Virus Diaries: Six Month Slowdown

It’s hard to believe it’s been over six months since I got sick and my whole life changed, but here we are.

I haven’t posted any updates for some time, because there hasn’t been any update to give - COVID stopped all treatment in its tracks. I spent March, April and the beginning of May in utter solitude. No one came in my house, and I only ventured out for walks and fresh air in the evening when no one was around, like a vampire. I found I had no attention span to read books; I had to keep my hands busy at all times, so I listened to audiobooks while I made meals, did embroidery projects, and sewed.  Likewise, I couldn’t organize my thoughts coherently enough to write anything here, although I did keep a journal of each day that we lived in this new COVID era.

Slowly, the initial terror I had felt that I was doing to die in the pandemic (chances are huge that COVID would be fatal to someone with my decreased heart function) subsided, and I became more comfortable going outside in the daylight.  At the beginning of May I opened my bubble, to my dad, who came to visit and help me with some chores around the house.  He also accompanied me to St. Paul’s, my first trip out in months, to have an MRI to check up on the status of my heart.

The news was good:  I have no permanent damage or scarring on my heart.  My heart function has risen from 24% to 54%; an amazing increase in a relatively short time period, and the hope is that it will increase further – a normal person’s heart would be somewhere in the seventy percent range. My medications have now been increased to help facilitate that increase, because I’m finally able to venture out to get the regular bloodwork I need to make sure I am tolerating the new dosages, as long as I’m masked and gloved and come home and shower and wash my hair right away (doctor’s orders).   I’m still waiting to get into the heart rehab program that stalled when the pandemic hit; the latest I heard was that a virtual program was going to start and I’ve been referred to it, so I’m just waiting for the call to let me know I’m in.  Interestingly, doctors are studying one of the medications I am on, candesartan, as a possible treatment for COVID-19; patients taking the drug seem to be having better-than-expected outcomes, so the virus may not be the potential death sentence I thought it was when this all began.   So, the news is fairly positive around here.

My heart is still quite enlarged, however, and my doctors have told me this is an indication that if I was to go off the medication, the heart failure is likely to recur.  They’ve advised me I will be on the medications for the rest of my life.  There are a few minor and major consequences to this: no drinking, ever, no marijuana anything, ever, no grapefruit, ever.  The drugs I’m on are dangerous if taken while pregnant, to both mother and child, so any hopes I may have had of making hay while the sun shines and having a kid before it’s too late are probably foiled, at least by traditional means.  I do think these are all acceptable prices to pay, considering the alternative.  I still tire very easily and get chest pain if I overdo it with physical activity; I’ve been told that pericardial pain is something I may experience for several more months.  The drugs make my blood pressure extremely low so I’m often dizzy and have tingling hands and feet., and fall asleep at times when it’s really low.  Again, tolerable consequences given the alternative. 

So, I’m still home, still social distancing, trying to recondition my heart so that I can resume life as normal sometime in the next…year?  That’s what my doctors think.  I’m focusing on slowly and steadily losing some weight to make things easier on my heart.  I’ve redone my patio so that Currie and I have a nice outdoor space to spend our time.  We have two house swallows who have moved in as roommates, and hummingbirds visit us daily.  My attention span still hasn’t returned to the extent that I can sit and read for hours like I used to, but I spend a lot of time listening to the wind in the trees, watching the sky, or listening to the birds.  I’m often lonesome for company, often bored, but I connect with friends and family on Zoom and FaceTime when that happens, and I’m grateful for my cranky fuzzy grey familiar who is always by my side.

I remind myself that it’s important to remember what I had learned before COVID, that taking it one day at a time and not worrying or planning too far ahead is the key to remaining contented during this forced downtime.  But I’m plotting for the future like you wouldn’t believe.  Staring your mortality in the face does that to you.  Suddenly there are no more excuses, and a lot of fears and insecurities are released too, once you face the worst and survive.

Onward.

Virus Diaries: Anger.

I’ve been angry all day today. 

Of course, there’s lots for all of us to be angry about.  The suffering, the death, the fear, the economic uncertainty, the wave of pain and loss that feels poised to crest over all of us at any time.

But this anger – well, it’s personal.

The darkest, deepest inner part of me that feels unworthy of love and happiness and joy is screaming “OF COURSE!”  Of COURSE during this sacred, unprecedented time of rest and renewal, as I am slowly tottering towards a place of health, focused on healing who I am, letting myself just “be,” just experiencing happiness in the present, this kind of catastrophe has to descend to replace that peace and calm with fear and anxiety.  Of course the connection and care from my friends and family has to be brutally cut off, leaving me isolated and having to rely on myself.  OF. COURSE.

Really, I do know that Covid-19 is not some plot by the universe against my happiness. I’m self-centred but I’m not that self-centred. I know I have to change that inner narrative that thinks that fear and anxiety and uncertainty are all that I deserve, that they are the inevitable replacements for the peace and security I was still in wonder at feeling.  But frankly it’s difficult not to be resentful.  It’s hard not to feel exhausted at the continuous trials.  What is the lesson I am supposed to be learning from this new hardship, Universe?

And most of all, it’s hard not to feel impatient at being stuck waiting for this crisis to end in order to move forward.  My rehab program is cancelled indefinitely; progressing my drug therapy is on hold as I’m prohibited from visiting any lab to do the testing necessary to increase the doses, as I must do to heal the damage to my heart.  I’m stuck.  And it’s so, so difficult to wait this out.  If there’s anything that this year has taught me so far, it’s that no time is promised to us. I want to get on with the sweetness of life.  And I’m afraid I’ll lose my tenuous grip on that sweetness while I wait. 

Virus Diaries: Shutting the Door.

Recovering from myocarditis, I’ve basically been in self-isolation since January.  So you’d think the advice that our public health officials have given, that those of us with pre-existing conditions and the elderly, should now self-isolate for an unknown number of weeks in order to avoid contracting the coronavirus, COVID-19, would not cause a great change to my life.  

You could think this, but you’d be wrong. 

Somehow, the idea that it’s dangerous for me to leave my home, even to run errands, and that it is dangerous for friends and family to come visit me, feels terrifyingly lonely and scary.  I didn’t realize how important my small trips to pick up bread and milk meant to me, or how much this introvert needed the companionship of other people – the physical presence of another person, not just a smiling loved one on FaceTime.   While I’ve been regimented in my stay-at-home routine since January – getting up, getting dressed and putting on makeup, eating regular meals, keeping the house clean and keeping myself busy (sometime too busy) – over the past few days, that’s gone out the window.  I haven’t changed out of my pyjamas or brushed my hair or teeth, let alone put on makeup.  I’ve laid in bed until 4 in the morning scouring Twitter for the latest news and worrying myself sick for myself and my family.  Meals have been replaced by Mini Wheats (deliciously sodium free!) and milk.

 I’m not sure what’s brought on this sense of helplessness, when I’d made such miraculous peace with the uncertain future that myocarditis had presented me with.  Isn’t this just more of the same uncertainty?  Why can’t I face it with the same optimism?!

 I think partly it’s because that optimism has counted on the fact that the world would be waiting for my return when I recovered, and it seems that the world I am eventually able to return to may look very different.  It was easy enough to think positively for myself and at the same time to accept the uncertainty.  I could carry the weight of what happened if things didn’t turn out happily, because it was only my burden to carry.  Suddenly I’ve added concern for my diabetic father, my immunocompromised mother, my wee nephews, my schoolteacher brother, and my sister-in-law who has been chronically ill with strep throat and bronchitis for the better part of a year, to that load of worry, not to mention the fear over what this virus and its aftermath will do to the economy, our community, and my friends and family, and I’m buckling under the weight of it.   

 The threat of this virus, and of the wave of sickness that experts believe is about to crest, feels terribly ominous.  It feels like there is so little we can do to stop it.  Yes, I wash my hands, I don’t touch my face, I wear a mask when I go out, and I’ve been doing these things for weeks.  But somehow, this past Thursday afternoon, when I returned home from my last scheduled appointment for months, and shut the front door, I felt like I was sealing myself in, going into hiding indefinitely, and that feels stifling, terrifying and maddening, rather than feeling like shelter, or solace, or safety. 

 I speak almost every day to a group of friends from around the world.  My friend in Denmark told us yesterday that the borders were going to be sealed there, and she is busy helping people in need get groceries and medicine before the worst hits.  An Austrian friend who, along with her husband, teaches at a school in Bosnia and Herzegovina, is preparing to leave for Vienna with their young daughter while her husband stays behind to evacuate students.  They are both aware that when more borders eventually close, he may not be able to get to Vienna.  She is pregnant, which makes this even more stressful and sad.  A friend in Qatar told us that everything is slowly shutting down and called it a “surreal nightmare.”  We haven’t heard at all from our friend in South Africa.  Here at home, I have friends being tested for the virus, and friends in self-isolation because they’ve potentially been exposed.

 It’s hard to believe right now that everything is going to be OK. 

I would love to be able to help people during this time.  To offer to shop for neighbours, or vulnerable people in my community.  I think if I could think about someone other than myself, I might be able to function better.   Instead I am one of those vulnerable.  Instead I am focusing my time on cleaning my house as much as I am able (which is not a lot) because my cleaner can’t visit.  I’m attempting “big” tasks I normally can’t do without assistance, like changing the sheets on my bed and vacuuming, tasks which require me to sit down and rest, and sometimes nap, afterwards.  I’m trying to be self-sufficient when I’m really not.  I’m not at a place yet where I can start looking for ways to help others through this crisis, even ways that I can assist people online, but I’m hoping to be able to rest up enough to do this soon.

 So, I’m counting on those of you who can, to be that help to others that I can’t be right now.  Meals on Wheels needs drivers, because most of their current drivers are elderly folks themselves who are scared to go out.  Visit local businesses that desperately need our patronage in order to survive.  Knock on your neighbours’ doors and ask if there is anything they need.   Please help make this a moment where we come together rather than descending into chaotic selfishness.   Please give this lonely shut-in some good news to look at rather than the endless disasters being chronicled on Twitter.

When my mother was living with me and taking care of me in January, she wrote a list for me called my “morning routine.”  It read:

1.      Take medications.

2.     Start microwave for hot cereal.

3.     Get dressed.  Do makeup and hair.

4.     Eat cereal, toast and yogurt. 

 The final item read, “Go live, love…”

 Wishing that you all continue to live and love in the best of health, and that we can rise above this stronger and more united than ever.