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.

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