Month: August 2020

5, 4, 3, 2, 1, lift off…..I was too tired to start at 10.

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The past week has been a struggle for me energy wise, even more so than most. It is never a surprise when I get a plummet. Like many who suffer with Sjogren’s or other connective tissue diseases, my energy can wax and wane somewhat from day to day. The fatigue overall is relentless.

Even within a day, I may start off strong only to wither away by lunch. Likewise, I could be in my housecoat until brunch barely moving; then pick up speed throughout the day, finishing strong at 10 p.m.

On the “good days” I tend to “over do”, resulting in subsequent days trying to restore and rejuvenate my aching body, my tired mind. Most of the time my life feels like the cliché: “one step forward, two steps backward”.

Learning where the fine line is between not enough and too much is a constant battle for me. I’m the Goldilocks of activity.

Today this quote came up on my Facebook page as a memory from nine years ago:

“You can’t get much done in life if you only work on the days you feel good.” ~ Jerry West.

Well, that explains a few things.

I never feel good, I just feel less bad. I cannot even remember the last time I woke up in the morning, and popped out of bed thinking I was James Brown “I feel good. I knew that I would!”

In general, humans believe the people who are successful are so because they motivate themselves and give life their best regardless of how they feel. To be successful, people must persevere. I do not dispute that whatsoever.

It is also common belief if someone isn’t working hard, or “up to their potential”, they must certainly be “lazy”, or the more polite term “unmotivated”.

If there is one thing having the several autoimmune diseases I’ve been diagnosed with has taught me, it is not to judge other people. If someone isn’t able to take care of business, getting stuff done, I am more than willing to give them the benefit of the doubt. There must be a good reason for their ineffectiveness, or lower productivity. However, I have immense difficulty not judging myself.

Acceptance of my finite amount of energy is difficult for me. I’ve always been a planner, a dreamer, and a doer. When you have high expectations of yourself, it makes sense your lack of ability to follow through would leave you feeling less than adequate.

So, what does keep me slogging along, getting as much done as possible despite my exhaustion?

The answer came today. Not as a revelation, but a reminder.

I saw an email ad for a seminar with life coach Mary Morrissey, in it she said even for a fully fueled rocket to be launched into space, it requires a booster rocket. She believes people are like that too. Even though we may be ready to launch, we still require a booster rocket too.

Thank you to my booster rockets – the people who don’t blow sunshine up my butt saying I can do anything, but who encourage me to do the best I can with what I have on any given day. Who knows? Someday I might really take off.

#writeforyourlife

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While presenting a workshop I attended this week via Pandemic University, Michael Lista suggested people know they want to write, or what they want to write, long before they know the why.
Being a naturally introspective sort, I have been contemplating my “why?” ever since.

Then today I came across a fellow Sjogren’s friend’s post online saying she is going to be returning to writing her blog this weekend. Her comment to friends and family was “It’s scary”. This was my response to her:

“Being scared means you are vulnerable, being vulnerable means you are authentic, being authentic means you got real with your words, and that is what people relate to the very most. It’s all good.”

Today as I thought about why I write, I drilled down to be more specific, thinking about why I write about personal health issues. The personal health topic brings me the most fear when writing, but probably not for the reasons you might guess. What scares me the most is that people might think I am doing it for attention or sympathy. I fear people thinking I am being dramatic regarding events that happened. Trust me, truth IS stranger than fiction; I do not need to embellish a word.

So what do I want?

Why write health stories to post publicly?

One is a selfish reason, the other altruistic.

First, the selfish reason. I have zero desire for sympathy. However, I do crave understanding for my particular situation. I want people to understand my strange constellation of autoimmune connective tissue illnesses, the myriad of symptoms that combine to make every day a new adventure.

The second reason is to educate others, in the hope of preventing them, or someone they love, from suffering needlessly as they wade through the murky bog that diagnosis, treatment, and living with a chronic health issue of any type can be. I want to spare people needless anxiety, especially if they are in the middle of a health misdiagnosis fiasco.

So that is the why of writing about my medical issues. But what about my other writing – the word balm poems, the “bite-size” childhood memoir, the Mr. Wanton stories, the fiction and other memoir not yet published on my blog or elsewhere, but still buried in notebooks between other journal writing?

When I was a young girl, I remember playing games like tag, or Blind Man’s Bluff, running to breathlessness, being chased, kids hollering “run for your life!” I ran to be “safe”.

Now, “I write for my life”.

That said, Michael Lista also told the class this week: “Never trust a writer who thinks they’ve figured it out.”

 

Links that may be of interest:

Friend, fellow Sjogren’s patient, writer Christine Molloy’s blog “Thoughts and Ramblings on Life, Love and Health”. http://www.christinemolloy.com

Writer Michael Lista’s webpage. http://www.michaellista.com

Pandemic University, a totally fake university with excellent 90 minute live and archived writing sessions presented by experts in the field. http://www.pandemicuniversity.com

Mr. Wanton’s new nickname for me!

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Having ordered my groceries on-line, I was waiting for the call to go pick them up curbside. No pre-set pick up times out here in the boonies; you go get the groceries immediately when they call.

While I was waiting at home for Sobey’s to call, my three year old grandson called to FaceTime with me. Sometimes he calls, talks for 30 seconds and is done, but this time he was chatty. After a couple of minutes, the landline phone starting ringing. Call display was showing it was the grocery store, so I picked up while still on FaceTime on my cell phone with Charles.

As I was confirming my credit card number with the Sobey’s clerk, I had a sudden urge to use the washroom. ARGH! Why does everything happen at once? Quickly, I finished my Sobey’s business, then told Charles I must end my FaceTime call, so I could go to the bathroom. Charles protested,”No, Baba I want to talk to you.”

“Talk to you later! Love you!” I hung up, feeling like the worst grandma ever!

I had on my “dog pants”; the pants I usually wear at home so when our Labrador Retriever slobbers on me it won’t matter. I grabbed clean yoga capris, pulling them on quickly, as I dashed out to my vehicle.

Mission accomplished, I returned home to spend the next four hours washing everything from the store, putting it away, then making our supper, and finally doing dishes. After supper, Mr. Wanton and I were relaxing, watching TV. I looked down at my legs elevated in the recliner.

“OH MY GOD, my pants are inside-out!”

With no emotion, Mr, Wanton replied, “So? It’s just us here in the house, who cares? It doesn’t matter.”

I jumped out of the recliner like it was an ejection seat.

“I wore these pants uptown!” I shouted.

I spun my body around so my backside was towards Mr. Wanton.

“Can you see the tag? Is there a tag hanging on my butt crack?”

“I can’t see your butt at all; your shirt is so long.”

I tugged my shirt up.

“What about now?”

“Oh yah, I can see the imprint of the brand and size, but the pants have no tag.”

Now, I was laughing, realizing unless someone was close to me they would not see the seams of my pants on the side of my legs. Whew.

I actually had inside-out pants on for the last six hours and didn’t even notice. I asked Mr. Wanton if he thought me going to town in inside-out pants was a sign of being too relaxed, or too stressed? He diplomatically “pleaded the fifth”.

A few days later, it was my birthday. For the first time ever in his life, Mr. Wanton baked a cake.

My parents, my son, and his girlfriend came for an outdoor visit. Mr. Wanton was in and out of the house as he checked on his cake project. My Mom asked him what kind of cake he was making.

“Square“, he said with a smart-ass grin.

“No, it isn’t, it’s a rectangle. Two sides are long. ” I laughed.

“Square, rectangle, same thing.”

I said, “If that cake is a square, then I am hourglass shape!”

“What shape do you think you are?” he asked.

“Rectangle! Just like the cake! A vertical rectangle, with arms and legs, and a head sticking out.”

“Like SpongeBob SquarePants?” he asked.

“Exactly! Except I have a head on top!”

The cake and the birthday visit were both a success.

That night as I collapsed into bed, a voice came out of the dark.

“Goodnight Sponge Baba Inside-out Pants!”

Mr. Wanton’s Wild Ride

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Mr. Wanton’s transplant medications make him prone to skin cancer, so for Father’s Day I bought him a SPF 50+ hat. I ordered it from Coolibar.* The package from the USA took over a month to arrive. Yesterday, he wore his hat for the first time.

Headed out to mow the grass, Mr. Wanton had on long pants, a sun protective hoodie, and his new hat. He also had on his “PPE” – a facemask and goggles – not because of any danger but because he has seasonal allergies. He is allergic to every type of vegetation in our rural yard, except spruce. Finally geared up, off he went.

While he was mowing, I was inside vacuuming. I noticed the ride-on lawnmower parked in the shade outside the living room and he was kneeling down doing something beside it. I was unconcerned as he occasionally tunes up the mower mid-job.

About 20 minutes later, he stepped into the house holding up a long, dirty, ripped, and torn rag. I was confused. Why was he showing me the rag he was using while repairing the mower?

“I ran over my hat.”

“THAT’S your hat? Your brand new hat?” I knew the answer but asked anyway, not wanting to believe it.

I started to laugh uncontrollably. I could barely breathe. I managed to gasp, “How?”

“My goggles fogged up because of the heat (31C). I couldn’t see where I was going. I got too close to the edge of the yard. I thought I was going over the 150 foot bank, so I quickly put the mower in reverse. Then I backed into some branches, my hat came off, I ran over it, getting it tangled in the blade. Apparently you can be wearing too much PPE, and be unsafe.”

He smiled; sort of.

Then I remembered how much I paid for the hat. Seventy dollars $US. I picked out that hat specifically because it had the widest brim as well as a cord you could cinch up. If Mr. Wanton was in the boat zipping around the lake and his hat flew off, it would not get blown away. Even though I was still laughing, my eyes welled up with tears at the thought of how much I had spent.

“Don’t order me another hat.”

“Don’t worry, I definitely won’t. You will be getting a $5.00 sombrero from the bargain store instead!”

Mr. Wanton located his old hat in the closet; slapped it on his head. He went out to finish the yard. I finally got control of my convulsive laughter, but one glance at the de-constructed hat on the floor and I started all over again.

Coolibar has lifetime fabric warranty. It might be worth sending the hat back, just to imagine the face of the customer service representative pulling it out of the package…and to anticipate the reply we might receive in return.

*Note: I have no financial interest in the Coolibar sun protection clothing company. I have purchased numerous cotton/bamboo jackets from them over the last decade.  I love my Coolibar hoodies.