Up and down, awake and asleep...

I do not really wish to be up all night and sleep all day, but neither do I wish to be up all day.  Being awake during the day increases the loneliness that I feel because I know that the rest of the world is out there doing things.  And I am not.

Monday, I had doubt.  I had great doubt about being the person who spends her life in the GREEN chair ... or currently on the couch trying to sit up as much as possible.  Monday, I had this great doubt, certain that I could be someone, that I could be out there doing something.

Tuesday morning, I awoke abruptly extremely ill.  I awoke abruptly violently nauseous, weak, tremulous, writhing in innards misery, shocked with rectal pain, and unable to be vertical for very long without fainting.  I was very ill and very scared.

I was very, very, very ill.
I was very, very, very scared.

In the afternoon, my blood pressure and heart rate were so low, despite guzzling Gatorade and peanuts and pretzels, that I ate a small spoonful of salt.  It was disgusting.  And didn't much help.  Afterwards, I needed more Zofran.  I went through a lot of Zofran.  I've been going through a lot of it.

A good day.
A bad day.
A good day.
So very many more bad days than good.

But good is relative.  Sometimes, I think that my "good" days are ones most people couldn't handle.  Other times, I think that I am just a big baby.  Living with dysautonomia is a wretched existence, though.

It's been a roller coaster for me, of late.  I mean, Monday, I kept thinking that I should be more than I am.  Monday night, I spent over 5 hours on the phone helping someone, eventually doing a tax return.  When I hung up, all I could think is that all of the investigating and shopping and account creating and tax-returning and such that I do for others, no one would do for me.  I did not even get a thank-you.  The selfish wretch in me really wanted thanks.

Yesterday was such a battle to exist.  SIGH.

Falling asleep so early, as I have done more often than not, means getting up so very early.  My arthritis will only allow me to rest in bed for so long.  But I also can only sleep for so long before all I end up doing is stewing, failing at sleeping.   That means I was up at 6:10 this morning.  If you know me, you're probably trying to pick yourself up off the floor at that.

I worked on an editing project, once ensconced on the couch.  Only after I sent the email of the finished draft, I found myself really discouraged.  I had done this truly outstanding craftsmanship, especially given my source material, and no one would really notice.  Or, most likely, thank me for the home run I just hit out of the ball park.  For a short while, I had been someone who did something.

Getting up so early meant that I had lunch around 10:30, having made a batch of Pasta alla Vodka.  I ended up having one serving fresh and put another nine mason jars in the freezer.  I need to do some more cooking, soon, when I can do a bit of grocery shopping for missing ingredients.  I made the dish using shells instead of mezze penne.  Why do I think shells make a pasta dish taste better?

It's 2:00-ish now, and my day is nearly over.  I cannot be up more than 12 hours without falling asleep sitting up.  I'll try.  I do not wish another long and lonely day being awake with others out there being someone and doing something.  It is so much easier for the bulk of my waking time to be when others are home, too, with their personal lives swirling about them.  Professional life checked at the door.

Michelle made another timely and comforting (to me) post about the life that is Dysautonomia.  I am so very thankful to know that, in wretchedness, at least, I am not alone.

Sick Fatigue

A couple of weeks ago I sat in a cafe with Mr Grumpy and ate a croissant. It was toasted and stuffed with cheese and ham. Delicious, but not allowed. Everything in it was on my No list, but I had it anyway. A moments pathetic, although rather tasty, defiance. Mr Grumpy just looked at me when I said what I wanted and we sat in silence as I ate. He was well aware that I was not in the mood for conversation. And I was beyond even attempting a pretence of civility. It wasn't him or my dietary restrictions. I was just beyond over things. Another scan, another wait. All after another disappointing specialist appointment. I was just tired. Being ill is exhausting. Being chronically ill is a continual state of exhaustion that reaches beyond the physical.

I am in a bit of a holding pattern at present. I continue to be ill. I continue to deteriorate. I continue to have no real clue as to why. Apart from my original medication and my pacemaker I have had little in the way of concrete wins. I am luckier than many others in that I have belief on my side. My doctors believe that I am unwell. Before becoming ill I had no true understanding of just what power that holds. For many in similar situations no one believes them. There doctors palm them off as having some nebulous form of mental illness and go no further. I at least have doctors who acknowledge I am unwell and there is a cause somewhere. Just what that cause may be, continues to remains elusive. A hint here or a hint there, but none of the pieces fully fit. I listen to the words at each appointment, "It's looking more CNS related" before I am sent on my way. I am monitored far more than I am treated. And get to shell out both cash and limited energy for the privilege.

I am at the point where lots of little symptoms crop up. In isolation they are easy to deal with. Combined, it is exhausting and I feel I am once more at the plate spinning stage. Trying to maintain my game face when confronted with it on a daily basis becomes a chore. I flitter around doing small meaningless tasks. Some I complete. Some I don't. The things I love like writing, are harder as my body strives simply to move forward, let alone trying to also string words together. Even the flippancy of social media is trying and beyond me. I float on the periphery of the superficial and the real worlds. But am simply too tired to engage.

Last night the pain in my abdomen became so severe I dropped to the floor as my bp plummeted in response. Only to lie curled in child's pose on the carpet while my family had dinner and Mr Grumpy waited for me to be ready to accept his steadying hands to move. I lay there breathing through the worst of the pain, eyeing the dog fur on the carpet and feeling miserable. Not just the pain and the joy of breathing in dog dander, but the knowing that at present my doctors are either unconcerned or have run out of ideas. This is how so many exist and I can't help but wonder at the hidden populations who live just like me everyday. On the odd time I come clean and lay it out for my doctors they are horrified and I am showered with pity. Then sent on my way with nothing resolved. My parallel universe of illness intersects with the regular world in jagged moments before diverging again and again.

Some days I want to simply crawl out of my skin. I want to shout at the injustice. But mostly I lie defeated and tried. So so tried. The weakness in my muscles spikes at times and I can't lift myself. I wake in the morning and my face muscles refuse to move as I want. My gait is disjointed and I lurch from wall to door frame to bench to couch. Wait for the meds. Wait for my body. Wait. Mornings a waste. A small respite in the afternoon. An evening of exhaustion. Times like these it is hard to keep the wolves at bay. Especially when I know tomorrow will be the same.

I exist in a medical purgatory. Never quite breaking free. Just trying to make it through. Periodically the planets align and I can function for a while. I can get up and potter. Do things I enjoy rather than focussing every shred of energy in simply existing. But I work for it. As hard as any job. I work on it every single day. Existing is a 24 hour, 7 day a week endeavour. And I've been on the job without a RDO for what is now more than 8 years. Walk a day in my shoes. How I hate that phrase. A day is a doddle. There's a special burden that comes from time. From months and years of unrelenting illness. Some days I can push it to the back of my mind. But of late the stagnation in my treatment options lends itself to a sense of suffocation.

I withdraw into myself. A defence mechanism I have employed since childhood. I withdraw and put up the barricades. Part of me wants to hide but part of me still wants to hold onto a tangible link to the outside. I put out feelers into the world before retreat is sounded again. Too much. Too soon. Every sound. Every contact. Too much. Strained nerves make me irritable. I snap and then beat myself up for the snap. My irritation peaks and I become directionless. So the shutters come down and I stew in a swamp of amorphous displeasure and irritation at life. Until something in the back of my mind tells me to kick my feet and wave my hands for help. Both my own and from others.

After I'd finished my croissant I asked Mr Grumpy if we could just go sit by the lake for a while. I needed the air, the trees, the sound of the water and the birds. I needed to be anywhere but where I was right at that moment. Claustrophobia courtesy of simply being in the world. The sounds, the space, the people and the noise. Noise in my head and noise in my being. He suggested the beach instead. So we went home gathered some towels, our youngest and Freyja and set off. Each kilometre and each tree wiped away a layer of burden. Bit by bit open paddocks and bushland took another slice of the exhaustion. I watched as the red gums changed to scrub and twisted banksia and lush flood plain to sandy soils. And finally sand dunes and salt scrub. The long blue/grey stretch of the Bass Strait meeting the clear blue skies overhead.

Near empty beach. The sound of waves on the shore. The smell of salt and the detritus of the sea strewn across the sand bar. Warm sands and gull calls. I stood in the water and let the waves wash over my feet. Sinking deeper in the sands. I stood there until I could stand no more. Only then was I happy to ask for help and a steadying arm to get me back to our encampment higher up the beach. Only then did I feel the tightening in my chest and head decrease. Only then did I feel I could unbend my shoulders and breathe.

He knows me well that husband of mine. And he tends my wounds with a precision built of years and tenderness. Wash my wounds with salty water and lay them bare to clean winds and the last rays of the sun.

I am so tired of being ill. But for now, my salt and sand-filled stockings and the new additions to my shell collection give me respite. I run my hand over the sea-smoothed skin of the drift wood we brought home and knock more sand out of the line of holes at the base of my walking stick. Remnants and reminders.

Now I can pick up and go again.

Next appointment.

Next test.

Next.

Michelle


I am not the only one weary with being ill.