I fired my doctors and built a Long COVID recovery program that might be saving my life
“Not a good day. Feels like a setback after a very good day yesterday. After a 40-minute zoom call, my throat hurt all day. Working too much and other stressors exhausted me. I did far less breathing exercise than prior days. Very little movement, too. I was exhausted at the end of the day. Talked too much on zoom, phone, and to family today. Pretty depressing to have a day like this after about 5 straight good ones.”
That was Day 49.
You’ve got Long COVID
When I told my doctor on day 33 that I couldn’t do much, due to overwhelming fatigue, and that I was still coughing and clearing my throat nearly nonstop, and that I couldn’t write more than a couple of sentences without groping to find the words, she told me I had Long-haul COVID, which amounts to 28 days of ongoing symptoms.
“We don’t know much about it right now,” she said. “I can recommend a program.”
In another week or two, I’ll be fine, I thought. Three days later, I called about the program my doctor recommended and was placed on a three-month waiting list. You read right — 3 months!
A new plan
A few weeks after being diagnosed with COVID-19, I started reading about long haulers, because I didn’t feel like I was improving. I read stories from major news sources, like the New York Times, along with some regional and local websites, and even some personal blogs, detailing what long haulers were facing and how some were dealing with it.
Then, I went to medical sites and journals, and read some research about thousands of long haulers — some suffering as I was for up to 18 months. Eighteen months! I thought. No way I can make it that long, feeling like I do. I’ve got to do something.
With mounting anxiety, very little help from doctors, and only fractional daily improvement, it was time to be proactive. I decided I would definitely participate in a Long COVID Recover Program — a program I would create myself, based on my own research and what I’d learned in the past couple of years about health, vitality, and longevity. A program that would start immediately — not in three months.
That was Day 41
If I was going to be serious about this, I had to write out my plan. Here is an abbreviated version:
Summary of Long Covid (paraphrased from various medical sources and my own interpretation)
Otherwise known as post-COVID-19 syndrome, long-tail COVID, or long-haul COVID, the effects can impact your ability to work, study, manage your finances, take part in social activities, or make decisions. Even light physical activities, such as housework, driving, or making a phone call can leave you feeling exhausted and aching.
As a “long hauler”, you may also suffer changes in your mood, most commonly exhibiting symptoms of anxiety, depression, or post-traumatic stress disorder.
My symptoms (researchers have identified more than 250)
Physical:
· Fatigue, muscle aches, and weakness
· Chest pain and heart palpitations
· Shortness of breath
· Rash
· Throat pain/hoarseness/laryngitis
Mental or neurological:
· Memory and concentration problems or difficulty thinking straight (brain or COVID “fog”)
· Sleep disruption— ranging from sleeping too much to insomnia (sometimes waking in the middle of the night with panic attacks)
· Depression and Anxiety, accompanied by changes in mood, extreme emotions
Taking action: my daily plan to beat Long COVID
1 — Mitigate stress, beginning with identifying my stressors:
· Unplanned activities
· Disagreements/arguments with family
· Driving in traffic or inclement weather
· Crowds
· Too much clutter in the house
· Too many scheduled activities in a single day
· Taking care of my elderly parents
· Business — starting new projects and tasks that require sustained thought (reading reports and writing new content or emails)
2 — Develop and employ daily and weekly coping strategies:
· Start each day with meditation, diaphragmatic breathing, and light stretching (yoga, Tai-Chi) — 30 minutes
· Complete 5–10-minute periods of light housework (dishes, laundry, decluttering) throughout the day
· Break work tasks into 10–15-minute intervals; rest for 10–15 minutes after any activity
· Avoid all unnecessary travel, especially during traffic and inclement weather
· Actively monitor stress levels; pause and mediate when stress levels increase
· Spend quality time with family: have open and honest conversations about my physical and mental health
3 — Ease into exercise
· Attempt light stretching, yoga poses, Tai-Chi, deep breathing exercises daily
· Work toward 3,000 steps daily
· Do 500–1,000 additional steps every other day, if feeling up to it
· Do some light weights twice weekly, if feeling up to it
· Try to increase these goals in one month
4 — Eat and drink only nutritious foods and beverages
· Focus on foods that decrease inflammation
· Focus on foods that increase energy
· Eat more often (fast less-up to 4 days weekly)
· Balance a “cheat meal” with a healthy side dish, salad, or fruit
· Drink more tea; drink less alcohol
5 — Focus on mental/emotional health
· Be mindful of anxiety-building and stressful situations and act to mitigate them immediately
· Seek help from family — especially your spouse
· Stop everything and rest/meditate for 20–30 minutes in the afternoon and evening
· Pause between activities for one minute of deep breathing
· Listen to soothing music
· Talk about how you feel
· Consider the daily and weekly schedule and plan ahead to limit anxiety and stress (be intentional about planning)
What really is “normal?”
“Slept 8.5 hours. Went to the dentist — (I wanted to try something normal). Just sitting in the chair and having my teeth and gums poked took a lot out of me. This, coupled with some other family-related stressors kept me from doing much. I took it slow the rest of the day. Didn’t exercise at all. Overall, I felt about 60% of normal.”
That was Day 63.
So many sick, with so little understanding
A 2021 study of 2 million COVID survivors found that 23 percent had Long-Haul COVID. Many researchers believe that up to one-third of all people infected will become long haulers. At the time of this post, roughly 366 million people around the world had “recovered” from COVID, according to worldometers.info. If 23 percent of them are or become long haulers, that means, as of today, more than 84 million people will suffer numerous, many debilitating, symptoms for possibly years. Some may have symptoms for the remainder of their lives. Many will never return to work. We still don’t know how many will ultimately die from long haul complications.
In spite of these staggering numbers, some medical practitioners, and many people outside the profession, think Long COVID is not serious. Some believe it’s a fictitious affliction, conjured by hypochondriacs and lunatics. “It’s all in your head,” many people in one very large Long COVID Facebook group were told. “My family and friends just don’t understand,” is another popular refrain. Some doctors advise patients to “Get back on the horse,” encouraging them to continue their normal work and exercise, prior to contracting COVID.
This attitude is one more cause of anxiety among long haulers, who need comfort and support to fight what can be a very imposing foe. I know when I go out to a store or to pick up food from a restaurant, I present as not sick. If the COVID subject comes up and I mention my ongoing battle, I know some people think I’m being dramatic or looking for attention. I know many people like me experience this, too.
One step forward
“Slept nearly 9 hours and felt well rested. Started the day with deep breathing exercises, some planks (that’s new), and Tai Chi. Fasted about 13 hours before eating chopped salad with vegetables, nuts, feta, and oil and vinegar dressing. More of the same for dinner; no meat today.
“Did more Tai Chi in the evening and felt great. Then my throat started hurting again (guess I talked too much today). I was clearing my throat constantly after dinner and before falling asleep. Other than this, I felt about 85% of normal. A great day.”
That was Day 64.
Keep up the good work
The title of this post says, “I fired my doctors…,” which is a bit hyperbolic. I created my own program, without much input from my personal medical team. These are intelligent and caring professionals, whom I rely on them for so much. They just don’t know enough about this to offer impactful advice.
When I shared my personal program, emphasizing deep breathing exercises, meditation, hydration, diet, and rest, one doctor said I was doing a lot of what they encourage their COVID patients to do. “Keep doing what you’re doing,” she said, after ordering a battery of blood tests and a chest X-ray. (As expected, all of those tests came back normal.)
Summing up
Prior to contracting COVID-19 in December of 2021, the pandemic had already influenced me to make some dramatic changes in my life — at first, to strengthen my immune system prior to the vaccine, and later, to live a long and healthy life and watch my children grow old. While I wasn’t too overweight or in overall poor health, I do have epilepsy and some inflammation issues. After researching health and vitality (I read a lot of books, watched a lot of videos, and talked to a lot of experts), I created my own new diet — a hybrid of a few of the popular ones. The simplest way to describe it is “mostly plant-based, with a little fish and baked or grilled chicken.”
Along with this new way of eating, I focused on exercise that would add muscle, bone density, and improved flexibility. And I got serious about sleep — one of the most important health factors for all people. I was already on my way to improved health and longevity, well ahead of getting COVID, which may have impacted my ongoing battle with long COVID, helping me improve more quickly — if any of us believe 70-plus days is quick.
Still, I believe my program, detailed in this post, coupled with being triple vaccinated, quite possibly saved my life. I guess time will tell.
One more thing
I failed to include earlier in this post a key addition to my recovery plan: smiles and affirmations are powerful, as indicated in this journal entry, in which I reflect on the plan two weeks in:
“I’ve mostly stayed home and focused on the plan. Avoiding stressful situations, like driving in high traffic, arguing, reading toxic social media, and participating in parental care (thanks to my family for taking up my slack), has played a pivotal role in my convalescence. It also validates my belief in the impact stress has on mental and physical health, in general.
“I’m surprised by the impact of smiling, laughing, and reciting affirmations on my recovery. Being intentional about smiling and repeating mantras like, ‘I feel great’ and ‘I feel strong’ throughout the day helps. I realized that I’ve dwelled on the negative far too much. Constantly talking about how bad I felt early on, I believe, made me feel worse. So long, negativity!
“The brain plays a huge role in the body’s ability to stave off illness. I believe this mental approach will not only lead me to recover from long COVID, but will improve my outlook on life and my general health moving forward.
“Diaphragmatic breathing, coupled with meditation, has been incredible. I now have no shortness of breath, and I’m sure that these 3–5 daily breathing and mediation sessions have made me stronger and improved my focus.
“While I’ve been practicing meditation for some time, I had only dabbled in Tai Chi before creating this self care program. Tai Chi has been a game changer. Not only does it get me moving, it has a powerful calming effect. Not to turn this spiritual, but I believe Tai Chi can lead me to a new level of consciousness, and I’ll be a lifelong practitioner.
“I’ll work this plan for a few more weeks and, hopefully, be able to play golf and walk 10,000 steps again when the weather breaks.”
That was Day 60.
Now…
Today is Day 75, and I feel as normal as I have since November of 2021. I’m still on the program and will remain on it until I know Long Haul COVID is gone. I’ve learned to live in the now, embracing all that is good in each day … still, and always, hoping for just a little better tomorrow.
