I haven't been writing much but I need to get back into practice so I thought I might as well just empty my head on the page for a bit. Might clear out the cobwebs and help me to get back in the swing. The haze of exhaustion and pain meds is great for rambles.
It always amazes me that I can manoeuvre my body into positions that don't break my sleep. That in the depths of exhaustion I can roll and twist. Flop back and forth until that sweet spot is found. A precision that is broken when my breath loses its rhythm and my lungs sharply overcompensate. Or a slight change in the outside temperature draws the internal warmth across my body thanks to poorly insulated brick and steel. The barest caress of air molecules on skin and I am awoken, gasping and trying not to vomit from the pain. The micro-millimetre of difference between agony and sleep is breached and I am I am frozen.
Move or be moved and agony results. I don't speak for fear of tensing already hyperaroused nerves. I don't speak to further delay the pain that I already know must come. Caught in limbo, knowing that movement will both relieve and crush. The spot in my back and hip that only ever hints at healing takes every opportunity to let me know it is still there. Plotting. Biding its time. I brace, at least mentally, and commit to what must be. Tears and bile rise as I am once more impaled by pain. I mutffle the cry in my pillow as Mr Grumpy sleeps on oblivious.
Four days in bed a necessary evil for a body pushed beyond its limits. The exhaustion, nausea, pain, weakness must be managed. There's no choice in the matter. Fighting through isn't an option at this point. The lead up I played bad patient doing all I should not. Stopping when I know I should is not always practical just as it is not always what I need to maintain a sense of self. But there are draw backs.
Cantankerous. My body is cantankerous. It punishes me for pushing it beyond it's limits. When I acquiesce and rest, it punishes me further. And so my sleep is broken by pain now only relived by standing upright. Standing upright that leads to passing out and all the precursor symptoms that make my daily life a challenge and lead to rest days in bed.
The pain in my lower back and hip are always there though immobility bought about by an overstretched Autonomic Nervous System increases the intensity. I am stuck again where my normal Dysautonomia symptoms are slowly settling but not enough to make being up and about in the house a real option. Just enough for the restless agitation to start up. The unscratchable itch that make me irritable and terse. Offer me a drink or ask me about my day and I may rip your head off. Don't ask and I will poke the irritation like a sore tooth and run through expletives in my head. And the pain spikes as I shift my weight, or pick up my glass of water, or stay still and lose myself in reruns on the screen.
Pain is suffocation. Pain is dropping to your knees as your vision darkens. Pain is waves of nausea, a shot of bile to the back of your throat to make you gag and spasm, shooting off yet more pain. More more more.
Heatpacks. Gentle moves. Pain medication. Meditation. Layers of aid. Layers of nothingness.
I try to read and find myself at the end of the page not remembering a word. I try to write and the words struggle through the concrete thick sludge in my head. I can feel the ramble.
Its icy outside. Spring has begun with icy winds, rain, hail and in some parts snow. Our fledgling vegetables are throwing up flowers. Small purple pea pods begin to emerge. The chickens are all laying. Their egg song fills the air echoing up the sterile dark corridor created by the twin brick walls of our and our neighbour's homes. The sun peaks under the blinds in random five minute blocks. Sharp and blinding. I scroll through photos of surrounding snow fields. Tree ferns bowing as the tiny flakes force them into genuflection. Caramel coloured cows stand in stark relief against their pure white background.
My bedside table is piled with the detritus of illness. Small mismatched cardboard boxes their silver and plastic contents half spill across dark wood. Ear plugs, tissues and empty water glasses. A half-filled dosette box balances precariously over the table edge. The accoutrements of this life scattered across the table and off, reflect the irritation and weakness that have swamped the last few days. In between, the pink and gold hand cream, the small round metal container of lip balm gold embossed on green. A pile of to read books, small ceramics and decorative boxes that remind me of kindness and friendship. Small pieces of calmer waters.
I can see the edge of my shower through the ensuite door and strike a bargain. If I can shower. Just shower. I'll be happy. If I can slough off the film and feel the water on my skin I'll be alright for the next few hours. I'll roll myself up in soft pajamas and pop the top on my handcream so I can smell its warm fragrance. Tomorrow I might work up to slathering it on my fingers. I'll rub the blood back through resistant blood vessels and the mottle that is livido reticularus will retreat for a few seconds. The purple bruise that radiates up from my nail beds will subside and I will breathe in marshmallow and peach.
But for now. I want to feel the heat beat on protesting skin and muscle. I need to stretch as the heat finally infuses my icy body. To loose myself in the sensation and sound. Slump on my plastic chair, head resting on the glass. Submitting to the
The day continues to flow.
My son brings me the freshly lain eggs so I can feel their warmth in my hands.
My skin now smells like oatmeal and honey.
Warmth and softness filters through my being thanks to floral flannelette.
And the sharp edges are worn a little smoother.
Your posts always leave me feeling a bit more sane and add glitter to the craziness.ReplyDelete
Glad they can help a bit. Sometimes it's just nice to know you're not alone in the quagmire. :)Delete
Michelle, I'll pass on the cup cakes, but I'm sending you hugs from one spoonie to another. Lucky for me I'm not quite in your situation, but I do have an understanding. I hope things improve for you.ReplyDelete
Thanks Robyn. It'll pick up again I'm just a bit over it at the moment. Sometimes it's nice to put all the dross in my head on the screen and sort of let it float off into the ether. I always feel clearer afterwards even if my body is still being cantankerous.Delete
Your rambles are reality.Delete
The ying and yang of dysautonomia. I hate to acknowledge the dark side of the disorder. But the rambles are the reality- I keep mostly to myself. The rambles they make me live more fully when they settle back to normal dysautonomia.
We are good people as we ramble along- who else can say wow you are marvellous- one who knows how difficult turning in bed can be.- how long you consider is it worth it to even go for it
You are an invisible ninja warrior ---- the lucky ones get to see your ninja strength
Nice bathroom.... Great dog to look at when you just need to lay down on the floor for a few hours
Hi Michelle, just stumbled upon your blog. You describe the feelings so honestly that follow when your life is turned upside down by chronic illness. But nevertheless your blog never turns into a pity party and reminds us not to forget to live. Thank you so much for that! Greetings from a fellow spoonie from Germany, Viola.ReplyDelete