Understanding...

Michelle wrote another really great post on her dysautonomia blog:

Morning are the worst. I'm unsteady, nauseous, my blood pressure non existent, and life just seems to suck more. Not that I have ever been a morning person. Way back in the dim distant past that was my pre-sick life, I was a night owl who greeted mornings with dread and expletives. Now I have the added pressure of a body that dehydrates overnight until I feel I must look like a dried up prune (mirrors are avoided at this hour for fear I'll be turned to stone should I glance at one. So the prune thing is supposition. I may be more sultana than prune, who knows). I also have body that hates to be upright at the best of times and is very reluctant to move from a night spent horizontal when Freyja starts whining at the door desparate for her morning pee.

This morning as I stumbled into the bathroom I hit my knuckles on the door frame. Hard. So hard it made Freyja jump. I let out an instinctive yelp. And then realised it didn't hurt. Not a bit. I looked down at my red and swollen knuckles. I'd heard the noise. I could see the result. But nothing. No pain. Even in my muddled morning state I had a hmmm...? moment.

I flopped down onto the tiles and looked at my hand which is apparently so inept that it can't even register pain. Sure, I pushed on it and I could feel that. But still no pain. Another defective part of my body to add to the list.

Neuropathy for the win!

It's a weird beast. How can I be in so much pain in some parts and so little in others? Yesterday, I lay on my bed trying not to cry as the pain shooting through the toes of my left foot was so intense. Today, I whack my hand and nothing.

It's not the first time.

I cut my leg whilst shaving and left a blood trail round the bathroom. If I hadn't noticed the blood I would never have known I cut myself.

I've pulled rose thorns from my skin, only noticed because something was tugging on my clothing.

I burn myself on the stove on a regular basis. And the oven. I have been burnt by steam and by splattering oil.

Even when I sliced my thumb the other day the pain was not what it should have been given I had a 1cm cut deep through my nail and top of my thumb.

When I had my last Evoked Potentials test done, the tech kept asking me if I was okay as he kept turning up the device while I sat there unmoved.

Temperature sensation is long gone in my legs and halfway up my arms. I have a spot on my back that is still able to register temperature but no where else. If not for the raging red colour on my skin I wouldn't know the shower was too hot. And I've had burns from heat packs I didn't know had been overheated.

And yet, as I sit here typing I can feel my feet burning, only somewhat dulled by the Lyrica. I can feel the tasaring in my left foot. And the small spot on my lower back that feels like you are rubbing salt and ground glass into an open wound from just the pressure of the air in the room.

And the pain on the right side of my stomach that my gastro decided was neuropathic. It varies from knives, to Knives, to KNIVEESSSSSS!!!!!!!

One part the fiery pits of hell and tear inducing pain, another nothing but void.

I can't even be broken in a consistent manner.

Maybe that's why my doctors keep telling me I'm "special."

Neuropathy is a large pile of suckage.

Michelle :)


For me, a light bulb went off:  I never thought about going so long without drinking during the night is part of what makes the mornings harder.  I have to get up to fetch ice packs throughout my time of sleeping, so it would be easy to also take a moment to drink a little bit.  Of course, I would have to remember to do so.  Starting new patterns is so very hard for me.

My, does her blog help me!

Knowing that someone understands is incredible.  I mean, really understands and is so brave to put it all out there.  Bluntly.  Because it is not an understatement to say that the burden of treatment and management of dysautonomia lies more on the patient than any medical care provider.  Too many of the latter simply do not know about or understand the condition.

I also liked that she wrote about pain, because I write more about the pain that I cause myself by laboring than the strange pains I oft have to battle.  I mean, of course I've bewailed the misery of innards writhing for quite a while now, but I do not think that I have written much about the flashes of searing pain that sometimes crops up here or there.

I gasp.
I close my eyes.
I try to focus on the fact that nerve wonkiness is to blame and it will ... eventually ... pass.

When you are ill or struggling or both, some of the most powerful "medicine" that you can be given is for someone to let you know that you are understood, that you are not alone in your experience, even though no two experiences will ever be completely the same.

Last night, whilst walking, just one block before mine, a loose LARGE dog came running out from the alley.  I screamed and grabbed up Amos.  The owner chased down her dog and clipped on its leash before it got to us.  I was so afraid, trembling so much, that I forgot that I had my pepper spray and could have protected us if the owner did not get there in time.  I was also so ... defeated ... by how much fear of large dogs remains with me.  And I struggled with great anger at the owner for carrying her leash instead of actually use that.  This is something I have seen many a time ... owners who carry leashes, but do not use them.  That is not how leash laws work.  SIGH.

Disheartening, too, was that in my fear, I thought not of God's protection or provision or any such faith ... trust.  I was just consumed by fear and knowing that I am ever so much weaker in body than when Amos and I were attacked by the pit bull. I knew I wasn't going to be able to save us again the way I somehow managed last time.

Finally, I will admit that I have extremely uncharitable thoughts about folk who walk their dogs in the alleys.  I mean, I cannot think of a good reason to do so.  Alleys cannot possibly be safer than sidewalks.  And walking the the alleys riles up dogs in back yards far more than walking on the sidewalk or the street.

Today, my throat is still sore from how loudly I screamed.  And it feels as if my heart has yet to calm down.  Amos seems better, though.  Whilst I did bend to pick him up, he wasted no time in scrambling to my shoulders and trembled for a rather long time last night.  I wonder if either of us will make it out the door tonight.

But back to the blog post ... being so afraid in the aftermath of that encounter left me feeling lonelier than ever.  It was good, then, to have Michelle's post arrive in my inbox.

Having been plastered to the floor more of late, I could relate, though differently.  I was trying to decide if I would rather I have more of one symptom or another.  Silly waste of time, I know.  But when you are battling one thing, something else always seems like it would be easier.  Unable to be upright seems more palatable in thought when beset by overwhelming nausea.  But being plastered to the floor floor seems worse than nausea when you are trapped by orthostatic hypertension.  There is no pill that I can take to alleviate the problem ... no zofran remedy for syncope from movement in your bowels aggravating your vegus nerve.  

Of course, fainting while you are pooping is always worse than merely being plastered to the floor until whatever offending bulk has moved along enough to bring respite.

Riding waves or being plastered always seems worse than having a chill, but when you are so cold that even the air beneath the covers touching bare skin sets your entire body to trembling, nausea and syncope seem far, far better.

Along the same note ... being understood ... I liked how this article pointed out how trauma can affect the brain, and thus the memory.  The article is a reminder, first, that rape is trauma.  I think that folk forget that far too easily.  They forget the profound on-going effects any trauma can have on the body and expect those who've experienced trauma to be and act and function as if those effects end once the traumatic act is over.

This might sound strange, but my sister cannot understand why I have absolutely no memory of my brother having a bird in high school.  When he was hospitalized, my mother asked my sister, who was not living in our home, to take care of the bird.  My sister cannot understand why my mother didn't just have me take care of it, given that I had so many other ... chores.  But she really cannot understand why I do not remember the bird, especially since I ended up being a bird momma for a decade or so.

So, my sister thinks that my brother's hospitalization was after I was in college, and thus out of the home.  But it wasn't.  I simply cannot remember the bird.  On-going trauma and on-going effects of previous trauma explain why I do not remember.  To me, though, the fact that I cannot remember the bird, a bird living in my own house, frightens me.  Frightens me to think of the other things ... lost.

The article had gotten me thinking, again, how poorly I was treated at the emergency room after the pit bull attack.  Not only did no one explain to me that the physical reaction I was having in my body was a direct result of the chemicals released in my brain during the trauma of the attack, but I kept being told that I needed to calm down.  When you have adrenaline, cortisol, and norepinephrine pouring through your body, you are not capable of calming down!

Too, I left the hospital as dirty and as bloody as I arrived.  I am convinced that is why one of my wounds got infected.  The odd thing, that I don't think I recorded here, is that my seat mate at the symphony (the one who's husband died unexpectedly just a while ago) brought the doctor who treated the infection since my GP was out of town at the time.  I kept trying to figure out, after we were introduced, why it was that she seemed ... safe.  During intermission, when I asked how she and Eleanor met and then what she did for a living, I finally figured it out. Funny how her name was still floating around in my cheese hole brain.

And that infection brings me back, yet again, to the blog post.  The pain from the infection in the wound on my knee was so bad that I could barely walk.  I would have these flares of agony that would cause me to fall to the ground.  The woman who drove me to the doctor's office had to track down a wheelchair to get me to and from the car.  Yet the doctor was not all that convinced infection had already set in.  The wound looked bad, but had no redness or streaks around it.  She ended up giving me a prescription for a very powerful (and expensive) topical antibiotic, I think, primarily because of my level of pain.  By the second day of using it, the pain was 75% better.

That infection sums up so much about dysautonomia me.  I have extremely disproportionate responses to things ... medications, cold, pressure, position change, blood sugar, etc.  I also feel things that normally would go unnoticed, such as my heart rate.  Medical personnel (and friends and family) have to understand the idiosyncratic and idiopathic nature of dysautonomia in order to help manage the condition and be supportive.  The former is, essentially, treating the symptoms in any way that provides a measure of release, such as off-label uses of drugs like my most beloved zofran and the barely-tolerable-but-necessary theophylline.  The latter is not saying hurtful things, things that dismiss or minimize the battle.

Just change your diet...
You need to just calm down...
A blood sugar of 70 is just fine...
Just exercise more and you will get stronger...

SIGH