6:30 am. Thor’s alarm goes off. Was I asleep? It is still dark outside and like every other morning, I have nowhere to go, so I roll over, but my mind has already engaged, or rather re-engaged, stuck on the same LP track (a function of this disease) that has been running through my mind all night. I get up, shuffle to the bathroom and while I relieve myself, take my mornings puffs of inhaled steroid to kick-start my lungs.
[Test #1: Can you find a reason to get out of bed when you’ve lost your ability to work, and no one needs or expects anything from you?
My answer: The will to live is stronger than even I might have suspected. Part of me wants to stay with the oblivion of sleep, and another part of me has things she wants to do – life to live – so, yes, I am motivated to wake up each morning and embrace a new day.]
In the kitchen, I turn on the kettle and prepare my over-sized mug for the first cup of tea of the day. Thor is already in work mode – checking his emails – coffee in hand. Tea made, I shuffle back to bed where I start up my own computer and turn on the morning news. I check for emails – mostly advertisements, some postings from blogs that I follow (which I’ll read later) – I am too out of the social loop to receive personal correspondence anymore.
[Test #2: Who are you when many of your relationships have gone by the wayside?
My answer: I am old enough to know that relationships come and go throughout life and while they help shape me, they do not define me. A side effect of losing so many connections is that I am left with a handful of friends whose staying power continually warms my heart.]
Next, I check my online Scrabble games to see if any of my random opponents have played their turn. My brain, more specifically working memory and executive functioning, are affected by this disease. Playing Scrabble is a recommended therapy. Several games await my turn, so I play them.
[Test #3: Loss of brain power: brain fog, confusion, memory loss, etc.
Reality: I lose patience with myself, especially when I make mistakes that affect others. A sense of humour helps, but I do find that this challenge makes me withdraw more than anything. Loss of mental capacity is very tiring. ]
7:30 am. Time to make breakfast. What to have? My go to is instant oatmeal, but on thinking back to what I ate last – sweet potato and a slice of chicken at supper – I think my stomach could handle a bit more. I decide on gluten-free bread toasted with two slices of precooked bacon. I take it back to bed with me and change to the CBC news, rechecking the status of my Scrabble games.
[Test #4: What happens when you no longer have the energy to make optimal life choices?
Reality: For four years I followed a careful vegetarian, dairy-free, gluten-free diet. Every weekend I shopped for and cooked special meals to enhance my well-being. Now I am unable to shop for food, and depend on Thor for much of the cooking, and as his name suggests he is a meat-atarian! Limited energy equates with limited choices. I have let this ball drop for the time being… to be continued.]
News today is all about the TTC strike, and since I don’t even live in Toronto, I decide that listening further is wasted energy. I shut it off and turn to Facebook, reading about the trips my once friends, now acquaintances, are either taking or planning, what they’re making for dinner, or who they are partying with. I switch back to Scrabble.
8:10 am. Thor is dressing for his first morning meeting then stretches across the bed to visit with me for a bit. We talk about his day. I can feel myself getting sleepy. As he gets up to leave, I will myself out of bed again, taking my dirty dishes to the kitchen, making mental note of the work that needs to be done there, then back to the bathroom where I relieve myself, brush my teeth, and think about washing my face, but now I am too tired. I go back to bed instead, choosing a Sonza playlist for sleeping and setting it next to my pillow.
10:36 am. I hear Thor come home, enter the bedroom and check on me, but I am still sleeping and not ready to get let it go. I glance at the time, and notice the faint calling of my bladder, but give in to heavy lull of sleep.
11:47 am. The insistence of my bladder is too strong to ignore now. I get up, amazed that I have slept so long. Thor, hearing my movement, calls that out that I have an appointment in two hours. This time I do wash my face, apply some cream and brush my hair. Sitting facing the dresser, I wonder what to wear and settle on the usual – yoga pants, a t-shirt, and hoodie – my uniform.
I feel renewed after such a long sleep – the best I’ve had in days – so offer to make lunch. Normally, I would nuke a bowl of soup, but I know Thor prefers it heated on the stove, so I pour the pre-made soup into a pot and turn on the stove. I clean up the dishes left from breakfast and complain that the soup seems to be taking a long time (I have limited capacity for standing), so Thor takes over. Not wanting to go back to bed just yet, I sit on the couch and notice all the toys still left out from our granddaughter’s last visit. I try to tidy up, but the movement makes me dizzy, so I sit back down – it will have to wait for my next little burst of energy. Thor serves up the soup and we eat in silence. Not much to talk about on my part; he is no doubt thinking about work.
Soup finished, I snatch an apple out of the bowl and go back to bed.
[ Test #5: Living with restricted energy
Reality: Setting boundaries and valuing the little energy I have is a difficult life lesson: so much of what I do in a day is habitual or mindless. Choosing to use my energy for something useful like writing, or spending time with loved ones is a happy choice. Yet, I find it hard not to get lost in distractions, or worse, “shoulds” ( I should do some laundry, sweep the floor, tidy the table, and so on). I still have lots of work to do in this area. ]
12:27 pm. I listen to an audiobook: The Hare with the Amber Eyes. Some of it is hard to follow, but the narrator’s voice is low and soothing, so I keep pushing forward with the story.
1:00 pm. Esther calls on her lunch break and we discuss her weekend and their upcoming move. She sounds very upbeat, and I hang up feeling good about the conversation – I don’t have to worry about her today.
[Test #6: Worrying about others.
Reality: An excess amount of idle time equates to surplus opportunities to think about others, and as a mother, to feel guilt and concern where my children are concerned. Sometimes, my mind will dwell on past situations and I will spend days spinning over something I’m sure I’ve done wrong. This is one of the reasons I see a therapist. Unnecessary emotional spinning is a definite drain of energy.]
1:15 I play a few more turns of Scrabble.
1:26 Thor reminds me we have to leave soon. I put my cellphone in my purse and go one more time to the bathroom. We discuss whether or not to take my walker. I don’t need it to get into my appointment, but I will if we decide to stop on the way home. Take it, I say. It gives me options.
It’s a beautiful sunny day, and as we drive across town I note that most of the snow has gone from the streets and sidewalks, with only the last black-crusted bits remaining. I feel uplifted, hopeful. Maybe I can get out more, I tell Thor.
[Test #7: Keeping hope alive
Answer: This is another wonderful function of spirit: the ability to regenerate hope! Hope springs from a sunny day, a friendly exchange, a thoughtful gesture, and in my case, a restful nap.]
2:00 pm. The appointment today is my weekly acupuncture visit. Usually I sleep during this visit, but after this morning’s rest I lie instead and think of writing this column, and whether or not I need to continue coming every week, or if I could use my energy for something else.
3:30 pm. We decide to visit at a new Farm Boy on the way home. I want to find some ready made salads I can eat for lunches. The store is big and a bit overwhelming for someone who has been housebound for so long, so I choose a few aisles, adding some things to Thor’s basket. Walking is slow, and I have to sit while studying products. I feel my muscles straining, but push on, so excited to be out and about. I see a former student, and stop for a quick chat. When my my muscles start screaming, I ask for the car keys and head out to wait for Thor in the car, but the sun is so bright and warming that I perch on my walker and soak in the outdoor air. An elder gentleman stops to chat and tells me his wife is housebound and won’t come out. We swap stories and sympathies. When I can no longer sit up, I return to the car and put my seat back.
4:30 pm. Back in bed, pleased by my outing. Missed a call from Marie, but my voice is hoarse from the exertion of going to the store, a signal that means I need to rest, so I’ll text her instead. I put the heating pad under my back and notice I am suddenly cold, so pull up a couple of blankets. Low grade fevers seem to spark up with exertion too.
I work on the blog.
6:00 pm. Thor asks if I want dinner in bed or at the table. Bed is the answer – my muscles are strained from the earlier activities. I set my writing aside and prop up my pillows, anticipating dinner. It is superb! Almond crusted trout and waxed beans. I turn on the news, a habit I still haven’t shaken – but tire of it quickly. I have some prerecorded shows to watch and want to catch up on. Even though I am only supposed to watch one hour of television per day (it’s too stimulating) I decide to have a marathon and watch three shows.
9:30 pm Being able to fast forward through the commercials helps, but now I have a headache, and the images from the programs are locked in my brain – this is why watching too much is not a good idea – I cannot shake things easily. Also, I noticed that I am very emotional and cried easily over every little thing – another sign that I am off balance at the moment.
10:00 pm. Finish writing this blog, and text with my girls. Ready for bed but wired. Will check in on my Scrabble games and then maybe work on a jigsaw puzzle to quiet my mind.
[Test #8: Compliance
Reality: It will be days before I recover from the “extras” I indulged in today: my muscles will complain and stop working, sleep will become elusive, and I will not have the energy to get out of bed. I will become cranky, feel discouraged, and want to give up. Then it will pass, and I will try again, and when I feel good, I will want to do to it all – that’s my nature. (Not to mention that I am obviously a slow learner.)]
Life is constantly testing us – living with chronic disease only magnifies this universal truth. Some days I am more conscious of those lessons, and able to learn and grow; other days I prefer to just exist. Right now, I would say I’m passing with a C-: lots of room for improvement.
How about you. Are you acing life’s tests, or just getting by?