LIVING WITH:
Long COVID: pOST-covid sYNDROME
… Survivor’s Curse?
Call It What You Will… A Rose By Any Other Name Will Still Stick You With Its Thorns (sorry Bill Shakespeare…)
It seems to be Unofficially Officially been labelled Post-COVID Syndrome or Post-COVID Conditions…
But it’s also got a Myriad of other monikers to describe what this god-awful state so many people are finding themselves in these days…
- Long COVID
- long-haul COVID
- post-acute COVID-19
- post-acute sequelae of SARS CoV-2 infection (PASC)
- long-term effects of COVID
- chronic COVID.
The National Institute for Health and Care Excellence 2021
SAYS:
Signs and symptoms that develop during or after an infection consistent with COVID‑19, continue for more than 12 weeks and are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body.
Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.
In addition to the clinical case definitions, the term ‘long COVID’ is commonly used to describe signs and symptoms that continue or develop after acute COVID‑19. It includes both ongoing symptomatic COVID‑19 (from 4 to 12 weeks) and post‑COVID‑19 syndrome (12 weeks or more).
Recovery from Coronavirus can vary greatly from person to person. For some people recovery is short. For others, symptoms can last for weeks or even months.
The National Institute for Health and Care Excellence 2021
It is common to feel tired and fatigued, and other symptoms can include breathlessness, cough, muscle weakness and problems with memory or concentration.
This can make usual day-to-day activities more difficult. Symptoms can also “come and go” so you may feel better one day, and worse the next. Therefore it is important not to rush back to “normal” life.
Everyone is affected differently, which means you may need different care and support from others who have had it. It is important not to compare yourself to other people.
Most cases that seems to be heard or written about are the type that is Sheer Exhaustion, where even the smallest thing renders the person incapable of managing anything else afterwards.
An Intense, Deep Tiredness that destroys lives and renders the patients unable to function anywhere close to what might be deemed as “normal“.
But As BAD As That Is…
Long COVID can be far more complicated, and it affects people to the point of endangering them with physiological problems and conditions that well may harm or endanger life in a different way.
According To All The Specialists, SYMPTOMS VARY….
Some Are Downright Dangerous. Most Are Forever Life Changing.
Few Are Even Manageable With Help.
I think it’s very clear —
to me, at least —
That EVERYONE In This Household has some form of Long COVID.
I don’t think I can describe the bone-marrow-deep heavy fatigue inside, feeling too Exhausted to even breathe, and how moving — in Any Way — seems Monumentally Impossible…
To me, maybe it feels more like an… Intense “Malaise”*… but with Star-Wars Levels of Astronomically B.A.D — think that PLUS about TEN BILLION… And that’s ON TOP OF the Fibromyalgia stuff.
* Malaise is described as any of the following:
•a feeling of overall weakness
•a feeling of discomfort
•a feeling like you have an illness
•simply not feeling well
It often occurs with fatigue and an inability to restore a feeling of health through proper rest.
My Entire World… My Entire Existence… Has narrowed exceptionally. I can only sit and do very small things for a very short amount of time before feeling Utterly Drained of all Existence, and Fatigued & Exhausted Beyond Measure. I am Unable To Manage even Basic Things on my own.
I Am Entirely Non-Functional.
I thought were “Small Basics” of trying to achieve some sort of living before, are now Too Much To Manage. To Even Think About — lest I want to feel like throwing up at the sheer OVERLOAD it would take to do any of it…
Simple things like Using Make-Up. Reading a [Kindle] book, or even short FanFic. Writing. Playing Games. Drinking Coffee. Eating. Staying Awake. Physically Getting Out Of Bed. Sitting Up. Showering. Hair Washing. Hair Brushing. Getting Dressed. Organising Even Small Things – like sending online stuff (like Amazon or BooHoo) things back. Putting Things Away After Using Them. Making It To The Bathroom…
I can hardly sit up in my Kushtie [wheelchair] on my own, and pushing it takes such MONUMENTAL Effort. I used to be able to make it up the hill between the house and the road with a Heavy Backpack on the back. Now, I can’t make it At All by myself.
It’s like my body has gone back FIVE YEARS, to when I had SEPSIS and was In Hospital being treated for it. I couldn’t even sit up in bed, unless the bed did it for me. Nurses had to turn me over to help me with changing me or making my bed. I had to endure bed baths, and I couldn’t even get into my chair for the first 4 weeks I was there (I was there for six weeks).
Everything is A BILLION Times Worse, Harder, or Outright IMPOSSIBLE now than before COVID.
And ALL That Is Not From PAIN This time … But From Absolute Sheer Exhaustion. It’s Very Similar To ME/CFS and Post-Viral Fatigue Syndrome.
After A LONG-Haul 3 Year Post-Sepsis Recovery Game-Plan of Working with my Mother in Physio, Mental Health, Strengthening, Practicing Going Outside, Managing The Shower… It’s All Gone To Hell In A Hand-Basket.
My Mother caught COVID RIGHT At The Beginning… April 2020. She was a Nurse in a Nursing Home. She was “Lucky” — hers was a Severe Flue type; horrible but not dangerous. Lolli and I shielded in our room, she shielded in hers. Dad was trying his best to help in any way he could without catching it himself. It was a very trying week, but she started getting better by the end of it.
Then… Goddamned WORK Decided To Call Her In — WAY Too Soon. Back Then… It was 7 days’ leave and Done. No one HAD A CLUE.
They made her go back before she was well enough to. She had a NEGATIVE LFT so she was told to go in. They were short-staffed and desperate, but that decision THEY Made had the same impact on my Mother that My Work had on Me when they Forced ME Back Too Soon after contracting Pneumonia.
Like me, her health failed and never recovered. She STILL has COVID Cough — the very one that made me realise she’d caught it before she, or anyone else, had noticed or realised. I Begged Her to get tested (she insisted she had a cold and sinusitis[!!]... And I Insisted she get a goddamned Test!) — and then it was, of course, POSITIVE.
But Not ONLY that… Her Arthritis has gone Haywire; developed Plantar Fasciitis, she has Brain Fog & Memory Problems that rivals mine, and Huge & Heavy Fatigue that was never there before.
And all of this has been steadily getting worse over time. It definitely brought her Retirement forward a good couple of years, if not more — A BIG Shame, because there’s nowhere near enough good nurses in the Health & Social Care System…
What The Professionals Say
Symptoms after acute COVID-19 are highly variable and wide ranging. The most commonly reported symptoms include (but are not limited to) the following:
Respiratory symptoms
- Breathlessness
- Cough
Cardiovascular symptoms
- Chest tightness
- Chest pain
- Palpitations
Generalised symptoms
- Fatigue
- Fever
- Pain
Neurological symptoms
- Cognitive impairment (‘brain fog’, loss of concentration or memory issues)
- Headache
- Sleep disturbance
- Peripheral neuropathy symptoms (pins and needles and numbness)
- Dizziness
- Delirium (in older populations)
- Mobility impairment
- Visual disturbance
Gastrointestinal symptoms
- Abdominal pain
- Nausea and vomiting
- Diarrhoea
- Weight loss and reduced appetite
Musculoskeletal symptoms
- Joint pain
- Muscle pain
Ear, nose and throat symptoms
- Tinnitus
- Earache
- Sore throat
- Dizziness
- Loss of taste and/or smell
- Nasal congestion
Dermatological symptoms
- Skin rashes
- Hair loss
Psychological/psychiatric symptoms
- Symptoms of depression
- Symptoms of anxiety
- Symptoms of post-traumatic stress disorder
What are the symptoms of post-COVID-19 syndrome?
The most commonly reported symptoms of post-COVID-19 syndrome include:
- Fatigue
- Symptoms that get worse after physical or mental effort
- Fever
- Lung (respiratory) symptoms, including difficulty breathing or shortness of breath and cough
Other possible symptoms include:
- Neurological symptoms or mental health conditions, including difficulty thinking or concentrating, headache, sleep problems, dizziness when you stand, pins-and-needles feeling, loss of smell or taste, and depression or anxiety
- Joint or muscle pain
- Heart symptoms or conditions, including chest pain and fast or pounding heartbeat
- Digestive symptoms, including diarrhea and stomach pain
- Blood clots and blood vessel (vascular) issues, including a blood clot that travels to the lungs from deep veins in the legs and blocks blood flow to the lungs (pulmonary embolism)
- Other symptoms, such as a rash and changes in the menstrual cycle
General symptoms (Not a Comprehensive List)
- Tiredness or fatigue that interferes with daily life
- Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
- Fever
Respiratory and heart symptoms
- Difficulty breathing or shortness of breath
- Cough
- Chest pain
- Fast-beating or pounding heart (also known as heart palpitations)
Neurological symptoms
- Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
- Headache
- Sleep problems
- Dizziness when you stand up (lightheadedness)
- Pins-and-needles feelings
- Change in smell or taste
- Depression or anxiety
Digestive symptoms
- Diarrhea
- Stomach pain
Other symptoms
- Joint or muscle pain
- Rash
- Changes in menstrual cycles