I haven’t posted in a while because the narrative changed regarding systemic racism, which is vitally important in such a time as this; however, there is also a terrible pandemic still happening and in many US states the cases are rising.
So before I give the latest update . .
[Jeannie ascends the soapbox … taps the microphone and clears her husky voice, ‘Is this thing on??’ ]
***IMPORTANT – You can get a terrible version of this virus even if you are healthy and young. I REPEAT … You are not immune to a challenging version of Covid-19 even if you do not fall into the vulnerable or high-risk category.** This is not to give fear but to implore you to navigate these weird, uncertain times with extreme caution.
Let me explain.
They call it Covid Long Tail or Long Haul lingering symptoms or more informally, the Covid Coaster, for those with a persistent version. You never know from hour to hour if you will have energy, flare-ups, feel decent, a new symptom or a mix. A stat in the UK has come out that 1 in 10 mild to moderate (I’m moderate) will have various symptoms for over three weeks and most likely for months. Most don’t have symptoms severe enough for a hospital stay, in fact, many say it started off feeling like allergies or a cold.
Doctors are not giving a time frame for full recovery, though during my last ‘check-in’ my doc mentioned they had seen reports out of Europe of cases lasting 4-6 months. He also mentioned many patients here in our UK practice had been reporting relapses or ‘they just weren’t getting better’.
I have hope I am improving but it is at a snail’s pace. The symptoms continue though they lessen a tiny bit each week: Sudden asthma-like lung constriction, shortness of breath, sporadic hoarseness, headaches, weird muscle aches/pains/stiffness where sometimes I can barely walk and fatigue that can feel like a wall of jetlag has hit me. I do have concerns for lung issues long term as today I woke up feeling like I am breathing out of a straw, but this comes and goes. One key is to not ‘push’ it as I tend to pay for the following next few days.
But I am not alone. In the five weeks since my last update, I joined a Long Haul Covid FB support group and became part of the administrative team. It has 58 nations involved and is for 80+ days. I’m also a participant in a smaller UK one which helps as we are all on the same health system.
These groups are growing (and creating offshoots) at a phenomenal rate and are getting more press and recognition. In fact, CNN and NBC in the US aired reports today.
Here are a few observations that may challenge what you know of Covid-19:
**Really healthy people can get lingering symptoms. We have triathletes, personal trainers in their early 20s, Hiit instructors, dancers, vegans, people who were not low in Vitamin D levels, and the list goes on. One pattern for some (not me—I was just miserable the entire time) is they had it for two weeks or a little longer, had a period of normalcy and went back to work and light training. Then it hit again unexpectedly. Some ended up in the ER. Some have gone to the ER over and over with relapses.
**Lingering symptoms can start off mild for weeks and then lead complications in any organ due to Covid. This beast is not just respiratory. Many of the members in the group had the respiratory issues like myself, but others have had more heart problems, kidney issues, fevers, neurological issues, rashes galore and more. Honestly, the list is longer than my arm. A few were mild in the first weeks are now dealing with things like blood clots in these later weeks and needed urgent care. Some have had fevers for over 90 days straight.
**There are lots of kids who have it. I saw a news report from the US stating that kids tend to be asymptomatic and it’s only the rare case of who gets it. Not true. We have lots of families in the group and you have no idea how heart-breaking it is reading posts about kids. These were healthy kids of all ages, pre-Covid and now dealing with the same issues as their parents. Kids have also been reported to have a mild case for a few weeks, fine for almost two months, and then have an odd relapse. It heart-breaking it is to see a mom post about her 8-year-old who has a horrible rash, fever, headache and a visit to the ER in week 10.
**Many who have been tested in this group had false negatives. Some had a false negative several times. This is down to test unreliability, the time of testing, and even where the test sample was taken. In the US there are some employers and even insurance providers demanding test results. Honestly, if it is weird and you have experienced nothing like it (especially if you have respiratory issues), I would assume you have it.
**Mental health is hard hitting in this group and it is a constant fight to keep your head above water. We have posted in these groups national suicide hotlines and resources. People have used them. Imagine with being ill with bizarre symptoms that wake you in the night for weeks and weeks. THEN add: the CDC or WHO or NHS say mild last 14 days, your employer questions you because your test was negative, the physician calls it anxiety despite horrid symptoms, disbelieving or unsupportive friends are calling it a hoax or just a cold (not my case – I’m so grateful!), and then all the social media mayhem. Sounds like a recipe for a disaster emotionally.
I’ve done several media interviews lately and a question I get is whether it has impacted my mental health.
Here’s what I’ve said in one interview:
“I’m a certified wellness coach and I’ve done lay counselling and mentoring for years. I also value coaching/counselling and have done this in different seasons of my life. I have an incredibly supportive family and friendship base. BUT at week 11 one night my husband during dinner said to me, ‘Hey, this guy I was talking to mentioned that you should try . .(insert the bazillion pieces of well-meaning health advice)’. I started crying. Hard. For 20 minutes. It had all built up. The health advice fatigue. The chronic Covid symptom fatigue’. The ‘Feeling better today?’ question from friends fatigue. The constant flare-ups of laryngitis fatigue. The PTSD from the unique ‘Covid Strangle’ where you literally wake up choking fatigue. The ‘world is crashing outside my quarantine home’ fatigue.
That night, I pursued a coach and a counsellor and a few other outside emotional supports. I will continue weekly until I am fully on the other side of this thing. And I don’t know when that will be.’
Yes – mental health and emotional support for even the ‘strongest of us’ are key.
**There are a lot of theories but no solid research on why this is happening. Genuine evidence out of peer-reviewed (key word), takes a few years and research with this virus has only been since January. Currently, there is a tremendous amount of ‘bad science’ and conflicting reports.
**Diet and lifestyle do not protect you from the lingering symptom category. We have done tons of polls in these groups. We have vegans, vegetarians, paleo, whole 30, super healthy and then those who could have cared less pre-Covid about their diet. On an encouraging note, because of our wacky immune systems are now in overdrive, many find that anti-inflammatory and/or low histamine diets plus extra hydration are helping to curb some symptoms.
My challenges at almost week 16 are the lingering symptoms that come and go throughout the day, fragile vocal cords, the waves of fatigue, fluctuating lung constriction and shortness of breath. I’ve also had odd muscle pain, aches and nerve issues. **No health advice please
But here are the positives:
+I’ve started counselling and coaching and find them both really helpful, especially in working with having chronic pain and illness. I also have also had amazing support from my family and friends.
+I love helping to admin the Long Haul group with new friends on my team. I get to use my skills as a wellness coach and offer encouragement and hope. Collectively in these groups, we are also getting the word out in various media channels across our different nations and feel like pioneers in this crazy pandemic.
+I can do various things in my diverse portfolio career of media and wellness about 2-3 hours a day (followed by my daily nap). This had included leading several webinars on skin health where my voice held up which felt like a major victory after 11 weeks of laryngitis.
+From day one I choose not to be a victim to this virus. Yes, it beat me up (and still does to an extent) quite badly, but I choose not to feel completely powerless to its unpredictability in my poor body. What I mean is that I believe the best for recovery, have hope even in my emotional wobbles and if there is a way to help others, even in a small way, it feels empowering.
One way I am doing this is by being a case study and helping provide networking contacts for RICOVR, a new research and innovation unit to support people to recover and rehabilitate from Covid-19 through Sheffield Hallam University’s Advanced Wellbeing Research Centre. I’ve already done many local TV and radio interviews (with my sometimes raspy voice) and we hope to bring this to more national attention.
Overall, for those who have sent their encouragements and kept me in their thoughts and prayers, I deeply appreciate it and still need them. It has been tough, but it has not beaten me. And I have great hope for full recovery, though it is taking much longer than I would have ever imagined.
At the moment our family is trying to be active and educate ourselves in how we can do our part to fight systemic racism. Recently I read a quote from a collection of Martin Luther King’s essays where he said the prayer during the final difficult months of the bus boycott in 1956, ‘Lord, help me to accept my tools. However dull they are, help me to accept them. And then Lord, after I have accepted my tools, help me to set out and do what I can do with my tools.’
My ‘tools’ are quite limited these days as I recover, but I want to use the few I have to make a difference for those in this pandemic with promoting awareness and helping with recovery efforts.
For those who would like to read more stats, research, and stories, here are a few links.
Paul Garner: Covid-19 at 14 weeks—phantom speed cameras, unknown limits, and harsh penalties
Paul Garner: Covid-19 and fatigue—a game of snakes and ladders