, just how much you endure because there is no other choice.  Sometimes, during Beached Whale Syndrome, in my darkest moments, I fantasize about going to the emergency room.  But there is nothing to be done.  No deflating.  No easing of pain.  For the former, the swelling will pass when the digestive processes have progressed.  For the latter, all non OTC pain medication stills my large intestines.  A single dose of prescription pain killer that might help me endure the pain can leave my large intestines still for 3-4 days.  It is not that I am constipated, then simply are still.  Nothing moves.  And eating, which one needs to do for life, makes the overall digestive problems worse.  I think you would have to put a gun to my head to make me take Percocet or morphine or any such drug at this point.

Two days ago, I had someone tell me that her friend with ALS started the Paleo diet and has no more symptoms.  Frankly, I doubt that.  However, I gave myself credit for not slugging her in the face for suggesting that if I follow the same diet I will be well.

FOOD IS NOT THE PROBLEM.  MY NERVES ARE!!!!!!!!!!!!

I want to scream and shout, but, these days, I hardly ever bother to explain.  Think about it.  With all the gazillions of dollars that has been put into spinal cord research, nothing can repair/regrow the severed nerve.  We are in the dark ages, still, when it comes to much neurological research.  Heck, HIV and AIDS are no longer a death sentence.  We can give the deaf sound.  And promising research has shown we are headed in the same direction with blindness, to a certain degree.  But once a paraplegic/quadriplegic, always a paraplegic/quadriplegic.  Adaptive devices, such as exoskeletons can help folk walk again, but nothing can help a severed spine.

There is very, very, very little research dollars going into dysautonomia.  There is no treatment and no cure.  The best there is, the absolute best, is a doctor willing to work with you to find off-label medication use to help with symptoms, such as how theophylline raises my heart rate and, thus, helps me faint less when orthostatic hypotension rears its ugly head.  

Because digestion is not all that easy for me, I have radically changed my diet (except for Taco Bell). Most everything I eat I have made myself, to lessen all the "unpronounceables" in my food.  I eat smaller portions, mostly, and often.  I am acutely aware when food is lagging in my stomach and try to keep to liquids until its moved along so as not to compound the issue.  But is it not about gluten or meats or legumes or casein or dairy or whatever type of food one wants to declare bad or dangerous or unhealthy.  It is about nerves that do not do their job when it comes to the autonomic functions of my body.

Like circulating blood.

Like digesting food.

Like maintaining body temperature.

Michelle and her blog visitors have commented on how difficult it is to get medical care given that doctors are reluctant to have patients whom they cannot really help, whose condition is not all that measurable on standard tests, and whose care often means a fight with insurance companies as to why a medication might be necessary.  

I get that.  

I live that.  

And I am still overwhelmed by the loss of my GP.

I am grateful for the cessation of this overly long and draining battle with violent nausea has ended.  I hope the Beach Whale Syndrome passes quickly.  And I am learning to be more ... prosaic ... about the illness that overcomes me when I need to expel waste from my body.

Could you?  Could you live with nausea, sweating, shaking, vomiting, and/or fainting just because you will so be or are pooping?  Day in and day out, a battle of some kind for that never ending bodily function?  Before dyautonomia became my constant companion, I would have most definitely had said that I would not be able to face a fraction of the pain and illness I do.  But I do.  Because I have no choice.

My dear friend Becky might be able to come for a visit this summer. I very much want her to come.  But I also fear her coming.  I mean, so many parts of the day I am lying on the floor of the bathroom or am curled in a ball or am drowning out symptoms with loud music/television, just waiting for something to pass, to ease, to end.  I wonder ... I fear, really ... what her visit will be like since I am less and less able to pretend that I am better than I am.

The other day my realtor stopped by when I was at a peak of the waves of violent nausea.  I just couldn't do much by way of conversation, though I showed her the weeping cherry.  Mostly, whilst she talked, I huddled in my mind and tried to at least look like part of my attention was with her.  It was obvious to me that she was uncomfortable with my wretched state.  When Electrician Man was here, I was Chatty Kathy, barely letting him get a word in edgewise so that I could hold at bay how wretched I felt.  I managed to hide my wretchedness from him and, thus, stave off any discomfort on his part over not knowing what to do or say to help, but I also exhausted him in the process.  Good thing that he is a merciful man.  

Both were relatively brief visits.  But Becky would be here for several days at least. I really want her here ... but I dread her not wanting to be here because my "here" is not all that pleasant or engaging or entertaining.  After all, who in their right minds would want to visit a beached whale???????

SIGH.