Recalibrating Good

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“Have a good day!” “How was your day?” “Hi, how are you doing?” “Did you have a good day?”

What is good? What’s going on in your life when you’re pretty sure it will be a good day? How might a day unfold that results in you considering it a good day?

For me, personally, a “good” day used to be one where I had a positive experience with a customer, no big problems at home or work, and actually had a dinner plan with all necessary ingredients.

Currently, I’m home alone most of the time and, many days, fibromyalgia leaves me pretty much debilitated by pain, vertigo, fatigue, brain fog, and/or terrible headaches along with depression and anxiety.

How do I have a good day? What makes up a good day now?

I need a different meaning of ‘good’ for me. For a while, how my day went depended on how bad symptoms were. I don’t want that to be the focus. It definitely can’t be based on where I went, what I did, or with whom I’ve interacted. It’s hard enough to accept the physical toll required just for life’s regular bumps and bruises, slips and trips, without having to come to terms with chronic illness and pain. That is the task at hand for me, accept my circumstances and see things with a new perspective. I’ll be recalibrating what a ‘good day’ is for me. My purpose hasn’t changed; I will continue to weave love and compassion into the fabric of life. Just need to figure out how to do that from here.

Accept This

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You know, the part of the Serenity Prayer about “grant me the serenity to accept the things I cannot change”? Many current circumstances provide opportunities to practice. I am endeavoring to accept these situations as they are:

  • Pandemic
  • Isolation
  • Distance holidays
  • Presidential transition
  • Changes in plans as virus goes viral
  • Fibromyalgia
  • Chronic pain

There are a few things I accept but continue efforts to handle, minimize, or otherwise improve include frequency and intensity of pain as well as the need for regular stretching,

It’s hard enough to accept the physical toll required just for life’s regular bumps and bruises, slips and trips, without having to come to terms with chronic illness and pain. This is where I find myself, at the start of a new chapter. Current focus is seeing myself as myself with some extra consideration needed for activities and plans rather than my recent view of myself as a patient, defined by illness, injury, and pain.

The Last to Know

(Revised 2:30 p.m. PST)

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Turns out ostriches don’t actually bury their heads as some kind of response to an unknown threat. Females dig holes for eggs. Mothers put their heads in the holes regularly to rotate them. This is the image that led to the reference of burying one’s head in the sand.

Like an ostrich mama, I thought I was preparing a treasure for the future. I’ve dreamt of having my own pre-k class in my family room. I hoped to enroll students for Fall of 2020. The variety of centers, set up of the classroom, and curriculum rotated through my mind.

Then, an unfortunate series of events delayed the fruition of my dream: suicidal depression, extreme aggravation of fibromyalgia, and COVID. As my world changed drastically, I continued to mull over starting my pre-k class in a much smaller way in Fall of 2021.

A few days ago, my husband asked if I wanted to donate toys and center supplies I’ve purchased for my classroom to a charity providing Christmas gifts to families during this terrible time. Tears sprang to my eyes. We talked. I’m lucky if I get a couple good hours and odds aren’t great they’ll arrive on schedule.

I texted family and a few friends to let them know I was letting go of that dream. Responses included, “I didn’t know you were still thinking about that,” “I’m sorry you’re feeling sad about this,” and “hard time to start a new business.” I hadn’t buried my head in the sand, but I had continued to mull the plan over in my mind, visualizing, even while acknowledging at other times that there’s no way I’m physically capable.

The truth is the pre-k class will not work, and it’s time to find a new dream. Turns out, I was the last to know.

One Year Later – Hope

I just passed the one year mark of the day I wrote a suicide note and purchased the supplies necessary to carry out my plan the next day, the Monday before Thanksgiving. I thought about it briefly, seated at our holiday table a few days ago, with my husband and two grown sons, but made no mention. I did share aloud how thankful I am for our family.

In 25 years of dealing with major depression, this was by far the deepest and darkest. It has significantly worsened my fibromyalgia. I tried to go back to work after one month leave, but I was in so much pain, both emotionally and physically, I just held on by my fingernails. This also resulted in an almost comical dulling of brain function, not so funny after a while, though. I started this blog to get in writing the struggle I knew was ahead, based on past experience. I’ve been home since mid April, trying not to get COVID because I have a history of lung scarring and damage from a whole different story.

One year later, my depression has improved, some days better than others. I still cry easily but I always have; it’s more frequent than I’d like. Anxiety rears its head occasionally but not 24/7 relentlessly. I have to remind myself that the last two major episodes I’ve been through in 2003 and 2009, the depression wasn’t as bad and it still took about a year for me to get to a healthy baseline. This time we’re in the midst of political and public health upheavals. The fibromyalgia now factors in more seriously than it ever has previously. Patience, patience, patience I whisper to myself.

I am happy to report there is color in my world again, where once it was all black and white.

Thankful Tonight

There were empty seats at the table across America today, for a variety of reasons. Unfortunately, there will be a lot more people missing Christmas and New Year’s in the next couple of months. This is a certainty. Images of people filling airline lobbies and check-in lines, cars snaking through the freeways. Our frontline medical people are already exhausted and traumatized by what they’ve been handling for many months now. They see those images of travelers, too. Many put desperate pleas on social media, begging us to stay home for the holidays this year so we can all be together next. They see the wave coming, but they can’t rest and prepare. How must it feel to be pouring out more than you have to give, day after day, and then see future patients move the virus all around the country. I am so thankful to all the staff at all the hospitals, dealing with the sickest of the sick. I’m also thankful my extended family stayed home and will for Christmas, too. Happy Thanksgiving to everyone!

9/11 on Repeat

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For those too young to remember, this is what the Twin Towers looked like before we knew we were under attack by 19 radical extremist Islamists at the behest of Osama bin Laden, a name most of us had never heard. The world was transfixed as the towers collapsed, causing a cloud of debris which rained down on emergency personnel for days. Metal wreckage, chunks of building and scarred land in NYC, Pennsylvania, and the Pentagon were eventually cleared to reveal we’d lost 2,977 souls. For days, I watched and listened to the stories of relatives of those still missing or dead, as well as the harrowing recounts of survivors.; I felt that sharing their burden of pain was the least I could do from 3,000 miles away.

We owe today’s survivors and relatives of those lost to COVID the same respect. We are losing nearly 2,000 people every day. It could reach 3,000. Every year on 9/11, all the names of those who perished are read aloud. Can you imagine if we did the same for current casualties, how long that would take? Again, emergency personnel are risking their lives and becoming overwhelmed. When the opportunity arises, whether through news or social media, I pause, give my attention, and think of the impacts on so many lives. I’ve shed countless tears alongside those suffering, because it’s the least I can do while isolating myself from the new enemy in this devastating war. We cannot dismiss the wave of pain that accompanies the spike in cases, hospitalizations, and deaths.

My heart goes out to everyone affected by this pandemic.

Disconnected???

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  • Awakened to NO internet connection.
  • Immediate response: It’ll probably come back in a bit. No big deal.
  • 10 minutes in: You know, this is nice. It’ll be good to have a quiet day.
  • 20 minutes in: Checking frequently doesn’t seem to help.
  • 25 minutes in: Message my neighborhood group asking if anyone else was having trouble. Realize messaging won’t work.
  • 30 minutes in: Back to talking myself about the positives of a disconnected day.
  • 35 minutes in: I stay home alone most of the day. Online connection is my main connection!
  • 40 minutes in: I resolve to approach our latest modem, new to me. I unplugged one connector, waited, no luck. Tried disconnecting the actual cable connector, waited.
  • 45 minutes in: Success! I single-handedly restored the internet! Suddenly, my neighbors’ messages come in that they’re not having internet issues.
  • Afterwards: Listened to news on my phone, checked out a couple sites, and played a game. News is depressing, so it’s off. Can’t wear glasses to read because of migraine, so not comfortable to be on tablet. Guess I’ll sit in the hot tub for a bit – disconnected!

What Is My Thing?

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You know how after a tragedy, people say no one knows what they’d do unless they were there. Well, here we are, nine months into a pandemic with millions getting ill and dying around the world. With the worst up ahead, we are in that moment. So, I started thinking about how I’m handling this and what I bring to my little family group. Words. I bring lots of words. I tell my husband what can happen to you if you get it, keeping him updated as we learn more. I also contribute weekly updates on where the virus is hot and what’s happening locally. He doesn’t ask for or really even desire to spend much time on the topic, because it’s pretty depressing news, always. But that’s my thing. I got words. Stay safe.

So Damned Tired

Fibromyalgia 101

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Recently, one of my doctors remarked that, because I have an autoimmune disorder, I’ll need to really look into the COVID vaccine before I get it. My response? “So, you do consider fibromyalgia an autoimmune disorder?” She said, “Yes, it’s an autoimmune disorder.”

Over the years, I’ve heard no one knows what causes it and, later, that it’s a nervous system problem. The last couple years, there seems to be a debate about whether the condition is neurologic or autoimmune in nature. There is a general consensus that fibromyalgia looks and acts like an autoimmune disease. My doctor’s certainty kind of surprised me.

She explained that there are different types of fibers in our muscles. With fibromyalgia, the immune system attacks one kind. These fibers are also in ligaments, tendons, and other connective tissues. When this fiber is attacked, it loses elasticity and becomes tight. When a person with fibromyalgia moves their muscles, those stiffened fibers have tiny breaks occur. These injuries can only be seen with an electron microscope. Prior to seeing these microscopic injuries, no damage had been documented, which is a qualifier for being classified as an autoimmune disorder.

Fibromyalgia effects on the body are widespread because the fiber involved is found throughout. The pain that’s dull and aching occurs due to the damage. Sharp, sudden, intense muscle spasms happen regularly with no discernible “cause.” Because the immune system is working all the time and the person is experiencing pain consistently, the brain and body are fatigued.

I can trace symptoms of fibromyalgia all the way back to high school and college. Three general doctors and a rheumatologist have confirmed the diagnosis since it kicked into high gear following major medical trauma. Just because the doctors have identified the disorder, they don’t give much in the way of an explanation. This is the first time I’ve received information that seems to make sense of the cause and the long list of symptoms. Scientists are learning more all the time, so we could eventually have a more complete picture. For now, the disorder has been demystified for me, researchers have seen physical confirmation, and, for whatever reason, these give me more peace of mind.

Rx Drug Soup

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A year ago this month, I fell down a scary hole, darker and deeper than I’ve previously experienced over 25 years of hiding or running from depression. I became suicidal, writing my goodbye letter and shopping for the necessary supplies. The antidepressant I took was obviously no longer effective.

The psychiatric ARNP whose been helpful in the past got me in right away, and we began the long, difficult process of weaning off current antidepressant and gradually getting the new one on board. This. This is what I dread the most about dealing with depression. It takes f o r e v e r. For a while, I end up in limbo, not taking enough of either drug to affect the darkness.

Treatment continued but I wasn’t responding well. We added another antidepressant to the recipe, now two antidepressants and one anti-anxiety prescription. Additionally, my weekly pill organizer includes blood pressure and reflux meds, muscle relaxers as well as various vitamins and herbal supplements. I find setting up the weekly regimen depressing in itself.

I’m certainly doing better than I was a year ago, even in a pandemic. Fibromyalgia has been very difficult. At my appointment this week, I explained that I am finally, just in the last few days, beginning to see light at the end of the tunnel. Unfortunately, as I spoke about getting well, I began crying. Sheesh.

We spoke about fibromyalgia and my need to accept that I have an autoimmune disorder. She gave me the best explanation of fibromyalgia I’ve received in 11 years. I’ll write that up separately in next post. We narrowed my issues that could be specifically addressed to energy level and brain fog.

The solution she suggested was a stimulant. Ugh. The dose would be half the lowest dose typically prescribed to start. It is instant release, so I could expect my mind to clear and energy to increase after just a couple days. As a result, it would lift the depression. I left with prescription in hand but an uneasy feeling.

The prescription drugs i take are certainly more numerous than I’d like, but they address particular issues that really need attention. Mulling over my desire for more energy and clarity of mind, all the pills I’m taking were swirling around in my head. I’m pondering taking a stimulant to be up for the day, then something else to help me be calm, and another for sleep.

A reluctant user, I nonetheless followed doctor’s orders and took half of the low dose. I didn’t notice any perceptible difference from that one bit but I continued to be anxious about adding an addictive drug. As a result, I’ve decided not to take it, but it’s helping anyway. Going through the process of evaluating my situation and making my own choice has been empowering. I’m not going to treat depression and brain fog with a stimulant, and knowing I have the option to increase energy should I need it, grants me some peace of mind.

p.s. Yesterday, proving to myself I don’t need a stimulant by doing a couple projects I’ve been eyeing, really wiped me out! Overdoing is my m.o. Okay, going to increase activity gradually. 😏

Happy Birthday!

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Halloween is the anniversary of my first born’s birth. He arrived two weeks earlier than predicted, but he had been trying to get moving for months. We got through bedrest at beginning and end, insulin dependent gestational diabetes, and he was breech. All these hiccups, and I said to my husband, “The only thing that could go wrong now is to end up with a Halloween baby! I didn’t think a little kid would want to share their birthday with Halloween.

He loves it! Always has. There have been a couple birthdays that ended in a puddle of sugary tears, but we figured it out. Today, my Halloween baby is celebrating his 23rd on a Saturday night with a blue moon. That’s all I know.

Happy Halloween!

Where is this?

Here I am in a new place. The travel itinerary for the last year, 12 months – not calendar, has been one of exploring roadside attractions I had visited previously or those in which I certainly had no interest.

Severe, suicidal depression was the first stop. I am so familiar with depression, I was sure it would be a short walk through. Instead, I went deep into the caves, experiencing things I’d not seen previously.

About the time I noticed the spelunking had really increased my chronic illness, fibromyalgia, we all got on the coronavirus ride. Then outrage exploded when another BLACK MAN WAS KILLED by Chauvin’ knee on GEORGE FLOYD’S neck for minutes, as Mr. Floyd and onlookersbegged for his life, pleading with Chauvin to let George breathe.

Well, we’re still on the COVID ride, still no meaningful reckoning with the racial injustices suffered by our fellow Americans, met instead with chemical spray and a president’s plan to dominate protestors. We have no idea when this wicked rollercoaster will slow, much less stop.

Now, as the end of this election approaches, just one week from tomorrow, the rollercoaster cars are trudging slowly to the peak of tension and anticipation. It feels as though time is suspended and we’ve caught air…… I’m afraid of what happens when we land.

Hope This Finds You Well

In recent weeks, both of my young adult sons have, separately, encouraged me to begin walking regularly, sure that’s all I need to feel better. I agree with them that walking routinely would be helpful and it is a goal, but it’s not the cure. If I’m having a good day, I can handle stairs occasionally throughout the day, all the way into the evening. A couple of 15-20 minute chore sessions are tolerable. If I’m feeling so-so, two or three trips on stairs is all I’ve got and housework is hit or miss. Unfortunately, I’m frequently unable to ascend or descend even once. On such a day, I look around at all the chores need to be done and hope I can get to them tomorrow.

I know my sons are encouraging me out of love. I also realize they’re just now really tuning into the chronicity of my pain and other fibromyalgia symptoms. Based on my personal experience, I’ll continue with my stretching exercises, getting outside in our yard most days, and completing chores as able. If I took off on a walk by myself, I’m afraid I might not make it home!

Life

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Life in the Days of COVID

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The beautiful colors of autumn are beginning to show themselves, oblivious to the pathogen affecting everyone on the planet, whether the inhabitants accept or ignore reality. The confluence of a deadly pandemic, ineffective handling of said contagion, and the state of social unrest here in the USA has resulted in a season of uncertainty and distress unlike any we’ve endured in my lifetime. I am making a point of appreciating those bright oranges, yellows, and reds that confirm the continued rhythms of life, reminding me the earth will continue to rotate on its axis as it orbits the sun.

Human-sized Web

I was trying to think of a witty bon mot for the title, but I couldn’t think of one; so, instead, I used ‘bon mot’ in the first sentence.

Feeling like we are all, nationally and locally, caught in a web. It began last winter and has slowly wrapped around us. The first, barely visible to us, was silk made of coronavirus. We could feel the thicker lines in the spring when most of us stayed home. We marched and cried out, in spite of the early obstacles, to say Black Lives Matter, but as the summer set in we turned here and there, not united, tangling ourselves in the sustained uncertainty. We split. Everything became political, and the web stretched.

“Will you walk into my parlour?” said the spider to the fly.

Who is the spider and who is the fly? How do we get out of this?

March On

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We take to the streets
Showing up shutting down 
We cry JUSTICE EQUALITY 
For EVERYONE now

March on in the Bronx,
Cleveland, Orlando
Kenosha, Louisville
Staten Island, Georgia, LA

March on to call out racism 
March on to say ENOUGH
March on to say Black Lives Matter 
Peaceful, loud, pissed off, undone

All the noise keeps us from thinking
Social media keeps us stirred up
Fires, COVID and a political season
Keep hope, keep love, and try, try, try
To keep your wellness and reason
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The Fall of 2020

The new decade beginning gave me hope. Mostly what I longed for was an uneventful year. Over the past few years, my husband’s sister passed from ALS at age 50, and my dad went in for outpatient surgery but didn’t make it out of the ICU. In 2019, specifically, someone very close to me suffered a mental health crisis. On the heels of that situation, I had my worst dive into depression ever, resulting in coming very close to suicide. (I’ve written about this in “My History with Depression” and my earliest posts.) You can see why beginning a new year, a new decade, felt like an opportunity to breathe.

2020 started calmly enough. I was focused on trying to get through work days and recovering on days off. Not sure when I first heard about the coronavirus, but at the end of February my husband and I celebrated our anniversary on a little out of town weekend and nothing had yet been changed due to the virus.

As we waded into 2020, Australia was burning (again) and there was a flurry of gossip and shock (shock!) when we learned Prince Harry and Meghan Markle were going rogue. The impeachment of Trump took up much of the domestic newsfeed, and the death of Kobe Bryant and his daughter made headlines. We heard inconsistent messages about coronavirus and COVID throughout February.

It all became very clear in March. The NBA and the NHL suspended their schedules. The stock market reacted badly to the realities beginning to sink in for us all. People were getting nervous.

Personally, the beach vacation planned around my niece’s wedding in May was canceled. I’d so looked forward to seeing my niece get married, and then we were staying in a beachfront room for a week. The last time my husband and I had a week-long vacation with time at the beach, we were accompanied by our sons, a two-year-old and a six-month-old. They are now 21 and 22.

So, for a few months, things were unsettled. The future was unknown and the information changed daily. In the midst of this, we all watched George Floyd murdered by a cop casually, hand in pocket, his knee on George Floyd’s neck for seven minutes and 46 seconds. (Originally the length of time given was eight minutes and 46 seconds, but in June authorities revised it, saying they had been mistaken.) The tinderbox of uncertainty was lit by the rage of good people after watching ANOTHER Black person killed by police.

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Millions of people around the world took to the streets in protest of racial injustice. France, Australia, South Africa, Ireland, Senegal, and more. Marches took place in over 2,000 cities and towns. People of all sorts joined together, mostly masked and mostly peaceful.

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At the same time, the virus spread from asymptomatic people to vulnerable populations and through family get-togethers. Young folks got sicker than we thought they would. The death toll rose. And Trump politicized everything.

Communities around the nation grappled with when and how to reopen. The federal government put out clear, appropriate guidelines to follow in order to open safely. It seemed no sooner had the coronavirus taskforce published a step by step reopening plan than Trump started tweeting for people to “liberate” their states.

Here we are. It’s officially fall. Our nation is a patchwork of regions, some with increases in cases and some decreasing. Some governors rushed opening to curry favor with Trump. We’ve seen case counts and deaths soar in those states as a result. It is clear and undeniable – Republicans are putting party and power over people’s lives, literally.

If anyone had any shred of hope left that Trump would ever try to get his arms around the issues we face, it was itself shredded in late September. His taxes, which he has hidden like a rat with a NY slice, showed the world what most had known for years; the emperor has no clothes, not even in his closet. The curtain rose, revealing his yearslong masquerade as a successful businessman. Days later, a presidential debate laid bare the historic choice we have this fall of 2020.

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Trump chaos or Biden calm.

Do you want four more years of lies, insults, mismanagement, egotism, and chaos? Trump was once asked, “Doesn’t this wear you out, all the chaos, the storm all around you?” Trump answered, “I am the storm.”

I choose to vote for a professional, experienced team that acknowledges the demand from the majority of Americans to tear up systemic racism by the roots and can also provide a broad, structured, sensible approach to the pandemic still raging. I am so excited to vote for Joe Biden and Kamala Harris.

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