The Ramblings of the Dying

Jason-Blog-Pic
jps-blog

Every morning, I wake up in my bedroom in a care home, and for a second, I can remember the old me. The me without pain, the me with energy, the me who could do whatever I wanted.

Then I’m shoved back into my new reality. As I fully come into consciousness, I feel dizzy, faint and nauseated. Pain pulses through my head, and my limbs feel simultaneously as heavy as concrete and weak as jelly. I feel poisoned and seemingly unable to take in air. Extreme exhaustion overtakes me.

I do not want to be conscious. I want to go back to sleep and not face this torture for another day.

These sensations have been a daily occurrence, with few exceptions, for the past two years and six months. In the morning a carer will come in with my marmite on gluten-free toast & a black tea. I haven’t felt hunger for food this whole time. Sometimes I’ll eat it, and some days I’m too nauseated. As long as I have water, I’m okay.

I live with what’s known as long Covid, an illness that has reshaped my life.

I’ve come to realize that “long Covid” is a deceptive term for a condition that presents a diverse swarm of debilitating symptoms with no end in sight. What I’ve experienced is in no way just a lingering cough or a few weeks of fatigue after an acute COVID-19 infection.

I first got Covid in December 2021. My case was not considered severe. I was not hospitalized like many who got sick in the early days because it didn’t attack my lungs. I experienced fevers, hallucinations & what I now know are called ‘Ghost Poops’ for a week. The virus attacked my gut and liver and I’ve only been able to eat a restricted diet since.

A few weeks after I seemed to be recovering back to my baseline ME/CFS. Then more symptoms emerged including even more extreme fatigue, frequent low-grade fevers, temperature dysregulation, chills, heart palpitations, brain fog, burning sensations all over my body and more. My oxygen levels declined again. I couldn’t think clearly and I was getting a real sense of impending doom.

I thought I was recovering. Then I wasn’t. What the fuck was going on?

My doctor was nonchalant when I wanted her to be alarmed. After many tests returned inconclusive results, they told me that I was probably just stressed and my ME had got worse & should try to get up and get some fresh air. Or I should try to push through and walk around my flat. Or maybe I should switch anti-anxiety meds. They were gaslighting me from the start.

I got private blood tests done and they confirmed I had liver damage. I have never had a high liver count before. I had blood tests done shortly before Covid and they were normal. Now they were abnormal.

This was just the beginning of two and a half years of medical professionals not only gaslighting and psychologising what was happening to me but blaming, shaming and lying to me.

As a person with a history of chronic illness (ME/CFS) I was used to this but well enough to not care too much. Now I was extremely ill and dependent on people, it was mental abuse and medical neglect.

Despite seemingly making improvement after a couple of months I began to get worse again. My symptoms became even more intense and entirely debilitating. Unrelenting chest tightness and tachycardia, dizziness while sitting up, frequent nausea and headaches, systemic reactions to most foods, tinnitus, severe insomnia, a persistent feeling of being poisoned, blurry and double vision and exhaustion that would land me in bed with the lights off for weeks.

Paramedics came out one day and decided I needed to go to the hospital for checks as they thought I may have blood clots in my lungs. I resisted until a family member said I had to go.

This was the first time I’d been outside for months and I just remember shaking uncontrollably for hours in hospital. At some point, a family member left, angrily, it was all in my head apparently, and I haven’t heard from them for over two years.

I had to move into care shortly afterwards as I had no family support. Into a new area, with strangers, new doctors & carers. My health deteriorated further and I was eventually hospitalised for two and a half months. My experience of medical neglect, abuse & medical gaslighting in the hospital is too distressing to write about right now.

Since “long Covid” is an umbrella term, definitions of which include people as debilitated as I am and people who have lingering fatigue or cough, it’s unclear how many people continue to be as sick as I have been. Recent research suggests that long Covid isn’t just one medical phenomenon but a condition with multiple subsets and hundreds of recorded symptoms, including some that could be causing damage to multiple parts of the body at once.

This makes sense as my gut has never mended even though my liver count is now only slightly abnormal.

I’m not a medical expert, but I’ve had to become one to make sense of my new reality. I’ve had to research when well enough. Looking for the new evidence and any ‘breakthroughs’ people have had. Looking for solutions through, diet, supplementation and medicine. My medical records still show I ‘self-diagnose’ through efforts to find out what’s going on in my body. Another assault by my then doctor to dismiss long Covid. I was advocating for myself because no one else was.

At some point, I started logging all my symptoms. I tracked everything: my symptoms’ intensity, whether they came on suddenly or gradually when new symptoms appeared, the medications and supplements I was taking, the treatments I was trying, what I did that day, if I felt stressed, what I ate and drank. Nothing made sense.

I thought that if I collected enough data, I would eventually figure out what was going wrong. But no matter how much data I collected or how many correlations I tried to draw; answers eluded me. I knew that what was happening to me was different than ME/CFS, an illness I’d had for a decade. I could make sense of ME after so many years. It had patterns of ‘boom & bust’ with my energy. It would only put me in bed for a couple of days when things got bad. This was different, it was savage, and it felt life-threatening.

Long Covid is a physical affliction, but chronic illness, stretching over months and years, has a way of picking apart your mind and breaking your heart. It is a constant deluge of mental torture that slowly strips you of everything you used to be by taking away everything you used to do. I’d settled into a life of ME/CFS. I took the loneliness on the chin. However, this level of illness is too much. It’s not just existing, it’s living in terror of what part of my body is going to break next.

My body no longer resembles me on the outside, I now look like someone who hasn’t been outside of a dark room (apart from the hospital) for over 30 months. Long Covid has rewritten my core personhood on a cellular level. I can no longer trust anyone; I have no faith in anyone outside my online Covid groups.

I was cut off from my family for being very sick. We were on speaking terms before my first visit to the hospital. They knew the complications Covid infection may have on my immunocompromised body. That’s the very reason why I didn’t get the vaccine. A family member had researched it before I did. No one answers my calls. No one visits.

“The reason that patients are being minimized for so long is because it’s very, very clear that complex chronic illness doesn’t fit in this neat package of ‘Here’s an X-ray. You got a broken tibia,’” said David Putrino, the director of Mount Sinai’s Centre for Complex Chronic Illness, who has been working with patients with long Covid since early in the pandemic. “What we are finally proving, though, is that categorically, stuff is going wrong in the bodies of these people. Living with LC is the reason we have a high rate of heart disease, stroke and cancer. Covid is oncogenic. The virus is ever mutating within their bodies- in viral reservoirs, in their bone marrow, in their veins & most importantly, it is in their brains. Where blood goes, Covid goes.”

In the past two and a half years I have only had normal blood tests done. My fellowship on X (formerly Twitter) from the US and Canada have had all kinds of tests offered to them. X-rays, MRIs, CT scans, PET scans, tilt table tests, electromyograms, skin biopsies, carotid ultrasounds, microclots, neuroinflammation tests and more. I’ve learnt so much from them over the past few months after fighting on my own for two years.

The last time they tried to draw blood from me it was too thick to get a sample. There was no concern. They just left and said they’d try again another time. Those who know anything about long Covid being a vascular disease will understand this is quite serious. My blood is probably full of clots. I self-medicate with aspirin when I start to feel like I’m going to have a stroke. Apparently, it’s a lack of oxygen reaching the brain. I’ve also learnt that the brain fog everyone talks about isn’t. It’s brain damage.

I spent two and a half months in hospital, seriously ill with no contact from the outside world at the end of last year, completely bedridden. When I was discharged, I thought I was on the mend. This was in January, this year. I started getting out of bed more frequently, walking small distances with a frame. I was commode-free and able to get to the toilet.

Out of nowhere came my next demise. More powerful and disabling than ever. Today I am more ill than I’ve ever been.

Unfortunately, the latest research and the combined experience of my online X family suggest things are going to get worse not better for many of us.

Even at my lowest moments, I remind myself that I am incredibly fortunate. I have care staff on hand if anything goes seriously wrong. I am privileged to be under the care of an excellent care home which is rare these days. And I have some savings left (even though I’ve spent thousands of pounds on the next ‘magic pill’ in supplementation).

But not one day goes by, not one-quarter of an hour, that I do not feel very sick. Always in the back of my mind is the fear that I will never again experience the uncomplicated, illness-free joy of the life I used to have. This always becomes more apparent with the beginning of yet another summer I won’t see. I used to love being out in the sun. I haven’t seen it for three years.

Long Covid runs the show now. I know from experience that if I overdo it in any way, which can mean taking actions as small as sitting up for too long or trying to have a wash, I could make myself feel far worse, shrinking the tiny life I have left into something even smaller. At times, it feels as though this illness is punishing me for trying to live at all.

Every day, I try to accept that this is what my life is right now, that I should learn to live with the pain and my limitations, and that I should rest more and more. Being mostly bedbound for so long makes it incredibly hard to rest. That’s because being disabled with so many symptoms going on engulfs me. You can’t just get up and walk off your frustrations. You’re stuck.

I am scared of not getting better. I am scared of getting worse.

Without proven medical solutions to treat these conditions, I’m grateful that a formidable grass-roots community of long Covid patients has forged virtual friendships, sharing advice, stories and words of support in online X spaces. These people have kept me going over the last few months. They get it.

They have the same body dysregulation, the persistent feeling of being poisoned, the blood sugar spikes, the blood pooling, the damaged organs, the decaying teeth and the bewilderment that we have been left to die slowly and painfully while society ignores us, and medical professionals continue to neglect and abandon us. There’s a real sensation of grief and moral injury. There’s also a huge determination to go down fighting for some kind of justice. for recognition and for answers.

The only people I feel I can build relationships with nowadays are people with long Covid or other chronic conditions.

Along with patient-led initiatives, doctors and scientists across the globe are investigating possible root causes of long Covid. The most recent research suggests it’s viral persistence causing long Covid. The belief is that the virus never left our bodies, it’s in our blood and continues to wreak havoc everywhere. This theory makes sense in the long Covid community as we see people nearly five years in getting worse, not better.

My new friends in X spaces are, like me, deteriorating rather than getting better. We have medical professionals, scientists and other highly educated people attending who believe we’re seeing mass disabling and death similar to the AIDS epidemic. The parallels have been drawn and there is a hope for similar solutions in antiviral medications. Unfortunately, history shows us that these solutions take years to be developed and trialled.

As patients, we can do only so much to accelerate the pace of this important research. “What is needed now are more high-risk, high-reward funding mechanisms,” said Dr Amy Proal, a microbiologist and the president of the PolyBio Research Foundation, which studies long Covid, “to move things more quickly, because government grants can take up to two years to get, and that’s not going to work. These people need help now”

We don’t have time. The longer a person’s body is in a state of chronic illness, the harder it can be to recover fully.

For many, the pandemic seems over. But the threat is not over. Although vaccination and prior Covid exposure lessen the risk, people can still get long Covid, even a severe, debilitating version like mine.

As for me, my symptoms are more intense than ever before.

The curtains are being pushed aside now and what’s behind the veil is becoming a reality in front of everyone’s eyes. We’re over four years in and nobody’s coming to help us.

But I can hope.

I hope one day I will be able to take showers again, sit out in the sunshine and eat the foods I enjoy. To go for short walks and to study.Hope is all I have left. It brings me out of despair & keeps me alive. Just for today.

Your Stories

The Fabric is Torn

The Fabric is Torn

During this Pandemic, I learned that people who define kindness as remembering other people’s birthdays and anniversaries and hosting holiday

Read More »
Unspeakable

Unspeakable

UnspeakableBy CBG When I think of all the amazing, talented people who have been destroyed by long Covid fromchess grand

Read More »

Protected by Security by CleanTalk