Catastrophizing, Anticipatory Anxiety, or just a Worry Wart?

I've been a worrier my whole life.  My grandma was a worrier too, so I'm sure that's where I got it.  (Yes, I mean WORRIER, not warrior).  I'd see her worry, so then I'd also worry.  I say a prayer every time we pull onto the highway.  I say a prayer when I know one of my kids, my husband, or another loved one is on the road, heading somewhere, because I'm so scared of them having an accident.  I feel anxious, stressed, and have this feeling of impending doom every time one of my loved ones leaves the house to go any further than across town to get groceries or some other local task.  

According to the American Psychological Association (APA) Dictionary of Psychology, Anticipatory Anxiety is worry or apprehension about an upcoming event or situation because of the possibility of a negative outcome, such as danger, misfortune, or adverse judgment by others. The worry or apprehension is often accompanied by somatic symptoms of tension. The APA describes people who always think that the worst possible outcome will occur from a particular action or in a particular situation as catastrophizing.  Dictionary.com defines worry warts as people who tend to worry habitually and often needlessly.  

I feel like I fit all of these definitions if I am being honest.  Every scenario in my life consists of me imagining the absolute worst thing that could happen.  I think it's because my luck always seems to be bad luck.  If something is going to happen, it's going to happen to us.  We are going to choose the box that is missing parts, get the random defective car battery, the box of nuggets with one nugget missing. No risk factors for an ectopic pregnancy, yet I had one.  No obvious signs of any type of infection, yet I went into septic shock.  So, when we began to plan our first "across-the-country vacation" nine months in advance, of course, I'm going to be concerned that things are going to go wrong.  

Every time we leave the house, I worry something is going to happen to cause it not to happen.  And of course, it's always horrible, gruesome thoughts that I'm imagining; never just a minor inconvenience.  By the time it's ever time for our vacation to actually happen, I might be too stressed and anxious to even enjoy it!  Because then of course, I'm going to worry about the freak things that could happen to us on our way there or while at our destination.

Will one of us get attacked by a shark, stung by a jellyfish, or die from the poison of some freakishly-shaped sea urchin disguised as a piece of seaweed?  Will I somehow fall to my death off our 20th-story balcony, or will a car from our sky wheel ride fall into the ocean?  And that's only if the pier the restaurant we are eating at sits on doesn't collapse into the sea first!  And all of that is if we even MAKE IT to our destination in one piece.  And before we can leave for our destination, we have to have survived ALL NINE of the months leading up to it.  

Maybe it's hard for me to accept that good things are going to happen because they seem too good to be true.  I hear about other people doing all these exciting things, but it doesn't seem real that we could be doing them too.  Checking things off my bucket list has never felt attainable to me; I always thought of a bucket list as a list of the things you wish you could do, but never actually will get to do in your lifetime.  I think now, if I really do make it TO, THROUGH, AND HOME FROM this first bucket list trip, maybe I will see it differently.  Maybe I will actually look at life differently.  Maybe things I never thought were possible really can come true. 

Speaking of Bucket Lists, I'd love to read some of yours!  Please feel free to comment below, and don't forget your name so I know whose bucket lists I'm reading!  Here are the top five things on mine!

 

The Day I Almost Died

Three weeks ago I almost died.  Not figuratively.  Not metaphorically.  Literally.  I LITERALLY almost died 3 weeks ago...and I am still trying to figure out what to do with the emotions I've been experiencing ever since it happened...

Wow...where to even begin...I've been trying to write this blog for almost 3 weeks, but something very strange and unfamiliar has been happening to me each time I sit down and work on it...I'm at a loss for words.  This is not an experience that is even slightly familiar to me because I am NEVER at a loss for words.  Never. Ever.  

Most of us, unfortunately, know what it feels like to see someone we love become ill or pass away.  But, rarely does anyone ever have the experience of feeling their own impending death.  It's an experience I wish I hadn't had.  And I'm discovering that it has rocked me to my core.  I'm not really sure what to do with the feelings, emotions, fears, and thoughts I've had over these past 3 weeks...A lot of my memories of that night are blurry.  Parts are missing, I have lapses in time, and I've also discovered that many of my memories of that night are mirrored.  I have asked my family about the details of that night, and am learning of more and more things I thought were reality, but in fact, are not exactly as I recall them...

I woke up on Thursday, February 29th, and I felt a little blah, had a bit of a headache, but nothing horrible.  I thought it was just the post-exertional malaise (PEM) from a really fun, but busy previous week and weekend.  This is not something out of the ordinary for someone with Long Covid so I didn't think much of it.  However, I woke up at 5:40 A.M. Friday morning absolutely freezing.  I covered up with an extra blanket and burrowed under the covers.  When my husband woke up at 6:30, he took my temperature and it was high, 103.4. I had planned to go out of town with him for an appointment, but stayed home to try to sleep off my headache and fever instead.  

I finally drug myself out of bed around 12:30, took some ibuprofen, and settled into the recliner for the rest of the afternoon.  My headache and fever were both gone by 2:00, and I felt decent other than some body aches.  I was sure I must be coming down with the flu.  I took it easy the rest of the day, and even had a couple of hours where I felt relatively "fine".  Then, around midnight, when I was about to head to bed, I got a bit chilled.  I covered up with a blanket, asked my husband for another blanket and some ibuprofen, and decided to just wait it out before going to bed.  That's when things got ugly.

My husband went to hang up some laundry and my daughter headed off to bed.  I stayed in the living room, in my recliner, alone.  That's when I began shaking uncontrollably.  My teeth were clanging together, I was unable to sit still in my chair, and the shivering grew more and more intense.  I know now that what I was experiencing was rigors, which was an indication of worse things to come.  

My husband came out to see if I was ready for bed and found me in that state.    My breathing was becoming more difficult, and I was becoming more and more light-headed.

I began repeating, "Help me!" over and over as the rigors became more intense, but my husband couldn't hear and/or understand me.  My daughter came out of her room and asked if I was having a seizure.  She is the one who noticed the backs of my arms were blue.  My husband then saw this and noticed my face, especially around my nose and mouth also becoming a purplish gray.  They both told me I needed to go to the ER, and I told them I couldn't.  At that point, I knew I could not walk as far as the front door, let alone get into a vehicle and ride across town in that condition.  They then said they were going to have to call 911, and I said OK.  I had no idea what was wrong with me, but I knew that I needed help.  Immediate help.  

The next few hours are a blur for me.  I know when the EMTs arrived I was in very critical condition.  My blood pressure and oxygen were dangerously low.  My temperature and pulse were dangerously high.  I know they worked on me in the ambulance for 10 minutes before getting into place for the ride to the hospital.  I know I was given a breathing treatment.  I know I was put on 5 Liters of oxygen.  I learned that when they took my temperature at the hospital it was 105.3 degrees Fahrenheit.  I know my lactic acid was elevated.  I know my kidneys were in acute distress.  I was diagnosed with Septic Shock.   

When it was safe to transport me, once my vitals were in a safer range, I was taken to Lincoln where I spent the next two and a half days receiving IV antibiotics, Heparin shots in my stomach, and had labs run multiple times a day.  I was prescribed oral antibiotics to continue at home.  My bloodwork was inconclusive as to what caused my body to go into Septic Shock, so the doctors' theory is that I contracted a virus of some sort, unknown at this time, that caused the entire series of events to quickly unfold.

The unknown is scary.  The fact that I am now more susceptible to getting Sepsis is scary.  Having chunks of time I cannot remember and learning that. things I thought I did remember did not happen the way I picture them is scary.  But the scariest part of all of this are the after-effects that I had not expected to happen.  I had no idea...

Since being discharged from the hospital and being back at home, something is different with me.  Yes, there is the fact that I'm still not feeling well, haven't gotten back to my baseline yet.  But it's more than that.  Emotionally, that's where my struggle is, and I don't really know how to explain it...I am withdrawn, feel very hyper-sensitive and over-stimulated.  I startle more easily.  Some days I want to sleep 12 hours and some days I don't want to sleep at all.  I can feel myself getting annoyed quickly, agitated, less tolerant of others.  I feel very emotional, cry at the drop of a hat...I feel vulnerable, exposed, and very alone and unable to be understood by others because I don't know how to really put into words quite what these feelings are.   

I've been dealing with Long Covid, the loss of my career and life as I know it for 2 years now.  And it's so, so hard...but this is different.  This was fast and unexpected and unavoidable, and it almost took my life in a matter of minutes...and I don't know if these feelings I'm experiencing are common or "normal" for people who have come close to dying or if it's just me...but it's been a rough 3 weeks, to say the least...

People Suck and Other Revelations...

I began this blog (and wrote the title of this blog) October 30th, and now, today, December 10th, I am just now coming back to it.  My therapist has been waiting patiently for me to finish and post this blog, and I have tried several times, but just couldn't figure out exactly what I needed to say.  It was all in my head, but getting it out into words is something I've been struggling with...But, as I sit here at 4:30 A.M., still dark outside, my cats roaming around trying to figure out why I'm up to interrupt their shenanigans, and my dog still sleeping soundly in our room (along with my husband), I'm attempting this blog again...

Last night as I scrolled through Facebook, I came across an ad for Madonna Rehabilitation Long Covid Clinic.  I liked and shared it because I not only attended the Madonna Long Covid Clinic for 3 months, but still utilize their services as well.  After sharing the ad, I noticed several laughing emoji reactions on the original post (not mine), and I saw that 19 people had reacted in that way.  I then began reading the comments people were posting on the Madonna Long Covid Clinic page and became instantly emotional.  Words like "psychosomatic symptoms" and  "placebo effect" and "another fibromyalgia" along with conspiracy theories about the harmful lasting effects of vaccinations flooded the comments.  

I know I need to learn to ignore these types of things, but it's just hard sometimes.  When something has completely taken your previous way of life from you, how do you just let things like that slide off your back?  What I also wish I could ask each of those people mocking Long Covid is how they explain how the estimated 9 million people in the U.S. alone, and an estimated 65 million people around the world who have been diagnosed with symptoms of Long Covid if it's just something made up in our heads.  I would ask them to explain how we all just happened to have gone from perfectly healthy, active people living our best lives to being suddenly so debilitatingly ill that our careers, family life, social life, and physical well-being have been completely destroyed.  How do we all just KNOW what symptoms to describe that replicate the symptoms of others who are also experiencing them?  There's no other explanation for it.  Long Covid is real and it's an ugly, cruel illness that even the most renowned medical experts are still struggling to figure out.  Though many people do not have any abnormal test results, others of us do, and these clearly cannot be "faked" or "made up". 

Though many people with Long Covid will go through a battery of tests with no definitive answers to their symptoms, I personally have had an MRI that showed some areas of white matter on specific areas of my brain that are advanced for my age.  This would explain the split of over 40 points on my psychological evaluation between my attention/concentration/working memory and other areas of my cognitive brain function. For those who do not know exactly what those types of scores mean, when there is a large "gap" or split between scores, it means different functions of the brain are basically working at different paces or capacities which can make some aspects of my cognitive world really difficult.  

A fact I don't think most people outside of the Long Covid world realize is that those who have cognitive and psychological issues associated with Long Covid present very similarly to people who have suffered a traumatic brain injury (TBI), therefore, behavioral cognitive therapy is used in much the same way for Long Covid patients and TBI patients.  There are physical brain symptoms (such as advanced white matter, micro clots, etc.) that can contribute to these similarities, but there is also the psychological trauma that also plays a large part in those similarities.  Having an illness, whether mild in nature or so severe hospitalization was necessary, which results in major life changes, causes a lot of psychological trauma leading to anxiety, depression, and cognitive function deficiencies.  Many symptoms may also present closely with post-traumatic stress disorder (PTSD).  A sudden medical event that impacts every aspect of your life is traumatic, and dealing with the sudden and unexpected repercussions of that can be devastating...traumatic. 

Something I have really noticed regarding memory is that I can name off almost every student I had from the start of my career in 2001 to the end of the 20/21 school year.  However, I have a very difficult time coming up with the names of the students I had during my final year of teaching, (the 21/22 school year) which was the year I got Covid and began having Long Covid symptoms.  I recognize their faces, but I cannot come up with their names.  It's horribly frustrating and makes me feel so guilty too. 

Another thing that has been really difficult for me is word-finding.  I know it appears that I have no problem with that when reading my blogs, texts, etc.  However, the part no one outside of my immediate family sees is the amount of time I use googling "words that mean_______" or "synonyms of_______" because I just cannot find the exact word I'm looking for.  I can tell you what it is similar to, what its definition is, and how I want to use it in my sentence, but the word itself is just GONE.  I also have begun having another odd issue come up.  When writing/typing, I will often use the wrong form of a word, even when I'm picturing the word in my head correctly.  (And yes, since dealing with these cognitive changes, I have discovered that when I am writing/typing, I visualize the words as I'm typing/writing them, which I did not realize I had done until all of these new changes came about.). For example, I may mean "their", I'm picturing "t-h-e-i-r", but I type "t-h-e-r-e" and have to delete and retype it.  Or, I am trying to say "meet" and I type "meat".  The examples go on and on.  I do it with most homophones on a daily basis. It's as though my brain and my hands aren't communicating correctly.  I hate it too, because, as an English teacher and proud "wordsmith" by my own recognition, making those types of errors, and KNOWING the correct use of these words, is incredibly frustrating, especially when I don't catch the errors until after I've hit "send". 

Though this blog ended up going in a different direction than I'd intended when I started it 6 weeks ago, I finally finished it.  There is just so much I wish people understood, so much I wish even I understood about the changes that have occurred over these past 2 years.  But, maybe someone reading this will be able to relate, maybe they will realize they aren't quite so alone, and maybe it will help them to feel a little less isolated in their own battle.  If that is the case, then I've done what I have hoped and intended to do with my blog.

If any of you have a true interest in understanding Long Covid, want to learn more, or would like to find support for your own symptoms or show support for a loved one with Long Covid, I encourage you to join a Facebook Long Covid group.  A good, legit group I would recommend is: https://www.facebook.com/groups/COVID19survivorcorps/

'Til next time...

A Birthday, A Death, A Covid Test, and A Party

Every year on my birthday, I think, "This is going to be MY year."...This year, that is the exact opposite of what I was thinking.  This year on my birthday my thoughts were more along the lines of, "Am I going to survive this year?"

It's a struggle writing this blog.  My left hand keeps spasming, so my fingers hit multiple letters at rapid-fire speed and I have to go back, delete, and attempt to retype.  That along with the struggles I already have with word-finding and needing to google similar words in order to figure out what I'm trying to say makes writing blogs a several-hour process.  My symptoms are exacerbated because I currently have Covid.  Again.  Yep, the nightmare that began October 10, 2021, is once again making its presence known.  

My birthday was Saturday.  I turned 49.  The last year of my 40's.  I didn't feel well.  We stayed home, laid low, did nothing to celebrate my day.  It was honestly a pretty depressing day.  As far as birthdays go, it was in the top 4 worst birthdays I've had (the other 3 being my 16th, 22nd, and 24th).   

To finish off the day, I received a message through social media from my ex-husband's ex-wife (who I didn't even know existed) informing me that my ex-husband had passed away.  I had no idea how that news might affect me.  I'm honestly still processing it.  On one hand, I married him, spent 3 years with him, and loved him.  He was a father figure to my son from the tiny age of 3 months through 3 years old.  He came into my life when I had hit an emotional rock bottom, and we had some really great times together.  And he was so good to my son, loved him like his own.  But on the other hand, he was abusive, both emotionally and physically.  He gave me my first black eye 2 days after our wedding.  He cracked my eye socket on my birthday.  He bruised a nerve in my back, threw a glass at me, pulled a knife on me, and refused to allow me to have contact with any of my friends, even most of my family.  He literally pulled the phone cord out of the wall when I attempted to call a friend while he was home.  It was often a scary and very isolating time in my life.  However, thinking that he just no longer exists somewhere in this world...that is a feeling I'm still trying to process.  

The next morning, I woke up feeling very stuffed up, congested, and had a "heaviness" in my head.  I took a Covid test, and it was instantly positive.  My husband and daughter also took tests, and theirs were positive as well.  All of us getting Covid was bad enough, me getting it again after still suffering from so many Long Covid complications 22 months after my first bout with Covid is pretty concerning.  I'm struggling.  I told my husband I feel like my brain is being attacked from the inside.  I don't know how else to describe it.  

My biggest disappointment of the weekend was not being able to attend a family gathering I had been looking forward to for weeks and weeks.  My aunt and uncle were celebrating their 50th anniversary, and I was sooo looking forward to seeing all my aunts, uncles, cousins, etc. whom I don't see on a regular basis.  I was absolutely devastated that I was no longer able to go because of our positive Covid tests. A lot of tears were shed as I watched the clock tick away, knowing what I was missing.  My cousin did Facetime me, which allowed me to see everyone, to watch my aunt and uncle open their gift from me, and to talk to people I hadn't seen in quite some time.  That did make me feel a little better about things, but it still, obviously, wasn't the same...

I've said it before, and I'm sure I'll say it again...Covid has RUINED my life...

I began taking a selfie on my birthday each year starting at age 46.  You can see that the two years before having Covid and the 2 years since having Covid are quite different...                             

                 

Purgatory: An Analogy

My husband, my daughter, and I went out of town to have a nice lunch together for my daughter's birthday.  We were listening to music, and "Hotel California" came on.  My daughter and I began having a discussion about what it was actually in reference to or what The Eagles intended it to be about.  There are many theories, but one of them is that Hotel California is a sort of purgatory.  We then got on the topic of what purgatory is and means.  I said purgatory in itself can be an analogy to so many things really.  Then it hit me, and I said, "That is how I feel; Long Covid is purgatory for me."

The Merriam-Webster dictionary gives the following definition:                          pur-ga-to-ry /pər gə tȯr ē/ noun a place or state of temporary suffering or misery

The belief in terms of religious references to purgatory is that purgatory includes both suffering and healing. However, some believe a minute in purgatory is a year in our time; some believe it is only a short stay until the prayers of loved ones release you from that state of abyss.

When people ask me how I am feeling, I usually give an answer such as "hanging in there" or "one day at a time" But, what feels like the most accurate answer would be, "I feel like I'm stuck in purgatory, and I have no idea what I need to do in order to be released from it. I'm not healing, not getting better. But, I'm not dead either. I'm stuck in this abyss of nothingness." I realized at that moment, as we listened to the song, that Long Covid feels like Purgatory to me. I finally have the perfect analogy for what these past 22 months have felt like.

I have been struggling lately. A lot. After a 71-hour streak without sleeping, I am now working with my healthcare team to help my brain to understand that it needs sleep. A prescription sleep aid is the newest addition to the plethora of pills and supplements I take each day, on a 5-alarm reminder schedule. It just seems that there is one problem after another, one new, quirky, bothersome symptom every couple of months. Sometimes I laugh; sometimes I cry. Sometimes, I do both.

"Last thing I remember, I was running for the door.  I had to find the passage back to the place I was before.  'Relax,'  said the night man, 'We are programmed to receive.  You can check out any time you like, but you can never leave.'"                ~ The Eagles

Works Cited:

“America’s Most Trusted Dictionary.” Merriam-Webster, www.merriam-webster.com/. Accessed 9 Aug. 2023.

"Hotel California."  Hotel California, Asylum Records, 1976.

It's not all in my head...but some of it actually is...

One of the most frustrating things medical professionals (or friends, family colleagues, etc.) can tell someone when they complain of an ailment is that it is "all in your head".  This response causes feelings of invalidation and even distrust of those who we expect to listen and to support us when we are struggling.  One of my favorite quotes from the sitcom Boy Meets World is from Season 7, Episode 14, when Cory Matthews thinks he is terminally ill and goes to the doctor.  When he comes home, he gives his wife, Topanga, the news that his doctor diagnosed him with hypochondria and gave him placebos to take to treat his illness. When Topanga tells him that hypochondria is what it's called when crazy people think they're sick when it's really all in their heads, and his best friend, Shawn, tells him placebos are pills to make crazy people think they are being treated for illnesses they don't really have, he gives the impassioned response that he has to be on them for the rest of his life. 

But, sometimes it really IS all in our heads.  Literally.  

The impact trauma has on a person physically, mentally, and emotionally is difficult to describe if you haven't experienced it firsthand.  You can think you understand, offer sympathy, and even make jokes about being forgetful too, but the trauma response in those who have experienced either mental or physical trauma is much different than simply forgetting if you turned off a light or forgetting to pick up milk on your way home from work.  It impacts every single aspect of your life.  

Research published by both the University of Denver and the National Library of Medicine shows very similar patterns among those suffering from Post-Traumatic Stress Disorder (PTSD), people with Traumatic Brain Injury (TBI), and Long Covid patients.  The impacts of PTSD on Long Covid patients were very similar in both those who were hospitalized with more severe symptoms and those who had more mild symptoms and were never hospitalized during the duration of their Covid infection.  The trauma responses aligning with PTSD are because of the impact Covid has on their lives following the illness.  TBI symptoms are due to inflammation caused by the Covid virus, similar to the inflammation caused by a concussion injury.  This inflammation found in Long Covid sufferers typically affects the brain stem, just as is the typical area of inflammation in concussion patients.  

The American Psychiatric Association describes PTSD as an anxiety disorder that must include five major criteria.  In terms of Long Covid, the five criteria are met based on the experiences of Covid-19 and its lasting impacts.  The five criteria in my own personal situation are:  1.) Exposure to an event that threatens safety, triggering a response of fear or helplessness.  In this case, that event is being infected by Covid-19.  2.) Psychological distress when reminded of my trauma; 3.) At least three avoidance symptoms; My personal avoidance symptoms are active avoidance of reminders, withdrawal from others, and emotional numbing.  4.) Marked arousal; Mine include insomnia, difficulty with concentration, and a heightened startle response. 5.) These symptoms must cause considerable functional impairment at least 1 month after the initial trauma event. I first began to notice concerning cognitive symptoms in mid-November, 2021, which was 4-5 weeks after my positive Covid test.  

Treatments for the mental and emotional areas of Long Covid look very similar to the cognitive behavioral therapy used for TBI and PTSD patients.  This therapy can be difficult and extensive.  Working through the traumas that brought me to the place I am at today means digging deep and first facing those triggers and traumas I had kept tucked away in deep, dark places in my brain.  It means knowing that there is some actual physical damage caused to my brain because of the initial infection, and learning how to accommodate for those things that don't work the way they used to work.  It means finding a way to accept that this is my new reality and trying to move forward, even when the future is scary and unknown after thinking I had the whole rest of my life all figured out.  It means living one day at a time and remembering that every teeny, tiny baby step forward is still forward motion and needs to be celebrated.

References

Anschuetz, Nika. “DU Study Finds Similarities in Diagnosis and Treatment for Concussions and Long Covid.” University of Denver, 20 Feb. 2023, www.du.edu/news/du-study-finds-similarities-diagnosis-and-treatment-concussions-and-long-covid#:~:text=There’s%20a%20deficit%20between%20acute,they%20could%20involve%20similar%20treatments.

Bryant, Richard. “Post-traumatic stress disorder vs traumatic brain injury.” Dialogues in clinical neuroscience vol. 13,3 (2011): 251-62. doi:10.31887/DCNS.2011.13.2/rbryant 

Houben-Wilke, Sarah et al. “The Impact of Long COVID-19 on Mental Health: Observational 6-Month Follow-Up Study.” JMIR mental health vol. 9,2 e33704. 24 Feb. 2022, doi:10.2196/33704