Breathe in…

Every morning I awaken into a body that turns on it’s systems – an inevitable pain signals – in a slow and drowsy way. I come to full consciousness about the same time my headache comes fully online, the pound-pound-pound in the back of my skull as familiar to me as breathing.

Then I notice the light streaming in the window, whether it’s soft or bright, shadowed by storm clouds or shifting from wind through spring leaves.

Most mornings there is a soft, wet dog nose pushed impatiently against my face, snuffles and softness rousing me from sleep. Sometimes there is a hot cup of coffee and the warm, firm hand of my husband on my shoulder as the mattress dips with his weight beside me.

I eventually make it downstairs and out to the cold plunge where a few rude seconds of shockingly cold sensation relax into 10 or so minutes of soaking while I watch the birds fly to and from the branches and the feeders or listen to the squirrels tell off the chickadees.

I watch the dappled sunlight and feel the breeze and let the cold, icy water sink into my bones as I contemplate another day in a body that spends as much time trying to kill me as it does trying to live.

I rise, and often as not rinse in the hose, showering off with garden friendly shampoo and conditioner in my swimsuit so my brand new pussy-willow tree can have more water.

I notice the small changes in the temperature, the birds, the season. I hear my neighbors call out to my pets in their porch window as I rest. I hear the sounds of the neighborhood, dogs, music, sirens, people.

It passes over me, through me, around me.

On good days I find occupation; cleaning, shopping, cooking, organizing, arranging, pet-washing, walking, physical therapy, art, candle making, sewing. On bad days I find distraction; reading, t.v., movies, art, sewing.

I tire, always sooner than I want to. My energy lags, my aches intensify. My body gives me the signals I ignore at my peril and I set down whatever I am doing and begin to end the day.

Breathe out.

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Folding in on myself…

I feel as though I am folding in on myself, choosing myself for company and comfort more and more.

I do have my family and spouse and ever since my friend moved in with us I have felt little to no need to leave the house for companionship.

She, like me, lives in a body with designs on a difficult existence and I find the comfort of sharing life with someone who really gets it so fulfilling I fear my inner goblin has begun to take me over.

It’s just hard, you see.

Hard to live each day in a body that simply never lets you forget that you are supremely fucked.

I never feel good. I haven’t felt good in over 13 years.

I feel less bad sometimes.

I have amazing experiences that push the less bad into the background sometimes.

I’m really good at giving the appearance of doing pretty damn ok.

But I hurt. Somewhere. A lot. All the time.

I’m even improving and getting off medications and having wins and I’m still hurting all the time. Just, less.

SO yeah. It’s really hard to carry all that around all the time and then go somewhere with people who love you and NOT just dump it on them every single time you see them.

So I don’t. I talk about ANYTHING else.

Then I feel like I am not talking about the thing that most impacts my life and that nobody really knows me anymore.

Then I feel like who could really want to know me when what I have to talk about is just hurting all the time?

So I fold in on myself. I choose my own company.

I choose my own comfort.

Anything worth doing…

is worth doing poorly.

Do you have a pile of clean laundry in a basket waiting to fold and put away? Is it taunting you with recriminations on just how unable you are to sit through the immensity of that chore?

Fold and put away whatever is on top, and walk away.

Are your dishes piling up because the dishwasher is full of clean dishes you don’t have the energy to put away today? Hand wash your coffee cup and set is on a hand towel to dry.

Walk away.

Can’t shower? Wet a wash cloth, add soap, wipe the stinky bits down.

Can’t bring yourself to brush your teeth? Rinse with mouthwash.

There are no actual rules to how you clean, yourself or your house, especially when you have a chronic illness. Leave things half done, only do a little, rest 187 times as you do a chore. Find the rhythm and method that work the best for you – THAT DAY – and use them.

Then forgive yourself for not being a fully able bodied person and congratulate yourself on having folded a sheet, or washed your armpits, or microwaved a bowl of soup.

The stress and guilt of the things we cannot do is just as exhausting to deal with as our disease. So don’t engage with them.

You aren’t supposed to be able to do as much as someone in good health. This doesn’t make you less than, it just makes you different. I bet there are a million small ways you make life better for the people you love, even if being there to listen when they need you takes the place of hand sewing all their Halloween costumes.

There are so many ways to show up for people, we are not limited to only those ways commonly used by the young and the healthy.

Be safe and be well.

Managing life with chronic illness requires savvy spoons