Some days…

Some days, you just can’t face the idea of cooking another dinner. I mean really, who needs to eat every single day?

Oh, right.

Me. I get positively ogre-ish when I don’t eat regularly.

As well as the short-ish people who live here with me.

And The Man We Call Dad.

And the birds. And the fish.

Okay, fine, I suppose I’ll have to admit it: Feeding the hoardes of hungry creatures around here is a never-ending task that absolutely must happen every single day. But there aren’t any rules about how that has to happen, or who has to do the cooking, or how often we’re allowed to do takeout.

In all fairness, I usually enjoy the process of feeding my family. From choosing menus and playing with ingredients to pushing back from the table with a satisfied sigh… it makes my heart happy.

Usually.

But not lately.

I’ve just been so tired of late. The dragons on the beach have been throwing lots of pebbles my way and it has been taking more energy than I have to cope with the daily drudgery of housecleaning and cooking after a full day’s work.

And when I’m tired and not in the mood to cook, and hungry teenagers come whining about how there’s nothing to eat in the fridge because it’s full of vegetables and fruit from the CSA box and nothing else (except the baked pasta with a deliciously browned mozarella top, or the leftover ham, or cheese in three varieties, or salad fixings, or carrots from our garden with 19 different sauces to dip them in, or leftover pancakes, or bacon and eggs, or any of 100 things in the pantry… because of course none of that counts for much when you’re truly starving), well, I get a little grumpy.

So this weekend, instead of caring for others, I chose to practice some self-care and delegate at least one daily chore to others.

Friday, Wild Wings took care of dinner, bringing us pounds of wings in a wide variety of flavours along with french fries, chippers, and one special order of fries with bacon, cheese, and sour cream on them.

But that wasn’t the fun part. This:

cards

This was the fun part. A couple of hands of gin followed by a laughter-filled round of Cheat (also known as Bullshit in settings where fewer manners are required) had us all laughing within minutes. So much so, in fact, that I didn’t mind at all that the kitchen forgot our appetizer and got not one but two of our meals wrong. It was annoying, sure, but we were all too busy laughing and cheating and laughing some more to care much. Besides, our server was fantastic and they comped the appetizer to boot.

There’s nothing like a truly great bout of laughter shared with loved ones to take the grump right out of a mother at dinner time.

And because my pebble is still heavier than I can easily cope with right now, Saturday night (also known as Halloween) was takeout pizza and Sunday The Man We Call Dad fired up the BBQ and made the most delicious steak and chicken dinner with roasted cheesy-bacon potatoes and green beans with crumbled bacon and bread fresh from the bakery down the road.

It sure is yummy when someone else does the cooking.

Advertisements

Muffins in the morning

There were muffins in the morning yesterday. There are often muffins in the morning around here, if you want to know the truth. Fast to mix up, only 20 minutes in the baking, they fill the house with that marvelous rich scent of vanilla and chocolate and flour and cinnamon, and are oh so delicious for breakfast when they are still warm from the oven. Muffins are a frequent occurrence around here.

muffins

Especially in the morning.

I have taken to getting up early in the mornings. I have blogged before about living with unpredictable chronic pain and how my day effectively ends at 2 p.m. whether or not I am ready for it to be over (and whether or not there are still things left to accomplish in the day). Early in the morning, the house is still and quiet. The sun has not yet started peeking through the windows. The birds are still quietly nestled in their nests and the neighbours… well, some of the neighbours are up. I can see their lights through their windows. Most, though, lie sleeping in houses filled with darkness and warmth.

Best of all, early in the morning, once I have run through a quick stretch and a not-so-quick bit of physiotherapy, I feel fine.

Oh, not fine fine, for this pebble I carry with me is still there as it always, always is. But I have discovered that I can add several useful hours to my day without making my end-of-day end any sooner. I can get up at 7 and function well until 2 when my body tires and my brain gets fuzzy and my pain levels climb to the point of exhausted frustration. Or, I can get up at 5 and function well until that very same 2 o’clock finish line.

So I have taken to getting up early in the mornings. I check my email. I read the news headlines. I feed the birds and the fish. I get an hour or two of work accomplished before I need to wake the kids. On weekends, I knit, or sew, or read for a bit while savouring the peace that has settled over the house like a loving blanket.

And I bake muffins.

Muffins I hardly ever get to eat, I should mention, since I have an almost teenaged boy in the house. Who loves muffins. And thinks nothing of eating two of them in a row, plus putting one in his lunch box and having another as an after school snack and maybe, if I let him, one for dessert after dinner, too.

And then, late at night, well over an hour after he’s been tucked in and chatted with and kissed and hugged and hugged some more, his lanky frame appears around the corner with his hair tousled from his pillow and his skin prickling with the sudden change from warm bed to cool air.

“Mom?” he says, as if neither of us know what’s coming next. “I’m hungry. Can I have a muffin?”

 

Quiet pain and loud

When we are young, our pain is loud. A scraped knee demands noisy tears. A bonked head absolutely requires drama.  A stubbed toe requires a yell and several minutes of hopping around until someone notices and asks us what’s wrong.

Biting your tongue? Loud and visual, since inevitably whatever it was that you were chewing on when you bit your tongue must make an appearance in order for you to show Mama exactly where you bit your tongue so she can check if it is bleeding.

But splinters are the worst. Splinters, silent when they enter your skin, still silent when the offended-against part is presented for inspection, they become the source of the most godawful caterwauling you’ve ever heard the moment the tweezers come out.

Pain, for a child, is often a noisy, dramatic affair.

Except, I have discovered, when they are truly, seriously hurt. The sorts of hurts that require ER visits and x-rays are always spectacularly silent. There might be a scream, then a moment or two of noisy tears, but that quickly subsides into a hiccupy  silence.

It isn’t an ordinary sort of silence, that quietness of pain. It is something else altogether, with the injured part cradled close and a sort of dazed look of confused agony as the realization is made of what pain truly is. It is the sort of silence that raises the hairs on the back of your neck and makes your heart speed up a notch.

It is ominous, that quiet pain.

Most of the time, my pain is a noisy pain. It is real, don’t mistake me, but it is a relatively minor beast. It is, if I manage it carefully, something I can push into the background of my life where it limits me but doesn’t disable me. I get cranky, sure. My body complains loudly by the end of each and every day (if by end of day you mean 2 p.m, since that is about when my body starts letting me know that it has had enough).

I liken it to having a pebble in your shoe that you cannot, no matter what, get rid of. What’s more, there is a dragon who sits on the beach and throws pebbles in my general direction, filling my shoes with more and more pebbles, day after day. For most of the day, I can catch the pebbles and stick them in my pocket. Annoying, yes, but ignorable for the most part. But by about 2 p.m., his aim has improved to the point where my shoes are full of stones and there is no more room for me.

But don’t you dare feel sorry for me. My pain-filled life is, despite the pain, still a really good life. It is a different life than I imagined it would be, but it is a good life because I choose to make it so. I may have a pebble, but most of the time I can carry it around in my pocket.

Except every so often, that pebble becomes a boulder and I cannot, no matter how hard I try, fit it in my pocket and ignore it for a while.

It stops being a noisy pain and becomes quiet.

It isn’t an ordinary kind of quiet.

It is the kind of quiet that has you realizing from the moment you first wake that today is not going to be a joyful day, no matter how much joy you try to infuse into it. It is the kind of quiet that suffocates. That oppresses. That steals your breath away and makes every movement a conscious choice to step off the beach and into the sea of agony.

Today is a noisy pain day. It is noisier than normal and rather difficult to ignore, but it is noisy.

After five straight days of quiet pain, I am grateful for the noise. Grateful for the ability to put my pebble back in my pocket and carry it around, squawking and squealing and complaining at the top of its lungs.

The overwhelming noise of it is so very much better than crushing silence.

Outside, the wind is blowing. The trees, now naked of their brightly coloured leaves, wiggle and sway under its influence. I’ve cracked open my office window to let some fresh air blow through despite the chill. There is snow falling in large, fat flakes pushed nearly horizontal by the wind, a welcome distraction from the noisy pebble in my pocket.

It is a noisy pain day, but there is snow, and I am ever so glad for it.

 

 

Can a pebble be a mascot?

Today’s WEGO Health challenge is to come up with a mascot for your medical condition / health focus. At first I thought ‘a mascot? Seriously?’, but then I realized… I already have one.

It’s true. I have a mascot. It lives in my pocket most days. It’s my pebble.

It is a very lovely pebble. Some days, it is a piece of Tiger Eye. The other day, B loaned me a silky soft piece of red stone that just begged to be played with. Sometimes I use a piece of purple amethyst. Other days, any old stone will do.

A pebble is a very forgiving mascot. Anyone can have one. It can be any size, or shape, or colour. And it works for every single health condition out there. You see, the power of the pebble is not in its shape or size or colour.

The power of the pebble is in the fact that the pebble is something separate from you.

Your pebble, your illness or condition or syndrome or disease… it is not you. It is a pebble that you are being forced to carry around, perhaps for the rest of your life, but it is most definitely not you. And when your condition has you despairing, you can always reach into your pocket, pull out your pebble, and give it a stern talking to. “Hey, pebble!” you can say. “You suck! You are a terrible houseguest! I don’t like you!” and then when you are done talking to your pebble…

…put it back in your pocket and find something better to do than talking to a pebble. Like reading a book. Or knitting. Or staring at all the tiny green growing things just poking their heads through the earth in the garden.

Because the thing about pebbles is that while you may be stuck carrying one around, you are not a pebble. You still have so much more life to live and wisdom to learn and mischief to make and fun to enjoy. Some things may be harder, or even impossible, given that you’ve got a pebble to carry around, but so what? Forget those things. Find new things. Stick your pebble in your pocket where it belongs: along for the ride, but definitely not the driver.

And remember, when it feels that your pebble has taken over and no one understands what your life has become:

You are not alone; I have a pebble too.

You are not alone. I have a pebble, too.

(It’s right here, in my pocket.)

My perfect day

::Sorry, this didn’t post as planned on the 14th. This past week, we said goodbye to GreatNana, we temporarily acquired two hamsters and two rats while friends are on vacation, and then half the family got sick with the nastiest cold we’ve seen yet this season. I just haven’t had the energy for tending to this space. Today’s challenge is “blogger’s choice” so I choose to post what I had written up and meant to post a week ago. Better late than never!

Today, WEGO wants to know about my perfect day. In the earliest days of struggling with chronic illness, I would look back on my life before and long for days where I could get down on the floor and play Lego with my son without paying for it in pain. I would wish for a morning shower where I could wash my hair and shave my legs, and then blow dry my hair, all in the same morning. I envied those mothers who talked about working all day, playing with their kids at the park in the evening, then going to the gym for an hour before staying up until 1:00 in the morning painting the livingroom with their husband.

In those days, my life was ordered in 15 minute bursts of activity followed by 45 minutes of recuperation time and I still couldn’t function at what I considered to be a bare minimum of normal activity for a woman of 30. I lived in the past a lot back then. I wished for everything I had lost when my health deteriorated. I wished for other people’s energy levels. I wished for a miracle cure. I dreamed of having a perfect day where all my symptoms just went away.

And then my wish came true.

When I was pregnant with B, for reasons no one could explain, I got better. It was sudden, this healing. I simply woke up one morning to discover that I somehow weighed 13 pounds less than I had the day before. My knees were no longer puffy and swollen. My muscles were not sore. I could move freely, without limitations – so freely, in fact, that my physiotherapist at the time commented on it. (Her exact words were “What did you do?? You’re better!” but I had no good answer to give her.) I felt refreshed, full of energy, and eager to meet the day.

And so I did.

For four amazing months, I did whatever I felt like, when I felt like it. Work was enjoyable and I didn’t fall asleep with my face mashed into my keyboard even once. I could chase my toddler around the park, give him piggyback rides, and crawl around on the floor pretending to be a bulldozer. I could work all day, play with my son all evening, and still enjoy an evening out with friends. I baked. A lot. I played. A lot. I painted the house. I dug up sod for garden beds. I stopped using my cane for the first time in two years.

Until, one November morning, it was back. My perfect days were gone, just as abruptly as they had arrived in the first place.

And I felt blessed.

In the meme I wrote a few years ago for Invisible Illness Week, I wrote about that moment:

I felt regret that it was over, but I felt blessed to have had such a long stretch without pain other than the ordinary sorts of pain. It was a reminder, I think, that I was a person independent of my pain, and that I couldn’t let my pain become me.

I haven’t had a pain-free day since then. I’ve had what I consider good days, and not-so-good days, and days that bring me to tears, but never since then have I had a day without pain. A day without making impossible choices. A day that isn’t a struggle to keep going despite it all, and sometimes a struggle that I find myself starting to lose. My daughter is seven. My son is nine. My daughter has never seen me not in pain, and my son was too young to remember it, and my spouse still struggles to come to terms with the many little ways I’ve changed since the pain came to stay.

It is still true. My daughter turns nine next week today, and my son is almost eleven, but it is still true, what I wrote back then: I am a person independent of my pain, and I cannot let my pain become me. My pebble… is not me. Will never be me. My pebble is a pebble that I must carry around with me, but it is not me. And I can still have perfectly dreamily wonderful days, even with a pebble in my pocket.

Take yesterday, for example.

Yesterday, I woke up early as is my habit, and once the kids were up and breakfasted and ready to face the day, we went outside and tackled the garden. Together we stripped away some of the dead leaves from the irises and lilies, and then we set up the frame for the hammock. We moved three little plants, planted some garlic in the garden (I forgot to plant garlic last fall so I am hoping that I am early enough to get something of a crop this year), and then they abandoned me to go play with friends. They played until noon, and then we walked to the library and went out for lunch. We stopped at the grocery store on the way home (they had just started setting up the garden centre so of course we had to peek in to see what they had), carried home more than a few books, and then curled up to read and read and read, just because we could.

Throughout all of this, I took breaks. I sat down periodically. I walked slowly when I needed to. I paused often. And each place we went, we found somewhere to sit for at least a few minutes. In short, I made accommodations so that I could enjoy as much of the moment as I could, and so that I could extend the amount of time we spent out together. And then, returning home, I rested up so that I would have enough energy and good humour to make it through the evening.

Before, I would have pushed too hard, hurt too much, and regretted no longer being able to do everything I could do before. Now, I know better. Now, I slow down, I strive to be gentle with myself, and I choose instead to see all the blessings in the day rather than the limitations.

I still hurt after so much activity. I still ache down to the bones. I still am tired beyond belief considering how little we really did. I am still cringing inwardly with the searing agony that is passing through my hips and knees with every step. I am still wishing for relief from the dull ache that has spread across my shoulders and halfway down my back. I am still striving not to claw at skin that has been invaded by a dragonload of pins and needles in reaction to all the activity. Nothing has changed. Yet despite the inevitable pain and fatigue that comes from a day full of activity, I choose to remember it as a day full of simple pleasures, shared adventures, good books, and lots of laughter.

I choose to remember a perfect day.

To do anything less is to choose to live a life of misery, and I refuse to do that. I choose instead to remember today and every day as being full of perfect moments. They aren’t perfect, of course. No day is, and that is doubly true when you are dealing with a pebble, but I tried living a life where I focus on trying to make my reality fit my wishes, and it only served to reinforce how much my life has had to change. How much I have lost. How much I can no longer do. So no, thank you. I refuse.

I refuse to let my memories be shaped by all the miserable, exhausting, painful moments. I do my best to accommodate my body’s limitations, I do my best to include moments of peace and joy and laughter and love, and I choose to remember the good bits instead of the bad.

I choose to make each and every day a perfect day, if only in my memory.

Life is ever so much more wonderful when I choose to see it my way.

Ten things I couldn’t live without

I high hopes of being able to sustain a daily post for the WEGO Health Activist Writer’s Month Challenge, but here we are on Day 13 and I have already missed several days of writing. Living with a pebble often means that I have to readjust my plans and take on only the highest priority items in any given day. This week, that has meant dealing with an ongoing chronic health issue for one of the kids (yes, kids often live with pebbles too) and putting my remaining energy into schoolwork (I’m in full time school this year and nearing the end), laundry, and feeding the family. Blogging is the first thing to go when my days have too many pebbles to handle with grace, and so I have been absent here.

Today’s challenge is to write about the 10 things you couldn’t live without. If the world were to end as we know it and I was to find myself stranded in the woods or on a desert island, what would be the 10 things I would want to have with me? A very interesting question, and one which makes me wonder: why only 10 things? Surely I could fit more than 10 things in a bag if I had to?

I wonder, too, how long I would be stranded and what resources would be readily available. Do I have to bring food? Do I have to bring water? What about shelter? What about health-related necessities, like a first aid kit, my favourite body pillow that lets me sleep comfortably at night, my knee brace, my cane, and an unlimited supply of painkillers?

What about the little luxuries, the things that make life bearable?

Assuming that I am being funneled to a refugee camp where shelter, water, and basic food is being provided, what little luxuries would I want to bring with me to make dealing with chronic illness while living in such a situation more bearable?

::10::

The hammock, which is the single most comfortable place to read on a lovely summer’s day. Good for sleeping, too.

::9::

The brightly coloured woolen blanket that is soft and thick and oh-so-very warm, even in the middle of a sudden summer downpour when the rain is falling in sheets and you find yourself soaked to the skin but happily warm as you hug a three year old girl tight in your arms under the blanket and marvel at the power of nature, the sheer quantity of water falling from the sky, and the power of wool to retain body warmth even when wet through.

::8::

Yarn and string, of any kind, though wool is probably the most practical as it has properties unlike any synthetic materials, such as warmth and durability and the ability to be turned into felt. What’s more, if you can find a sheep to befriend, harvesting wool and turning it into usable yarn isn’t very difficult at all. You can also use any length of yarn or string to play Cat’s Cradle or Chinese Jump Rope, or to tie your brother up with when he is being excessively annoying.

::7::

Knitting needles, to knit the yarn with, and a crochet hook for finishing and for making denser crocheted fabrics. And, if I knew I would have access to sheep, a drop spindle and a pair of carding brushes, so I could make my own yarn. Too practical to be a luxury? Perhaps. But for me, knitting and crocheting is also a way to distract myself from the reality of life with a pebble on my worst days, so it is also a luxury.

::6::

Needles and thread and bits of cloth. What can I say – crazy quilting and embroidering has become an obsession for me, and a luxury I would dearly love to bring with me wherever I go.

::5::

A deck of cards, a Mancala board, and a chess board. In other words, simple, classic games that can be played by people of all ages and that you will never tire of. Though honestly, you can play Mancala with a board scratched in the dirt and a handful of pebbles and it is just as much fun, if not more. The ultimate in portable strategy games, and one that you can learn in a minute and spend years mastering, if you ever do, and variations of it have been played around the world for well over a thousand years.

::4::

Seeds for the garden, vegetables, mainly, but also for an apple tree and a walnut tree and raspberry bushes and other edible perennials. While it may not seem like a luxury at first, to be able to provide for your own table is a blessing, and to be able to ground yourself in the daily chores of tending a garden is pure pleasure disguised as work. My garden has always been as much about meditation and healing as it has been about food and flowers, and it is a luxury I would want to take with me.

::3::

Books, as many as I could manage, because with a few good books along for company, you are never entirely alone. With the advent of the e-book and access to a power source to charge my e-reader with, I could keep us all entertained and informed and always growing intellectually.

::2::

A notebook and pencil. Writing is, for me, the greatest pleasure and an infinitely flexible source of entertainment. With a notebook and pencil, I could write no matter where I was. I could invent stories to entertain and amuse and distract from the reality around us. I could challenge someone to a game of Dots or Tic Tac Toe or Hangman. I could keep children busy drawing, and make them laugh at the inadequacy of my own artistic efforts. I could teach them math, or spelling, or anything that needs a little diagramming or illustration. I could have them keep a nature journal, or a diary, or invent their own comic book. I could challenge them to a paper airplane contest. I could make envelopes to save seeds in. With paper and a pencil and a little imagination, anything is possible.

::1::

First on my list would be my family. My family is an infinite joy, the core of my heart, and a very large part of what keeps me going each and every day. When life with a pebble becomes too much, the kids give me the reason I need to keep going and The Man We Call Dad lends me his strength, his empathy, and a solid presence to lean on when I can barely hold myself upright, both figuratively and literally.

Looking back through this list, I see a little comfort, a lot of distraction, and an even greater amount of sharing and caring and love. Most of the things I consider luxuries centre around keeping my mind off pain and the constant buzz of pins and needles.

The rest help us come together as a family in laughter and joy and just a little bit of competition, but in a way that I can participate in given my more limited mobility and the constant struggle with fatigue, because with my family by my side and a lot of joy in our hearts, life is so much better.

Keep calm…

Today’s WEGO health blog challenge is to invent your own “Keep calm and carry on” poster. My all-time favourite is the one created by my sister:

Panic and Wreak Havoc

It makes me smile every time I look at it — the sort of smile that has your mouth turning upwards and your eyes crinkling at the corners and other people asking “What’s so funny?” because you just started smiling out of the blue.

If I were to invent such a poster of my own that relates to living with chronic illness, I’m not sure I could improve upon the original. So much of life is about finding a way to carry on despite the limitations imposed on you by your illness, and finding a way to carry on as gracefully as possible.

For me, knitting helps. It distracts the mind and keeps the hands busy so that I don’t claw through my skin in an effort to relieve the pain and pins and needles that are my constant companion. But, someone else has already invented ‘Keep Calm and Knit On.’ Someone else came up with ‘Keep Calm and Cast On’ too.

More than knitting, laughter is the best medicine. Laughing with friends is even better, especially when it comes on the heels of mischief making of one form or another. I do believe my poster would have to read ‘Laugh Lots and Make Mischief.’